# Little Farm Girl - Update



## Farmwife

We'll I guess I'll just write in this thread, instead of make new ones each time.

We went hiking today and of course many of you know how it ended.:facepalm: I held onto my 5 yr. old boy's hand and tried to convince him he was going to live and I won't let a bear get him.:runaway: My husband put Grace on his shoulders because thats how Princesses hike.:queen: 
We had a good time until..... the ride home.
 It started with Grace's right knee pain, then belly pain soon followed. She had a couple of minutes of right eye pain. 
For the first time ever I thought to ask her, if her knee does any thing else. She pointed and drew down her leg into her big toe. Any thoughts about that? I know about EIM's. I was wonder if any one else has that traveling pain that shoots down the leg and why? I hate to say it but she seems to be going backward a bit. Oh well, par for the course. 
:heart:I'm just glad to have her the way she is; then not have her at all.:heart:
I hope you all have a good week-end.:Flower:
:soledance:Farmwife


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## Sascot

Well at least you made it home before the bears got you .  Sorry to hear she isn't feeling good (funny how for alot of these kids the healthy things aren't as good for them - salads, uncooked veg, loads of exercise) but at least you all had a nice time till afterwards.  As for the leg pain, I'm not sure but I would think that all nerves running down the leg must go through the knees so if her knee is inflamed it might be pressing or irritating one of the nerves that runs to her big toe.  Hope she feels better.


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## Farmwife

Thank you Sascot. I never knew that exercise bothered them. WOW!
Farmwife


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## Suzysu

Oh no - so sorry she seems poorly again, poor her and poor you - I hope things improve again soon - as Sascot says - at least the bears didn't get you (this used to be a frequent fear of my daughters - despite me repeatedly telling her there are no bears in England!!). xx


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## Sascot

My kids should be glad they are not in South Africa where I grew up - the spiders alone would send many running for it, although funnily enough it was the itty bitty one with the red back you had to watch out for!
Just wanted to clarify - I didn't mean they shouldn't exercise just that they get tired and sore so much easier -probably because their little bodies are fighting their disease.  My poor son managed to just go and stand and watch a football match yesterday and he was shattered when he got back.  Wish I had my energetic boy back!


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## Farmwife

I don't know? Sometimes I think I would rather deal with a bear than a spider. :shifty:
I hate spiders!:runaway:

Well our Sunday did not go well. Grace by 10 had a fever around between 102-103. She has a cold. She's been trying to pee but can't. That's new. I thought UTI. However, no pain is showing up their. She had her first BM in 2 days. Hopefully things will straiten out. Tomorrow I have to take another stool sample for the doc to test for c. diff. I hope she doesn't have it again (3rd time). I'll sign off for now. Good night all.
:soledance:Farmwife
OH, that reminds me. Some one here said they can check stool for inflammation markers. What was the name of the test? Thanks again!


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## kimmidwife

Farmwife,
 Has she been able to pee? I would be concerned about that. Have her drink and if she still can't go in an hour you may want to take her to the ER. My youngest had a problem with UTI's for a while and thank goodness it seems to have cleared up.


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## Twiggy930

Farmwife said:


> OH, that reminds me. Some one here said they can check stool for inflammation markers. What was the name of the test? Thanks again!


It is called a fecal calprotectin test.


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## Catherine

Do have her checked out for UTI.  My middle daughter was hospitalized at the same age with a kidney infection.  Symptoms off and on fevers and vomiting.


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## Farmwife

Thanks every one. She (Grace) has no pain when she goes. She just says she has to go and can't. She acts as if it no big deal. She did go pee before bed and this morning. So she can go. On Friday we went to the doc and he took a sample and no UTI.
 We wanted a blood sample but he said no because the urine sample was clear. Very frustrating!:ymad:
I think if her fever shoots back up we'll take her to the walk-in and at least we should get a blood sample and hopefully see what her numbers are at. 

Farmwife


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## Suzysu

Sounds like a rotten weekend - I hope she feels better soon xx


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## Crohn's Mom

Hi Farmwife 

So sorry Grace is feeling so rotten 

I just want to add that if her urinating issues persist, you may want to take her back and insist on another urinalysis and bloods drawn.  Sometimes a UTI doesn't always show up in the urine test right away, but will a few days later.  Trust me, I have way too much experience with UTI's ! :voodoo: lol

Best of luck and I hope she starts feeling better quickly! :heart:


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## Sascot

Hope she feels better soon!


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## Twiggy930

Look into interstitial cystitis, it is caused by inflammation of the bladder.  I have had interstitial cystitis and the symptoms are exactly like a UTI but there is no infection present.  Interesting thing is that I have read the interstitial cystitis can go along with Crohn's... 

Hope Grace is feeling better soon.


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## Farmwife

Thanks Twiggy. Would a average urine test done IN a doc's office be able to show that! She had one on Friday and it was clear. I know a few (8-10 mo.) ago her urine had a trace amount of blood in it. They still haven't been able to say why.

Farmwife


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## crohnsinct

Sorry no advice cuz no experience with EIM's (spit spit, salt over shoulder, knock wood).  Just sending hugs to little Grace and hoping she feels better :hug:

Twiggy:  Is there anything NOT associated with Crohns? :lol:


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## Farmwife

Hi all!

   Well I think I'm on the verge of EN. Grace's symptoms are persisting. She now has a lack of appetite. 2-3 days of little food. Depressing
  I don't know what's worse. Have a girl following me around like a puppy begging you for food or putting a piece of triple chocolate cake in front of her and her taking one bite and saying she's full. I wish I had the second problem.:lol:

*So here's the question.* 
My doctor here is no help and we don't see the specialist until June. I'm thinking of starting it tomorrow. I'm going to just substitute it when she won't eat. Honestly I don't know what to get or what to look for in a drink or even what to do.
 Any thoughts? 

We also found out her bumps on her leg are called folliculitis. I'm going to ask if that's an EIM but I think I know the answer!:angry-banghead:


Sorry for the pitty party! 
My hubby is just glad I get it out before he comes home. :lol:


Farmwife


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## Sascot

So sorry she isn't feeling any better! It might be worth phoning the GI's secretary and asking if Grace can be put on a waiting list for any cancellations!  I find if you keep nagging (nicely), things sometimes go a little bit quicker. Definately out of sight out of mind with alot of doctors.
I have no idea what EN drinks are around apart from the one we used here in the UK - it was Modulen, but you would need a doctors prescription and advice from the dieticians for that.  Sorry I couldn't be much help with that. Maybe a pharmacist may be able to advise?
Having a pity party over here myself (Andrew still not great either)!


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## Farmwife

She's not on the cancellation list because my husband is a farmer and can only get certain days off. BUMMER!
Great idea about asking the pharmacist! 

Sorry to here your at a pitty party too. :hug:
Your welcome to some of my triple chocolate cake and anyone else that what's to eat at the party can have some.:mario2:

Farmwife


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## crohnsinct

Oh my goodness!  Move over girlfriends I am about to bust open the Nestle toll house cookie mix.  Long story...maybe I will post elsewhere.    

As for the EN...our doc went straight to Boost and Ensure...I know some might say too much sugar but that is what he uses...it is readily available (supermarkets and drugstores carry it...even Walmart)...and the kids don't seem to mind it (probably because of the sugar!).  Ensure has yummy dark chocolate flavor for mommies who forget to eat to:lol:


I will pray that Grace gets better soon.  Keep us posted!


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## izzi'smom

Hoping she is feeling better soon...and we used Peptamen Jr...it's one of the gentler ones.


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## Farmwife

Thanks every one.
 The EN has been put on hold for the moment.
 Her fevers are persist, her appetite is gone and she's none the better. 
I'm not going to watch her fade away again!!!!! 
Why does it take a child to be on death's door step for them to do something!!!!
Taking her to doc now! If he's doesn't listen I will be going to the ER! At least they'll do blood test!


Farmwife


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## Suzysu

Good luck - fight for your little one to get what she needs, thinking of you all xx


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## Tesscorm

I hope you get some answers!  You're absolutely right, medicine should be 'preventive' when at all possible!  But, all too often it seems to be 'reactive' once the issues become serious!

Good luck! :ghug:


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## crohnsinct

Go Farmwife Go!  You fight for your girl.  I hope you get answers and that she is feeling better soon.  Keep us posted.


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## Crohn's Mom

Good luck Farmwife !! Go get em momma !! 

Big giant squish hugs for you


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## DustyKat

I'm so sorry to hear about all this hun...:hug:

How did you get on at the doctors? 

Dusty. xxx


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## Farmwife

Thanks every one. I chose not to write about it for a while. To upset. 
I went to the doc with my sick farmgirl in tow. All I wanted to do was get some meds for my boy who has a bad sinus infec. and of course talk to a nurse about Grace. Let's face it I knew the doc would be to busy. I asked for the meds and to talk to the nurse. I got the meds 
and waited:shifty-t:..... watied:shifty-t:..... waited:shifty-t:......and waited.:shifty-t: 
I stood up with my head held high and said to the children we were leaving. 
Drove 20 min. home and called the docs office and asked for the nurse....
who picked up the phone right away! 
I'm not going to tell you every thing she or me said but I will say that night my dear husband looked at me and said we're on our own until the June appt..

Grace is still having fevers on and off. Her stool as I posted in another thread is orangish with dk. red. Other than that she's still happy. :thumleft:


I hope you all are doing well with you kiddo's. Have a great day!:rosette2:

:soledance:Farmwife


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## Suzysu

Can you phone the GI's office and see if you can get an appointment sooner? just explain wht has happened and how poorly she is? It makes me so cross when these Drs leave our little ones suffering. Big Hugs to you and your family xxxxxxxxxxxxxxxxxxxxxxxx


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## Farmwife

:bigwave:I would love to phone the GI. and move up the appointment. My husband is a farmer and really wants to go. He jump through hoops to try to get some one to cover for him for two days. That's one of the draw backs when you own a family farm.
I also would like to see what her stool does. WOW I never thought I'd say that.
I just want to make sure it wasn't a one time thing. 
Why is it we always second guess ourselves?:ymad:

Farmwife


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## Suzysu

:lol2: Yes it is amazing how interested in poo we become!! - Freddy's poo is often black, red, orange, yellow - GI guy told me it was because of the iron supplement, or what he ate - I am not 100% convinced!!

 Of course I forgot that it would be really hard for you guys to get away from the farm - I run my own business and even that is hard to get away from for appointments etc - and I dont have a whole farm to run!!

  One odd thing and maybe it is awful to say but these Dr's only seem to pull out all the stops if the child is really poorly - in some ways maybe having the appointment in June means that they will find more when they investigate? not that I wish your little one poorly for one minute but I mean if she is sick when they see her and has been for a few weeks maybe they will try harder to find out what is wrong?

  I just hope you survive until then If she gets really bad I guess you will have to go to the ER?

  Thinking of you :hug:


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## Farmwife

WOW, page two. I feel accomplished.
  Suzysu
My fear is Grace will have the best day of her life when we see the GI.:eek2: Not that I want her to be sick.:smile:

Farmwife


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## Suzysu

I know what you mean - Freddy was so sick february - May - stopped vomiting the week before the scopes and apart from the diarrhoea had no mouth ulcers, bleeding round his bottom - anything - no wonder it all looked normal!


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## DustyKat

Oh Farmwife...:hug::hug::hug:...how awful for you and your little one.  

I so feel for you and kudos to you for your control! Thinking of you hun. 

Dusty. xxx


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## crohnsinct

Farmwife said:


> WOW, page two. I feel accomplished.
> Suzysu
> My fear is Grace will have the best day of her life when we see the GI.:eek2: Not that I want her to be sick.:smile:
> 
> Farmwife


I know right?!  I live for the day O's thread falls off the first page!  And yeah kids are like hair...behaves when it is haircut day.  Oh and even if they are sick when doc asks how do you feel they sit there and say, "fine".  So frustrating!  

I really do feel for you having to wait for that appointment.  I find it hard to wait for O's next appointment and we have a dx and treatment plan!  

Hugs until then and healing thoughts to little Grace! :ghug:


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## Farmwife

Well we had a memorial day. We didn't get to do every thing like hiking. Grace is still not up to par. That's OK. My husband and son came in 3 hrs. later looking like drowned rats. It was 90 degrees with 100% humidity. I was glad we came home. We had a BBQ. 
:sign0085::sign0085::sign0085::sign0085::sign0085::sign0085:
Now onto the Q's.

Grace's knee is worse than ever. How do you treat it?
Do you let them walk on it or not?
Ice or heat?
Tylenol or nothing?


Tonight she had bad belly pain.:thumbdown: 
I laid her on the couch and said show me where. She pointed to 1 to 2 inches under her belly button. I put my hand there and I could feel the bowel passing the food or doing something. Sorry that's the only way I could explain it.
Is that normal? 
Where could that be? Small of large bowel?
So of course her symptoms are getting worse and her BM was some what normal. 
I can't figure it out!:yrolleyes:

I hope you all had a great day.

My new avatar is Grace at the Memorial day service. She was so cute singing our national anthem. You couldn't understand her but she sang with all her heart!!!!!:lol2:


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## crohnsinct

Make a joyful noise unto the Lord!!!!  She looks adorable!  

Sorry I can't be of assistance with the questions. Perhaps Dr. Dusty has some advise. 

ERGH!  So many people round here waiting for June appointments! I am praying that everyone receive some clarity soon!


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## Sascot

Poor little thing!  That is a very cute picture .  The inner working of the bowels are not my thing (ask me about muscles and I could probably help you) and Andrew had pain but no one could feel anything when his tummy was pressed.  
As for the knee, I believe ice (over here anyway) is not recommended but you could wrap it in a facecloth that is wet in cold water.  Keep giving her a paracetamol liquid (sorry don't know what Tylenol is) which so far we are told is safe for Crohns.  As you don't know what it is it's probably best to keep her walking around the house and short distances as it will stiffen up if she doesn't move it.  Hope she feels better!


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## Farmwife

Translation Please:ylol:

Facecloth=Washcloth:yrolleyes:
Paracetamol=Tylenol:ybatty:

I hope that's right. If it's not let me know what I'm missing.
 I love the Internet.:ylol:



Farmwife


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## Tesscorm

Poor Grace, so much for a little one to deal with!  And love the pic!

As for her knee, you can give Tylenol but not any nsaids (non-steroidal anti-inflammatory drugs - such as ibuprofen, advil, etc.) - nsaids can cause intestinal problems.

When Stephen's back hurt, he swore by Tiger Balm ointment (available at supermarkets, drug stores) - not sure if it would help her knee but it soothes inflammation.  As well, when Stephen separated his shoulder, we used Voltaren gel as he couldn't have any nsaids.  However, just a warning - Voltaren is an anti-inflammatory gel.  When I purchased it, the pharmacist (and Dusty here  ) was a bit concerned the some of the 'nsaid' would be still be absorbed.  I called the GI on call at our hospital and was told it was safe to use, however, I still used only a small amount and discontinued as soon as the pain was bearable.

Have no idea if this would help but I would also try to use a tensor band for her knee, although she doesn't have an 'injury', it will give her knee some support and perhaps help a bit???

:ghug:


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## Sascot

:lol:  Yes, your translations are spot on!  Language is a funny thing - friends here used to laugh at me because in South Africa we called a traffic light a robot. :ycool:


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## izzi'smom

Generally speaking the area beneath the umbilicus is small intestine...however the nerve endings aren't always completely accurate in the abdomen. Many times pain is related to peristalsis (the motion of the bowel to move food through the digestive tract) and periactin (hyoscyamine) is prescribed to slow bowel movement/ease pain.


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## crohnsinct

Tylenol makes a patch thingy ma bob (that is the technical term for it) and various members of my family have used them with great results.


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## Farmwife

Thanks Angie,:hug:
Not to sound like a total dunce.:ybatty: All though that's not hard to do.
Your statement above. What does that mean?:yrolleyes:
Does that mean the pain can travel? 
Could their be some kind of blockage or stricture?
Could my DD be having an alien baby?


From your simple Farmwife:lol2:


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## Suzysu

:rof: alien baby!! ha ha ha ha!!

Pain can be referred - in that the real source of the pain can be at a certain point but the person actually feels the like the pain is coming from somewhere else - so little farm girl could feel like her pain is coming from under her belly button or even (for example) radiating down her leg but the actual scource of the pain could be (for example) the right lower abdominal area - as if things were'nt difficult enough!!

 Does that make sense? Im not sure I explained it well? I expect if you google referred pain there will be a much better explaination!

 I hope she gets a break soon :hug:


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## Crohn's Mom

oh goodness Farmwife :lol: That's what my Gab used to call her "mass" before her first surgery last year...Alien Baby! She said for nearly a year straight that she had an Alien Baby in there and when it would hurt she would say "Mom, my alien baby hurts !" :lol: Funny, but not...you know :lol2:


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## izzi'smom

I think suzysu explained it perfectly! ...and no dunce cap here...I am sure if you tried to explain your profession to me I would have plenty of questions.  ...your new avatar is completely adorable...what a little doll she is!!!


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## Farmwife

2 good days and counting. YA!
Her belly, knee and sl. eye pain continue. 

But she's happy and for the BIG annoucment....:ghug:

She put on a pound of weight. 
YES WORLD a whopping whole pound!!!!:tongue:
That's the first gain in 3 months.



Farmwife


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## Suzysu

:cheers:
WHOOP! WHOOP! for 2 good days in a row and 1 whole pound of weight!!
Well done you and well done farm girl!!
 I hope this continues!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!:hug:


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## crohnsinct

SO AWESOME!  Now spit..spit...throw salt over the shoulder..knock wood..fingers and toes crossed lest we upset the IBD Gods!


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## Farmwife

:dance::allright:ika::us_flag::ladysman::grr1d::luigi::highfive::applause:anda::hippy::dog::emot-waycool::congratualtions::yoshijumpjoy:

All these faces is how I feel.

Happy, Happy, Happy.
I'm so happy I could cry.
 I was able to talk to the nurse from the GI. I learned more in 20 minutes on the phone with the nurse, then I have in three years of going through this hell with my daughter.

She actual set down at her desk and said tell me every thing! WOW
I explained the c. diff, the belly pain, knee pain, eye pain. Her going through flares. Everything! I asked her if c. diff could have caused all this.
She said yes!!!! 
However, she said let me explain. 
She could have inflammation in a  fold, bend or a tare, who knows at this point. The c. diff found it and attached to it. It's embedded it's nasty it doesn't want to leave. When the her little body was weak it flared. When it's strong it's suppressed. She said here's the 
MILLION dollar QUESTION....
 What is it? Crohn's or regular inflammation??? 
She said it's Totally possible for crohn's to do this. Of coarse the inflammation could have been caused from something else. We don't know. 
We'll have to wait till after the test. 
She even told me the test what will be ordered. 
She also said, none of these symptoms where told to them! 
She said I will be telling the doctor the WHOLE story and we will be keeping in touch with her GI. She said call with any questions.

Just to know a little more makes a big different! I know very well it could still be crohn's BUT knowing theirs a hospital that wants to help make me happy!


Farmwife


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## Suzysu

:hug::hug::hug::hug:

I feel so happy for you!! The nurse sounds great!! I think sometimes we just need someone to explain everything to us, and then we feel more able to deal with whatever life throws our way!! It sounds like little farm girl has a great team looking after her and hopefully you will get some answers soon - I can't believe they didn't know all her symptoms! - What test is she going to have?
really I am so glad you have at least some answers :ghug:


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## Farmwife

Suzysu,
All the hospital knew was tummy pains. TUMMY PAINS. :ymad:
He said NOTHING else. I was so mad. 
It just confirms that my doc didn't get it.
I forgot to mention the nurse I spoke with was from Infectious Disease Department.
The test will be and I thought this was a cute way to say it, 
the tube down and the tube up.:smile: 
Their a children's hospital. Can you tell. Lots Blood work. 
Did your kids have to fast for the blood draw or anything? I should call and ask.:yrolleyes:

Farmwife


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## Suzysu

tummy pains indeed hmmmmmmmmmmmmmmmm

Freddy didn't have to fast for any blood tests but I would call them and ask just in case - you dont want to turn up and find they can't do them if she has eaten.  There is a whole load of prep to do for the scopes - have they gone through that with you?

So glad they are nice and 'on the ball' so to speak! :smile:


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## Farmwife

Something interesting. The Infectious disease specialist up here said NO to c. diff causing the problems for years.

The Infectious disease specialist down state said YES it could. I believe the one down state. Also I was told once you have c. diff you will always test positive for it.
Does any one know if thats true?



Farmwife


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## Sascot

Not sure about the c.diff but that is so great - the nurse sounds wonderful. As far as I know you don't fast for the blood tests, just the camera up and down!  What a relief when someone takes you seriously!! :smile:


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## Suzysu

Im not really sure - They have never mentioned it at all with Freddy, I think once you have it you can get relapses? but isn't it more to do with them being on antibiotics for something else?


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## Farmwife

Yes. Antibiotics lower  "good" bacteria and the "bad" like c. diff has time to flourish and take over. 
The one and only hole in what the nurse said today is it could be c. diff this whole time is that Grace....
 wasn't on her first antibiotic until she was 1.5. 
So IF she got it after that. 
What was causing all her pains for a 1 year before that??? 
But I'm trying not to think of that know. 
Ignorance is bliss right now


Farmwife


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## izzi'smom

When you are on antibiotic therapy, it wipes out the good bacteria along with the bad. The good bacteria helps keep the bad bacteria (like c diff) in check. C diff only responds to two antibiotics (Flagyl/vancomycin). SO if she was on another antibiotic it may have allowed c diff to overrun her system and cause illness. 
This all being said, they need to test for c diff TOXINS. 
THe way I understand it Izz is a carrier of c diff, but it has never made her ill. SO she tests positive for it but it is not active; the c diff isn't making spores/she isn't contagious. 
WHen she first became ill, the third c diff test was positive (after being in the hospital for a few days///go figure on where it came from). She was treated with two rounds of antibiotics before being scoped/finding out it was actually Crohns.


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## Farmwife

Grace was on Flagly. 
She never had symptoms like diarrhea. 
The doctor was testing her for other reasons and we stumbled across that. The nurse said if it's higher up in the track you might not get that. 
Sounds just like crohn's doesn't. 
They did the stool test and she must have had
 enough toxin that she had it, right? 
Is there two different test for c. diff.
My hubby and I were JUST wondering if it was a false positive. 
I tell you Thursday of next week can't come soon enough. 
Oh, by the way her fever is back even though her cold is gone.


Do people with crohn's or UC have kidney problems?


Farmwife


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## Catherine

Farmwife

My daughter Sarah has never had diarrhea as a symptom.  If everything she a little the other way.


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## Farmwife

Thanks Catherine,
   I'm learning that crohn's is SOOOOOOO, misunderstood by people.
The two people I know have mild crohn's. So natural I thought that's how crohn's is.
Boy was I wrong and so are a lot of people.

Farmwife


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## Crohn's Mom

You know what Farmwife, 
I knew of 3 people who had Crohn's long before Gab was ever suspected of having it.  Those 3 people are all siblings.  From what I knew of them, they portray their own disease as kind of a "no big deal" thing to most people. I never understood what it was, and I for a while thought it was a "oh they have bad diarrhea" on occasion thing.  Then one day I started noticing the brother limping.  (we worked together and we were friends).  When no one could explain to me why he limped sometimes (and looked miserable but kept smiling), I decided I wanted to know more.  I went to the library (no internet then! LOL) and researched medical journals for hours and hours! I realized this was not just "diarrhea" and never treated my friends as such again after that day.  I don't think to this day that any of them know of my research then, but it changed my perceptions.
I know this is not what typical people do, but that's just the way I personally am.  I see someone/anyone I care about suffering and I want to understand it.
Ironic that my dear daughter ends up having it years later, and her case is honestly worse than all 3 of theirs put together.

Yikes ! I think I've gone off topic LOL.  What was my point again ? 
OH yeah...that you're right ...Crohn's is very misunderstood by people !! Its a shame really.


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## Farmwife

Thank for the reply.:hug:

I've notice I'm on the 3rd page. WOW!:smile:

Does any one know if kidney problems come along with crohns?

Farmwife


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## Crohn's Mom

Yes. Sometimes Crohns can affect the kidney. 
In Gabs case it was affected because of the mass that was pressing against her urethra tube and cause (temporary) hydronephrosis. After the mass was removed, her kidney was able to heal itself. (we had scans done to be sure) I'm pretty sure DustyKat 's Sarah had the same issue as well pre surgery.


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## Catherine

My daughter has what her GI called mild to moderate chronic crohn's.

This means the crohn itself is mild to moderate but because of the delay in dx as symptoms were not classic until 2 months before dx (but still no diarrhea) she had become very anemia and had severe weightloss.

This meant she end up on heavy duty meds as they were treating the symptoms not the level of disease.


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## my little penguin

:voodoos has kidney issues as well- not sure if the two are related or we are just lucky.


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## Farmwife

Well it's about midnight my time. 
I know your all asking what a crazy busy farm wife is doing up this late.
Can't sleep.:ysmile:
Trying to wrap my head around Grace.
 I've decided to call the Gi tomorrow. 
Now that the nurse reassured me it was OK to call with questions before my first appointment. That's what I'll do.
Grace's fever ( low grade) is back. 
For the first time she came up to me and said pain,
 put both hands on her back, one on each side and said pain again. 
She had an ultra sound done 7 mo. ago and it came back clear.
Some things going on.
I love that girl so darn much how can I sleep.
I don't know how all you do it


Good night

Farmwife


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## Catherine

We had two visit to our GI before our first scheduled appointment with our GI, due to my repeated telephone call due to weight loss.  Sarah colonscopy was also proformed prior to when our first schedule appointment was planned by our GI boss and dx prior to date of the first schedule appointment.


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## Sascot

I know how you feel.  I sometimes lie in bed then give up and get back up as I am lying worrying about Andrew.  Many's the time I've been on here around midnight .  Sorry poor Grace is suffering.  Hope the nurse has some answers for you.  I sometimes phone my community IBD nurse 2/3 times a week and apologise for bothering her but so far she's been very nice and never seems too annoyed :smile:


----------



## DustyKat

Hey farmwife,

T is right. Sarah did have hydronephrosis and Matt had the beginnings of it as well. As T said it is due to the swollen and inflamed bowel pressing against the ureter and causing urine to back up into the kidney and it then in turn swells creating pain. 

So fab to hear that nurse was so helpful.  Good luck with the Gi! 

Dusty. xxx


----------



## Suzysu

Im so sorry you have been up at night worrying - I am the same one day I am really worried about him and can't sleep wondering what is going on etc and the next day I convince myself that he is fine and I am overworriying about everything and making a fuss, then he has another bout of pain and I know he is just not right - I don't know if I am more scared about finding out there is something wrong or more scared that the GI will say that nouthing is wrong but he is still in pain.
Let us know what the GI says - I hope they are helpful - I think if you call lots it shows them how worried you are and helps them to take you seriously if you know what I mean!! big hugs xxxx


----------



## Farmwife

WAIT, WAIT, WAIT:ymad:

I've called her doc here to ask if the got they stool samples back. I asked them to check for inflammation. I still don't know if he agreed to it. I'll found out.

Called the nurse downstate. Did I mentioned their AWESOME!!!:smile: 
She said this is what you'll do... 
Go get a urine test. Make sure AGAIN it's not a UTI.
 If she's clear of that.
 CALL right away and tell us the new symptom. 
My hubby just said if we need to head sooner will do it. 
The cows can milk themselves. I WISH! 
Thank God for good a husband.

Farmwife


I never thought I say this. I hopes it UTI!!!!

Maybe if we went to the walk-in the would do labs? 
Of course, this Thursday she'll be doing labs down state. 
So do we want to put her through the trauma of needles again? 
Does the trauma of needles ever get better for your kids. 
What did you guys do to help them get over it?


----------



## crohnsinct

Page 3 AND a senior member!  You are accomplished:lol: 

So glad you have hooked into a great nurse and office.  It is so great when docs and nurses etc care as much as you do about your little ones.  I am  blessed to have very passionate, kind and understanding  peds, GI and nurses.  If I don't email them once a week they are calling here for the update.  

Now if only my hair cutter were as kind:ymad: Missed my appointment for a third time in 6 months (First time was in hospital, second stuck in traffic coming home from infusion) today because I was up with O till 2 a.m..  tummy pains and severe diarrhea.  I think it is just the reintroduction of food and she was mostly scared.  So sat down to rest before my appointment and fell asleep.  Missed it and now they are firing me as a client!!!!  Really?!  And they called with a nasty attitude...can I borrow your rolling pin? rder:

As for understanding Crohns...guilty as charged.  Whenever someone said Crohns I thought, "oh diarrhea and tummy aches".  So now when people say, "oh thank goodness it is just Crohns...she just has to watch what she eats" while I feel like getting super mad I try to remember I was that ignorant once...jyst didn't say stupid comments.  Certainly has taught me to NEVER judge anyone's illness or trials.  A swim mom just found out her daughter has scoleosis and has to wear a brace at night.  Her daughter was whining and the mom yelled at her and said, "what do you have to complain about look at poor O".  And that is another thing I have come to appreciate...stop comparing yourself to others...just because it isn't as bad as it could be it is still happening to you or your little one and hurts.  At least the silver lining here is I have become more understanding and compassionate for others....just not hair cutters who fire clients!!!!!!!!!   

Good luck with urine test!


----------



## Farmwife

Your welcome to my rolling pin. :rof:
But what will I use to roll out my pasty shells!:lol:

I hope they weren't that good at cutting hair. Sorry to hear that.:hug:
The ignorance of people is astounding. :yrolleyes:
Now you know why I have a rolling pin.:ymad:


Farmwife


----------



## Suzysu

Glad they are understanding and taking you seriously - and good luck with the urine test - I hope it is a UTI as well - what were her last bloods like? -keep us updated.

I don't know if the blood tests get any easier - I found it easier when Freddy was a smaller as I felt he wouldn't really remember it - I guess once they are a bit older then can understand more and you can explain it to them, and don't have to pin them down so it must get easier (I hope so anyway) - we have tried both spray and cream with Freddy, we are usually both in tears by the end!


----------



## Farmwife

Yes UTI.   YA/YA:smile:
They want her on antibiotics for three days.
I'm fearing that because of her past with c. diff.
She needs it. I know that. 
Here's something strange.
I was told today (AM) the c. diff will show up in her stool for 6 mo. 
BUT she had c. diff 3 mo. ago. The nurse from our doctors office said (PM)the test was negative.:yrolleyes:
Can anyone explain that?
They did do the test to check the stool for inflammation and it was negative.
So is that test always a reliable marker for crohn's. 
Can you get a negative and still have crohn's? 
Of course when Grace gave that sample when 
she was healthy before her down turn.

Farmwife


----------



## Suzysu

:ybiggrin:YAY for the UTI!!
I have no idea about the other stuff!! - just glad her Kidneays are ok - I guess because of her c.diff history they will have to keep a close eye on her xx


----------



## DustyKat

I don't know how long C diff would be delectable for but I don't think it would matter as such because a positive test should only be relevant in the context of clinical findings, some people are carriers. So if she is symptomatic of C diff and the test is positive then you treat it. If she is asymptomatic and positive then you do nothing. 

I don't think any test is 100% reliable. It would be possible to have a negative test finding but still have Crohn's. 

Dusty. xxx


----------



## Catherine

UTI infection, ask for renal reflux ruleout.  My middle girl has this.  This is where the urine urine can backflow, in my daughter this allowed infection to travel back into the kidneys.  Symptoms vomiting, on and off fevers, pain going the toilet, poor growth.  We were told that uti are not common children and more than a couple should be checked.  The treament pretty easy compared to crohn's. Rachel dx at 2 years and 3 months.


----------



## Farmwife

Thanks Cathrine.
We told the doctor at the walk-in clinic about Grace's health. 
She right a way asked if she could send her urine sample for a culture. 
She said given her past, where it comes from might be helpful
at her upcoming visit.
I will add your test to my ever growing list
to talk to the new GI about.:ybiggrin:

Thanks a bunch,
:heart:Farmwife:heart:


----------



## Catherine

Culture is good because you then find out what will kill infection best:voodoo::voodoo:

You also should get a repeat test in a week maybe 10 days after treatment to make sure the infection is gone.

Can't believe I am saying this but giving daughter antibotics everyday for 12 months to make sure the infection didn't come back was ease.  See what 5 months of crohn and led up has done to me. 

At the time this was a very difficult decision involving a surgery consult and the weighting up of risks. I hated giving my child antibotis.


----------



## crohnsinct

Wow Catherine!  Who knew?!  Great advice. 

Farmwife: so glad it looks like there may be an easy fix.  Hopefully she will be feeling her adorable self soon!


----------



## jmckinley

Farmwife, 

My son is 14, but we have always counted while they do the bloodwork...and I mean count. The nurses get tickled because when they get the needle inserted they are surprised Ryan keeps counting. He closes his eyes, holds my hand and counts...to 200 if that's what it takes to be completely done with a bandaid on! If he gets nervous and starts counting too fast, I slow him down. We started this years ago and now, he pretty much uses this method on his own. He's my hero!:medal1:

I also misunderstood Crohn's. It is so much more than a tummy issue!


----------



## Farmwife

Great advice!
We've been working with Grace with her numbers. 
I'll try that!

Farmwife


----------



## Farmwife

SORRY here's another question.:yfaint:

Is a UTI and constipation related?

She's on antibiotic for the UTI. She just had her second dose today.
She's has NOT gone in 4 days.:thumbdown: 
Two BM's before that were very little.
I'm pumping this kid full of water and fruit. Still nothing. 
She keeps trying to go but can't. Nothing to painful, YET. Thank God Almighty:thumleft:
Prune juice has done nothing for her.

I've looked on good old MR. Google:shifty-t: 
but I'm not getting any good reasons.

Farmwife


----------



## Sascot

Glad it was "just" a UTI :yrolleyes:.  Hope the antibiotics help.  I'm afraid I have no idea if constipation and UTI go together.  As for the blood tests, my son is 13 so he's quite calm about it (outwardly anyway).  We always take my ipod with and I sit next to him playing a game so that he can watch that and take his mind off it. Maybe you could take something with that she has to think about doing - blowing bubbles, spot the difference, hidden objects?


----------



## my little penguin

for blood work and IV's we use this:

http://www.buzzy4shots.com/

Buzzy is pricey but for the number of times he has been used - priceless.
He works ok for allergy shots.


----------



## Farmwife

MLP,
  I looked that up. How cute. Do you put in on after or while they get the needle or shot put in. I love how it looks. When money and time present it's self, I'm so getting one of those.    Thanks

Well Grace threw up. All over. She even threw up on the rug I just moved in my kitchen. Go figure! Of course she feels better. YA Well at least for now. 
Still no BM. 4 days and counting.
I hope you all have a great day.

Farmwife


----------



## Suzysu

Has she been on the antibiotics that she is on now before? - maybe she is reacting to them? does she have a rash or anything? My middle one reacts to both penicillin and erythromycin - has vomiting and horrible rash. I do hope things improve for you all xxxx


----------



## my little penguin

you use the "bee" about 30 sec to 1 min before and during.
We don't' use the wings- they are just annoying.
It has a slot for the "hospital issue" tourniquet . This way ti can stay on during the needle stick/IV.

We had one shocked because DS didn't even flinch with the IV. He was watching me and couldn't feel it because of buzzy.
the "Bee" vibrates


----------



## my little penguin

http://www.seattlechildrens.org/medical-conditions/symptom-index/constipation/



> When to Call Your Doctor for Constipation
> Call Your Doctor Now (night or day) If
> Your child looks or acts very sick
> Persistent abdominal pain over 1 hour (includes persistent crying)
> Persistent rectal pain over 1 hour (includes persistent straining)
> Vomiting over 3 times in last 2 hours


http://www.princetonol.com/family/columns/pedgroup56.html

explains why swimming/heat pads help constipation.
maybe a warm bath.


----------



## DustyKat

Keep an eye on the vomiting aspect of things if it persists and she still hasn't had her bowels open. If that happens you need to go to the ER. 

As to the needles, you can also purchase numbing cream/patches called Emla, they are sold over the counter here and work a treat! Love the bee lmp!  

Thinking about you guys, :heart:
Dusty. xxx


----------



## Farmwife

:dance:Thanks she just went.:dance:
These figures are my official pooh dancers!
The first part of the pooh was coated with blood.
 Not mixed in but coated.
Is that because she was constipated?

Farmwife


----------



## DustyKat

Phew! Thank goodness!  

The blood does sound like it is because of constipation. Perhaps a little trauma around the anus from passing hard stool. 

Dusty. xxx


----------



## Suzysu

:dance::dance::dance::dance::dance::dance:
YAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
gad she pooped! hope tomorrow is better xx


----------



## jmckinley

That's great news!


----------



## crohnsinct

Poop Poop Adoo!  So happy:thumleft:  

I was seriously holding my breath reading and getting to the end.  If I was this scared I can only imagine how you must have felt.:ghug:  

I would agree with Dusty on the blood but keep an eye on it.


----------



## my little penguin

:soledance: for her going.


----------



## Farmwife

Just an update-
Grace had blood in her stool tonight!
I mean blood. Dark red to almost black. I didn't even have to stain to look. 
I didn't even have to second guess myself. I wish I could.
She collapsed on our walk today. She was able to walk back but could not keep up with my very slow pace. She never complained about her knee but it was swollen. She told me it didn't hurt. STRANGE. 
Since passing her stool 2 days ago she has gone pee so much. It's like some one open the damn and it let loose.:ywow: I'm thinking her intestines were swollen with constipation was pressing some where around the bladder and holding things up. Which is why she got the UTI. I can't take credit for that idea some of you gave it to me.:ysmile:Now I'm back to her having problems holding it. I know she doesn't mean to go on the chair or couch. She can't help it. Poor kid.:kiss: 
Other then that she's VERY HAPPY.:dance:She's drinking like a fish and eating like a....kid.:ysmile:
:heart:Farmwife:heart:


----------



## crohnsinct

UGH!  Is it Thursday yet??????? Our little Gracie needs help!  Kudos for you for handling this all so calmly.  

Glad she is happy!


----------



## Momto2girls

Our Gracie's first symptoms of her GI distress were her bladder spasms and subsequent potty accidents. They started about 1.5 years ago. We first ended up at urology and then nephrology and we started her on miralax, as well as NO artificial dyes or colors (this makes it way worse) or lemonade or orange juice, or carbonated beverages -- they are all hard on the bladder. She got a lot better, but my telltale sign that she's constipated is when she had a potty accident. Her system is just really sensitive.

She has also been very low energy lately -- not taking long walks, and wanting to be carried. Though it comes and goes -- today was a good day. 

Hang in there! Isn't your appt on Thur!? Ours is on Wed!


----------



## Farmwife

Thanks,
I know I see the writing on the wall. 
I just pray the the GI doctor can see it too.


Farmwife

Yes it's Thursday.


----------



## my little penguin

Good luck on Thursday.


----------



## crohnsinct

AND Wednesday can't get  here fast enough!  

Big week/month for Crohnie follow up.  I pray everyday for these pumpkins!


----------



## Suzysu

Oh my goodness - I am keeping my fingers crossed for you, and know that Thursday can't come quickly enough for you guys xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx


----------



## izzi'smom

Good luck!!!

Izz is about a year and a half into needle sticks. 
She did Remi infusions, Humira shots, and bloodwork. 
Recently I stopped awarding "prizes" for our weekly Tacro levels (bloodwork). 

At the same time, she stopped crying about it. Done. I am super proud of her but figured she is at the point where she knows it is necessary and does wonderfully with it. I wonder if it was a big deal for her because it was a big deal for me. (?) Hoping your appt goes well and your sweetie gets settled quickly!!


----------



## Sascot

Good luck with the appointment, sounds like something really needs to be done poor little thing!! Will be looking out for your post to see how it goes!!


----------



## polly13

Hope thursday goes well, i will be thinking of you.  You remind me of myself and Lucy a year ago, while we were awaiting diagnosis.  it is such  a worrying time.  Hope you get the answers you need.


----------



## Farmwife

:bigwave:Well I'm off line for the night. 
Have to pack. Why do I over pack. 
I've already have a mountain of clothes 
and that's just for the kids.:yrolleyes: 
I already told Suzysu that my poor hubby is worried 
they'll want to keep his little girl.
I told him not to worry. I don't think he's listening. 
I thought women were suppost to be the worry warts!:facepalm:
Thanks again to every one. :hug:At least I feel a little prepaid and not so scared.
Well....I'm still scared. Oh,...you know what I mean.:lol:

:ghug:Hugs to every one till then!

Farmwife


----------



## Suzysu

:goodluck: Thinking of you guys xxxxxxxx


----------



## crohnsinct

You go girlfriend!  

Hey since you are gone for a few days and obviously not making any mini pastry quiche shells,  can I borrow that rolling pin?  

XOXOXO


----------



## Farmwife

No, you can't borrow my rolling pin!!!:ymad:
What do you think I'm using for protection in the big city?:lol:



Oh shoot. I'm suppost to be packing.:tongue:


Farmwife


----------



## jmckinley

:sun:Good Luck Tomorrow!:sun:

I hope you will finally get some answers. How sweet, tell Daddy to quit worrying and go hug on his little Farmgirl!


----------



## Momto2girls

Good luck! You guys do great and take good care of each other! We'll be waiting patiently to hear all about it!


----------



## Tesscorm

I haven't had much time to come on here...  just quickly skimming and trying to keep up!  But wanted to wish you good luck!  Will be thinking of you!


----------



## Twiggy930

Good luck with your appointment on Thursday!  I hope it all goes smoothly and you get some answers.:sun:


----------



## DustyKat

Good luck hun! Fingers, toes and everything else crossed!...:goodluck:

Dusty. xxx


----------



## Crohn's Mom

Best of luck to your little Gracie !!

:ghug::ghug::ghug:


----------



## kimmidwife

I haven't had a chance to get on in a few days. I just wanted to wish you good luck tomorrow. I am keeping my fingers crossed. Can't what to hear how the appt goes!


----------



## Suzysu

No news???????????????????????????? Does this mean they have kept little far girl in????????????????? fingers crossed she is ok xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx


----------



## Sascot

Thinking of you, hope it went well - or as well as these things go!


----------



## sandramaggie

Been away and just catching up - hope everything is okay - horrible waiting for the news - big hugs to you all


----------



## Farmwife

:bigwave:Hi everyone!
Well I can sum up the appointment like this. HURRY UP AND WAIT!!!!!!!!!!!! The nurse checked us in. I informed her that I had wrote a case history (3 pages) on Grace. She asked if she could let the doctor read it before he came in. 
So I gladly did. He came in soon after. 
Doctor was nice. Very personable. He thought Grace was just a cutie! 
Good thing. All mothers want to here that.
 He asked some more Q's. He said that he "idea's" of what it could be, he didn't what to say yet. :ymad:
   We decided not to tell the Doc what we thought it could be. We were just curious if he would put that together also. 
  He did. Just after he said he didn't want to tell us until after the test were done he says, It could be Crohn's, UC or the one were it's a problem with glutton. Sorry I don't recall the name. :yrolleyes:
    She has already had the test done and she did not have it, but he wanted to do it again. 
   He checks her belly and said it feels bloated. That kind of shock me because that's how her belly always looks. He said she needs to be on Miralax. He also gave us hyoscymamine. I did not hear why he wanted her on it because once the Doctor mentioned her (Grace) cuteness, Grace became a hand full trying to prove her beauty to the Doctor.:lol: Which means I was constily telling her to sit and hush. Now to the shocker. He orders only a blood test. So here is where my panic comes in. Some of your stories here started racing through my mind and I boldly said.:nonono: OK Doctor let's say the test come back clear what will you be doing for her then. I wanted him to know, we were not going to stop pushing for answers. He said, we'll start eliminating more stuff. OK I start to feel a little better. He made the appointment four months away. The doctor reassured us that the blood test will be in by Monday. HE will call us then. He also said we are to keep in-touch. He made a point to say that right now Gracie doesn't seem to be in a bad "flare". We are to call if she gets worse. That made me feel a little better yet. I don't think my hubby is to happy. I really think he wanted more answers then what we got. I already told him on the way down that wasn't going to happen. Poor guy! So that's the story. 
   I'm not going to even mention they horrible night on a blow up mattress:yfaint: or the near death experience driving in the BIG city (you city folks are crazy):ymad: or being depressed because, not only am I older than the Gi but I'm twice his size. My hubby looks like a giant next to him. I do think my man like being bigger than him. He was always puffing up his arms standing next to him. He likes to show off for his woman. Poor guy.:rof:
 Well I'm off to check other posts.

Oh, I forgot who told me the trick for drawing blood out was to count. IT WORKED! Thanks. She didn't cry at all. The nurses were very impressed that the 3 yr. old could count that high.


Farmwife


----------



## crohnsinct

Cute AND smart!  That's our Gracie!  So glad you survived the big city.  Even more glad that you are on your way and that the doc wants you to keep in touch.

Keep us posted on the blood results and of course the daily goings on.  Glad your home...you are almost out of pastry shells.


----------



## Farmwife

Does any one know how much Miralax powder to give a 3 yr. old?


Farmwife


----------



## Johnnysmom

Glad to hear everything went well.  We had the same experience.  The blood tests were CRP and SED rate.  They wanted Johnny scoped right away though and had us in the next week.    Let me know if you are back in the big city again.  We move in July but would be happy to have you if you come back before that.  No blow up mattress either!!!     Tiffany


----------



## Farmwife

Thanks Tiffany,
  Once we got to the hospital we thought it was beautiful. Everyone was great and friendly. The Doctor seamed to know his stuff. 
It's just always nerve racking when you take the country folk off their farms. 
Plus to make matters worse it was rush hour and the sun was in are eyes.

Farmwife


----------



## crohnsinct

ERGH!  It was forever ago that I used Miralax.  I do remember using the cap to measure so it isn't exact.  Doc would just say 1/4 cap, 1/2 cap etc.  I have a bottle (brand new bought for O's clean  out that we never used) and it just says adults a full cap...I know a bunch of young ones here have used it...hopefully someone will be along shortly. 

Did the doc not say or were you too busy admiring your strong, strapping hubby?


----------



## Farmwife

The doc did not say! 
Too your second question... your just jealous!:tongue:

:rof::rof::rof:
Farmwife


----------



## my little penguin

WE use miralax daily here for DS.
An adult dose  is 17g or 1 capful - there is a white cap inside the pink cap with a line on it.

For clean out we had ds take 14 doses in 6 hours.

I think we started him on 1/2 capful or 8-9 grams.
He is currently on 13-14 g a day- we use a kitchen gram scale.
Too much he has D too little and he screams in pain since he has rectal prolapse and crohn's colitis.

He is 8 though so I would call in the morning and ask the GI nurse how much to give. Typically it can take up to 3-4 days to work so don't be surprised.
If she has not had any soft BM's by 4 days then you need to call.
Ask your GI nurse if they want you to call sooner.
:ghug:


----------



## Catherine

Glad the visit went well.  Glad he wants to stay in touch.


----------



## crohnsinct

LMAO:rof:


----------



## Tesscorm

Too funny!  :rof:  OMG, you literally made me laugh out loud!  :lol:   

But I'm certainly glad the visit went well and it's a relief to know you can call on the GI if you have concerns!


----------



## kimmidwife

My 3 year old is also on Miralax for chronic constipation. The dose we were told is half a capful. I actually give her a drop less then half. There is  line in the cap that shows the halfway mark and we fill it under the line. I mix it with anything she wants to drink. Shake it up well or it will fall to the bottom and be clumpy. Costco sells their brand of miralax in a 3 pack that is the best price for it. The bottles are large but you will go through them faster then you think.


----------



## jmckinley

So glad you finally had your visit with the GI. I hope that you get some answers. The hyoscamine is great for abdominal cramps! On first diagnosis, we had a Dr that acted like he knew what it was too. I didn't like that assured attitude until he was right....then I loved him because he knew how to treat it. Best of luck and keep us posted!


----------



## Suzysu

HI! - I have to go to work in a minute so cant write a long one - Im just so gald Gracie is ok!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! YAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I was starting to get worried, glad she was brave for her bloods etc, glad you all survived the big city!!!! - Hyoscamine for abdo cramps - maybe Freddy needs some of that! - I will ask!!
:thumright:
PS- does anyone know why I have weird adverts at the bottom of some of my posts?? and how I get rid of them??


----------



## DustyKat

Thanks for the update!  



> We decided not to tell the Doc what we thought it could be. We were just curious if he would put that together also.


Ahahahahaha, love it! 

Sounds like the doc is in your corner which is fab, mind you judging from the above if he wasn't he soon would be! :lol: 

Good luck with the blood results hun and I hope you have solid answers soon! 

Dusty. xxx


----------



## Sascot

Glad the visit went well!  Such a brave girl not even crying for the blood test - my daughter just cries thinking about having one :facepalm:
Hope the blood test gives some answers, glad the doc seemed good.  HOpe you get answers soon.


----------



## Suzysu

Sounds like Monday will be 'results day' for us both!!!! Hope you all have a good weekend! xx


----------



## Farmwife

Need some help!
:sign0085:
I gave her second dose of Miralax today. Less the 2 Tablespoon, not even that much. With in one hour she had liquid oo:.
That's to much for her. RIGHT? How can she go from being backed up for 2-5 days and then give her just a "little amount of miralax" have liquid oo: To me that doesn't make sense.
Should I be giving her fiber? Keep in mind now she's tell me she has right lower back pain and her pee-pee hurts ( no she doesn't have a yeast infection. Plus her UTI was not caused from yeast or any other Bactria).
Thanks for all your responses, you guys have been great.:rosette2:

Farmwife


----------



## Suzysu

Can you call the GI nurse for advice?
I have never used miralax - what is the active ingredient - sureley there are dosages for kids?or is it that it affects each individual in different ways? maybe she just needs a little less?
I would worry about a kidney infection if she has lower back pain and it hurts to urinate - I think they need to culture her urine rather than just do the dipstick - maybe take her to the weekend Dr? How is she in herself?
 It's all such a rollercoaster isn't it!
Hope you get a break soon. xx


----------



## Farmwife

The Doctor should be calling Monday with the blood test results. I'm making a list of things to ask him. That one is on their. I'll just keep lowering the dose until it's just right.

They did do a culture it came back negative. Right now the pain is only once in a while, only lasting minutes. I will be taking her in if they keep up. I don't want her kidney to have problems. Oh, it doesn't hurt her to go pee.

Grace is happy and antagonizing her poor brother.
 I'll have to give that boy some ice cream.

Farmwife


----------



## crohnsinct

Hmmm I think it is more typical for the Miralax to take awhile than work so quickly.  How does the 2 tablespoons compare the with he half capful that MLP and Kimmidwife mentioned?  

Again Kudos to your calmness!


----------



## Farmwife

About the same! She only had the loose stool this morning. Nothing since then.

Farmwife


Does any one know why my new signature won't show up in  my post???


----------



## crohnsinct

Well then it could be a case of the newer poop taking the Miralax and slipping out around the older harder poop.  In time the older stuff will come to. Sounda like you are on track.  

Lovely conversation huh?


----------



## jmckinley

My son's system is very sensitive to the action of the miralax too. He only took half dose once a day and he is 14. Lowering the dose should help. It shouldn't work immediately though.


----------



## Suzysu

I think crohnsinct is right maybe it was watery poo leaking round some constipated stuff? maybe give another (perhaps smaller) dose of the miralax and see what happens?? Odd she has kidney pain and culture negative, and renal parameters ok - maybe she needs an ultrasound? 
deep breaths and keep chanting 'inner peace' 'inner peace' 'inner peace' 'inner peace'.......


----------



## Sascot

Never used anything to help constipation so no idea on that sorry!  I agree that it might just be flowing past the compacted stool.  Might be worth getting her urine checked again just to be sure - when you say her pee pee is sore, could it be that she is maybe just not wiping properly and the skin is just a bit irritated.  May be worth using a barrier cream for a few days.  Bet your list of things to ask is getting longer and longer :lol:
"inner peace, inner peace, inner peace" - sounds like something we can all strive for :ylol2:


----------



## Johnnysmom

Just lower the dose, my son is very sensitive on Miralax too and it is just a matter of finding what does is right for her.  They can have liquid at first if there has been any stool impacted.  And usually there is a liquid stool if you have given too much but only once, she won't continually go like if she had Diarrhea.  Glad it is working for her and she doesn't need a large dose!


----------



## Suzysu

any results yet??????????????????/ Fingers crossed for you guys xxxxxxxxxxxxxxxxxxxx


----------



## Farmwife

Nothing yet.
I was wondering the longer it takes blood test to come back, 
the better news it will be RIGHT.

Patience is a virtue. I never learned it.

Of course it doesn't help when Grace is slowing her eating and has for the first time in months *woke up *in pain 2 or 3 times this week.

Farmwife


----------



## Suzysu

I hope you hear soon - for better or worse - you need to know either way what you are dealing with - but I always think that if things were bad then they would phone sooner rather than later.
Poor Grace - hows the EN going? will she drink the shakes? I came accross something interesting the other day I don't know if you can get it in the US but it is some kind og powder that makes a nuritious drink but has slippery elm in it which is supposed to help reduce GIT inflammation - I keep meaning to look it up - if I find out anymore I will let you know.
I hope tonight is a good night xx


----------



## Sascot

Thinking of you both!  Hope you hear soon.  Patience isn't one of my virtue's either :ysmile:


----------



## crohnsinct

FWIW - in my experience delay is always good.  Bad news came fast and hard.  He could be saving his calls until the end of the day also.  I will have to bring my computer to swim practice so I can stalk you for a post:shifty:


----------



## Suzysu

I will have to go to bed soon - not sure I can wait till morning - fingers crossed xx


----------



## Farmwife

Good night. 
I have to remember theirs a six hour difference.
The lady from the blood draw place said we should hear on Monday.
Maybe the doctor does thing differently.
This is such a lovely view from my bubble. I'll just stay here for awhile.

farmwife


----------



## Suzysu

Still haven't managed to go to bed yet!! - really really must or I will be in a very grumpy bubble tomorrow!!!! Hope you hear soon xx


----------



## jmckinley

Just stopping by to see if you got bloodwork results. I am thinking about you guys. The waiting I know is frustrating. I'd be calling them tomorrow. I usually have to call and I do it in the morning so they have all day to look up the results, track them down if they don't have them and call me back!

Check back in tomorrow!


----------



## Suzysu

Did you call them? I hope you hear soon, keeping all fingers and toes crossed over here!! xxxx


----------



## Farmwife

No I haven't call them.
It might sound strange but the longer it takes to hear something, 
the better off I feel.
Leave me in my bubble.
Plus I've been put in charge of finding out what it takes to trade in our 
2003 SUV for a new one and I have NO idea what I'm doing. 
So my mind is else where. 
It realy is pretty in this bubble. I can see the ocean from here.
Thanks for asking. 
Ta-Ta I'm off for now to find my dream car.

Farmwife

Oh, I almost forgot. A poem and a question for you all.

Miralax. 
Is it her friend or foe. 
I don't know?
She can't go!


----------



## Suzysu

Glad you are enjoying your bubble!!!! We had to trade in our old car earlier this year - luckely the choice of replacement was limited due to lack of funds!! but it was still very stressful!!!!
She still can't go? Increase the dose of Miralax? Im guessing you are doing all the high fiber fruits etc? maybe you should call the GI nurse not only for results but to check how much miralax is too much?
I feel you may be the expert on poo colour!! - Freddy had his first (well first for a while) dose of senna last night and this morning his poo was solid but VERY green and covered in slimey yellow mucous - any ideas?


----------



## crohnsinct

Farmwife: you're a poet and didn't know it!  

Excellent advice from Suzysu.  If you don't like being pushy like us NYC folk you can call the GI nurse under the guise of asking about Miralax and "oh while I have you...are her results in yet..doc said he would call Monday"  You never know, maybe they have a wrong number or something!

Suzysu: see you really do belong here...we love poo!  Thanks for the description and question (just to make us feel needed) sorry I don't have weird colors just consistency and blood..hope some other experts can answer.


----------



## Tesscorm

Farmwife - I'm sure you are beyond all the home remedies but thought it won't hurt to share what Stephen did in the past re constipation...

We were on our way to the first game at an out-of-town hockey tournament with another player and his mom and Stephen says 'oh, by the way, I'm having a some pain and I haven't gone in a few days!'   OMG, this was fairly soon after his diagnosis and I was in a panic!    Out of town, husband wasn't with me, without my own car (had carpooled), he's got 5-6 games to play in 3 days - and NOW he tells me!  :ywow:  As per advice from here!, I ran out and bought prune juice and yoghurts - when we returned from the game, two or three times over the evening, I gave him juice, yoghurt and coffee (which he doesn't like but which I heard can help :lol.  He went 3-4 times the next day!  As he never drinks prune juice or coffee, it may simply have been the 'shock to the system' of these two???  Or maybe it was the combination of all three at once???  I don't know but if, by chance, you haven't tried these, maybe try a little...??? :heart:


----------



## jmckinley

Suzysu,

We have experience with green poo also. I read that bile is actually green when it first enters the system, but turns brown through the digestion process. If he has inflammation, maybe everything is moving through too fast. Our green is usually very mucousy and loose. Nice morning conversation


----------



## Farmwife

We tried prune juice for two weeks. No real improvement.
Yogurt MAKES her sick. She has a milk allergy
I did increase the Miralax.
The only thing that works is to give her two doses of Miralax through out the day.
She's not in pain. She happy. Her appetite is starting to leave and her urine output has slowed. I'm watching for UTI's now. If she gets fevers like before, I will take her to the Doctors
Suzysu-
   Grace's poo is always green and soft, well usually.

Farmwife


----------



## crohnsinct

Farmwife: and if you can get off the farm for a few (in between car shopping and baking) and into a pool, lake etc and have her swim about, we found swimming helped with my two who were encopretic.  

Suzy: Yes!  JM is right!  I remember reading green meant moving too fast so maybe that means senna is doing it's job?  Although I would think the backed up old poo would come first and since backed up not green...ugh sorry of no help.


----------



## Suzysu

they still haven't called? - That must be a good sign? Fingers crossed it is. Did you find a car? xxxx:shifty:


----------



## Farmwife

No call.:ymad: I'll call in the morning!
Shouldn't you be sleeping soon? You type horrible when you don't sleep enough.:ylol:
Yes we found two SUV's. We'll look at them tomorrow. My hubby was walking out the door said how much will the new insurance coast us. 
I FORGOT ABOUT THE INSURANCE!!!!!!Oops :ybatty:
I'll have to check tomorrow before he gets in from chores.
Now got to bed!!!!!


Farmwife


----------



## Sascot

I get so confused with all the time zone differences on this forum!!  Happy car hunting, glad she's feeling ok at the moment.  Enjoy the bubble :ysmile:


----------



## my little penguin

Hopefully - they will return your call quickly in the Am.

Or you could use my plan B- call every day until they call you back:hallo3:


----------



## kimmidwife

THey still haven't called? Don't these doctors love to leave us hanging. If I were you I would call tomorrow.


----------



## Farmwife

Sorry guys,
 I'm still trying to wrap my head around the Miralax thing.:ymad:
I gave her a little over a FULL dose at 7am. 
Then 12 hours later she has watery explosive D. 
Is that supposed to happen? 
My hubby is concerned about the liquid stuff. He doesn't think that's very healthy to be that way.
 The GI said she needs to be on this. 
I don't know. Any thoughts. 
I hope to call in the morning. Hopefully I'll talk to the nurse.
 Does anyone else get their blood test though the mail if it's a good report?


Good night all.
Farmwife


----------



## Tesscorm

Now that she's gone (even if it was D), try keeping at a constant Miralax dose (sorry, no experience with this so I don't know what the proper dose is...).  It may have been that it took a while for her body to 'adjust' to the Miralax and, now that she's NOT constipated at the moment, perhaps a steady dose will regulate her???  Sort of like getting the Miralax to a therapeutic level...  (Hope that made sense  )


----------



## my little penguin

Miralax- is a 3 day cycle- so what you see today may be from 3 days ago.
WHen you increase or decrease only do it three days at a time.
So 1/2 capful three days- if its all liquid then decrease to xyz for 3 days etc..
and sometimes even when you give the same dose crohn's kids just have D


then don't go for a day or two just to confuse things.
meet my son.
WE sometimes get blood test results in the mail as in everything was normal signed doc X.
but only have I have at least spoken with the nurse who says everything was normal.


----------



## crohnsinct

O.K. seriously?!  I think you have been more than patient.  Time to give GI a call and see what is up with results AND ask about the miralax plan. You can't be expected to wing it like this on your own bubble or no bubble.  Awww poor hubby...how cute how he worries about his princess! 

I have never gotten results for O in the mail.  I only get calls and even then only get calls if they are bad and we need to drag in sooner than planned.  But this is totally different.  You are a new patient trying to establish a plan...Call him tomorrow...I maintain...they could have a wrong number (that has happened to me) or lab understaffed and backed up (oops like so many kids here)  etc.  

As for the GI saying she needs to be on it...maybe maybe not but from what I was told it seriously is not harmful to them so no harm no foul....CALL HIM!


----------



## Suzysu

I can't believe how much these Dr's just think we are happy to sit arund and wait while our little ones are ill.

Our Dr said that when we started the laxative with Freddy, we were looking at 1-2 weeks to 'clear him out' so maybe you do need to give it a little longer but I would ask about this when you CALL THEM!!!! xx


----------



## Farmwife

I called!!! The nurse apologized over and over again. She was very nice.
:dance:She said her test look "OK".:dance:
 No signs of high inflammation. No Celiac decease.
BUT...... Her hemoglobin and white blood cells low. Not danger levels YET. He want her back to our GP to check her levels in a month. He also put on the order ALL health changes have to be reported to him. I did tell her about the lack of appetite and low urine out put and how she's in abdominal pain an hour or so before a BM. So there I did it!!!!
Now I'm off to go get a new SUV. Do you think we could have found a SUV around here. NOOOOOO! It's a hour away. I'll enjoy the trip with the hubby and kids.

Why would her hemoglobin and white blood cells be low?

Farmwife


----------



## Suzysu

:dance::dance::dance::dance::dance::dance::dance::dance:reddy's
HURRAH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
and well done for phoning!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Freddy's haemoglobin and white blood cells are also often low - could be a lot of things depends on other blood results etc - did she say that red blood cell count or PCV were also a bit low? what about iron levels? could be a little anaemic? (this is the case with Freddy - persistent iron deficiency anaemia) this can be caused by a lot of things. White blood cell count is often low with infection - viral or bacterial depends on which type of cell is low. 
All in All I would take this as a positive sign! (although it hasn't given you any answers, it gives a good starting point). 
Did you ask about the miralax?
Enjoy the drive and the new car!!!! :kiss:


----------



## crohnsinct

:thumright: Good girl!  I am so proud of you.  Don't you feel better now? 

I am glad that the results all look good but sorry that it still leaves some questions.  I am so praying that the miralax will get her back on track and that is all she needed.  

Sounds like the doc is a keeper...wanting to be kept informed like that...how awesome!!!  Those offices can get super busy so what I have found that works in the keep us posted department is getting an email address and just sending the updates...this way no misinterpretations, forgetting info etc...then as I need to send another I attach it to the previous.  Our IBD nurse told me it really helps even if I probably send too many and annoy the daylights out of them.  

Have fun getting the car!


----------



## jmckinley

Yay! That is great news! So glad you called! I know it still leaves some question, but at least you know that inflammation isn't the issue.

Have fun getting the new ride!

One thing for future bloodwork...make them give you the actual numbers. I have found that keeping a record myself helps me.


----------



## Tesscorm

Glad to hear!!!  anda::sun:anda: And he sounds like a wonderful doctor!

Have fun today!


----------



## kimmidwife

Glad to hear the good news! Will he discuss the low WBC and HGB with you?


----------



## Farmwife

4 hours stuck in the car:ywow:.
4 hours watching my hubby crawl underneath every car to see if it was rust free.:shifty:
4 hours with kids that were hungry.:emot-nyd:
4 hours and NO CAR!:yfaint:
I guess we might be looking at more SUV's on Friday. Can't wait.:ymad:

I did talk to the nurse about the miralax. She said it was normal. Give it a couple days to straiten out. 
They will be sending all blood work to my Doctor here. 
Their great about letting me get the results printed out.
 I'm going to go tomorrow and pick them up and talk to the nurse and or Doctor about what was said. I'm interested in what his reaction will be.

Farmwife


----------



## Catherine

Farmwife

Glad the test showed no inflammation.

Reason why the hemoglobin is low?How low?  Have she iron levels been tested by iron studies?  Vitamin B12 and folic? spelling.

These are tests have given you somewhere to look for answers.


----------



## my little penguin

Woo hoo for the good blood work.
If things don't improve make sure to ask for a second check as well.
DS was normal blood wise for while before he was dx but had other symptoms.


----------



## crohnsinct

Oh my!  No car?  I hate car shopping!  

Glad to here about the miralax.  Which doc are you going to to get the print out.  Certainly not the doc in the far away, filthy, crowded, scary city.


----------



## Farmwife

You New yorkers wouldn't last a day on my farm. :ymad:
Maybe It would knock some of that big city attitude right out of you.rder:
I just kidding don't show up and beat me please.:runaway:

My doc here will have the results for me.

Farmwife


----------



## Farmwife

Good evening all.:soledance:
No SUV after looking today my huddy decided to wait another year.

Well Grace took a turn downhill again. 
She was "off" this afternoon. Crying, grumpy and looks pale and sweaty. 
She has no fever.  Her belly was in pain but her knee is the big culprit.
 Now it seems like her left knee is the problem. She walk a few feet and falls. She feel on her butt while this was going on and started screaming, hurt, hurt , mommy hurts. She was holding her lower back. I question how effective Miralax is working for her. Is there something else thats comparable to Miralax? I'll be calling the GI nurse tomorrow to ask about seeing one about the knee. My Doctor has always brushed off her knee pain. So I will go over him. Well I'm off for know. I think.:biggrin:

Farmwife:heart:


----------



## Catherine

Poor baby, sounds like that really knee to be checked out.  Maybe physio?


----------



## Farmwife

Well by the time Grace got to bed the pain was causing weakness of the leg and her ankles were hurting. A couple of times today she acted like she stepped on something that cause the bottom of her foot to hurt. I could see nothing to cause that. Do any of your kids have that?

Farmwife


----------



## Suzysu

Oh no Im so sorry Grace is bad again - I hope the GI nurse is helpful, maybe you need a referral to a rheumy as well? Poor thing, and poor you. Thinking of you guys xxxx


----------



## Sascot

So sorry poor Grace isn't doing so well.  My son hasn't really had any joint issues so no advice there.  Just keep pushing the docs, have you tried filming her when she is like this? Sometimes I feel like Andrew is always fine when we are actually in the doctors office and they do not believe me as to how bad he really has been.
If you could film her walking and falling down maybe they would take it more seriously.  Sending warm thoughts your way!!! :hang:


----------



## crohnsinct

Did you call GI about this development?  I saw on another thread GP suspects maybe leaky gut but was wondering what GI said.


----------



## Farmwife

The GI nurse said increase her Miralax every three days until you get 1-2 BM's a day. Then she said be careful to watch out for constipation problem. WHAT????? Miralax isn't working. What do you think she has. The nurse said watch for it. FINE!!!
 The way I'm taking it is the GI wants monthly blood draws so when we meet with him in 4 months we MIGHT have a clearer picture. They have not send the results yet. The nurse up here was upset because she's called twice but no answers yet. They did send all other paper work so I have that. The nurse from our family doctor said Their thinking maybe leaky gut. 
My hubby is bring in the first cutting of hay so it's crazy busy here.

Farmwife


----------



## kimmidwife

Hi Farmwife,
Do you think the nurse meant watch out for diarrhea? To much miralax can cause diarrhea. My little one gets a half capful daily but if her stools get to loose or she starts going a lot of times a day I will skip a day or two and start again. My daughter also suffers with a lot of joint issues. The more her crohns is flaring the worse it is. When the flare calms it improves.


----------



## Farmwife

No I don't think so. I thought about that too. She said constipation problems. I was thinking like a blockage or something.
  She still has yet to poo today. Tomorrow will start day number three. She still not eating much and is content to sit and play.
I've also making sure she drinks and eats fruit to help her.
Farmwife:ghug:


----------



## Clash

When C was flaring he complained about his knees and later on ankles often. The GP blew it off but for 5 mos. that knee pain complaint never ceased. Hope they get this all figured out for your precious lil farm girl!


----------



## Twiggy930

Farmwife said:


> Well by the time Grace got to bed the pain was causing weakness of the leg and her ankles were hurting. A couple of times today she acted like she stepped on something that cause the bottom of her foot to hurt. I could see nothing to cause that. Do any of your kids have that?
> 
> Farmwife


We have experienced something similar.  At the end of March my son suddenly was unable to bear weight on his left leg and has been using crutches ever since.  After much investigation we have still not been given a clear answer as to what is going on.  I am fairly convinced, as is the physiotherapist, that he has inflammation in the sacroiliac joint in his hip.  The earliest appointment we have been able to get with Rheumatology is in OCTOBER!!!  I too have found it difficult to get a doctor to take the leg issue seriously, I am currently trying to find a doctor that will effectively advocate for my son so that he gets seen by Rheumy earlier.  Are Grace's joint issues always in the same joints or does the pain move around?  If the pain/weakness is always in the same location I think some physiotherapy would be good, especially if you can find a physio that specializes in children, ours has toys and a DOG!  Also if it persists swimming is good exercise for kids with sore joints.


----------



## Farmwife

Oh WOW!!!
  I told my Grandma about her joint pain and what it did and she said "baby girl I 'm willing to bet you money that it's her sacroiliac nerve." Yes even though I'm 3o something, she still calls me baby girl.
My Grandma has had this problem for 10 years. She said that's what happens to her. Yes it can be pain full time but some times it's like she stepped on something painful.
Translation Please-:yrolleyes:
sacroiliac joint = sacroiliac nerve
physio= physical therapist


----------



## Farmwife

:sign0085:

This might be a good questions for anyone brighter than I. 
What it *mucosal diseases*? Plus what are the names of these diseases? The paper I was given states he wants to follow up with possible mucosal diseases.

Farmwife


----------



## Suzysu

Poor little farm girl - I reckon day 3-4 and no poo and not eating needs a trip to hospital? she needs an xray at least. 
I didnt think of the sacroiliac nerve as my kids dont have problems like that but I certainly have - exactly the same - terrible pain shooting down the leg, suddenly unable to bear weight - tell the doc.
I am thinking of you and keeping my fingers crossed for poo today xxxx


----------



## DustyKat

Mucosal would be referring to the mucous membrane and that would be the lining of the bowel. I guess the types of things you would be looking at are Crohn's, UC, other types of colitis, bacterial infections, leaky gut syndrome...I imagine there are others??

Sending hugs to you and your little princess, bless her...:ghug:

Dusty. :Karl:


----------



## my little penguin

:ghug:
The GI nurse was talking about constipation.
SInce sometimes you increase and increase- then watery diarrhea- so you decide to drastically decrease  only to have constipation again.
Unfortunately its a very slow process with miralax and finding just the right dose is hard.
 I would recommend a good gram (kitchen scale)- .
YOu place the cap on the scale then turn the scale on.
This zeros  the scale.
then pour the miralax in the cap.
That way she is getting the same dose for 3 days.
I know with DS if we are off by 1 -2 grams it can really make a big difference in how he goes/feels.
Also plenty of water otherwise the miralax can not do its job of pulling in the fluids to make the stool softer.

Good luck


----------



## Farmwife

:thumleft:WE HAVE POO!!!:thumleft:

Wow, if you had come to my teen-age self and told me that YEARS later I would be excited about poo, I would have knocked you out. 
I was a city girl back then.:lol2:

Farmwife


----------



## Farmwife

_*One question!*_:sign0085:
 If you had to DEMAND one test to see what's going on in your kid, what would it be. I mean like ultra-Sound, MRI.......Stuff like that.
I was thinking MRI to see if their's any blockage of any kind. 

Farmwife


----------



## Suzysu

:dance::dance::dance::dance:
YAY!! - for the poo!!!! - keep going with the miralax and the fruit, and the fiber, and the water, and all the other things!!!!
I'm not sure which test I would ask for, but I think I would ask the Dr to justify why he or she was or was not going to do something if that makes sense? Then you would understand their way of thinking and what they thought may be wrong.
  I think the problem is there is no totally fail safe test for most things - I mean I have had animals that have shown classic signs of a disease and yet when tested for that disease ie in a blood test for example - it comes back normal!! 
  I suppose ultra-sound and MRI are not too invasive - so maybe they would be a good starting point - I would be guided by the GI.
  I expect other people would know a lot more about all the different tests than me!!
glad she has pooped!! (I also never imagined I would be so excited by poo!!)
:hug:


----------



## Johnnysmom

I think the ultra sound and MRI are only helpful with blockage, strictures, etc.  I think if she had inflammation it might not show up.  We had johnny at the E.R. a month before his diagnosis and nothing showed on the CT except thickening bowel loops which they werent concerned about.  Colonoscopy and upper endoscopy is the only way to see inflammation but they did a stool test on my son and that showed protein in the stool.  The Dr said that occurs because the body can absorb it properly due to inflammation.  He was pretty sure it was IBD at that point. It is not invasive and inexpensive.  Dr Kunde did this so you could ask him specifically about it.


----------



## Farmwife

Thanks for the advice.
 I guess at this point in time I'm not to worried about inflammation. The blood test said that's normal right now. I Thought the nurse said a little elevated but not unexpected. I want to see if their or any blockages or strictures. My dear hubby is at the end of his rope with doctors because of his only little girl. Keep in mind it hay season and cherry harvest will be coming soon. So I think his just stressed. I told him the Miralax needs time to work. He's going along with it so far. I thought about doing one test to ease his (our)  minds.
I think I will be asking my doc up here schedule one. Let's just say. If it comes back negative then we know it's mostly inflammation causing it. I know it sounds weird but something more is off with Grace's BM's.
 It just doesn't feel right.:yrolleyes:

Farmwife


----------



## Suzysu

You know when things are not right with your little one - so go with what you think is best for her - even if a test comes back negative it means you can rule things out xxxx


----------



## Johnnysmom

I will say Johnny's inflammation markers were normal 4 months before his diagnoses when his peditrician first ran tests.  He had lost weight for a year and a half before that's so his crohns was active at that time so normal inflammation markers don't necessarily mean no inflammation.  Keep the G.I. informed, you know when things are not right or getting worse.  They knew my son was sick when I kept calling.  Miralax always worked after about 2 days.  He would take a tablespoon.  I found it easier to measure out that way.  Hang in there.  (((((Hugs)))))


----------



## Farmwife

Thanks. Her Miralax is at 3 Tbls.
But to day she had liquid with in 3 hours of taking it. Madding. I'll see what happens tomorrow. The nurse told me to only change every three days. Today she is happy. BLESSING!


----------



## Catherine

Sarah iron levels were the thing off, then anemia developed caused by low iron.  This amenia was not helped by iron tablets.  We also told she couldnot possibly eating of much red meat as we said.  This started to occur two years before dx.  A ultrasound showed enlarged glands  6 months prior to dx.  This test should have led to gi appointment as per notes on the test but we were told the test was clear.

If are our altrasound had been read by our gi it would have shown inflammation as this is how he read it 6 months later.


----------



## DustyKat

> We had johnny at the E.R. a month before his diagnosis and nothing showed on the CT except thickening bowel loops which they werent concerned about.


That is interesting Johnnysmom but of course we were coming off the back of Sarah. When Matt first went to the GP he was able to palpate a mass in his RLQ and he said there and then he thought Matt had Crohn's. He went for an ultrasound and the first one was  clear but the GP and GI weren't convinced so he went for another one then next day and they were able to visualise it. He did have a raised CRP but he was basically diagnosed by thickened bowel loops. I don't expect anyone without our history to be diagnosed like that but I do think they should have looked further into it with your boy when they saw that on the CT.

Farmwife, as Johnnysmom has said an absence of abnormal blood results doesn't always tell the true story, particularly in children. Sarah had normal test and blood results right up until the night before emergency surgery. My rule of thumb now is that I will never believe them unless they match what I am seeing in front of me. I am not saying that this is the case with Grace, hell Matt's bloods show every little thing before he even feels it! :lol:, but just to trust your instinct if the bloods say she is fine and your little girl isn't reflecting that. 

Dusty. xxx


----------



## crohnsinct

I agree more tests are needed.  Sorry I am not an expert but let me ask you this..If they do ultrasound and say nothing will you be happy or will you then want colonoscopy and endoscopy?  If so, then just ask for that to start with..why waste time and money. 

Although another way to look at it is this...you are asking the doc to move quicker than he planned soooo why not get him to agree to test and let him pick the test...a compromise of sorts.  

I know..again I am of no help at all except to vote in favor of tests.  You know your daughter and from everything you are telling us this isn't a perfectly healthy kid. 

Oh yeah and YAY POOP! :dance:


----------



## LittlebitsMommy

Thinking of you. Sorry I am of no help.


----------



## Farmwife

You are lot of help. Seeing the picture of the two of you always brightens my day.
I'm praying for you both.

Farmwife


----------



## kimmidwife

I think I would ask for the colonoscopy. It will give you a more definitive answer as some other people said. MRI's are also pretty good for showing inflammation but are not 100%.


----------



## polly13

Hi Farmwife
I have been meaning to come on and check on grace for the last couple of days except our internet connection here in rural ireland is absolutely crap (but thats another story!)

I am so sorry to hear that little Grace is feeling bad again.  I would agree with some of hte other posters re: the bloods, Lucy's bloods were pretty normal in the middle of her last flair up and she had visable sores around the anus area, so as dusty said if the bloods are not tallying with what you are seeing with Grace - and as you know your daughter best of all maybe you should speak to the GI about further testing. 

I also worry about the constipation, we spend a full year treating lucy for constipation (Paed at local hospital) and all we were doing was masking hte problem.  Would you be willing to have a colonoscopy/upper  GI endoscopy, might give you a clearer picture. 
You and little grace are in my thoughts,.


----------



## Farmwife

I would do the scopes for her but....... I think my Doctor up here would be more willing to do ultra-sound or MAYBE a MRI but I'm pushing it there. I read through the GI's notes and he would talk to us about possibly doing the scopes if she's not better. The next aptointment is in October. I will be calling the GI this week also. October is to long to sit and wait. Thanks for asking. How's your kid doing?

Farmwife


----------



## polly13

Shes doing great farmwife - thanks - it has taken us a full year to get to this stage but there is light at the end of the tunnell and now that she is well she has almost forgotton that she was every sick if that makes sense.  Really hope you get some answers for Grace - Lucy was ill for a year before she was diagnosed so I know what you are going through, you know something is wrong and nothing moves quick enough so that you can get a little relief for you child.  Chin up and keep going you are doing all you can.


----------



## jmckinley

Hey Farmwife,

Just wanted to check on you and Grace. Sorry she is still having so much trouble. You push those Drs. I pushed, and the Dr turned red and got angry, but we are getting some results. Of course, my people pleaser self wants to go back and say "sorry", but I'll let him think I am angry till the job is done.  Hee Hee  Hope you get some results soon!


----------



## crohnsinct

October is unacceptable and your GI sounded like a caring guy.  I think if you call and post him on what is going on he will see the need to see her sooner and do some looking (see the city hasn't taken away all my hope in humanity)...if he doesn't go all rolling pin on him!


----------



## Suzysu

I think crohnsinct is right - october is too far away, all Freddy's tests were clear and even he is going back in 8 weeks. - Call him and explain what is going on. -Sending you big hugs xxxx


----------



## izzi'smom

i am just catching up-ssorry for all that you have been dealing with! I agree-scoping her is the way to go at this point. i know it's more invasive but at 3, she will likely need to be sedated for a mri as well (it is a long exam), and what you really want to know is how her bowel is looking.  good luck and hope she's feeling better shortly!


----------



## Farmwife

Hi,
Grace is doing better. We have found that fiber and Miralax work best to clean her out. My latop had water spill on it. Wish I could blame the kids.:yfaint: I will check in when I can. Using my sister phone. CIty folks and their fancy phone.:lol2:


----------



## Sascot

Glad to hear Grace doing ok, but definately too long to wait to October.  Naughty mom getting water on the laptop- I would never do that!  Of course I am always telling my kids not to spill anything on the laptop - only to choke on my cereal and get milk on the keyboard (oops) :whistleinnocently:  Thankfully I cleaned it up and it kept working ok, so I never had to break the news to my poor husband.


----------



## my little penguin

woo hoo on the fiber and miralax- glad you found something that is working.


----------



## Suzysu

YAY!!!!! xxxx


----------



## crohnsinct

Woohoo! Time for our poop dancing bananas! :banana::banana::banana::banana:

Yeah I would never spill water on my computer...probably because I am either drinking coffee or wine:rof:


----------



## izzi'smom

Crohnsinct, if I ever make it to CT, we are going to have to drink (and spill) wine together, since you almost just made me spit coffee all over my laptop lol! Farmwife, that stinks about your computer...does this mean you'll have to go shopping in the big city with all of the "city folk"?  Keep that sweet Gracie healthy!!


----------



## Farmwife

Hi, my hubby decided to see if the laptop would start up and it did. It's not acting right. We'll still have to send it off to Dell. Thank God for accident coverage.:lol2: That means being with out the laptop for 10 - 14 days.:yfaint: 
  I'm still trying to figure the poo thing out with Grace. It worked wonderful for 3 days and then no poo for two days. She doesn't seem to be in pain. I DID talk to the nurse and she said each change you make with the Miralax and fiber works on a three day cycle. Grace is back to normal color and firmness in her stool. I'm happy about that. 
OK, we got the blood test results back. 
Her red, white, hemoglobin and her hematocrit are all low BUT not danger level yet.  Why? My hubby was the first to look at the results and said do you notice something about most of the levels. A lot on them were just .01-.04 from being low.:sign0085: 

To all that think I hate the big city my humble and heartfelt answers is, I DO(just kidding). How in the world can I go to the big city to get a compute when I need a stupid computer to give me direction to get there with out being killed!!!!!:ylol:

Well I'm off for a while. The laptop is starting to smell. They told me it's in possible to have a fire in your compute. We'll see if it's true.:ylol

Farmwife


----------



## Suzysu

Hope the lap top gets well soon!!

and hope Grace poops again soon - at least she is ot uncomfie.

A lot of Freddy's blood results are just above the lower (or upper) limit - I think it is just something to keep an eye on if they are just within the normal range.

We will miss you while your lap top is away!! xx


----------



## Tesscorm

Yes, hurry back Farmwife!    Hoping Grace begins to feel better and better while you're MIA!  (And that Suzysu doesn't need to cook any special meals while you're away! :lol


----------



## Suzysu

:rof::rof::rof::rof:

I am only not laughing myself as I am worried my sides may split open as you are all so funny


----------



## crohnsinct

OMGosh!  I needed to laugh tonight and you all are cracking me up!  

Ang: absolutely we are always party ready in CT!!!

Farmwife: If you lived in the city you could walk down the street, drop the computer off, go next door to have a latte and pick it up on your way home!!!  We will miss you while your gone...who will remind me of how old and nasty I am? 

Suzy cooking...bahahahahahaha


----------



## Catherine

Hi 

So all the blood levels are just above low.  Was this the first time these blood were done for farmgirl?  Did they test iron levels, folate? & b12?

Glad to hear she is happy.  Good luck with getting laptop back and working.


----------



## DustyKat

Good lord! I hope you haven't gone up in flames Farmwife! 

	
	
		
		
	


	







> We will miss you while your gone...who will remind me of how old and nasty I am?


Me?!? Heck might as well start now before you get too comfortable! :kissgrits:

Dusty. :biggrin:


----------



## crohnsinct

OMGosh!  LMAO AGAIN! :rof::rof::rof: 

Well I am leaving tomorrow for a week of mission work so you girls won't have me to kick around (no electronics to distract us from our work)...oh hell who am I fooling you will probably kick me around even harder because I can't fight back...mean country bullies.  

MLP: if you find a cure while I'm gone send up a flare!


----------



## Suzysu

no farmwife and no crohnsinct - what ARE we gonna do!!

Hope you have a fun week!

xx


----------



## Tesscorm

Crohnsinct - Have fun!!!


----------



## crohnsinct

If by fun you mean driving 5 hours with 6 middle schoolers, sleeping on a hard floor in a school with no a/c and cooking meals for 100 people non stop all day and cleaning bathrooms shared by 100 middle schoolers and all on about 5 hours of sleep then yes I should have a blast:ylol2:

All kidding aside, I am sooooo looking foward to this trip and serving alongside one of my daughters.  There is nothing like a week of service and devotion to God to set your heart and mind straight.  After the past 5 months, it is such a blessing for Olivia and I to get away for a whole week and share this and I can't wait to meet the people we are helping! 

BTW - on top of stomach ache last night, soft poop and stupid blood decided to make an apperance today.  Here's hoping it is just a cameo appearance and they move along quickly! Monday starts week 4 after Infusion...the trouble maker week:voodoo:


----------



## crohnsinct

I really should get to that packing.  Speaking of packing...I have a bunch of extra prednisone left over from after the taper. As a good luck charm I think I will pack it just in case because you know if I pack it I won't need it but if I don't Murphy or Sod's law will strike!


----------



## crohnsinct

Suzysu said:


> no farmwife and no crohnsinct - what ARE we gonna do!!
> 
> Hope you have a fun week!
> 
> xx


Bahahaha enjoy because when we get back we will be ready to go!  

I hope all your little pumpkins have a wonderful week and please know that I will place them all on the prayer list and will continue to remember them all by name in my personal prayer time and for those of you lurking we will pray for your kiddo's too!

Right...packing!


----------



## Sascot

Just wanted to pop on and say have a great week!!  I will have a word with Sod and Murphy and tell them to leave you alone :lol:
Look forward to hearing how it went - hope O has a fab time too.


----------



## DustyKat

> If by fun you mean driving 5 hours with 6 middle schoolers, sleeping on a hard floor in a school with no a/c and cooking meals for 100 people non stop all day and cleaning bathrooms shared by 100 middle schoolers and all on about 5 hours of sleep then yes I should have a blast


Suck it up city girl, that is what we country folk call livin' it up! :rof: 

Have fun hun and I hope all stays settled for O! Sending loads of love, luck and healing thoughts your way! 

Dusty. :heart:


----------



## Farmwife

DustyKat said:


> Suck it up city girl, that is what we country folk call livin' it up!


I don't know if you were joking DustyKat but you speak the truth.:lol2:

Grace is well. Still struggling with Miralax and fiber. 
DID YOUR DOCTORS EVER TELL YOU THAT YOU CHILD'S JOINT PAIN COULD BE GROWING PAINS?????????????????? That was mentioned to us. I looked it up and I'm annoyed that's not even close to what Grace has suffered from. I wish it was.
I made contact today with the rheumatoligist for Grace's joint problems.
They will not becoming up here till October. At that point I might just make an appointment down state. Her pain is now affecting her ankles.
Laptop is still not fixed. Still have to send it away. At least I can type on it for a couple minute without it shutting down. 
I hope all is well with every one.


----------



## Twiggy930

Hi Farmwife,

Glad to see your computer is letting you sneak onto the forum now and then.

I would only accept an answer of joint pains being due to growing pains when all other possibilities had been eliminated, and even then I might not agree.  I think it is a plausible answer when a kid is otherwise healthy but given the prevalence of joint issues with IBD it really isn't a symptom that should be brushed aside.  

Is there any way you can get to see rheumatology sooner?  Our GI was not very concerned about my son's leg issues which has really NOT impressed me.


----------



## Suzysu

I agree if Grace had nouthing else wrong then it could just be growing pains I know some people say they can be very painful - but the fact that Grace has intermittent fevers and loads of other symptoms surely suggests that there may be something else going on? I can't believe you have to wait till October - can you get on a cancellation list?
 Hope your computer gets fixed soon and hope little farm girl is managing ok.
 I just find it so amazing that none of these Drs seems to be concerned about children in pain - so frustrating.
xxxx


----------



## DustyKat

Sucks about the computer hun...:voodoo: 

No doctor ever suggested Sarah's knee pain was growing pain BUT...at one point I thought that's what it was...

	
	
		
		
	


	




...never did make the connection until after she was diagnosed! 

I surely hope you can an appointment before October!  Poor little love...:hug: 

Oh, was I joking? Maybe a teensy bit...:ylol2:

Dusty. xxx


----------



## my little penguin

One thing to ask about would be periodic fever disorder
It also "fits"


----------



## crohnsinct

I'm baaaaack!  Will post on O's thread bout trip etc. 

Country folk...lmao! 

I also would not accept growing pains and think it is a good idea to go downstate for an earlier appointment even if that does mean going to the big, bad, dirty, scary city.  I also would try to get her on the cancellation list for an appointment closer to home.   

Last I recall you were thinking of asking the GI about some look see procedures.  What ever happened with that?  

Did you get your new car?


----------



## Farmwife

Hi all.
my lap top is stil not back. I miss it dearly. My sister phone will have to do.
The farm is busy.

Grace is doing ok. 
she is eating fine. I have done EN in the mornings for Grace.
I will be calling the GI tomorrow. Even though she seems fine she now had 3 BM's with a lot of mucus in it.
 Any thoughts?
No test have been planed yet. She will have a blood test on friday.
I'll type more another day. Phone is acting up.

I hope all is well with every one.


----------



## Tesscorm

Glad to hear all seems 'stable' 

My understanding is that mucous is caused by inflammation but not 100% sure???

:ghug:


----------



## Sascot

Glad she is doing alright just now!!  As for the mucus, I have no experience with that but I would agree it would probably be inflammation - just like if you have a cold/cough the mucus builds up in your sinuses or lungs.
Hope your laptops sorted soon.  I remember ours breaking down once -took them 4 weeks to send it back, it was torture!


----------



## Suzysu

Glad all is ok(ish) and hope you get the laptop back soon! xxxx


----------



## crohnsinct

Our GI says mucus could be inflammation but also could just be simple mucus that people get from time to time. Nothing like nice concrete answers huh?  O gets bad mucus and then it goes away.  I would mention it to GI. 

I am glad other things seem to have stabalized good luck with the blood tests and getting that computer fixed!


----------



## Suzysu

Freddy often has mucous - our GI people really don't seem bothered (although I do wonder if Freddy turned up missing a limb they would just shrug and go 'meh')! xx


----------



## Twiggy930

Suzysu said:


> our GI people really don't seem bothered (although I do wonder if Freddy turned up missing a limb they would just shrug and go 'meh')!


:rof::rof::rof::rof::rof::rof::rof::rof::rof::rof::rof::rof::rof::rof:

I have at times had the same feeling.


----------



## crohnsinct

Sorry girls I can't relate.  O's GI is so controlling and obsessive I sometimes wonder if he thinks she is HIS daughter:ylol2: But I have to admit, given the alternative I rather like his involvement.


----------



## Farmwife

Hi all,:rosette1:
 Grace had her blood drawl and she did good. Counting with her brother does work well. They said the test results will be in this afternoon. YA! 
However, my doc is on vacation along with every one in the office. NOOOOOO! 
They'll be back on Monday.  

I called the GI nurse and she will tell the doc what's going on with the mucus in the stool. She thought it was no big deal at first but 
I informed her the mucus was like rubber not what comes out of you nose. TMI, sorry! She found that interesting.She also brought up that the mucus started with the heat wave. It's a 103 here.
 Of corse, my air condition broke in the SUV. No we haven't got a new SUV yet. I know longer care what we drive as long as the air works.
   Do your kids have a hard time with the heat?
:heart:Farmwife:heart:

Laptop is still broke. I don't know when I'll be at my sister's next. Second cutting of hay started today. So it will be busy AGAIN!


----------



## Suzysu

Good luck with the results - let us know what happens - we are on holiday but if the place we are staying in has a internet connection I may be able to check in from time to time! xx


----------



## crohnsinct

Suzy:  You _MAY_ check in from time to time...Come On!  Admit it...a day with us is like a day without sunshine :sun:  You MUST check in for your daily dose of abuse...speaking of which does holiday and hotel = you not cooking?  Just saying.....


----------



## Suzysu

Actually I am looking forward to a week with NO abuse (apart from the kids obviously) - it is self catering - so there is every chance we may not all survive my cooking for a week!!!!


----------



## Tesscorm

Enjoy!!


----------



## jmckinley

Farmwife,

Ryan has a terrible time with heat. He doesn't say he is hot, but he doesn't sweat. So he looks pale and just can't go very much at all. Sweat beads alot along his lip, but he doesn't sweat anywhere else.


----------



## Sascot

That's great that Grace did so well with the blood draw!  Hope the results are good.  Andrew doesnt' deal well with the heat, makes him feel quite faint/sick.
Gee, I'm glad we are going on holiday to the Mediterranean in the middle of July :ybatty:.  Think Andrew and I will be hiding in the nice cool ship while my hubbie and daughter enjoy the heat :lol2:


----------



## Farmwife

*Oh, how I love my LAPTOP!*
If I were a poet, I would write endless sonnets of joy about it.
If I were a singer I would sing the most beautiful melodies about it.
If I were a computer technician I would have FIXED IT MYSELF!!!

THINGS TO LEARN FROM ME:
1-Always buy the best accident coverage you can. It's worth it.
2-Do not place laptop near sink. (crohnsinct not a word):yfrown:
3-Always look into your girl's cup before tipping over.
4-Get a back up (like a tablet or a fancy phone) for the INTERNET so you don't go into convolutions while it's getting repaired.

Hi every one,:rosette2:
As you've guessed my laptop is back.
Where do I start. I'm waiting for Devos children's hospital to call back.
Her change of stool with the mucus is still present. Her pains (abdominal, knee, ankle and eye) are picking up. The GOOD news is she's put on all the weight she lost. She lost 6 lbs in one and a half weeks and it took her 8 months to put it back on. Her labs came back and some of the levels are still falling or raising depending what they are. Grace's GP just told me to "refer all questions to her GI". That's fine with me:thumleft: but they had her lab results to send to the GI. So they will be hearing from ME! She's doing EN in the morning and evenings with her meal that she just stares at.
I took her off Miralax and just using phylum husk fiber. Seems to be working all right. Stool is a little harder today. I couldn't regulate the Miralax to where it was a real help. I might put her on a half tsp in the mornings and see it that will be better. 
I hope you all are doing well.

Farmwife


----------



## crohnsinct

Well now seriously...not a word but a few...if you weren't so busy in the kitchen making all those fancy pants dishes trying to be the cooking queen of the forum your laptop wouldn't have been anywhere near a sink!  

I am glad all her care is now going to be coordinated in one place.  I am super glad you have found something that works for her.  

Last I heard you were going to try to bring her to a specialist for her leg/joint pain...did you decide on one or are you waiting for GI to interpret the latest results?


----------



## Farmwife

:thumright:Thanks for reminding me about the specialist for the joint pain I will be asking when the GI calls today. We have two choices. MSU has one coming up in Oct. or we can make one at Devos. However, IF the GI wants an earlier apt., we don't want to be making two trips down their. So I'm waiting to hear from the GI and see what he wants to do.

Farmwife
(Oh, yes we did get a SUV) I did a lot of searching for one and the one his friend tells him about, is the one we got. That's fine. It's great!


----------



## Tesscorm

Glad to have you back! :rosette1:

But, sorry she's feeling some pains! :ymad:  I hope you can get some answers and a definite plan from someone soon!  But glad the husks seems to be working and that she's gained her weight back! :ghug:


----------



## Farmwife

Ok, a question to all.
 Graces WBC, RBC, HGB and HCT are "low". Still not danger level yet.
Since Dec. 2011 those counts have been steadily going down. *WHY?* I've read were infections elevate those numbers. Her MCV was slightly high by one point and her lymphocytes was low at 1.8 or 47.9%.
_*Any thoughts????*_
My GI still hasn't called.:frown: I will be sweetly badgering him tomorrow.

Thanks every one,:heart:
Farmwife


----------



## Catherine

Farmwife,

If the count are steadily going down, I would be asking your Doctor how are they going to fix it.

Sarah's RBC, HGB started going down prior to dx.  The main cause of her drop was a problem with her iron stores. eg using much more iron than taking in.  In the Sarah case the steady drop turned into iron deficiency amenia (it took 2 years) but with this you usually have a low MCV.

Has little farmgirl had her folate, B12 and iron studies done.  I would ask for these to be tested.

She has a great mum who continue to look for answers.


----------



## Farmwife

Thanks for the reply Cathrine. 
I've looked and looked at the test results and I didn't find it. 
The monthly draw are just simple CBC's. So not very in-depth.

I did talk to the GI nurse AGAIN about her stool STILL have rubber like mucus in it. 
Sorry still to much TMI. 
The Doctor said send him a picture of it and he'll decide what to do. 
:sign0085:That's great!!! :sign0085:
I can't event drink around my computer with out ruining it ,
 or load pictures with out losing them. :thumbdown:
My signature for here was a act of GOD that it made it on here.:lol2:
But now I'm suppose to take pictures of poo and send it via the INTERNET.:yfaint:
 Hey crohnsinct give me your e-mail address.:devil:
This could go wrong in so many ways.:shifty-t:

Farmwife
 Still I'll try my farm hill best to do it right.:thumleft:


----------



## my little penguin

HEre is what you do---
Grab your sister's "Fancy" phone.
snap the photo.

then double click the photo with your finger - should be an arrow or something at the bottom.
This will pop up a screen on what you want to do with it- email etc...
 click/tap there- type in the address and poof---
 AN instant doc/gi approved photo:lol2:


----------



## crohnsinct

LMAO!  

Go ahead send me your pictures!  Us city girls don't scare easily...although I was runnng on a path in the woods yesterday with my city girlfriend and we saw the hugest animal poop we have ever seen...It was massive.  The two of us got scared to death of what man eating animal left that behind.  A teen in a hoody and pants around his ankles rapping some garbage about killing women we can take.  Giant terd laying animals is a wholenother story!  We never finished a workout so fast in our lives. Running in Central Park seems so much safer! 

Ugh just realized that now I am examining animal poop...I gotta get a life!


----------



## Farmwife

crohnsinct said:


> LMAO!
> 
> Go ahead send me your pictures!  Us city girls don't scare easily...although I was runnng on a path in the woods yesterday with my city girlfriend and we saw the hugest animal poop we have ever seen...It was massive.  The two of us got scared to death of what man eating animal left that behind.  A teen in a hoody and pants around his ankles rapping some garbage about killing women we can take.  Giant terd laying animals is a wholenother story!  We never finished a workout so fast in our lives. Running in Central Park seems so much safer!


Such lady like talk from a city girl.
Now let me tell you the country version of your story.
(Please imagine using a southern accent with this story.)

Well one day my friend Mary Ann and I were running from the barn on home to get the pies out of the oven before they burned.
 On our way there we saw the biggest pile of poo our eyes have ever seen.
I looked at Mary Ann and said, what in sam hill made that pile of poo. 
Mary Ann replied, I'm not sure, but I'm telling my Billy Bob to grab his gun, because that animal will make good eatin tonight.
The End!


Farmwife


----------



## Tesscorm

LMAO!!!!!!   :rof:   :rof:


----------



## Suzysu

Gald you are back Farmwife!! I am crazy busy at the moment so can't write much - I hope the GI calls you soon - I am debating weather or not to take Freddy to a homeopath as he still has mucousy diarrhoea and tummy pain and the conventional Drs just go 'meh' xxxx


----------



## crohnsinct

:rof::rof::rof:Thanks I needed that today:rof::rof:

I am onto you country girls.  Baking pies and shipping them off to the city and overcharging us city girls! 

How did the photo session go today? 

You home now Suzy?  I hope vacation was great!


----------



## Farmwife

NO picture perfect opportunities for poo taking.
I thought about taking the camera into Bob Evens restaurant
 in the chance she does something in there.
 However I thought the sound of a camera clicking away in a stall:shifty:
 might raise some eyebrows.:ywow:
No poo yet. Not worrying just yet. 
The strange thing is that she's had two great symptom free days?:dance:
Do any of your kids seem better when they haven't gone for a day or two?

Farmwife

Update: She went poo and of course it was normal!:angry-banghead:


----------



## crohnsinct

Besides the doc's request via nurse for pictures of poo have you heard from him/her to discuss her blood results?  Do I have to give you another lesson on how to be pushy?

Oh yeah!  Kids are like your hair looking its best the day you have a scheduled hair cut.  All my kids are always better when the have to go to doc.


----------



## DustyKat

Farmwife said:


> Ok, a question to all.
> Graces WBC, RBC, HGB and HCT are "low". Still not danger level yet.
> Since Dec. 2011 those counts have been steadily going down. *WHY?* I've read were infections elevate those numbers. Her MCV was slightly high by one point and her lymphocytes was low at 1.8 or 47.9%.
> _*Any thoughts????*_
> My GI still hasn't called.:frown: I will be sweetly badgering him tomorrow.
> 
> Thanks every one,:heart:
> Farmwife


The decrease in RBC, HGB and HCT all have three particular causes in common...anaemia, bleeding and malnutrition...that fit with Crohn's. A decrease could be caused by one of these or a combination. Interestingly one cause can also fit a low WBC, malnutrition and an increased MCV can be caused by anaemia due to malnutrition. Perhaps the malnutrition is also fitting with the difficulty in gaining weight. 

Since my memory is like a sieve :eek2:...has any small bowel imaging been done? 

Dusty. xxx


----------



## Farmwife

Hi all,:rosette1:
  Well we've had some:thumright: GREAT DAYS:thumright: here. She's not even had so much as knee pain lately. A great BLESSING. 

Well I received a call from the GI nurse today. 
She said the doc is not to concerned about her stool problems and her CBC which is low is not danger level yet. 
He feels until something changes in her health like an increase in abdominal cramps and or liquid stool , she's OK to wait till October. 
She did add that when it looks like she's (Grace) heading back down hill to call and they will run labs and probably do a scope.
 I know this sounds weird but I'm fine with that right now. 
I do KNOW this attitude is because she's doing so well right now.
 I do have the fear in the back of my mind of the other shoe dropping.

Right now, all I know is Grace my beautiful angel is happy and laughing. That's all I'm living for. 
This fight for her health has been so long all I want is time to enjoy her, being her. 
What will come, will come. 
I feel we're in good hands, not only from above but here on earth also.
You all have been a wonderful support. I thank each of you.
I'll still be around if that's OK?

Farmwife:ybiggrin:


----------



## crohnsinct

THat's great!  Bless her little heart.  If doc isn't worried and she isn't symptomatic than hell yeah go ahead and enjoy the good times and YES!  Please stick around...some days we need a good laugh but more importantly we need to be reminded that there are lots of good days along with the bad.


----------



## Tesscorm

My thoughts exactly!!!   So great to hear she's feeling well!!!  But will certainly miss you if you disappear on us!


----------



## DustyKat

> I'll still be around if that's OK?


Hmmm, I reckon we can fit you in...after all we country folk have to watch each others backs lest the city folk start getting ideas of taking over! :lol: 

Dusty.


----------



## Farmwife

:rosette1:Thanks for the nice comments.:rosette2:
Well my bubble was rudely POP this evening when....:frown:
 her right knee started to bother her. SHOOT!!!!!!
 Oh well she still happy, and my bubble will be fixed soon.:thumleft:
 A question for DustyKat, Twiggy930 or anybody.
 Twice now when her knee flares up 
I have rubbed her lower back and her cute tushie:
 she seems to get over it faster, 
WHY? I'm a little puzzled. 
Could her sciatic nerve be the real culprit?


Oh Dusty to your comment above..... I understand what you mean. 
Why do think America is the way it is.:ytongue:
City folks and their high flouted ideas.


Your simple, easy going, farm girl loving, good cooking,
:soledance: Farmwife


----------



## crohnsinct

Country girl love...BARFORAMA!  

and just for that maybe I shouldn't share my experience with sciatica...well the sins of the mother aren't the sins of the daughter so for Gracie's sake I will....My experience with sciatica (ex dancer - and not a word from you farmwife) is all in the back of the leg and tush...never went towards the front and knee...also no one I knew (all dancers) who had these problems had it go to the front but maybe I just cohorted with city types who were all backwards.


----------



## Suzysu

YAY! glad you have had more good days than bad!! - Sorry the knee pain has flared up again. I also get sciatica and as everyone else says affects the buttock, thigh, sometimes shoots down the back of the leg towards the knee but I wouln't say it affects the knee if you know what I mean! - glad you are hanging around xxxx


----------



## jmckinley

You Ladies crack me up!

So glad that she is feeling better! Enjoy those times for sure! The possibility of a flare always hovers back there, but it's nice to keep it at bay and smile.

Just to add 2 more cents, I have also had sciatica. It only hurt down my bum and the back of my leg, not my knee. Now it HAS made my leg buckle because the pain shot down through my leg when I put weight on it. Could that be what she feels?


----------



## Farmwife

jmckinley said:


> Just to add 2 more cents, I have also had sciatica. It only hurt down my bum and the back of my leg, not my knee. Now it HAS made my leg buckle because the pain shot down through my leg when I put weight on it. Could that be what she feels?


I don't know. She has KNEE pain. I ask her if it's behind her knee and she says NO. She keeps pointing rubbing her knee cap. Her ankle the same thing. When she gets her pains in the knee or ankle it is NOT all of them at once. Just one at a time. The soonest we can get her to a spec. is in October. Right now it's not debilitating for her except when it flares up.

Well I'm off for the night. 
Second cutting of hay finished today:dance:.
 Maybe my hubby will pay attention to me :kiss:
instead of falling a sleep on the couch. 
Hey, a girl can dream.

Farmwife


----------



## my little penguin

:hug:

Has she see rheumatology???

I would recommend it. I know more city trips...but well worth it KWIM.


----------



## Farmwife

Hi all,
  I feel embarrassed if I asked this question before. Grace had a little more symptoms (pee-pee accident, sl. back pain and sl. belly pain) but not enough that it effected her day.
 So my nice little bubble is still intact. 
Her stool this evening had white spots in it, a little bigger than a grain of rice. 
She's had no meds. She did have ice cream. She's never had this after eating dairy before. Have you heard of this?

Farmwife


----------



## Suzysu

I have not heard of this before - has she eaten anything that would be hard to digest - sweetcorn? coconut? anything like that?
Hope today is better xx


----------



## DustyKat

Hmmm, not sure but a couple of suggestions...candida (yeast) or worms??? 

Dusty. xxx


----------



## Farmwife

BINGO! Thanks DustyKat
I bet that's it. Candida is what they were looking for when this whole thing started 8 mo. age. I know a couple of days ago she seemed like something "down" their was bothering her. I could see nothing but I just read where Candida can "hide" in places. 
Wow, I learning new things all the time.

Farmwife


----------



## jmckinley

No, it  doesn't sound like sciatica. I hope you get to the rheumy soon and get to the bottom of the knee pain.


----------



## crohnsinct

Hey farmwife I know we pm'd about this but you didn't happen to say what it looked like and for the benefit of anyone reading here I wanted to post. 

O had something similar and I called doc and they shrugged it off.  Pill cap pieces, mucus, drug pellets from a pill cap, mucus were all their suggestions but nothing to worry about.  O's disappeared after a few days.  I googled it and came up with worms but not the candida (leave it to Dr. Dusty).  I think I suffer from candida and would be wiling to bet O has issues also.  Going to google that right now!


----------



## Farmwife

We had to take Grace to the walk in to try to head off any UTI and possible Candida infections.
 No to any UTI yet and yes to a fever. 
Grace NEVER gets fevers unless she has something wrong. 
I mean this is why they get fevers, RIGHT. 
Still they won't give her any antibiotic until she has something because they don't want to mess around if she still has c. diff in her body.
We just made an appointment with a NEW GP. 
The Doc form the walk in clinic we took Grace to said
 that we need a Doctor that specializes in children "like" Grace. 
She (walk in clinic Doctor) kept asking if she's had this or that done yet and why not. :redface:
Of course we had to tell her our family doc never felt this or that was needed. 
So she gave us two names of Internal Medicine Pediatric Doctors in town and upon talking it over with the hubby he said that's probably best. :dance:
So I called and this Thursday she'll see him. 
I hope this one gets what's going on with her. 
I pray he'll refer us to a rheumy.
 I never said this because I didn't want Crohnsinct blood pressure to rise but,,,
 the family Doc said a rheumy isn't necessary for growing pains.:ywow:

Oh well my bubble is in shambles on the floor, but don't worry once we find out what's causing the fevers I'll start to rebuilt my world of denial bubble.:rof::rof::rof:

Farmwife


----------



## Tesscorm

Pick up that bubble!!!  Maybe with this new GP, you'll begin to get some answers!  A fresh set of eyes on her, a different way of looking at her problems, etc.!  And, next Thursday isn't TOOO long to wait (I guess the 'wait time' is all relative, seems we've all become so used to waitinggggggg... )

But, I hope Grace's symptoms don't worsen before then! :ghug:


----------



## DustyKat

Thank goodness for that walk in visit! Not for the bubble mind! :eek2: 

I soooooooo hope that the new doc can gather together some solid answers for you and your little princess, bless her cotton socks...:hug: 

Sending mega loads of luck for Thursday!...:goodluck: 

Thinking of you and your bubble. :heart:
Dusty. xxx


----------



## crohnsinct

YES!!!!!!  Finally somebody who will hopefully coordinate Gracie's care and issues (besides the committee of course). 

It is so important to have that one doc who is looking at the whole picture.  I forget who it was but someone on here finally landed on a doc willing to do that for them and as I think MLP said the specialists are typically just looking at their one little area and if they have that covered well then they consider themselves done.  Mind you I am not knocking the specialists.. you all know I love our ped gi but when it comes to EIM's or other infections and oddities etc he is hands off and my ped coordinates all that for us.  She is like the third parent.  GI reports back to her all along the way so when something pops up with O she is well informed.  We recently went to a derm and she called ahead and asked for a report back also. 

Be strong Farmwife and stress that you need this doc to be that person and that you need answers asap.  Do you want me to call ahead for you?  

My heart breaks for you parents of undiagnosed kids wandering through the system just trying to fix your child's ills.


----------



## Twiggy930

Farmwife said:


> Her stool this evening had white spots in it, a little bigger than a grain of rice.
> Have you heard of this?
> 
> Farmwife


My son had this prior to being diagnosed.  It kind of looked like grains of rice.  It was definitely NOT worms as he was tested for every parasite under the sun and it all came back negative.  The closest I have gotten to an answer as to what it might be was mucous.  It seems to have gone away but I have also become lax in my poop inspections, got to break out the headlamp again soon.  :ylol2:

I'm not too sure about the knee.  Have you tried icing it when it is bad?  Maybe when you massage it the muscles relax a bit and the pain subsides.  I think when there is inflammation present the muscles tend to tighten up and that can cause some pain in and around joints.  I don't think it sounds like growing pains or sciatica.  I think it is more likely to be inflammation. Rheumatology is really the place to go, they are awesome.

Glad to hear that you have found a doc who is eager to get to the bottom of things.  It is always a relief to find such docs.


----------



## Farmwife

crohnsinct said:


> Be strong Farmwife and stress that you need this doc to be that person and that you need answers asap.  Do you want me to call ahead for you?


NO I don't want you to call ahead!!!!! I want him to like us!!!!!:rof:

I put little farm girl to bed with a slight fever, her left foot hurting and she just looks off. We'll see what the days bring. 

I know this change is for the best. 
It's just hard for us farmer to do the change. 
Except for Grace's medical needs our doc has been great to us. 
I just think Grace is above what he can do.

Good night to all. 
We have things planned this week-end. 
Naturally we made all the plans when Grace was feeling well.
 They include hiking and such. 
If you see me write a thread called- 
"Why I HATE undiagnosed Crohn's"
you'll know the plans did not go well.
And then y'all can debate who's happier, City kids or Country kids.
Crohnsinct I'm still waiting :shifty:for the pictures of the barn.
 PLEASE don't tie your O to the barn doors.:ywow: 
You might get arrested!:rof:

Farmwife


----------



## crohnsinct

Hiking?!  Seriously?!  Remember what happened last time?  I am pretty sure those bears are still in the woods! 

I hope you guys have a great weekend!  

Just as soon as I can get O out of the water those pictures are a comin!


----------



## Suzysu

YAY for the walk-in Dr!! - not YAY for Grace being poorly again - fingers crossed for the new pead being good and on Gracies case - big hugs xxxx


----------



## Farmwife

Hi all,
Well we went to the new Pead. GP today. 
First off so you get the whole picture, my kids didn't get to bed till almost midnight. Being farm kids they were up naturally at 6 AM. 
So can you guess how they were at the docs office. 
TERRIBLE! I was embarrassed, my hubby was mad and
 I wanted to ask where their mother was. :redface:
So my hubby played referee as I tried my best to talk to the new doctor.
I was happy that the doctor was putting her symptoms together as a whole.
 As ware the other doc thought the problems were not related.
However this doc is also under the belief that if the blood test come back normal she's OK for now.:ymad:
He took more interest in her knee pain than the other doc. He said that since her joint are health looking and
 her pain only stays for minutes, he's not too concerned YET.
He did acknowledge the fact that their's only so much we can do until something more happens in the future. 
He felt the GI is doing a good job. He didn't feel a scope would be called for because her blood levels are in the normal range. :ymad:
He said if things change he'll get every thing we need to help her.
He did think that doing more blood work would be good. 
He notice she's never had her iron checked. He though since her liver enzyme was off that should be checked again. Also her CBC being lowered but not in danger yet should be kept up on. 
She's to stay on Miralax and everything else. 
One thing I liked was he said followup appointments. I said WHAT.
 He said she needs to be checked up on. 
Her old doc NEVER asked for follow up appointment!!!! 
I had to call and beg for one. 
So every two months or so he wants her in the future.
So the long short of it, I wanted more action taken but least I feel he might be the better doc to go with for Grace.
My BIG thing is way does it have to get worse for my girl
 before they can step in.
So their you go... he thinks her symptoms as a whole could point to "something" but we have to wait.


Grace is back to being a little healthier and she grew 1 inch. First time in 8 mo.
Farmwife
:soledance:


----------



## Tesscorm

So frustrating that you still don't have an answer or even a definite plan of action but...  at least this doctor wants to be involved as things progress!  Hopefully, at the first sign of change, he will be prepared to act.  I don't remember if you already do this but, try to keep a diary of her symptoms to follow-up with at your next appointment.

Did he suggest anything to do about her knee? Or any idea about why it hurts?

And, yes, it does seem so wrong that you have to wait until she gets worse before they do anything else...  Has anyone ever suggested an ultrasound or MRE?  I'm pretty sure they don't give the 'detail' that a scope gives nor will you have a biopsy but Stephen's ultrasounds did show thickening even before he was diagnosed...  If thickening was found, perhaps that would be more reason for a scope????

And, just where was THAT MOTHER?  Probably off cow tipping somewhere!  But, don't you just love when your kids are at their 'best' in public!?!


----------



## Farmwife

He said her joints need to be monitored BUT until the pain last for hours or a day, he feels she still in no danger. 
No he never really said because 
by this time ......
my children were pretending to be logs on the floor.:shifty:
I would have been happy with a MRI BUT.......
 again her blood work doesn't show a need.
 I wanted to push for one but.....
 my girl was a butterflied and my son was a big bad dinosaur who eat butterflies.:ywow: 
STOP SMILING! WE HAD TO PAY FOR THIS VISIT!!!


----------



## DustyKat

I'm not smiling! I'm laughing! Oh my, I can just picture it now. 

Oh man I hate the...NFO (no further orders) press on!...so much easier to say when you are on the big leather chair side of the desk! 

He surely does sound like he is taking a more holistic approach thank goodness and YAY for the follow up appointment! 
I know the waiting is crap but in the interim I would be tracking all her symptoms and when you next go back, assuming nothing untoward happens in the interim!, and if the bloods remain normal demand then that it isn't good enough, it isn't normal and you want some further testing done and start with imaging as Tess has suggested. 

Dusty. xxx


----------



## Tesscorm

LMAO!!!!   Your picture of Grace goes just so very well with your post!  LOVE IT!  (The picture also goes very well with your 'award acceptance speech'!! :rof:


----------



## crohnsinct

LMAO!  Did Grace leave her tiara at home?  Pretty sure dinosaurs can't eat princesses. 

I would have responded sooner but I was busy watching my little one play softball with an aluminum bat with lightning and thunder overhead. I was trying to figure out how I would explain not pulling her to the ER doc.  They called the game for tornado warnings...how do you like that farmwife?  City girl in the middle of a tornado warning!  I was freaking out driving home dodging falling trees.  One limb hit my windshield!  

So ergh more waiting but at least we have someone who is tracking and willing to listen and willing to follow up.  Score one for Framwife.  

But yeah how bad do these kids have to get before they start looking for what it could be?


----------



## Farmwife

Your not country because of that crohnsinct!!!!!
Lightning, thunder, tornado and a limb falling on your car ( thank the LORD you weren't hurt) doesn't make a difference; it just makes us happy were not you!!!:biggrin:


----------



## Catherine

Farmwife

I am glad to hear the new doctor whats a iron panel.  Does this should anything like farmgirl.

Pale child you don't really notice because the kid has always been pale. Stomach aches and occur every month or two then go away.  Very skinny but has always been so.  Hemoglobin low but nothing to worry about.  Odd pain that go way as quick as come on.  More tired that normal for said child.


----------



## Suzysu

Im glad this Dr seems a bit more on top of things but so frustrating that she has to get worse before they will do anything - Although I suppose you don't want her to go through loads of horrid tests and then they dont find anything because the inflammation is not extensive enough to see? Freddy still gets bad tummy pains that only last a few minutes but I feel that because he has had a normal scope they wont look further now - maybe I rushed into things and should have waited till he got worse. I hope your Dr is better at ordering bloodwork than ours - last bloods Freddy had were to test the iron levels - what was the one thing they forgot to test for.........
  I hope Gracie continues to do ok - and I hope the butterfly didn't get eaten by the big bad dinosaur!!!!!!!! xxxx


----------



## Patricia56

Sounds very frustrating.

I strongly second keeping very detailed records of the signs and symptoms that concern you. In my experience, docs take you much more seriously when you walk in the door with that kind of information. Plus it gives them something concrete to use when they are thinking about all the possible explanations for those things.

And we all know that normal labs does not equal well. My kiddo's recent MRE showed inflammation but you would not think he is sick if you looked at his labs. A lab test is just one piece of the puzzle and looking at the overall patient is at least as important.

You mentioned that she has had a bit of a growth spurt. Have you or her doctor been tracking her growth? This is one measure that can be helpful in diagnosing GI problems early but it requires patience (I know you didn't want to hear that) and accurate measurements. Many, many CDers have growth delay or even failure. If she is growing on a normal curve then that is definitely contributing to the docs feeling like systemically she is doing fine.

If you want more info on growth, start a new post and I'll be happy to share. We have had some experience with that issue ourselves.

Patricia

Badger, 16, CD, Methotrexate, Omeprazole, other non-CD meds


----------



## Farmwife

Patricia56 said:


> You mentioned that she has had a bit of a growth spurt. Have you or her doctor been tracking her growth?


Grace was on the shorter side. The growth spurt help that. She's watched very carefully by us. To tell you the truth, mentally she's more prepared to start kindergarten than her 5 yr. old brother.:ybiggrin:


----------



## izzi'smom

Glad to hear that the new doc may be a keeper, although I, too, despise the "wait aand see" approach. and girls are like that...Izz came out of me ready to go to kindergarten, and her brother? Ack. Maybe at age ten!


----------



## Farmwife

Just a quick update on Grace.

She was still struggling with Miralax and fiber. I called the GI nurse and she does think she impacted but...... since she's happy and energetic:thumleft: the nurse wants more time to give it to work. She was having diarrhea 4-8 times a day. But now it's more pencil thin strips coming through. She's in NO pain when she goes. BLESSING. :thumleft:
But twice now she has complained of belly pain after eating.:thumbdown:
Is there anything extra I can do for her to help to loosen her up?
The nurse said she's to stay on 4 tsp. of Miralax. I forgot to ask about the fiber. 

Should I still be giving her the fiber? Do any of your children have problems with being impacted? 

The nurse said she's concerned about the LDH level at 252. I said 9 months ago it was at 595. We don't want it that high again. WELL, YA!!!!:ymad:

I hope all is well.

Farmwife


----------



## Suzysu

Oh no I am so sorry that Grace is having trouble again. I hope the miralax works soon. I don't really know about the fiber but I would assume you would continue with it. We are thinking of you guys xxxx


----------



## Sascot

Wow, I go away on holiday and miss a whole bunch of stuff!  Sorry to hear that Grace is not doing so good.  It never ceases to amaze me that doctors seem to think a child cannot possibly be bad if their blood work seems ok.:frown:
My son's bloods have always been fine and yet here we are. I agree it would be a good idea to write absolutely everything down so that he has it in black and white and there's no chance of you forgetting anything.  Hope the new doc works out to be "the one" that helps solve all Grace's problems.


----------



## Catherine

Farmwife, maybe try prune juice.  We use this at increase dose.  It works are us.


----------



## Farmwife

She's tried prune juice a couple of times for a couple of weeks. NO GO!

She's still HAPPY! But................................
Her belly pain is increasing and her irritability is also. 
Her belly looks "puffed" but not swollen. She's not sleeping. Just not tired.
 Still has diarrhea. Starting to get painful for her, but not to bad yet.  IF she's impacted, it's not coming out yet!:yfrown:

She has a flesh like bump around her ( my dear mother who is a picture of lady-hood refuses to call it the anus and calls it....) pooper shot.:ybiggrin: 
What could that bump be?
She's complaining of itching with no rash anywhere! She's on allergy meds. I can't figure that one out. 
So as you can tell I'm trying to stay positive and in denial all at the same time.:thumright:
:soledance: It's hard but If anyone can do it it's me.:soledance:

Have a great night!


----------



## my little penguin

Does she see a pediatric allergist?
- I would suggest adding that to the list.
they can give you more guidance on what is what plus given her age things tend to get worse in that area before getting better.

HUgs.


----------



## Suzysu

Could the bump be an abcess? or fistula forming? is it sore to touch? I would call the GI nurse again especially if it is sore to poop. Big hugs xxxx


----------



## Sascot

Hi, poor Grace, hope she doesn't get too irritable for you!!! .  I agree that the bump may be an abcess, definately worth letting the doctor know.  Maybe if she sits on a heat pad it might help.  Have you tried giving her tummy a massage to help her get her bowel moving?  I try that with my daughter, just a really gentle massage so that I don't irritate anything.  You need to massage clockwise, gently rub along the lower stomach then upwards to the ribs on the right, across to the ribs on the left then down to the left hip (do this a few times).  Then if you put the heel of your hand just between the pubic bone and the belly button, keep the heel of your hand still but move your fingers from left to right like a fan shape.  Also you could place your hand flat (sideways) under her belly button and rock gently from fingers to the heel of your hand.
I'm not sure that it does a great amount to help but every little helps and Amy finds it quite relaxing at night.  She quite often asks me to massage her tummy before bed.


----------



## Suzysu

Sascot - thanks for the massage tips - I did do massage on all mine when they were babies but I had totally forgotten about it - It may help Freddy! - I will give it a go!! Did you go on holiday yet? was it good? did everything go ok? xx


----------



## Naturelover

Farmwife, 

Sorry to hear Grace if having difficulties. We never want our children to be uncomfortable.

I'm curious. Did the GI doc do a full bowel clean out on Grace or just start her on Miralax?

My daughter's GI doc does a full clean out on all children regardless of age first using either Chocolate Exlax Laxitve Bar Squares (more palatable for children or those who can't swallow pills) or Dulcolax Laxitive Pills/Tabs along with a certain amount of Miralax and fluid. After the initial clean out, a regular regimen to initiate at least one to two soft stools daily is initiated using Miralax. If that fails, then it's on to more over the counter meds and/or prescription meds.

I've known this doc for 19 years now. I knew her when she was just a resident at the hospital and took care of my son as an infant in ICU. Later she got my daughter for just a short period. Now the doc is The Chief of the Pediatric GI clinic. She now has my daughter back. I was in so much pain from constipation the day of my daughter's visit that it hurt to even move so the GI doc told me to do the same clean out as my daughter. LOL! I did it. My PCP agreed and was glad I did the clean out.

My 14 year old daughter is still suffering from major constipation despite the clean out and so am I. She is currently taking 4 Senekot and 1 Anitiza in the morn and 3 Ducolax Laxitive pills and 1 Anitiza at night and is still have difficulty going. She dropped the Miralax because it makes her bum sore. Miralax does the same to me, however, I'm still taking it. 

I also believe Grace is impacted. My stools are coming out the same as Grace's. Yesterday I felt so bad that I couldn't eat much and got gas and acid every time I drank anything. I had no appetite and was even a little bit nauseous. Last night I took 4 Senekot to see if anything would improve. My IBS is acting up. Lots of cramping. I have been able to have several stools today that were soft or semi-hard. They were large and round. So my guess is that the Miralax was allowing some of the stool to venture around/past some larger stool. No matter the consistancy of my BM's, I have to strain just to have one. No fun. Now my Sacrum hurts yet again.

Have you thought about asking if you could try a laxitive clean out with Grace? Espcially if her eating and drinking is being affected by the constipation. Just a thought...

My prayers are with you all, NL


----------



## Farmwife

Thanks Naturerlover,
It's nice to have you around.
No the GI never had her clean out. That makes sense that a GI would do that.
I'm going to switch Grace to something else.
 I also think I'll take her off all dairy again. 
Her test say she's not allergist to it and she shows no sign of pain or problems with it but......I never had her this bad off with her stool problems before. 
When she was under 1, I had to "help" her go every day till she was 9 mo. old. Still the doc told me that was nothing to worry about.:angry-banghead:

The big news, drum roll please.....................
her impaction seems to be breaking up. 
ika::luigi::banana::grr1d::applause::emot-dance::yoshijumpjoy:
I hope and pray.:shifty:


----------



## crohnsinct

Time for the official poop dancing bananas!  :dance::dance:

Keep it up though...you would be amazed at what could be in there and as we were told you have to keep things nice and soft for a while to give their musles etc a chance to get back into shape to make sure everything moves a long nicely or else you ill be right back to where you started.  

Gee sorry you missed the rectum coming out of her body part...you must be so disappointed.


----------



## Sascot

:banana::banana: there's a couple extra for good luck :ysmile:
Suzysu - been on holiday, it was fabulous.  A bit hot for me but otherwise perfect.


----------



## Farmwife

crohnsinct said:


> Gee sorry you missed the rectum coming out of her body part...you must be so disappointed.




You gave me nightmares you evil women!!!!:ymad:


:rof:


----------



## Tesscorm

Oh, I hope things are improving!!!  (Just trying to catch up now with everyone...)   If that little bump doesn't disappear, I would call the GI asap - I, too, was thinking abscess or fistula 

Thinking of you! :ghug:


----------



## Naturelover

Make sure to keep those stools nice and soft. 

I've been having semi-firm stools all day and have lost three pounds today. My stomach is not as distended now. Still have more in there though. I don't understand how this could happen even though I was on the Miralax maintenance. Oh well. Saw my pcp today and she's thinking the same thing I am thinking. (It's nice to be on the same page with the doc.) I will start back on the Miralax tomorrow as well as colace stool softner and a fiber cookie to keep things bulked up. Hopefully that will do the trick. 

My doc is also having the home nurse do some blood work for food allergies. I don't think she is checking enough foods so I'm going to make another apt with my nutritionist and see what other foods she wants to test for.

I think the similarities between Grace and I are a God thing. We seem to be able to help one another. 

I switched from milk to soy milk recently. What are you using in place of milk for Grace?

How is Grace doing? Children are amazing. They can bounce back so quickly and tolerate so much. Having had one in the hospital for two months, I can honestly say that. 

How is your son handling all this. It is difficult when one child is ill and requires a lot of care and attention.

Your family is in my prayers.


----------



## Farmwife

Thank you Naturelover for the kind words. :rosette2:
My son is a pride and joy to his family and his church. He's a wonderful, considerate, patient (gets that from his dad):thumleft:, hard working (also for dad):thumleft: and a handfull (gets that from me).:ylol:

As for Grace she's fine I guess.:yfrown: Her stomach pain is slowly starting to rear it's ugly head. She's had it four times with in an 10 minutes of eating. BUMMER. 9 months ago a doctor put her on ulcer meds and it seem to work for stomach pain. YA! But..... all her other symptoms got worse. Her GP took her off it. So it cleared it up for 9 months or so. Or was it because she went into a bit or reprieves of her symptoms. Her knee pain has come back after being gone for a couple weeks. BUMMER! I still have to call multiple doctors offices tomorrow. I've just been to busy with other things. Maybe that was just some denial and wishfully thinking that is causing me to procrastinate.:shifty-t:
I'm going to Much to ado thread. Their has to be something to debate or make fun of.:thumright:

Well my hubby just said the the Olympics are almost done in a few days. That means I'll have to start paying attention to him.

To cheer my self up I send out a bunch of friends notices to you all. Accept only if you want to acknowledged me as a friend. If you don't that's OK. crohnsinct will have to do then. That seams kind of mean but what ever!:ylol:


----------



## kimmidwife

I am so sorry the pain is back! I bought Caitlyn this thing at sharper image in the mall called a Bean. It is kind of like a hot water bottle but is filled with a gel like substance you plug it in for fifteen minutes and then it stays warm for several hours. Caitlyn uses it when she is in pain and she says it helps. Maybe you should get Grace one. You can order it online.


----------



## Farmwife

kimmidwife do you have the address?
I'll look it up. Thanks. :thumleft:
Oh and thanks for accepting me as a friend! :rosette2:
See crohnsinct people like me!


----------



## kimmidwife

Just google the sharper image and their website should come up.


----------



## my little penguin

we use a thermal something- microwave for a minute and DS sleeps with it- found it at the grocery /drug store.

De"nile" is a very long river and we were there many years.
Hope the docs find some answers for you soon.


----------



## Tesscorm

Sorry Grace is still feeling pains :voodoo:  Really hope you can get somewhere with the dr calls tomorrow!!! :ghug:


----------



## Naturelover

Farmwife, Sorry to hear Grace is having a set back. Hope it doesn't last long. Keep us posted.

There never seems to be an end to making phone calls for medical issues. I'm like you. Procrastinate and hope the symptoms will wander into never never land. Ha, ha, ha!

Will you make my calls tomorrow too? Tee hee!

Blessings,
NL


----------



## Suzysu

Sorry she is in pain again - I have one of the microwaveable wheat bags for my daughter who gets a lot of tummy pain and its fab!
Hope she feels better soon xxxx


----------



## Farmwife

Thanks Suzysu,
  How is your little guy doing?


----------



## Suzysu

Hey Farmwife! - just written an essay in the undiagnosed kids section!! better than earlier on this year but I am still confused about so many things! I think a lot of it is all a waiting game!!!!
How is Graces bottom? did the lump turn into anything?? I hope not.
I really really must go and clean the house now  will be checking the forum again later no doubt!! xx


----------



## polly13

Hey Farmwife - havn't been on in a while and sorry to hear you still have no answers for Grace.  I am little concerned about the bump on her bum, Lucy has these and they are as a result of a fissure forming so maybe if it doesnt go away you should take Grace back to the doc or ring your GI. 

I cant believe you are still getting the wait and see approach from the docs - it must be so frustrating for you . 

You and Grace are in my thoughts - hang in there girl we were in the undiagnosed club for 18 months so know how you feel.


----------



## crohnsinct

Poor farmwife:yfrown: In denial on so many fronts...people are not necessarily accepting your friends requests because they like you they may just want to see pics of cute Gracie...remember how I bribed half of my friends?  

How is Grace?  What did the doc say?


----------



## Naturelover

Crohnsinct, You're terrible, but funny! Maybe we friend her because we like her and Gracie. LOL!


----------



## Sascot

Oh I don't know - I think my finger slipped onto the accept button 
Hope you get somewhere with the phone calls to the doctors!  I am just doing the same thing myself this morning. 
Well I did quite enjoy the Olympic closing ceremony - although some of the ideas!  Who sits around a table and says "I know - we'll have Russell Brand singing on a bus, then the bus will turn into a giant octopus with a dj in the middle, and we'll have rollerskating nuns"?? :ywow:


----------



## Naturelover

Sascot, The real question is, what were they drinking and/or smoking? My daughter and I watched the Olympic Closing Ceremony. She thought it was strange. Ha, ha!


----------



## Farmwife

Sascot said:


> Oh I don't know - I think my finger slipped onto the accept button


Sascot who are you kidding????:mad2: Your finger didn't slip.:yfrown: You couldn't wait to hit that button. The fact that someone wanted to befriend you:frown: was the high light of your day, maybe even your life.:ytongue:

crohnsinct I'm glad your back. Have a good time at VBS. At Church we had a desert social for all the bus kids and the Church kids. That's 50 kids totally sugared up. I'm glad I wasn't on that bus going home.:thumright:

:soledance:


----------



## Farmwife

:thumright:Naturelover I didn't watch the Olympics closing ceremonies. :shifty-t:
I figured I could watch me garbage can with the buzzing fruit flies and still find it more entertaining.:rosette1::ybiggrin:


----------



## Sascot

Well now you know what you missed by not watching that "awesome" closing ceremony!  Think they were on something for sure :lol:
Farmwife you are totally right!  It did absolutely, positively, completely make my night to get the friend request :ycool:.


----------



## Farmwife

Sascot said:


> Farmwife you are totally right!  It did absolutely, positively, completely make my night to get the friend request :ycool:.


Oh that's sweet!!!:hug:



:ghug::ghug::ghug::ghug::ghug::ghug::ghug:
OK EVERYONE START BOMBARDING Sascot with friends request.
:hug::hug::hug::hug::hug::hug:

Farmwife


----------



## TangieC

I couldn't find it in the thread, but when does Farmgirl go to her GI? I'm praying so hard that you get answers this time!!!! You need them!


----------



## Farmwife

Thanks TangieC, She goes in Oct. I'm thinking she'll be seen sooner. I increased her Miralax again and still no poo. I'm going to at least push fo a MRI. 
Is their a difference between MRI and MRE?
Thank you for the prayers.


----------



## Suzysu

that is such a CUTE picture xxxx


----------



## TangieC

I agree with Suzysu...that picture is TOO cute!  I will pray she gets in sooner.  It stinks when no one listens. I love my boy's GI team and all the attendings, residents, interns, etc., at the hospital we were sent to. But initially, at our local hospital, I had to tell the ER doctor that I was refusing to leave until they told me what was going on. I don't know why they act like parents can't tell when there is an issue. You could LOOK at him and tell he was really sick. And the fact that I was in two different ERs on three consecutive nights should have been a big clue. He told me he wasn't there to make me angry, but to help. So I told him he needed to LISTEN or send someone who would. I told him there was no way he was just constipated. GRRRRR! Makes me angry thinking about it! And even angrier when I think about the first ER visit! Sorry, but the thought of others besides myself not being taken seriously BURNS me up!  Isn't it better to err on the side of caution? Better safe than sorry? I'll be praying too, for you to have strength and wisdom in dealing with this. Okay, I'm done with my rant! For now anyway


----------



## dannysmom

Farmwife said:


> Thanks TangieC, She goes in Oct. I'm thinking she'll be seen sooner. I increased her Miralax again and still no poo. I'm going to at least push fo a MRI.
> Is their a difference between MRI and MRE?
> Thank you for the prayers.


Yes MRI and MRE are different ... (but in my son's case, his dr ordered an abdominal MRI and we got an MRE 

As you know, MRI is just a techinique for imaging. There may be different MRI protocols for imaging the GI tract. MRIs can be done with IV contrast or without.

MRE involves drinking a contrast to fill your intestines prior to the imaging. It is relatively new compared to regular MRIs or CTs. Most places require at least a 4-hour fast prior to the test. (Our hospital did not require any fast for children, and it was extremely foolish as drinking 3 large containers of yucky contrast is hard with a fill stomach and it took about 7 hours for the contrast to fill his intestine being caught behind dinner ... it was an awful night for my son)


----------



## kimmidwife

Farmwife
you want to ask Them for an MRE. As dannysmom said it is relatively new. our hospital did not call it an MRE but called it an MRI with drinking contrast. it is supposed to be a very accurate way to visualize the parts of the GI Tracy n
ot seen by colonoscopy.


----------



## kimmidwife

PS my phone changing weird and adding some words in


----------



## Farmwife

Thanks dannysmom and kimmidwife , 
I still have to get to the new GP to pick up test results.
 Grace is up to 5 tsp. of Miralax and not better. 
When she does go it's explosive. 
Poor kid can hardly make it. Keep in mind 4 out of 5 it's a false alarm. 
She tries and tries and nothing.


----------



## Suzysu

An MRE sounds like the way forward - I wish they had done it with Freddy - althought getting him to drink the contrast would probably have been impossible!!


----------



## kimmidwife

suzysu
the way they got Caitlyn to drink it was they mixed it with look aid. they had several flavors she could choose from.


----------



## DustyKat

The difference with an MRI and MRE is the oral contrast that used. An Enterogram requires a much larger amount to be consumed, for Matt it was about 1500mls. It is a sugary mixture that is designed to line the small bowel rather than be absorbed by it. 

Matt had one performed the day after his scope as the GI didn't want to push through the inflamed area. It was very accurate at visualising his small bowel and it accurately diagnosed him with a 100mm length of terminal area affected with 50mm of adjacent stranding. I know it was spot on as this was the exact amount that was affected when he had his surgery. 

Dusty. xxx


----------



## Farmwife

Well how fast things change!!!!


I put off calling the GI because 
lately I've been made to feel like 
I'm making a mountain out of a mole hill!!!!!!

:thumright:SO THEY CALL ME!:thumleft:

I get a call from the GI nurse saying that the GI has reviewed the labs (2 wks later):ymad: and a list of her symptoms. I also informed her of some new symptoms and she said let me call you back. She calls back and said he wants her on a clean out NOW. Soft too liquid diet. Upped Miralax to 7 1/2 tsp. She has till Monday to clear out. If she can't , we'll have to do something more right away. Then she goes into the lab results. He feels something More needs to be look at and mentioned Hematologist. She said we'll fax your GP and see what he says.
 I call the GP and the nurse said they got the fax and the doc said get in NOW for more blood work. OK and then I was told that he is going to refer us to a Hematologist.

So their you have it. Grace is more pale than ever, she's lost 3 lbs in 5 days and getting serve pain where NO woman wants pain. Her tommy hurts a lot.

 But she still puts on her crown and calls me Queen Mommy!:queen:


----------



## Sascot

Oh Farmwife, my heart breaks for poor little Grace!  At least they are actually doing something (and without you having to beg!) and reasonably quickly.  Hope the liquid diet and extra Miralax work for her.  Amy doesn't seem to be going any more with the 4 times extra Lactulose yet.  My mom can't believe it - 1 tsp of it helps her!
That's good that they are going to refer Grace to a Haematologist as you have been worried about her blood results.  Maybe you are one big step forward to getting some answers!  So sorry to hear she is in pain, I hope it doesn't last too long :hug:


----------



## WhoKnows

:rosette2:


----------



## DustyKat

Oh my goodness Farmwife. :hug: BUT AT LAST THEY ARE FINALLY DOING SOMETHING! and about bloody time too!

I hope you a now on the path to solid answers and your little princess can find long and lasting relief. 

Onwards and Upwards!
Dusty. xxx


----------



## Catherine

Hopefully this new specialist is a step in the right direction.  Thinking of you all.


----------



## NMMom

I hate that your poor little one is going through this!  I hope that you are on your way to answers - quickly!  Although a diagnosis of anything is always hard it helps just to know and have a plan.  I'll be keeping you and Grace in my thoughts.  Wish you all were closer so she and Ellie could play princess together


----------



## Suzysu

Wishing you all the luck and best wishes in the world - hope she feels better with the diet and increased meds. - big big hugs xxxxxxxx


----------



## my little penguin

Hope the new tests plan bring her some relief.


----------



## momoftwinboys

FINALLY...so happy to hear the docs are taking notice and requesting tests. Time for Grace to start feeling better and get back to her princess pursuits ...here's to good  (can not imagine where I would use that emoticon except here. )


----------



## Naturelover

:rosette2:
Farmwife,

Just caught up on the thread. Please keep us up to date. When do you see the Hematologist? I'm so glad the docs are finally doing something. I will pray that the Lord will open up the docs eyes and the GI issues be revealed.

Praying for you and Gracie. NL


----------



## crohnsinct

Sorry farmwife been busy in ancient Babylon and then wedding and oh yeah our house was broken into yesterday:ymad: Luckily the left my laptop alone so I a ready to reconnect with my Crohns buddies. 

I am so glad that they are finally listening to you but oh so very sad that Gracie is not better.  I hope and pray that you will be getting answers very soon.  

Sending positive poop vibes your way.


----------



## Tesscorm

Crohnsinct - how awful about the break-in!!  I hope there was no damage and nothing of real value taken!  We've had our cars and garage broken into - it's a terrible feeling of violation knowing some stranger has been in your 'space'. :ymad:

Farmwife - I have no advice for you   But, am just so sorry Grace is having to deal with this and so sorry you have this worry! :ghug:  Hoping that you see some improvement today! :heart:


----------



## DustyKat

@crohnsinct - Aha! Just call me Sherlock! :lol: When I was on Farmwife's other thread I thought...Huh, when did this break in happen?!?! :eek2: 

Oh man crohnsinct how awful! It is good to hear that nothing was taken and the pew saved the day!  Sucks about the doors though...booooooooo. :voodoo:

Then Sascot talking about South Africa!!! :eek2::eek2: 

Don't know what it is like where you Farmwife but half the people I work with don't even lock their houses when they go to work! 

Dusty.


----------



## Farmwife

Sascot it's stories like yours that remind me how easy we have it here.
No DustyKat, I lock my doors.:shifty: I was born and breed in the city. It's instilled in me.
 Hubby thought I was crazy for locking my car door in our drive way. :ywow:
Now crime is going sky high here. 
We make sure to have what we need to protect ourselves.:biggrin: 
It won't matter though if were not home to do it. 
I just hope they don't forget to take my bills with them. :ytongue:


----------



## crohnsinct

DustyKat;487874 Don't know what it is like where you Farmwife but half the people I work with don't even lock their houses when they go to work! 

Dusty. :)[/QUOTE said:
			
		

> Do I smell another knock against the city?  Well maybe not because I am actually in the burbs now and funny but my whole life in the city not one break in...lots of glass in cars broken but not one thing taken from me.  Move out to the burbs and have had a car stolen from my driveway and now this!


----------



## Naturelover

Crohnsinct, Sorry to hear about your break in. Can't stand living in the city with all the hustle and bustle as well as the noise. Lovin the quite country... Farmer sold the land around me. Bummer. Houses going up but only about 8 of them. One is a small farm. The burbs also too noisy and busy for me. Had to lock everything or nail it down or it'd be stolen when I lived in the burbs. Lovin the quite country.....

Sascot, where's your thread about Africa?

Farmwife, What's the latest update on Gracie?

Blessings and prayers coming everyone's way, NL


----------



## Farmwife

Well I just laid Grace to bed early. She's just to ill to stay awake. I'm going to do my best to remember today. It's a strange blurry vision.
Sorry this is going to be long.

Got to Doctors office. Grace limp and tired in my arms.
We get rushed in the room. Nurse said we got her new results. "things climbing".
OK I start to ask what. The doc comes in and starts to tell the nurse about not having the rest of the test results for Grace. She said I'm by the fax every time it goes off. I'll bring it right away. Mean while my hubby and I are starting to slip into.....Oh, no mode.
He tells us that her LDH is STILL climbing after 34 days. I think it's near pushing the 500 mark. Her WBC is still falling but iron is normal. Buy this time I go into shut down mode. Keep in mind that he hasn't even touched Grace's belly yet to see if their's an impaction. He mentioned the immediate referral to the hematologist downstate and a few other thing about some of her other blood levels. A marker for inflammation was mentioned. Sorry I didn't catch what it was. I laid her on the table. She just laid there. :frown:The Doc pushed and prodded and said he can't feel anything unusual. I said well then do we know for sure it's an impaction? I asked for some kind of scan and he said yes I want her to have another ultra-sound done. This time on her GI track. Then he said the nurse is in talks to the children's hospital to get you in there. He said Grace is a special case for sure. He left. My hubby took the kids to the car. The nurse came over and said There making the calls and will call us right away. She said keep her on liquids until you hear further. Her GI track needs to rest. Then she said it's OK your all make it through it. ( Make it through what????? You haven't told us anything) I got in the car and my hubby said, what just happened. I still don't know. I got home and the message from the Doc was, Devos hospital's hematologist and GI department are conferring now. Be prepaid to leave this week.:ywow:
WOW, does that seem like IBD or something else? I'm more confused and scared to find out. 
Amazing how fast things change. 
Sorry guys but writing it out seems to put the day in perspective.

FYI DustyKat when I told the Doc about the air bubbles in her urine him knew what it could be.:thumright:

Ultra-sound tomorrow and downstate some time this week.
Oh man, I wish I would have cleaned my house better.:ybiggrin:


----------



## Tesscorm

Wow, you've had quite a day! :Frown:

I'm really glad they're moving to get things done!!!  All the necessary tests will be done soon!!!  You and Grace have been waiting so long - it's about time! 

The inflammation marker could have been CRP (C-reactive protein), ESR or Sed Rate...  each indicates inflammation in the body but not necessarily IBD related.  (There may be others markers, these are the two I know...).

Glad the ultrasound is tomorrow and I'm sure your doctor's requested the results immediately!  Hopefully, he'll get it the same day!

:Karl:


----------



## crohnsinct

Well duh!  The committee could have told them months ago Grace was a special case!  I am slightly perturbed they have made you wait until a point when she is so ill and weak that now they are scaring you but at least now you are getting the attention you need.  

I have no idea what else they could be looking at but hope they find it soon and get her on the path to recovery!  

Oh and as far as the house bahahaha when O was put in the hospital I had to make an emergency stop for underwear and pj's for her as I didn't have any clean.  Oh and when the police came to check our house the other night I am sure they were convinced the thieves ransacked the place.  The house can wait.  Rest up so you can process what you are being told and be strong for Grace. 

Keep us posted.  Hang in there.


----------



## Clash

Oh I know exactly what you mean by everything being a blur. So sorry that cute lil farmgirl is feeling so poorly I am glad the doc has kicked everything in high gear. Hoping for good results on the ultra sound and safe travel for your family to the children's hospital! Most of all I am hoping that sweet little baby girl of yours is feeling better soon!


----------



## Catherine

Sorry to hear Grace is still so sick.

Hopefully the Children's will give you the answers need.  I would take a change clothes for everyone in case of a stay.

I also being thinking about your son, do want him with you at childrens or would be better with family or friends.

I don't know dr what looking for.  But we had a similar comment after Sarah's colonscopy when gi said I believe that it is crohn and could start treatment now but I want to ruleout a couple of nasties first.

Good luck and keep us posted.


----------



## my little penguin

:ghug: So glad they are getting things moving in the right direction.
So sorry she had to get so sick before they would do anything.

Hope the Chidlren's hospital can figure it out quickly and get her the help she needs.


----------



## Farmwife

Thanks for the tips and comfort.
My son will come with me. I couldn't breath with out him. 
The children's Hospital is set up for families. 
They assume the children's siblings will be coming along.
It's a great place.


----------



## Catherine

Great it set up for the siblings.  Great to take him.


----------



## Tesscorm

Take extra pillows and blankets.  When I was in the hospital with Stephen, I was freezing at night (was just me, Stephen was fine... but I slept with my jacket on!).  And, pillows were in short supply!


----------



## crohnsinct

OMGosh me too!  The kids get those darn night sweats and we freeze our butts off. Good advice Tesscorm.  

And don't forget the laptop!!!!!!!


----------



## kimmidwife

Good luck tomorrow. We are thinking of you guys and praying they find some answers and start to treat her so she can get feeling better fast! I am happy they are at last taking things seriously. I am glad you guys have a good children's hospital there. Keep us posted. I will keep checking in tomorrow for any updates you have a chance to post.


----------



## Tesscorm

Get some rest tonight, Farmwife!  Will be watching for your update!

Hope the Princess (Grace, in case you were wondering! ) is feeling alright tomorrow! :ghug:


----------



## Sascot

Thinking of you and Grace.  Sorry you had to wait so long for them to do anything, I really, really hope that this is the beginning of them diagnosing and treating her.  I'm holding fingers and thumbs for you all. :hug::hug:


----------



## Farmwife

Everyone listen........................Can you hear that................................
It's me screaming in the middle of a hay Field to get my anger out.:ymad:


So the update-

The hematologist called my doc and said they think she needs a few more blood test over a period of time to see what her levels do. :ybatty:
They think it's more of a GI problem.

The GI doc thinks it's a hematologist problem and they should handle it.

My doc thinks this is crazy. He said we'll see what the ultra-sounds says.:yfaint: The doc put his personal cell number on the order and is HOPING to hear something by four.

What a wild roller coaster ride. I want OFF!
She's 4 1/4 pounds down and still NOT pooing normally.:thumbdown:
My worry and question to you all is........will an ultra-sound show anything?


----------



## crohnsinct

Here's hoping it does and if it doesn't you camp out on GI's steps and don't move until they scope her!!!!!!!!!!!!!


----------



## Clash

How is Grace feeling today? Oh I just hate all the hurry up and wait involved when a little one isn't feeling well. I agree with crohnsinct camp out til you get answers. I'm so sorry, I know this process has to be taking a toll on all of you, I hope the docs can agree quickly as to what the next step should be.


----------



## Catherine

Yes Sarah ultrasound showed something, but our gp at the time appears not to have read the whole report.  Fired him:ybatty:

GI who read it 7 months later said it shows imflammation.:ybatty::ybatty:

Was the ultrasound of the stomach area?


----------



## Farmwife

Catherine- It's of the whole GI track. What ever that means.

The one BIG blessing is the doc seems to have finally got the message that something is wrong. Well of course it had to show up in the blood work.:ybatty:

Clash- Grace seems more active today. I think the liquid diet is helping. What does that tell ya.:yrolleyes:

crohnsinct- my tent is packed!!! GI doc's number is on speed dial. 
EVERY LITTLE THING WILL BE REPORTED AT ONCE!!!!!!!!!!!!!!:cool2:


----------



## Johnnysmom

The ultrasound didn't show anything for Johnny, but I am not sure what they were looking for.  I am sure if she had an obstruction or severe inflammation it would show.  He had a CT scan, MRE and ultra sound. None of them showed much besides small bowel loops and mesenteric adentitis which at the time they said could be caused by a virus.  I don't feel like any of those tests got us anywhere.  It wasn't until he had the scopes that they gave us any information or treatment.  I will say that Dr. Kunde's office had him scoped in a week once we were transferred to them.  There were things in his blood work and stool tests that worried them.  I would make sure someone is taking responsibility.  If GI thinks Hemo and Hemo thinks GI no one may be on top of this.  I would want my primary to push them. My primary told me she would have my son admitted to the ER and get scopes done then if she had to.  And she said she has had to in the past to get a patient seen. 

Keep pushing, your farm girl should not be suffering like this as long as there are tests left to run.  

Good luck, let us know.
(((((HUGS)))))))


----------



## Tesscorm

Stephen's ultrasounds showed thickening of the intestinal walls (inflammation), they also looked at surrounding organs (ie liver) for indications of problems, I 'believe' it will also show if there is a blockage...

OMG, I just can't imagine how frustrated you must be!!!  

These are the questions I would want answered...

From the GI:

- Why does he think it's the hematology problem?  He probably won't commit to a firm answer dealing with another specialty but then why did he refer Grace to a Hematologist to begin with?  What hematology disorder does he think could be causing the GI issues?  
- He obviously thinks the GI issues are only a 'symptom' of something else, not the 'source' of the problem, so what hematology disorder? And why/how does it cause Grace's GI symptoms?


From the Hematologist:

- Why does the Hematologist disagree with the GI's answers given above? 
- Given what Grace is dealing with, even if he disagrees with the GI, why will he not follow up the GI's thoughts?  
- To decide to NOT to follow up on the GI's thoughts, Hematologist must be pretty certain the GI is wrong; what is he basing this decision on (ie what tests are proving him right and the GI wrong)

And, back to the GI:

- Given the Hematologists answers above, why doesn't the GI follow up on what the Hematologist said?  Again, GI must be must be pretty certain the Hematologist is wrong; what is he basing this decision on (ie what tests are proving him right and the Hematologist wrong)


It SHOULD be easy enough to get these answers but we all know it's not! :ymad:  So, I would start with asking her doctor for these answers (perhaps, even asking if the questions make sense???); if you're not completely satisfied with what you hear, I would tell the doctor you're heading down to Devos anyway and I would sit in ER until I got the answers...  Someone correct me but the ER would have Hematologists and GIs on staff/call, right?  You may be in ER for hours and hours but, as long as that seems, it will be less than weeks and weeks!

Just my thoughts... :ghug:


----------



## NMMom

I think we should move close to each other so our little ones can play when they feel well enough and we could just bang our heads on a wall..... Together.


----------



## jmckinley

So sorry you are having so much trouble...darn Drs and their egos. I hope you get to the bottom of this very soon! Need to lock the GI and Hematologist in a room and keep them there until they agree to find the problem together! Yall are the ones suffering while they juggle the issue!


----------



## Farmwife

Tesscorm- The hemo said that they feel the test results are because of her GI issues. They want to more MORE labs "off" before they see her. Good Q's to ask. Thanks.

NMMom- Bring some Tylenol when you come, we have plaster walls here.:lol2:


----------



## Crohn's Mom

So sorry youre having so much stress and confusion ! 

I will tell you tho, the very last doctor we were sent to in our quest for a diagnosis for Gab was a Hematologist; one of the other docs sent us there because he suspected Leukemia due to her blood tests.  It's the Hematologist that sent us back to the GI doctor and said it's probably Crohn's ! We had her diagnosis within a couple of weeks after that !
Maybe it's a blessing in disguise that this is happening to you as well and lil Grace will finally get a diagnosis and proper treatment and begin feeling better ? 
Big hugs 
I know this feeling and frustration and anger all too well 
xoxoxox


----------



## kimmidwife

If she gets any worse I would take her to the children's ER. Caitlyn's ultrasound did not show anything. What about consulting the mayo clinic? You guys are not so far from there. I would call your insurance and ask them if it is a possibility to go there. They are great. Usually you go and stay for about a week in a local hotel and they run a million tests until they figure out the problem. We almost took Caitlyn there when she had so many issues with the medications. She ended up in the ER in Manhatten and saw a doctor there that w finally able to help somewhat but if we hadn't found him we would have gone to mayo clinic.


----------



## my little penguin

One thing I learned insist the two specialist " talk " to each other since you only have one kid with an issue. Tell they need to come up with a plan together because right now nothing is being done and she is still sick.
This work for us when Rheumo and Gi were playing a similar game.
Good luck


----------



## Suzysu

Oh my goodness - I haven't turned the computer on all day - and look what has happened. I am glad they are finally taking you and Grace seriously, poor, poor little thing having to get so ill before they will do anything. I am thinking of you and Grace as much as possible and sening good healing thoughts your way. Please keep us updated whenever you can. Bi big hugs xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx


----------



## Sascot

How frustrating for you!  Why the doctors can't just talk to each other and sort something out, I don't know. :ymad:  How can they want to wait again to see if the blood tests get worse - how bad will they let them get?  Hope they see sense soon!!!


----------



## Farmwife

They did the wrong test.:angry-banghead: That's right,:angry-banghead: THE WRONG TEST!:angry-banghead:

I called the nurse to question about why in SAM HILL did they just do the ultra-sound of the liver and kidneys and not anything else.
The nurse replied, WHAT, I filled out the WHOLE GI TRACK. 
She said I'll call you back and she did within minutes.
 She said the Doc will be calling your GI by 5 tonight. He then will call you.
 Our medical bill are mounting and now we have to pay for this also. :ywow:
I'm so mad and disappointed that I could sit and cry.:frown:
The blessing is that Grace seems to be rebounding a bit since doing EN full time.:heart:


----------



## Sascot

Seriously?!!! That is unbelievable.  And you have to trust these people to take care of your kids!  Hope they sort it asap.  Glad Grace is feeling a little better on the EN


----------



## my little penguin

Ugh not what you need...
Glad the doc is calling the Gi on this.


----------



## Catherine

So glad to hear Grace feels a little better in herself.


----------



## Tesscorm

OMG!!! :ymad:  How could they make a mistake like that!?!?!  Are they going to redo the u/s?  I hope the doctor has called you by now with a PLAN!

I'm glad Grace is feeling a bit better though! 

:ghug:  :ghug:


----------



## Farmwife

NO CALL!!! Wait till tomorrow morning!!!
Off for the night!
I think!


----------



## Mom2oneboy

That stinks!!  Now your sweet girl has to go through additional testing?!? The lack of communication/screw-ups is mind boggling.  You should NOT have to pay for their mistake.

I am glad to hear that she is more comfortable.  Hope you both get some rest tonight.

I'm just noticing that you are from Michigan.  I was just up there last week in the Traverse/Charlevoix area.  The cooler weather was refreshing


----------



## Suzysu

How awful - can you demand that they either refund the money you have paid for the wrong test or that they do the right test free of charge? I really really feel for you guys, when your little one is sick you need to be able to trust that she will get the best of care, and how can you do that when they can't even perform the right test. 

  It is good thought that Grace feels better on the EN at least she feels better and is getting all the nutrients she needs - maybe she will even put on a little weight!

  Big hugs xxxx


----------



## upsetmom

I can't believe all the trouble your having.
My heart goes out to Grace and your family.
Take care  :ghug:
I hope you get some answers soon


----------



## DustyKat

Good lord! Enough already! :voodoo::voodoo::voodoo: Tell them you don't give a shit what one or the other thinks just one or both of you bloody do something! Grrrrrrrrrrr. 

Poor little princess...:hug: and poor Mum...:hug: 

Thank goodness the EN is at least giving her some relief, bless her. :heart: 

Thinking of you, always. 
Dusty. xxx


----------



## Farmwife

Grace is now well enough to take her to the store.
It will be good to get out for awhile.
Still no call from doc.:ymad:


----------



## crohnsinct

DustyKat said:


> Tell them you don't give a shit what one or the other thinks just one or both of you bloody do something! Grrrrrrrrrrr.
> 
> Dusty. xxx


Oops!  Dustykat forgot farmgirls don't curse!  She meant to say "Tell them you don't care what in Sam's Hill one or the other thinks"  Silly Dusty...quarter in the swear jar...and being a city girl, I could probably buy a house with the quarters in my jar but I am saving them for my kid's therapy. 

WRONG TEST?!!!!  Are they kidding me?  They should totally pay for the second or first test and seriously?!  Put the kid through more testing and even more of a delay?  I hope they are getting you in TODAY for the second test!


----------



## DustyKat

Hahaha, don't hold ya breath waiting for a quarter! We don't have them down under so I can swear till the cows come home! Moooooooooooooooooooooooooooo! 

And no you shouldn't be paying for their stuff up! 

When the GP first examined Matt and told me there and then that he thought he had Crohn's he was sent for an urgent u/s, which we paid for. The u/s essentially came back normal. The GP didn't believe it so he went back again the next day and lo and behold there was the thickening in the TI. They were somewhat embarrassed (understatement!!!)  by the whole episode that we haven't paid for any imaging since! :lol: 

Dusty. xxx


----------



## dannysmom

I am so glad she is feeling somewhat better! I feel for your frustration ... we've been in a similar boat with Danny. Several other specials say he has Crohn's but the GI's do not agree - so you feel like you just get tossed around between specialists. I've learned to verify everything - and recommend when you go for testing in the future you talk to the technician to ensure they are doing what you expect. Mistakes happen too often.
Good luck today!!!


----------



## Suzysu

Glad she has perked up a little - but I can't believe the Dr has not called you - after everything you have all been through in the last week or so. GRRRRRRRRRRRRRRRRR! Hope he calls soon xxxx


----------



## Farmwife

Thanks Suzysu and everyone else.:heart:
I have called and the nurse said he's tried and left messages but.....
Her GI is on call in the hospital this week. So of course and understandably so
he hasn't get back with her GP. 
Grace is improving a great deal. :ysmile:
Still tires out after an hour or so but far better than NOT moving at all.
I'm almost scared to start her back on solids again.
Oh the bad news she real hasn't pooped in two days.


----------



## Tesscorm

Yay, I'm soooo glad you can see that Grace is feeling better!! :banana:  But, boo, that there's been no poops! :ymad:

So frustrating that you haven't gotten an answer from the GI yet! :voodoo:  I so hope he gets around to answering his messages by tomorrow!

Is Grace only on shakes now?  When Stephen did EN, he was also allowed clear fluids which included broth, jello and freezies/popsicles (but no chocolate or caramel flavours nor 'dark' pop like Coke - not sure why??).  ...just to give her a bit of a break from the shakes :heart:  (But, certainly don't go against any instructions given to you by the doctor! )


----------



## Twiggy930

I am obsessively logging on to check to see how Grace is doing.  I really hope that you get some good answers soon and that things start to turn around for her.  Sending you lots of positive thoughts.


----------



## Farmwife

Thanks Twiggy930,
I called again and still no contact with the GI.
The one interesting thing is the head nurse said THEY couldn't believe that Hematologies is saying no for a visit right now.
Grace is happy, still as of tonight no poo.
If this isn't an impaction then what could it be??????


----------



## Catherine

What about a different hematologies?  What hematogies does the GI sent his patients to?

Does the hematologies work out any hospital with an ER?

Don't know if it the same in American but if Sarah was to get sick enough to go to an ER we need to go to one of two ER if at all possible as these are the ER where GI attends.

Only thinking out loud.  Glad Grace is happy and long may it continue.:dance:


----------



## Farmwife

Thanks Catherine,
It's funny you bring that up.
 My hubby and I said that maybe going on the other side of the state 
to another chil. hospital would be better.

The GI and Hemo. are at the same hospital.


----------



## my little penguin

:hug: SOrry you have to deal with this.
WE are going out of state so what does that tell you:voodoo:


----------



## crohnsinct

Obesessively logging on to check on Gracie?!  My 8 year old is in the bath and asked me to come downstairs and get the brush and well I had to pass the computer so HAD to check on Gracie.  Glad to hear she is feeling a little better.  When the going gets tough the tough get shopping!  Where did you bring her today.?  Better go back upstairs before my daughter drowns in the tub!


----------



## Farmwife

We went to wally world (Wal-Mart). Did some food shopping To bad the hubby and son won't do EN. It would be so much nicer.
 We're kicking around the idea of going to Mayo Clinic or Mott's Hospital down state. It's highly rated. Mary (Rowan's mom) went there. 
Grace limped all the way to bed. Ankle flared up again. Still no poo. She went limp around 6:00 pm. She said she was to tired to move. She stayed that was till I laid her in bed. My gallbladder can't take much more. Thank God it will be remover next month.  Sorry just thinking out loud. Who knows what will come to pass. I'll give the doc a call in the 9 am. AGAIN!


----------



## Tesscorm

If she seems to worsen at all, take her to ER...  they MUST have specialists on staff or on call.  She's so little, I can't believe they would just send her home without following up...  

:hug:


----------



## Twiggy930

:hang:

Hope tomorrow is a better day.


----------



## crohnsinct

YES!  I vote down state...how far is that?  And when are you having Gallbladder removed?  That settles it...we have to get answers on Gracie before your surgery...would you like me to come nurse you back to health...remember Nurse Ratchett?


----------



## Tesscorm

Farmwife - hurry, make sure the Take-Out menus are handy!


----------



## my little penguin

Yes- Call the doc in the am
But also call downstate too since sometimes the second look can take a while to get in..


----------



## Catherine

Vote for the second opinion.  I know your still trying to get the first opinion, but can't hurt to start working on getting the second one.


----------



## Suzysu

I'm with going down state - I think the Dr's you currently have are obviously totally rubbish and this can't go on for much longer. I hope tomorrow\today (I get confused with these timezones!) goes better, and I hope your gallstones don't give you as much trouble. hugs xxxx


----------



## Sascot

Wow, I went to bed and missed a whole conversation!  I will need to stay awake so I can check how Grace is doing.  I hope you manage to get some proper help if you do take her to another hospital, otherwise just keep nagging!
Can't believe they just let this continue, it's so not fair for Grace or your family that has to watch her lying there.  Thinking of you as always


----------



## kimmidwife

Good morning,
I too have been checking constantly for updates except last night I fell into bed exhausted and I woke up this morning and said I did not check on you all and I need to now! I agree with the others time for a new doctor. I don't know anything about downstate but have heard great things about Mayo clinic as I said previously. Just wanted to say I am thinking of you guys. I hope you hear from the doctor today as it is Friday and the weekends coming.


----------



## crohnsinct

Insert Jeopardy theme! 

No post from Farmwife...hope that means one of three things A) she is camped out on GI #1's doorstep B) camping out at imaging place waiting for the RIGHT test to be done or C) in the car heading downstate

Well o.k. maybe a 4th option making lots of yummy mini quiches but maybe that is just my selfish tummy growling.


----------



## Sascot

I know, logged on to check how Grace was and there's no update.  Hope she is being looked after by some good docs!


----------



## Tesscorm

Where the heck are you, Farmwife?!?!  You've got a gaggle of moms all worrying about little Princess Grace! :shifty:


----------



## Clash

Checking in too! Hoping good things are happening!


----------



## Naturelover

Farmwife, I can't believe the mess you are dealing with. Oh, wait, yes I can. It took nearly two years to get my son, Daniel, diagnosed with severe delayed gastric emptying throughout his entire GI tract. He turned two in the hospital. It took three years to get the diagnosis of mild to moderate aspiration of stomach contents into his lungs. Pulmonary and GI were tossing him back and forth like a tennis ball all the while claiming that basically I was nuts. Obviously, mom knew and still knows best. The pediatrician and I were fighting like dogs with the other docs. We knew he was aspirating and damaging his lungs, but the docs were looking for a textbook case. No one in our family is a textbook case for anything. LOL!

Go with your instincts! Don't let them get away with it. Insist they scope her. Enough is enough. Gracie is suffering, not them. It's time for the docs to put their big boy pants on and get to work on making this precious little girl better.

:hang: I'm getting my voodoo doll out to put some sense into those docs.:voodoo:

You are definitely in my prayers. Since you have not been on to update us, I assume you currently have your hands more than full right now. We will all continue to keep you and your family in prayer during these trying times. Turn it over to the Lord and watch him go to work.

Love in Christ, Naturelover 

P.S. Here's some gentle hugs and kisses for the whole family from the lot of us! :ghug: :kiss:


----------



## Suzysu

Farmwife I am thinking of you and little grace - I hope she is somewhere where they are taking really good care of her. I am sending good luck and healing thoughts your way. Big big hugs xxxx


----------



## crohnsinct

:well:

Where in Sam Hill is Farmwife?  

I will tell you after getting this whole forum in an uproar you better not be galavanting shopping for the royal court and if you are you better make up some interesting story. 

:ghug: :kiss:


----------



## my little penguin

:ghug: Hope you are not on because Grace is getting the help she needs.

:hug:


----------



## Farmwife

Well prune my magnolias! Y'all are as sweet as Michigan cherries in the summer heart!:soledance:


Haven't been around much. My dear Grandparents have moved to a new home. Been busy their. Third cutting of hay has started, so the farm is busy with that. 

Ok, made some head way.
Bad news-
 GI still says no till more "proof pops up". 

Good news-
She went poo.:dance::dance::dance:
Our GP is finally on board.:biggrin: I have been told by the head nurse that we will figure this out. MRI's up here can take weeks to get one. So he's ordered a comprehensive stool study. I guess it's very advance. It will tell what is going on with the flora of her gut and chemical in-balance and even inflammation. It can pick up minuet details that a blood test can miss. One of the things he is looking for is called  Small intestinal bacterial overgrowth (SIBO) which can cause all sorts of havoc. That also might be a symptom of something bigger.
 I stated again about her joint pain and are you ready for this.....the nurse said this might be an auto-immune problem.:dance: She said the doc wants her on every kind of food for 3-4 days. We need to try to make e her GI "act up". I know it sounds crazy but that will measure what is relay going on in her gut.
Ok, now to a mother's worry. Grace can't go normal any more. So what happens when she's on full food and no Miralax? Well I guess it will be the ER and my doc will make sure she gets an MRI and maybe a scope and who knows what else. I just pray she doesn't but open a bowel.:shifty:
She also will get labs every two weeks. 
He never mentioned a another ultra-sound. I'll have to ask on Monday. 
The nurse made sure I had the docs cell phone number.:ysmile:

It's amazing how a sick girl laying LIMP on the docs table can change ones mind. 
I hope and pray we can figure this out. Her joint pain is worse. The doc said if her flare up can last long enough to get to the lab their's a test that can measure what's happening to her joints. We might try that.

So there you go. Farm girl is doing ok and will see what the future holds.:rosette1:


----------



## Tesscorm

About time you gave us an update! :ymad:  :lol:

Sounds like she's doing 'okay'   I would ease into adding 'all' new foods, stick with low fibre/residue as she builds up to food more difficult to digest.    At least you now have the GP on your side - big relief! :banana:  Hope the tests reveal some clue as to what's going on and what to do next! :ghug:


----------



## QueenGothel

Hope Grace is feeling better soon.  Hang in there.


----------



## Sascot

Yay for the poo :lol2:.  Glad things are getting done, good luck with all the new tests!


----------



## Naturelover

I agree! Yaa hoo for the poo! Hang in there, this could be the calm before the storm. Brace yourself and be ready for whatever comes your way. You never know how quickly little Grace's body is going to strut its stuff. I don't mean to sound horrible, but I hope everything happens quickly so you can get some answers and both you and Gracie can have some relief from all this mess. Then, you both could be on the road to remission of whatever this is.

Praying for more better days ahead. 

Guess I still have to get my voodoo doll out to use on that GI doc. He obviously didn't get the message the first time. So here goes... :voodoo::voodoo::voodoo::voodoo: There! That should do it!

Blessings and prayers, NL


----------



## Johnnysmom

If you do decide to take her in I would take her to a children's hospital. We took Johnny to a hospital in Northern Michigan (Ludington) while on vacation right before his diagnosis and it was a complete nightmare.  I am sure he would have been scoped and diagnosed then if we had driven to Helen DeVos.

I am sorry you have to go through this.   I will be praying for little Grace, and you too mom!!!

(((((Hugs)))))


----------



## Suzysu

PHEW! What a rollercoaster you guys are on.:shifty:
Yay for the poo!!!!:dance::dance:
Not that I would wish Grace ill but I hope that trying to get her gut to act up works and fast so that they can find out what is wrong with her. I am so sorry you have to go through this. 
Stay strong :ghug:


----------



## Crohn's Mom

Thinking of you and Grace always 

I so hope you can get some answers very soon ! :hug::hug:


----------



## QueenGothel

Rowan always had to have Miralax too.  She was always constipated.  The low residue is actually very constipating.  So I would always have to give fibre to keep this moving.  Lots of peeled apples, actually had to avoid bananas.  Typically the opposite of normal IBD diets.  I am assuming constipation is an issue since she is on the Miralax.  Gosh so much water to drink while taking it too.   I Was always battling dehydration.  I hated the miralax. So now just need to keep things soft. Lots of soups.  Now I do the opposite.  Good luck with UofM they were awesome I thought, Dr Sandberg is really nice and has 4 daughters all young. A very understanding man.  Let me know when u come, maybe we can meet u for lunch.


----------



## crohnsinct

Yay poo!  :dance::dance:

Does anyone find the fact that we all chose dancing bananas for pooping ironic?  I mean really?!  Bananas are for binding the kids.  I just think they are super cute!


----------



## kimmidwife

:ylol:I am glad things are finally happening and the doctors are finally listening! And Yay for poo!


----------



## izzi'smom

Just catching up and OH. MY.!! I am so sorry for all that you and sweet Grace are dealing with...sending some love your way and hoping for her bowels to act up so you can get some answers :ghug: !!


----------



## DustyKat

Thanks for the update hun...:hug: Sending loads of love, luck and healing thoughts your way!...X:heart:X:heart:X

Here ya go crohnsinct...

	
	
		
		
	


	













Dusty. xxx


----------



## Sascot

Hey, love those Dusty!! Never noticed them before.


----------



## polly13

poo - good stuff - hang in there


----------



## crohnsinct

Oh no you di int!  You actually found dancing poop?!  You should load those babies on the smileys for the forum!


----------



## Naturelover

DustyKat said:


> Here ya go crohnsinct...
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> Dusty. xxx


Where did you find dancing poo? I wasn't sure if they were Hershy Kisses or Dancing poo. But after a closer look, I see they're dancing poo! Thanks! Load them up on the smilely board ASAP!

I would put them up on my post for today. I finally pooed too! Yea! Love them Ducolax Laxatives!

OK, I think I'm going insane. Maybe I need more nutrition....:ybatty:


----------



## DustyKat

David has not bestowed such powers upon me. I have many challenges to conquer before I am inducted into the inner sanctum of the table of knowledge. :worthy: 

Dusty of the not so round table.


----------



## DustyKat

> I wasn't sure if they were Hershy Kisses or Dancing poo.


Okay, I have already been introduced to some of your culinary delights but don't be telling you eat stuff that looks like a heap of shit! :rof:


----------



## crohnsinct

LMAO on all fronts Dusty!  But seriously?  You don't know what a Hersheys Kiss is?  And OMG it does look like a pile of poo...dear god you have ruined kisses for me forever...well o.k. maybe the allure of chocolate is stronger than the gross out factor....


----------



## izzi'smom

OMG I thought it was Hershey kisses too...dancing poo. *shakes head* only Dusty would know where to look for poo. LMAO!


----------



## DustyKat

I haven't got a clue what a Hershey's Kiss is!....I mean, well I do now! :lol:


----------



## David

DustyKat said:


> David has not bestowed such powers upon me. I have many challenges to conquer before I am inducted into the inner sanctum of the table of knowledge.


I haven't given you that power because I know you'd add things like dancing poo to the system and I feel it's important that we be more mature and professional than that here.

:dance::dance::dance:
:dance:             :dance:
:dance:             :dance:
:banana::dance: :dance:
:dance:
:dance:

*edit* It's hard to make a "P" for "Poo" with dancing bananas.


----------



## DustyKat

Oh my, your words are like a dagger through my heart David.  I will never attain the ultimate goal will I? That elusive handshake, the hushed word that turns a key into a world that will forever elude me. Just kill me now and put me out of my misery! 


Dusty.


----------



## Clash

We are mature and professional....we professionally hijack threads and they mature in to posts involving wine, sex and culturally diverse obscenities...oh wait that might be deteriorate instead of mature:lol2:


----------



## Farmwife

WHAT!!!!!! Look what your turning my thread too?

Your right David totally unprofessional! Not sophisticated such as I am.

Now onto DustyKat

:ymad:Now you listen Women.
 I put up with a lot. You've ruined fruity pebbles cereal, you've mocked our beloved s'more 
But I SWEAR IN MY WRATH YOU LEAVE MY HERSEY'S KISSES ALONE!!!!!!!!:devil:

That's right! We love our Hershey's kisses here. What do you think caused or Civil war all those years ago. China tried to steal the Hershey's kisses from us and Canada came to our rescue and stopped them.
 That's right. We have gold statues through out or country showing our love for the chocolate yummy kisses. 
And YOU poop poo them like that, Shame on you.:ybatty:


Now go tell your boy to tell your girl that. Maybe she'll tell her Professor .:ylol:


----------



## DustyKat

^^^^Waaaaaaaaah! Now I'm just :confused2: I don't understand your foreign ways! :rof:


----------



## Farmwife

Your still mocking us!:yfaint:



:ylol::lol2::ylol::lol2::ylol::lol2:


----------



## DustyKat

Me?!?!?! Surely you jest?!?!?!


----------



## jmckinley

Farmwife, Sorry your thread's been hijacked!rder: So glad that some progress is being made. I agree that if you have to go to an ER, go to a Children's ER if one is close. We had been going to the DR for 3 months when Ryan tanked. I called the local GI and he told us to go straight to Children's with a suitcase! Best thing we ever did because we got a diagnosis asap!

I'm with crohnsinct. The love of chocolate can't be overcome by comparing it to poo! (Especially Hershey!) :ytongue:  Besides aren't most of us in a place where we can talk about poo anywhere and anytime? Poo talk has no limits in our circle!:headbang:


----------



## Tesscorm

Really, am I the only person who DOESN'T like Hershey Kisses?!?!   To me, they've always had an odd chocolate flavour???


----------



## Farmwife

Tesscorm:shifty:
Their must be a medical reason. Go get checked out.:rof:

:hug:


----------



## Clash

Tesscorm, nope I'm with you...not a big fan of the Hershey Kisses. Real big fan of the dancing poop though!!


----------



## Farmwife

Clash -
Seek medical treatment.Their's something wrong with you taste buds also!:ylol:

To put this to rest.....
They'll be NO debate on my thread about my lovely Hersey's kisses. :confused2:
Do YOU ALL understand.
 It's finished!!!!! :ymad:
A womens thread is her castle. :cool2:
You've turned it into a hurtful expression of poor taste.:ybatty:


:rof::rof::rof:


----------



## Clash

Farmwife...I would but I really would but C has the monopoly on dr. visits around here...looking at the schedule I can work in my Hershey tastebud issue sometime in early 2013!!!:ybatty:

But to save the sanctity of your erhhmmm...castle I promise not to bash, belittle, revile or defame the almighty Hershey Kiss!!:rosette2: See I can play nice!!:ylol:


----------



## Sascot

So if it's finished, is it too late to say I don't like Hershey kisses either?  :nonono:utahere:


----------



## Farmwife

:ytongue::voodoo::yrolleyes::emot-cop:rder::duh::facepalm::kello:uke_r::angry-banghead::ybatty:


----------



## my little penguin

SAME here Once you have had "REAL" chocolate.
Hershey's not so much.......:tongue:


----------



## crohnsinct

OMGosh!  I am literally LMFAO over here!  I am not picky...I will take any chocolate that comes my way..even stupid Nestles!


----------



## Catherine

Crohnsinct.

Stop knocking our milk company, Nestles.  My family were Nestles suppliers all my growing up years.

Farmwife, yes I am diary farmer daughter.  Country girl at heart.


----------



## crohnsinct

Oh No Catherine!  Not you too?  Come back to the light of the city where there is delivery service 24/7 and gourmet cupcakes!


----------



## Tesscorm

I'm definitely a Nestle fan!!!  Kit Kat, Dairy Milk, Aero, Peanut Butter cups, OMG...  all my favourites!!


----------



## crohnsinct

Reeses Peanut Butter Cups is Hershey's (unless Nestle's distributes a peanut butter cup in Canada that we don't know about)!!!! So I guess you are allowed to continue hijacking.  

Loves me my Kit Kat's (Nestles)!  See you are a chocoholic also!


----------



## crohnsinct

Oh I have the absolute BEST cookie recipe for a cookie dough that gets wrapped around a miniature Snickers bar and baked.  Imagine the gooie goodness that you bite into when that comes out of the oven...YUM!  PM me if you want the recipe.  Oops..we aren't on the much ado thread:blush:


----------



## Farmwife

Catherine said:


> Crohnsinct.
> 
> Stop knocking our milk company, Nestles.  My family were Nestles suppliers all my growing up years.
> 
> Farmwife, yes I am diary farmer daughter.  Country girl at heart.


My sister!:kiss:


Out of total curiosity was this forum like this before I joined?:shifty:
If not.....I'm so sorry! I'll leave if you wish me too.:redface:
:heart:


----------



## crohnsinct

Don't flatter yourself!  I have seen plenty of old posts between dear Dusty and her friend Dekky or something like that and some others that were hilarious so we aren't the first and we won't be the last. 

Confession time...I pray every day that nothing is really wrong with Grace but if something yucky HAS to be wrong I hope it is IBD so you can stick around. 

Delete delete delete


----------



## Farmwife

Thanks:heart::kiss::heart:.....I think?:shifty:


----------



## Tesscorm

Hmmm... the Hershey chocolate around the peanut butter cups is good!   Can't be the same as the Kisses chocolate though!

OMG, a baked chocolate bar!!!  The healthy version of a deepfried Mars bar!  :rof: :rof:  I will get the recipe from you but AFTER my cruise!!  Since I've been on the diet, I've gained 2 pounds!  WTH!!! :ymad:


----------



## Farmwife

So to try to divert some attention back to MY thread.....Grace's eye pain is getting more frequent. It only last minutes but now it's happening a couple time an hour. Any advice?
The good news is her knee pain has stopped for the last week or so. YA!!!


----------



## Tesscorm

Oh, I'm sorry to hear she has to deal with one more thing! :voodoo:  Not sure if her eye pain would be similar but does it happen more often in brighter light?  Not the same thing but I had an ulcer in my eye once and even typical indoor light hurt my eye, sunglasses helped.   But, have absolutely no experience with eye pain as an EIM... the sunglasses are just a guess.   Perhaps there's some info in the EIM subforum???  :ghug:


----------



## Farmwife

Yes sunlight can hurt her. Yes I know it can be an EMI. Sorry forget the name. I was just wondering is any of your kids have this and what can be done for this? We'll see our doc tomorrow and they can give a referral to an eye doc. That way insurance will cover it.


----------



## Tesscorm

The EIM is called uveitis, if that's what it is...  here's the link to the subforum for EIMs-Eyes

http://www.crohnsforum.com/forumdisplay.php?f=83

:ghug:


----------



## my little penguin

hugs make sure its a pediatric ophthalmologist 
not optometrist.
Big difference.
Our optometrist missed Ds's limbal vernal kertoconjuntivitis

Hope she feels better soon


----------



## DustyKat

crohnsinct said:


> Don't flatter yourself!  I have seen plenty of old posts between dear Dusty and her friend Dekky or something like that and some others that were hilarious so we aren't the first and we won't be the last.


OMFG! I have led you all astray! Yes, Mr Kat and I live in sin but there is also someone else...Dexky Cletus! That good for nothing red necked S.O.B that took off into the woods to catch our dinna and I haven't seen him since! :voodoo: I swear, if he puts one toe over the threshold I will have his balls in a jar on the mantle! :voodoo: 

Phew, now that that is out of my system...I hope your little princess is soon feeling better hun. Tess and mlp are spot on hun! :thumleft:

Dusty. xxx


----------



## kimmidwife

Good morning Farmwife,
Thinking of you and Grace this morning. Wondering how she is feeling today? I am half asleep as this tropical storm Isaac has been hammering away at the windows and waking me up the past three nights. Today it finally dawned with no rain. No sun yet either though. I could really use some of those Hershey kisses about now! I love em also! We use them to make smores! LOL


----------



## crohnsinct

I know it isn't an official appointment but Good luck with the chat with the doctor today.


----------



## Farmwife

Thanks. 
My hubby might go get it I guess.
He needs to get a back adjustment.
So I'm quietly freaking out. I will send him with a list of Q's.
I just hope he pushes if he doesn't get a clear answer.
Poor guy. He can run a whole farm but I get worried when he has to handle something else!


----------



## crohnsinct

Are you insane?!  I admire your ability to let it go but there is no way on God's green earth I would trust my hubby (amazing as he is) to go chat with a doc alone.  Heck, I don't let him do the grocey shopping alone.


----------



## Clash

:rof::rof: Crohnsinct! My hubby is great at the grocery shopping, always makes a list, remembers to check pantry...me not so much. But at the GI visits he goes strangely quiet...nope not sending him on his own!!

Farmwife, hope you get your questions answered and little Grace is feeling better with the eye pain.


----------



## Sascot

I'm sure my hubby would prefer if he went shopping.  He only gets what's on the list - I go in for 2 things and come out with 20 :lol2:.  This time difference sucks - I go away for a few hours and whole pages of conversation happen.
OR are you all waiting till I go to bed and talk without me :yfrown::yfrown::yfrown:.
Back to your thread Farmwife - sorry to hear about Grace's eye pain, no idea what it is but hope it goes away soon!!


----------



## my little penguin

Same here DH does not do Gi or anything else that is an unstable issue.
When he is under control different story
Hope all goes well today


----------



## jmckinley

Sorry to hear about Grace's eye pain. I hope you get some answers soon. Glad the knee pain has stopped! Poor princess has so much to deal with!


So glad I missed out on the last 2 pages of chocolate rivalry! Trying to keep the weight off! I'd be eating a whole bag of Reeses from the stress of it all!


----------



## DustyKat

Mr Kat went to one appointment and one appointment only, I still don't think he is over the shock! :rof: 

It was one of Sarah's paed appointments, not long after her surgery, and they were tracking her growth, all aspects of her growth. Every time I went it was all pretty mundane, the time hubby takes her the doc decides to ask about budding, periods and body hair! I get home from work and the first thing he says too me is...What the hell is budding! Quickly followed by...I'm never going back there again! :rof: 

Dusty. xxx


----------



## Farmwife

Actual literal tears are running down my face.:ylol:
I could picture my hubby running from the building screaming for his life.:runaway:




:rof::rof::rof:


----------



## crohnsinct

Sooo how did it go?  Got the referral?  Got the poop cups? What did he  say about another GI?  Spill lady!


----------



## Farmwife

crohnsinct I will be happy to spill all.....but dinner is going and I'm the only one here that knows how to cook! I'll be on around 8:00. Yes I did go by the way!!!!!!

VERY INTERESTING VISIT!!!!


----------



## crohnsinct

Dinner?????


----------



## Tesscorm

crohnsinct said:


> Dinner?????


Dinner, yes!  :lol:  not all of us have the "cupcake of the month" for dinner! 

Off to the gym now...  Hopefully, I'll LOSE this week!  Seems whenever I diet and exercise I gain weight! :ymad:  Hmmm...  You think its those little rewards for being so good!  :lol:


----------



## crohnsinct

Last night we had Kit Kat's thanks for the suggestion. 

Muscle weighs more than fat:ylol:


----------



## Farmwife

I did go with my hubby to the doctors. Of course it was totally busy. I mean even the secretary's were running around. I asked for Grace's stool sample kit to be picked up and to talk to the head nurse. The box was given and I was told in haste that all instruction was in the box. Well thank the good Lord that Grace had to go potty. We go in and I run into the main nurse and we start talking. we think we have narrowed it down to what Grace possible has and the nurse agreed and what's us back in on Friday. The doc and her want more time to research it. They said we need that stool sample ASAP!! I said she no longer goes every day. What she is doing is not a lot. Will just have to try our best. They just told us what to watch out for and call the doc any time of day or night with questions. Once the poo is collected I guess they want to do "more" to get her going.
Not enough time to ask anything else. Have to wait till Friday.


----------



## crohnsinct

So Dr. Farmwife, what do you think she has?


----------



## Farmwife

:yfaint:Not telling ANYONE yet. 
I will say she (nurse) took my info and sat down to read it and thought WOW this could be it!!!!

I did send you a pm awhile ago about it but you were to wrapped up in your own life to think about me. :confused2:Now your in the dark like everyone else. Serves you right!:ymad:


----------



## Tesscorm

It sounds like you're on your way to finally getting some diagnosis!   I sure hope they can tell you something definite by Friday!!!


----------



## Farmwife

NOPE Tesscorm the stool test will take 8-14 day to get back.
I'm just hoping to get her cleaned out.


----------



## Tesscorm

But you do have an appointment on Friday to get some answers from the doctor, right???


----------



## kimmidwife

Oh my goodness, now I am on pins and needles to know what you suspect she has. How long will it take to get a confirmation?


----------



## Farmwife

Yes and no. We need to talk about her EIM's and her constipation. I hope by then she will have gone poo. She's lost more weight again even though she's on full food and eating like a horse. So yes to appointment but I have no idea about the test side of it yet. Something has to happen. RIGHT? I already told my dad we might be coming if things get worse. My dear daddy lives 20 miles from the kids hospital. BLESSING!


----------



## Farmwife

Tesscorm said:


> But you do have an appointment on Friday to get some answers from the doctor, right???



She'll still need to be scoped to get a few biopsies.

We are going to push for a MRE. I know it can take weeks to get one but it can take weeks to get anything done.


----------



## my little penguin

Glad you are heading toward something.
HOpe you finally get some answers and a plan.


----------



## dannysmom

I hope you can get the testing in soon! I am very curious as to what you and the nurse are thinking  Good luck with everything!


----------



## Tesscorm

Yes, you're right to push for it...  but, I've heard that they don't often do MREs on children's Grace's age simply because they're too little to stay still for that long a period???  I'm sure someone else here would have more experience with that...   I'm a bit vague on the 'x-ray' exams but there is a small bowel follow through and barium x-ray (maybe they are the same thing?) - before diagnosis, Stephen did have the barium x-ray He had to drink the prep liquid and, while I wasn't in with him, I don't think each image took much longer than a typical x-ray and you could probably sit in with her.   redface: a lot of info for someone who's vague on the x-ray exams...  hopefully, someone will confirm or correct!)


----------



## crohnsinct

What?  She has to be scoped?  I think I heard that somewhere before? 

Just read your PM and you have mentioned that before...hint hint everyone..go back and read the thousand pages or so on little farmgirl and you will figure it put. 

This is better than the mystery novel I am reading...


----------



## Tesscorm

crohnsinct said:


> Muscle weighs more than fat:ylol:


Now THAT's a true friend! :kiss:  Must be all these bulky muscles making my clothes feel tight!  :lol2:


----------



## my little penguin

DS just had an MRE
SOme children's hospitals can do them they have special movie set ups plus papsus like things to hold them .
the movie gogles work so they don't have to be sedated.


----------



## Farmwife

Grace had a horrible night of pain.
This is the first time my hubby said lets get her to the ER. 
What made it real bad is that she can't take ANYTHING be cause of her fancy stool test she will be taking. 
I think this is day 3 or 4 of no poo. 
We had to take our son to the doc yesterday day and the first thing the everyone said is has she done the stool sample yet. NOOOOOO! 
So I'm officially on poo watch.:eek2:

:ghug:


----------



## Tesscorm

Poor thing! :voodoo:  :ymad:  I feel so sorry that she's having to deal with all this pain! :ymad:

I hope your poo watch is successful today and you get that sample!!!

Good luck tomorrow at the appointment!!!  I hope you get some answers or a plan or SOMETHING!!!   

:ghug:


----------



## jmckinley

I am sorry that Grace had a bad night! I hope that you are finally on the road to an answer and a treatment! 

We need a cheerleader.... "Go Grace Go! We need Poo!" Thinking _moving_ thoughts for you!

Good luck with the Friday appointment.


----------



## crohnsinct

UGH!!!!!  Water, water, water!!! Drink, drink, drink!!!  It is thirsty Thursday afterall.  Maybe some ground flaxseed sprinkled in her food?    And is there a place you can take her swimming...if she even has the energy?  The exercise and something about being in the water...maybe pressure on the stomach...relaxing...I don't know what it is but every time I brought my constipated ones swimming they suddenly had to go.


----------



## Suzysu

Oh no I am so sorry she is suffering. I am keeping my fingers crossed for poo soon. big hugs xxxx


----------



## Farmwife

No poo yet. What other thread did I say she went poo in last? I can't find it.:ytongue: I think she went last on Monday morning.
She's drinking like a fish. Over three days she played and walked and rode her bike more than I care too.
Were going for a hike after nap time but her knee's once again is causing problems.
I NOW have to CALL tomorrow to make sure they had a chance to read the info I gave them. Then if they did we'll go from there. So now I'm scratching my head and wondering what will take place tomorrow?:shifty:


Oh it's my birthday tomorrow! 
I sure hope I still don't have to do poo watch tomorrow.:ybiggrin:


----------



## Sascot

Again I seem to have missed a whole bunch of stuff even though I feel like I'm always checking in to see how everyone's doing.  Waiting with baited breath to see what they think Grace has wrong with her!  Hope she goes poo soon.  Sorry she has been in a lot of pain.


----------



## Suzysu

:birthday2:

Hope you have a good day and don't end up on poo watch! xxxx


----------



## crohnsinct

IDK..I'll look around also.  Oh my goodness...all you want for your birthday is a little pile of poo!  Is that too much to ask for?


----------



## Farmwife

We have impaction break up. I think? Well at least she poo-poo.
:dance::dance::dance::dance::dance::dance:


What a horrible time. It took her hours of pain to pass it.
But she did. That's my girl!!!!!
She pass out once her sweet little head touched the pillow.
I pray for a better night than last night.
I need to get my mean voice on when I talk to the doc tomorrow.:ymad:

I don't want to have to be mean on my Birthday!!!:yfaint:
So not far!!! (stomping my feet and running out of the room).:lol2:

Have a good night y'all.


----------



## my little penguin

Glad you got your sample.
Hope for a quiet night


----------



## crohnsinct

You are a mean girl and you know it.  I have the posts in threads to prove it! 

Why do you have to be mean...I thought we liked this GP and they were reading your research etc...

Oh yaeh and I know I already congratulated you on the poo but for the benefit of everyone else...

[YABA DABBA POO!!!!!!!!!]


----------



## Farmwife

No,:ywow: we will have to get another sample on Monday. The holiday has messed this up. Sorry crohnsinct my hubby said since we have to shell out the money for this test, we WILL do it right. I will say it is an outrages price and our doctor didn't even mark it up.
So here's hoping for more poo on Monday.:shifty: I'm hoping she's clearing out and will be able to poo better. I can hope, leave me alone.


----------



## Tesscorm

Murphy's law, right?!?!?  At least the poor thing cleared out a bit and will feel/sleep better tonight!

You need your beauty sleep so you can be the gorgeous Queen of the Day tomorrow!:bdayparty:


----------



## Naturelover

Ooops! Looks like I started something with the Hershy Kisses and Dancing Poo. I was laughing so hard I had tears running down my face. Thanks everyone! I needed a good laugh.

So, I'm confused. Gracie finally poos and you can't use it? Huh?

I can sympathize with Gracie. Being backed up is ever so painful. How on earth could the child move? When I get backed up to the hilt, it hurts to turn over, it hurts to get up, it hurts.... Well, you get the idea. She's probably eating and drinking a lot because she's not absorbing enough calories or nutrition. I'm willing to bet there's a motility issue? You've go me hanging on the cliff girl. What do you think she has? OK, pm me and send me a link or something. Your secrets safe with me.

Dry eyes can cause intermittent pain as well as light sensitivity. Have you tried eye drops? Artificial Tears? If you get the ones w/out preservatives, you can use them as often as necessary. If you get the drops with preservatives, you can only use them four times a day.

I was going to do my stool sample and then I got my period again for the second time this month. Grrrr... Now I have to wait until three days after it stops. Grrrrrr..... I'm still pushing for my colonoscopy...

Keep us up to date. Don't leave us hanging. You know what that can do to us. 

Maybe if you give Gracie some Hershy Kisses, she'll poo! Snicker, snicker.

Praying for you all. Blessings, Glori


----------



## Naturelover

David said:


> I haven't given you that power because I know you'd add things like dancing poo to the system and I feel it's important that we be more mature and professional than that here.(


Sorry David. If we were more mature and professional around here, the site would be boring and we would all have to wander off to the site with the dancing poo! Laughter is the best medicine.

Here's your dancing P! (I'm sorry, I thought I heard challenging words. Snicker, snicker)


:banana::banana:
:banana:..........:banana:
:banana:.............:banana:
:banana:..................:banana:
:banana:.....................:banana:
:banana:.........................:banana:
:banana:.......................:banana:
:banana:.....................:banana:
:banana:..................:banana:
:banana:................:banana:
:banana:.............:banana:
:banana:...........:banana:
:banana:.........:banana:
:banana:......:banana:
:banana:...:banana:
:banana::banana:
:banana:
:banana:
:banana:
:banana:
:banana:
:banana:
:banana:



Soooooo.... In light of all that, can we have our dancing poo smiley? Please.........


----------



## David

Very well...



Type :poop: to make it.


----------



## Naturelover

Sooooooo... Is this Danciing Pooh? Hershy Kisses?


----------



## Naturelover

Gracie, this is what I want you to do on Monday.... 

Flowing thoughts coming your way.


----------



## jmckinley

Yay for poo! I hope both of you sleep better tonight! 

:bdayparty:


----------



## Naturelover

Happy Birthday!! :kiss:

:birthday2:

:emot-dance::emot-dance::emot-dance::emot-dance::emot-dance::emot-dance::emot-dance::emot-dance::emot-dance::emot-dance::emot-dance::emot-dance::emot-dance::emot-dance::emot-dance::emot-dance::emot-dance::emot-dance::emot-dance::emot-dance::emot-dance::emot-dance::emot-dance::emot-dance::emot-dance::emot-dance:


----------



## Suzysu

YAYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYY!
Poor grace having to be in so much pain before she finally goes - Get mean with that Dr (or if not mean then I often find it helps to cry!!). Get some answers for poor little Grace. Oh and also try to have a nice birthday!!!! xxxx


----------



## Sascot

Yay for Grace managing to go poo!!
:bdayparty:
Hope you have a fabulous birthday and don't have to be too mean to the doctor :rosette2:


----------



## my little penguin

Happy happy birthday!!!!!
ooh: just for you


----------



## Catherine

Happy birthday


----------



## Clash

:birthday2:

Glad Grace was able to poo!!! Hope she gets you that sample on Monday!!! Thinking good moving thoughts for you guys!!!


----------



## Farmwife

What a birthday morning.
My hubby get up earlier that normal and went and got me a vanilla cappuccino. SWEET!:kiss:
Grace said happy birthday Queen Mommy. Adorable!!!:kiss:
Then I step on onto a squish rug full of dog urine. Happy B-Day to me!!!!:tongue:

The only thing that's keeping me going is crohnsinct is about my mother's age!:dance:
 Mom's 5? and I'm 3?. Of course it's helpful to have a twin that I'm aging better than.:rof:


----------



## kimmidwife

:king:Happy happy Birthday!!!! I am thinking of Grace this morning and hoping you haves good birthday and labor day weekend! :beerchug: a toast for your birthday! cheers!


----------



## crohnsinct

Well I see David already gave you (us) his gift. 

What are you thinking?  Just because it is your birthday you think you can out me and how ancient I am?  Consider that your gift girlfriend. 

Dang!  My dog pee'd on the carpet last night too...see we really are soul sisters like it or not!  Yes I know I am your way older soul sister. 

Did you freeze the poop?  Just in case the doc says you could send it today and it won't screw up the incredibly expensive test?  

Good luck at the appointment I hope the doc has lots of info for you...afterall it is your birthday.  

:bdayparty:


----------



## Farmwife

I didn't out you crohnsinct!!! Every one knows your old and grumpy!!! Just kidding!:shifty::rof::kiss:
No to the frozen poo. You have to mix the chemicals. This is the kind of test you have to mix different things into it and than send it fed-ex on a special kind of shipment. It HAS to be done a certain way.
We can not afford to mess this up and I mean that literal.
NOPE we will do it RIGHT!!!!!!!!!


To naturelover- Good idea about dry eyes. My Grandma has that. I'll check next time. All I have to do is take her crown away and see if she can make tears.:rof:


David I never voted for dancing poo!!!! Anything that makes my yummy Hersey's Kisses look disgusting should never be allowed!!!!:voodoo:


Off to my birthday lunch at Cracker Barrel! YUM!


----------



## Naturelover

Too late! Ya snooze, ya loose. We got our dancing poop. 

Sorry you and crohnsinct are stepping into soggy places inside. :stinks:

Maybe Dustykat can find a special smiley just for you two.:kiss:

Awwwww, don't take Gracie's crown off. Just give her the artificial tears. It makes for a much happier day.

Have a wonderful day today "Queen Mommy"

Blessings, NL


----------



## crohnsinct

Cracker Barrel is NOT clean eating!!!!  Just sayin.....

But if you are there get an extra helping of the hash brown casserole for me!  I LOVE Cracker Barrel but none up north...Dang!


----------



## Naturelover

Eat some pinto beans for me. Mix em' with applesauce. Delicious!


----------



## crohnsinct

Pinto beans and applesauce?  Really?  Well depending on how they are prepared pinto beans = clean...applesauce no sugar = clean...but the question remains why on earth would you eat Pinto beans and applesauce on your birthday when you can get butter and sugar laden grits, crispy country bacon and hash brown casserole!!!!!!!!

Come on Farmwife be a dirty girl on your birthday!


----------



## Suzysu

I use eye drops with eyebright (euphrasia) in them for my kids when they get sore eyes, Its very calming for sore eyes - seems to do the trick!
I hope you have had a great birthday! xx


----------



## crohnsinct

:yfrown: I just realized yet another thread being hijacked to discuss food.  I think we have issues (yes I know it was me but you are all guilty by association!) ...maybe we need a Much Ado About Food thread....


----------



## crohnsinct

Hey little miss popular...clean out your stored message folder...trying to respond and it says you are full...or are you blocking me:shifty:


----------



## Farmwife

My bad doing it now!


----------



## Farmwife

Well for the big announcement..............
The Doctor believes Grace has Mastocytic Enterocolitis (ME), a new form of IBD.
The doctor and head nurse studied up on it and yes they feel this could be it.:thumleft:
I've been reading also and it fits more than I care to mention.

A special thanks to the HarveyFamily for pointing us in the right direction. I'm so sorry your Haley has to go through this. 

Tuesday We will be meeting with the Doc and discuss all the findings. 
So little is known about this ME. 
So sorry to ruin every ones day your stuck with me till  things change. Which of course they can!:shifty-t:

Also another special thanks to crohnsinct for being a wonderful sounding board and a blessing to me. Don't tell her. It will go to her head!:yfaint:


----------



## crohnsinct

Aww! See you like me...you really like me! 

Mixed emotions...so hoping (and still praying) it is a big fat nothing but if you have to be hanging with anyone I am glad it is with us...I would miss that adorable Grace's picture! 

Like I said before..if ME gets it's own subforun I will run your campaign for sub forum moderator...just as long as you don't get smiley access!


----------



## Farmwife

I'm thinking about starting a new thread and call it....Little Farm Girl and a new journey.
That way I can keep a diary, I mean thread about (ME) and Grace.

Ya or Nay?????


If David is not going to let DustyKat touch his smiley, he won't let me.:yfaint:


----------



## crohnsinct

Well it might ruin your world record goals but I guess in the interest of anyone searching for ME info (and please spell it out on the thread title so no one thinks it is Me and Grace cuz then really do they even care...oh no I di int...not on your birthday!)  they wouldn't have to see all the country/city garb and food fights etc....

Who am I kidding we will hijack that thread just as easily.


----------



## my little penguin

Hugs truly hope this is your answer.


----------



## Farmwife

crohnsinct said:


> (and please spell it out on the thread title so no one thinks it is Me and Grace cuz then really do they even care...oh no I di int...not on your birthday!)  .




OK WORLD THIS IS MY LAST THREAD ON THIS ONE AND IT WILL BE.......... 

crohnsinct is old enough to be my MOTHER! 
Oh, yes I did!:emot-nyd:


:rof::rof::rof::rof::rof:


----------



## Tesscorm

What, she DIDN'T mean "ME" (aka Farmwife) and Grace!  :lol:  Thinking today being her birthday and 'her' special day is going to her head!  :Karl:

But, seriously...  I am really glad it seems you are finally on the road for some treatment for Grace!!  Hopefully, Tuesday's appointment will bring more answers for you!!!  And, while I am sure Crohnsinct will waste no time hijacking your thread with talk of food :yfaint:, I'm sure no one will mind if you do start a new one about ME and Grace!


----------



## Naturelover

I do believe we all have a huge case of ADHD! LOL! Couldn't stay on one topic if our lives depended on it.:ytongue:


----------



## Naturelover

Make sure you let all us thread hijackers know which thread you are moving to so we can stay in touch, up to date and apprised of everything. 

Oh! And our ADHD will probably act up from time to time. Can't be helped. Just laugh with us and forgive us. Thread hijacking...:ywow: For Crohnsinct, It must be her senility setting in. She can't help it. Tee, hee! For me, it's my rsd brain. Hee, hee.

Love ya,:heart:
Blessings,
NL

P.S. crohnsinct old enough to be your mother?:shifty: Just how OLD is she????????:ywow:LOL!


----------



## DustyKat

crohnsinct said:


> Like I said before..if ME gets it's own subforun I will run your campaign for sub forum moderator...just as long as you don't get smiley access!


Start campaigning crohnsinct! it already has it's own forum, it is a part of the Microscopic Colitis forum...

http://www.crohnsforum.com/forumdisplay.php?f=258

Dusty. :tinfoil:


----------



## Sascot

Well I thought I would write one last reply on this thread before you ditch it!  Hope this diagnosis means the beginning of a happy, in remission Grace!
Very glad you are sticking around - would miss you if you left us, even though it's not a good thing that Grace isn't well.


----------



## crohnsinct

Her mother had her before she was 20!!!!!!!!!!!!


----------



## Farmwife

Yes my mommy did and I have an older brother and she was married at 16!!! :eek2: Had 6 kids by 26. She became a Grandma at 40.

Shoot I'm not suppose to write in this thread.:tongue: Moving on.:hug:


----------



## crohnsinct

Still makes me almost 20 years older than Farmwife so now the question remains...weren't you taught to respect your elders? 

Hey Dusty...old lady smiley please...


----------



## Farmwife

I was taught to respect the elders that deserved respect!:tongue:


----------



## Suzysu

I hope that if this is her diagnosis that she can get the meds she needs and will go into remission xxxx


----------



## Momto2girls

Oh wow -- I haven't been around in so long, I am way behind. But I am so glad to see you might have a diagnoses!? And I am flabbergasted as this sounds SO much like our Gracie -- and I'd never heard of it before (and I thought I had read everything on the topic of Crohn's?!) Wow -- I might have to ask our GI about this. I see that bladder spasms are a big part of it and that was actually our initial trip to the hospital -- to urology & then nephrology -- for bladder spasms -- prior to even making it to the GI when the bowel problems got so much worse. Plus, she's got severe food & seasonal allergies so it makes sense that something allergy-related would be an issue for her. 

Wow -- how'd your doctor decide to look into this? And is he going to scope in order to diagnose it? I do not want to have to scope again!!


----------



## Farmwife

Hi Lauren how's your Gracie been doing? I think of you guys often.

Well my dear doc JUST got on board with us a few weeks ago. When he saw first hand how sick she was. The blood test also have changed.
Anyway the HarveyFamily has a young girl with this ME and I notice her story started ringing the bells and upon talking to them and research I figured that my doc needed to know this and with in a few days I got word that he DOES believe this COULD be it. So tomorrow we'll meet with them and discuss what to do. Yes you have to scope because you have to use a special stain on the biopsy to see what you need to see. You can PM me if you want further info. Glad to see you around!


----------



## my little penguin

Lauren-
Check to see if her biopsy slides were stained and how.
IF they used CD-117 then the mast cells show up otherwise nada.
ALso see if they can restain them- not sure on this one.
Here is the paper about the difference in the stains.
Docs like to "say" the mast cells would have shown up anyway. (HAHAHAHA)
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3033552/

They tend not to argue with NIH


----------



## Farmwife

WOW my little penguin I'll be talking to you more about "ME"!
I just feel bad that it's my kid and I still don't know as much as you about it.


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## my little penguin

We thought DS had "ME" for a while and I pull research papers on "stuff" I don't care about for work so you can imagine what I do for things like say my kids.

I think I have read probably 20 papers on how it and mast cells/IBD go together.
PM  me if you have any specific questions.

OUr GI did pull the well the slides were stained for mast cell bit with us- then I showed him the paper (evil laugh). He then decided to check with pathology for us.(big grin)


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## Momto2girls

Wow -- this is great -- thanks. They say they checked for eosinophils -- is it the same stain? I'd be so happy to restain if we could. I just KNOW the GI is going to say "that can't be it b/c ________ (fill in the blank)" And dismiss it. I just know it! 

She's just getting progressively worse since going off the sulfasalazine. Now she's having D constantly. She's back to having potty accidents from bladder spasms and urgency (which are always bowel related) and is doubling over herself and grunting at meals -- not much appetite. 

So, pretty much same old same old. 4.5 years old....been having the same issues for 2 years. ????????????? I'm considering a chiropractor. I don't know what else to do!?


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## Farmwife

Momto2girls
Remind me. Do you have a dx for her?


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## Momto2girls

No, not yet. She was scoped in April and they found inflammation in her ileum and left colon as well as gastritis in her stomach with H. Pylori. So they treated her with sulfasalazine (for the inflammation) but didn't dx Crohn's b/c there was no damage (yet). I think they still think it could have been inflammation from infection, but we tested for infection (including stool cultures) and there wasn't any. Also we have a lot of IBD in the family (on both sides) so ????? But still no dx. In the meantime GI won't let us stay on sulfasalazine and things are slowly but surely going downhill...again.

Have I mentioned I hate doctors? This is our second GI (same group though) and still...getting nowhere...


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## my little penguin

Momto2girls said:


> Wow -- this is great -- thanks. They say they checked for eosinophils -- is it the same stain? I'd be so happy to restain if we could. I just KNOW the GI is going to say "that can't be it b/c ________ (fill in the blank)" And dismiss it. I just know it!


Not the same stain have them look at the figure in the paper- there is a std stain used which is a catch all and would show some mast cells.

But the immuno... ( CD-117 is different.

If I remember right she had some "stuff" show up on her biopsy.

You can have the biopsy slides re-read for Crohn's/ UC  at another center.
We did- different findings.
WE had Ds's most recent sent out. PM me if you want the info on how /why etc...


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## Farmwife

I know crohnsinct is going to give me heck for this but...........perhaps time for 3rd GI.
I'm surprized given the family history that they wouldn't do more. If they can't tell you it's crohn's or UC, MAKE them tell you what it is!!!!!!!!
Our poor Gracie's are just to cute to go through this hell. I feel for ya!


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## Momto2girls

Yes, penguin -- good memory!! I know I am probably looking at needing to send slides out -- have a good friend in Philly so maybe there? I do think they're #1 these days. Ugh. You wouldn't think this would be so hard? I am going to call tomorrow and see if I can email the paper to the doc and get his take on it. Depending on how responsive/dismissive they are I'll plan my next move.  Poor baby...would you believe the only thing she wants to eat these days is spoonfuls of sunbutter (she's allergic to nuts, so no peanut butter). I continue to suspect gluten b/c she struggles so much with eating -- couldn't even have the cous cous I gave her tonight??

I don't know...

Farmwife -- you're right! We need to get our Gracie's all better!! It is WEIRD though how much ME sounds EXACTLY like her!?!?!?!?!? The bladder (we went through a ton of issues with that, and now they are MUCH better but flare everytime she's not well) to the allergies...so so strange. Anyway, not sure the biopsies/labs really match up but we'll see....????


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## my little penguin

> Except for urticaria pigmentosa (fixed reddish brown maculopapular lesions) and cutaneous mastocytosis, mast-cell biopsy findings are difficult to identify via standard hematoxylin and eosin staining (Figure 1), and in many cases, specific pathologic features such as crypt distortion, mucin depletion, cryptitis, abscesses, granulomas, thickened collagen bands, shortened villi, or excessive eosinophils/lympocytes are not seen in mast cell–related disease.6 Consultation with a pathologist is essential to ensure that an appropriate evaluation is performed. The excess of mast cells can be evaluated via immunohistochemical analysis for CD117, mast-cell tryptase, or Giemsa staining (Figure 2).



from :
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3033552/



That is the key *part.*
Hope she feels better soon


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## Momto2girls

So do you think this means if she DID show cryptitis on her biopsy (and she did) that it CANNOT be ME?


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## my little penguin

From what I understand still need to talk it over with our GI it sorta goes like this
IBS
IBS like ( "ME") increased mast cells but not cellular changes so "Normal" biopsies
Crohns/UC- cellular changes from increased mast cells so abnormal biopsies.

So in theory you could have *some areas where the cellular changes had not occurred yet but inflammation* was happening on a regular basis due to the increased mast cells in the area.
You could also have other areas where there was an increased mast cells with changes because the inflammation had happened way too many times in those areas thus resulting in crohn's/UC.
Once the inflammation gets started then the whole body could have the extras from ME or true EIM if you had crohn's UC.

Now if you can stabilize or decrease the number of mast cells then in theory you could reduce the chance of the ME  progressing to crohn's/UC or the crowns/UC from progressing further in the GI track.
ALl theory on my part but that is what i am going with.

Hope that makes sense.


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## Momto2girls

Yes, very helpful, thanks! So, in theory (of course) would you think if she were taking Zyrtec (and prevacid, FWIW) at the time of the scope, could her MAST cells be masked or less? I know for RAST testing and skin testing you must be off of your anti-histamine, but for this would it matter? Gracie's been on daily Zyrtec since she turned 2. Hmmm....


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## Farmwife

I know my Grace was on Zrytec also but the doc took her off because he thought that would do more harm than good. Yes we did See an improvement. But not thinking this had anything to do with each other.


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## my little penguin

DS has LTFA among other thing so zyrtec/prevacid daily here as well for many years still showed the cellular abnormalities on his scope. but none were found on the scope after pred the year before.
he never had his mast cells counted on his scope. we are still working on that but since he already has crohn's dx probably not worth the effort more academic at this point.


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## Momto2girls

OK well I am for sure calling tomorrow. Gah! I have got to get this under control somehow. I have a blog (more for art and craft projects that I do) but I've thought about adding a section just for this stuff. Like the story and what we've been through... but maybe it is good for me just to have a fun distraction?

UGH!!!!


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## Momto2girls

I left a message for the GI -- so we'll see how long it takes for them to get back to me. I am concerned that b/c she was on her Zyrtec at the time of the scope maybe the MAST cells wouldn't show -- or wouldn't show up as much as they would without it. I will tell you she had an anaphylactic reaction to a cashew at age 2 -- and her immune system has been wonky every since. So I would not at all be surprised if this is what has been going on with her? 

I will keep you posted!


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## Farmwife

Am I wrong that I'm impressed that this thread has over 13,000 hits???????????????:ybiggrin:

Of course that's mostly strangers looking at my life. :shifty-t:

Am I wrong that this kinds of creeps me out now???????????????????:sign0085:


:rosette1:


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## my little penguin

Just get a dx and then your life will become boring....
= no hits
Problem solved


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## crohnsinct

I was gonna say I thought you were making this all up as a ploy for attention.....


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## Farmwife

Yes crohnsinct how did you know.

My life is a soap opera and it will be called........................The Bold, the Beautify and the Lou.

 Picture in your mind a black and white TV and on it farmwife and crohnsinct 
( the house keepers) entering a fancy room in a mansion.

Farmwife- Wow have you ever seen a pile of poo that big?

crohnsinct- We couldn't hardly flush the Lou.:yfrown:

Farmwife- Wait what's that sound.:shifty-t:

crohnsinct- Oh no, she's going to the Lou again.:frown:

Farmwife- You go clean it.

crohnsinct- I can't I'm pregnant. It's your brother's father's second cousins baby.:rosette1:

Farmwife-That's impossible. He died 10 years ago.:shifty-t:

Stayed tune for further BB&L


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## crohnsinct

and THAT is why you have 13,000 hits!


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## my little penguin

yeah that

LOL


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## Tesscorm

:rof:  I'm setting my PVR for the next episode!


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## DustyKat

Stone the flaming crows!!! 

I know I posted somewhere in there but I have missed...

Your birthday...:birthday2: 

Dancing poops...

I didn't miss the diagnosis but I will stick that one in...

	
	
		
		
	


	





And a smiley that describes your "relationship"...

	
	
		
		
	


	





Now kill the thread! 

	
	
		
		
	


	





Dusty. :hallo3:

Oh, and an old lady...


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