Little Farm Girl - Update

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

Glad she is happy!
 
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!
 
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.
 
AND Wednesday can't get here fast enough!

Big week/month for Crohnie follow up. I pray everyday for these pumpkins!
 
Oh my goodness - I am keeping my fingers crossed for you, and know that Thursday can't come quickly enough for you guys xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
 
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!!
 
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!!
 
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.
 
: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
 
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
 
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
 
: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!
 
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! :)
 
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!
 
No news???????????????????????????? Does this mean they have kept little far girl in????????????????? fingers crossed she is ok xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
 
: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
 
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.
 
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
 
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
 
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?
 
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:
 
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! :)
 
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.
 
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!
 
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??
 
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.
Click to expand...

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
 
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.
 
Sounds like Monday will be 'results day' for us both!!!! Hope you all have a good weekend! xx
 
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 :poo:.
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 :poo: 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
 
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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
 
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
 
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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!
 
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???
 
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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?
 
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.
 
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'.......
 
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:
 
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!
 
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
 
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
 
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:
 
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
 
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
 
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!
 
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!
 
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?
 
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.
 
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! :eek: 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:
 
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 :)
 
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
 
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.
 
:eek: they still haven't called? - That must be a good sign? Fingers crossed it is. Did you find a car? xxxx:shifty:
 
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
 
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:
 
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:
 
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
 
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 :) )
 
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.
 
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!
 
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
 
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
 
: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:
 
: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!
 
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.
 
Glad to hear!!! :panda::sun::panda: And he sounds like a wonderful doctor!

Have fun today! :D
 
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
 
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.
 
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.
 
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.
 
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.:eek:rder:
I just kidding don't show up and beat me please.:runaway:

My doc here will have the results for me.

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

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.
 
Oh WOW!!!:eek:
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
 
: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
 
Last edited:
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
 

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