# The Little Farm Girl, LDN, Full EEN & Mayo Clinic



## Farmwife (Oct 14, 2013)

After much debate with doctors (I'm sure they hate me now) and wanting what's best for my little farm girl 
we've decided to remove all foods and leave her on full EEN.

She will still be on LDN and once her weight gets stable we will up her dose to 2.0mg.

This current flare up brings-

Abdominal cramp
constipation with fissures
vomiting
loss of appetite (she's back to using her pump full time)
Asthma
Eczema
Bladder inflammation
Blood sugar problems
Joint weakness and pain
Low vit D, low zinc and magnesium 

Now if you can't tell what's being caused from her IBD or EGID's, don't worry...neither can her doctors. :yfaint:

So we all felt full EEN would be the best for both diseases at this point in time.

New medications
Phenergan for nausea 
Tramadol- if I want it for her.


I started the first steps today of seeking an urgent second opinion from Mayo Clinic in Minnesota USA, 
It's not just for a GI reasons but for an overall approach. 
She has so many area's that are going haywire. 

My mommy gut is telling me it's all linked. 


On a good note:

We bought our first snow cone machine and I found artificial flavoring and we made some and she LOVED it.  
I mean I have to be the COOLEST MOM EVER, who else lets their kids eat sugary snow cones for dinner.:rof:


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## my little penguin (Oct 14, 2013)

I did
You can use Kool aud packets plus sugar to make cheap flavors


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## araceli (Oct 15, 2013)

Don't worry, you are not the only mom a Doctor  hate. I know they are the ones that study all those years, but we are the ones that see our kids everyday. I learned with my daughter that I have to follow my gut. Look for answers until you find them, it does not mater if is 2 or 3 or 4 opinions. I wish you the best with your appointment at Mayo.


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## EthanClark (Oct 15, 2013)

Good Luck Farmwife. I hope they are able to find what will work best for Grace to treat all her different conditions. Clark has been on EEN since December last year. I believe we will keep him this way until he is no longer in remission. Hopefully it will last a very long time. It is hard at times to keep doing the EEN as he asks to smell our food when he is having a hard time but he has been such a trooper throughout all of this. He knows if he eats then he hurts so as long as it is working we will keep it up. :ghug:


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## Kev (Oct 15, 2013)

IBD by itself is a nightmare.  What you are going through is beyond description. All I can do is offer my prayers and well wishes.


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## kimmidwife (Oct 15, 2013)

I really hope mayo clinic can give you some good answers. I have heard very good things about it!!!


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## Mehita (Oct 16, 2013)

Welcome to Minnesota


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## Sascot (Oct 16, 2013)

Sending you hugs all the way from Amsterdam! Hope the full EEN helps and the appointment comes through quickly.


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## Malgrave (Oct 16, 2013)

Sounds so hard but I know how you feel!
We had to seek for help from another country last year and it was worth all the trouble.
Good luck in Minnesota!
Have they ever done basic immunological tests for Grace to rule out posiible immune dificiencies?


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## Brian'sMom (Oct 16, 2013)

Good luck at Mayo. You should be able to get in quickly...we did. Going with your mommy gut is always a good start!


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## Farmwife (Oct 16, 2013)

We got in the first part of November. That was quick!
Malgrave, she's never had that kind of testing. I'll have to ask them about it.:hug:


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## Jmrogers4 (Oct 17, 2013)

Glad they got her in pretty quickly.  Hope you get some more answers.
Meant to write earlier but things kept getting in the way.  I would think full EEN would be a little of a relief even though it will be hard but almost like one less thing to worry about kwim.  You will know she is getting all the nutrition that she needs and don't have to worry about reactions to different foods.


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## Farmwife (Oct 17, 2013)

Yes right now the full EEN is a good thing. She now will only finish a few bites of her snow cone but then says she's full.

I'm thinking this flare has to do with IBD ONLY. 
6 wks before the last scopes she was EEN only. She did have a couple weeks of food after that but not to much and then she stopped eating. By now if it was an EDIG's thing it would have stopped because of full EEN. 

I want her to have an MRE!
I've asked for an MRE three times. I've always been told no. 
 I have always felt that the problems are where we can't see them with scopes.

I just pray The Mayo will help.


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## Mehita (Oct 17, 2013)

Have they said why they don't want to do an MRE? That always annoys me. If they refuse do a certain test, tell me why. Sometimes it's for really, really DUMB reasons.


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## my little penguin (Oct 17, 2013)

It may be your insurance
Alot of times that can be the reason for a NO.


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## Niks (Oct 17, 2013)

Poor Grace and poor you    :ghug::ghug::ghug:

Really hope Mayo Clinic comes up with some solid answers and solutions.

I have everything crossed for you xxx


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## Jfarrelly (Oct 18, 2013)

My little boy is 4 yoa and was diagnosed with Crohn's 4 months ago we've been on Pentasa, Sulfalizine, Rowasa, Cortifoam, and multiple times on Pred. We seeked a second opinion at CHOP today  and they suggested enteral feedings. We have yet to be in any form of remission how is little one doing with the enteral feedings? Did you start taking it orally, or by NG tube? I know where you are coming from hugs to you and your little one.


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## Farmwife (Oct 31, 2013)

Jfarrelly said:


> My little boy is 4 yoa and was diagnosed with Crohn's 4 months ago we've been on Pentasa, Sulfalizine, Rowasa, Cortifoam, and multiple times on Pred. We seeked a second opinion at CHOP today  and they suggested enteral feedings. We have yet to be in any form of remission how is little one doing with the enteral feedings? Did you start taking it orally, or by NG tube? I know where you are coming from hugs to you and your little one.


Sorry it took so long to get back to this.
Corn season in full swing + planning for a trip + plus a sick girl + one tired mama.

Grace started with an n-g tube. We had a home health care nurse came and put it in every 4 weeks. Grace has another disease where here body fights food protein as if it's a invader. So EEN for her is a must to survive. She now has a g-tube.
My son was on EEN for 3 weeks and did it orally and still drinks 2 a day. 
I think EEN should be a must for treatment. 
Even if it's just for growth it's worth it. 
She also does LDN.

Off until after the trip. I hope all is well.


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## Mehita (Nov 1, 2013)

Do you have a date yet, FW?


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## Farmwife (Nov 1, 2013)

Mehita said:


> Do you have a date yet, FW?


Yes, it's sooner than later,
Still have so much to do.

Update:
Grace's pain in her belly has started again Her pain radiates to her back.

She's on Zofran everyday. 
She would vomit in the evening and half the day's formula would come out. 
The Zofran is helping but no one knows why 
her stomach isn't draining in the evenings and sometimes in the morning.

:confused2:The most upsetting is the fact the my sweet baby girl has decided 
she hates her formula, hates her medicine, hates her backpack and calls it evil. hates telling me when she hurts and last but not least she hates her g-tube. She took her extra g-tube out of her Teddy and said to sew it back up to normal.:confused2:
She ask for food that she's never been able to have and says I'm being mean to her when I say NO.

I'm glad we're going to the Mayo. Can't get their quick enough.

Bye y'all.


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## Sascot (Nov 2, 2013)

So sorry to hear that. Really hard to watch kids when they are not happy about treatment. Thinking of you! :hug:


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## DustyKat (Nov 2, 2013)

Sending much love and hugs your way FW and mega loads of luck that the Mayo clinic is able to provide you with solid answers and your princess lasting relief! Bless her. :Karl: 

Thinking of you both, always. :ghug: 

Dusty. xxx


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## crohnsinct (Nov 2, 2013)

Aw!  Poor pumpkin.  Might be time to ask about a therapist.  She is dealing with A LOT and it couldn't hurt to talk to someone.  You are also dealing with a lot and a little help here might go a long way.


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## dannysmom (Nov 3, 2013)

I just want to wish you best of luck at Mayo. I hope they can help Grace more. HUGS!


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## khollmann (Nov 3, 2013)

I wish you the best of luck!  The Mayo in Jacksonville, FL has been amazing to my father and I.  The overall approach is the best.  I live in NY, so I get a similar approach at Stony Brook University Medical Hospital. 

I was diagnosed finally, when I was 15, and my Mom fought with all the dr.'s too.  Had too.  And boy am I forever grateful that she did.  Hugs to you!  You are a wonderful MOM.


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## Mehita (Nov 6, 2013)

Any news Farmwife? Been thinking of you. And it did snow after all!


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## Niks (Nov 6, 2013)

Thinking of you and Grace too FW.  Hoping everything is going well xxx  :ghug:


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## Brian'sMom (Nov 8, 2013)

You will like Mayo. I hope you get some answers. And your sweetie gets some relief soon.


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## Sascot (Nov 9, 2013)

Was also thinking of you today.  Hope Grace is doing alright.


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## Farmwife (Nov 9, 2013)

We're back.
Mayo was AMAZING. So much help from everyone. From the hotel to the hospital it was all first class.

Over 10 doctors, over 4 days. Every doc we meant took time and asked detail questions.

Meant with the GI, she was amazing. Loved her. 
She said she would want to do a ct scan, scopes, pill cam and mobility test. She said she would want to get the FULL picture in order to give her opinion on what's causing these flares. 
Sounds like a dream right?????
:ybatty: Well we didn't get to see her until Thursday and we were flying out on Saturday. She asked if we could stay but that wasn't a possibility. 

Grace had a bone-age scan of her hand which showed her bone was younger than her real age. Her Endocrinologist said he will call me with his opinion next week.
*What does the younger bone age mean??? *

Grace is also anemic now.:confused2: 

During the big appointment on Friday to discuss all the findings they do wonder if her EEN is causing a problem with her pancreas. Her blood sugar is going to low and they think it's the EEN and being continual tube fed is the problem BUT they all agree she has to stay on it.:ybatty:

Overall I'm very happy and am considering going back but not sure yet.


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## Brian'sMom (Nov 9, 2013)

So glad your trip went well. We also were amazed with Mayo. Since you didn't get to see the GI doctor until Thursday, did you say they didn't do the tests she was wanting to do? (scopes, pill cam, etc). Were they able to do any tests before you had to leave?

Younger bone age in crohns is good. Means they have a window to help get things under control and time for her to catch up in growth


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## CarolinAlaska (Nov 10, 2013)

Jaedyn had a 10 year old bone scan at age 13 - it was the poor nutrition prior to her diagnosis.


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## Farmwife (Nov 10, 2013)

Brian'sMom said:


> So glad your trip went well. We also were amazed with Mayo. Since you didn't get to see the GI doctor until Thursday, did you say they didn't do the tests she was wanting to do? (scopes, pill cam, etc). Were they able to do any tests before you had to leave?
> 
> Younger bone age in crohns is good. Means they have a window to help get things under control and time for her to catch up in growth


She had the ct scan. We were asked to come back but I'm not sure we can.
Still waiting for results of the scan.
The GI assumed she was the first doc we saw and I informed her that wasn't the case.
 We should have seen her first but their system is set up with first available gets schedule first and so on.
 Her head doc said if we come back that she personally will make all Grace's appointments.


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## dannysmom (Nov 10, 2013)

I am glad the experience was all good. I hope you are able to find a way to go back. Thanks for the update!


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## Niks (Nov 10, 2013)

Sounds amazing FW.  I so wish I could get the money together to take J.

Fingers crossed for your scan results and getting back there!!  :ghug: xxx


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## kimmidwife (Nov 10, 2013)

FW,
I hope you guys can get back there! Sounds like it was amazing. I am now in the process of deciding where to take Caitlyn for a second opinion.


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## Sascot (Nov 11, 2013)

Sounds really great. What happens if you don't go back?  Do they just send all their opnions/results back to your usual doctor?  It's a pity all hospitals/doctors aren't as good!


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## Farmwife (Nov 11, 2013)

Sascot said:


> Sounds really great. What happens if you don't go back?  Do they just send all their opnions/results back to your usual doctor?  It's a pity all hospitals/doctors aren't as good!


Yes they'll  work with the docs here. It's just with Mayo you can get things done fast where her hospital her takes awhile. Still it's good to know they will try to help all they can.:hug:


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## araceli (Nov 11, 2013)

Hi Farmwife. So glad everything went good. some of the big hospitals let you see the test results in the internet. I hope you get some answers.


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## Farmwife (Nov 11, 2013)

Good news

:dance::dance:CT Scan was normal for the bowels. YA! :dance::dance:
She still suggest scopes and a pill cam but we'll see what Grace's ( Devos) hospital says about that.:confused2: A trip is just not doable to the Mayo again.

The blessing is that the ct scan did show a problem with her spleen. So on to another specialist.:yfaint:

Update on Grace:
She's sick with a bad cold again.
Asthma, Eczema, poo pains and VERY painful hiccups are back with a vengeance.

I think where ready for a change in meds.:ghug:


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## Jmrogers4 (Nov 11, 2013)

I think we may be heading there as well - medicine change that is...


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## Sascot (Nov 12, 2013)

Hope she feels better soon. :hug:


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## kimmidwife (Nov 12, 2013)

Hope she feels better soon!


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## Mylittlesunshine (Nov 12, 2013)

Hi Hun 
Not been on here much so trying to catch up
So glad you made it to mayo clinic
And that it was worth the trip. 
I do hope you manage to get answers for grace
So you can put her on the right treatment. 
Hugs


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## Suzysu (Nov 13, 2013)

Hi - Sorry Grace has been so poorly again - sounds like the Mayo clinic are helping a little - Sorry to not have been on here much and no time to catch up properly - Just wanted to send you hugs and support xxxx


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## Farmwife (Nov 21, 2013)

:ghug:Hi all.
Corn is coming to an end on the farm as the sky threaten to drop tons on snow.
It's hard to believe another harvest is behind us. 
The quiet solitude of winter is welcomed on this farm. 

Well onto the reason for the post.

All opinions are in from the Mayo Clinic.
The GI at Mayo had Grace's slides shipped to her and their pathologist reviewed them.
They believe her disease was still very active during the second scopes. 
As where her current GI believes there was improvement and classified it as mild.

Mayo GI believes that Grace has gastritis in the stomach that went into deeper layers by the second scopes. She now believe this could be the reasons for Grace's vomiting. nausea and lack of appetite. The path reports from her current GI never mentioned that.

Also her GI and Endo from Mayo are concerned because she has tested low in her serum cortisol. In her letter she stated that Grace is at risk for adrenal insufficiency. She recommended possible stress doses of steroid "might be needed".

The dietitian and Endo believe the reasons for Grace's sporadic low blood sugar could be from the continual feeds on EEN. They think she might run the risk of diabetes and such if her pancreas starts having more issues.
Her Primary doc and I also agree. It started when she started EEN. 

Now the million Dollar Question..........................
Does she have just EGID's or just IBD or both?????????
She doesn't know.:ybatty:
She says by the second scopes she should have cleared most eos. She didn't.  Matter of fact in two area's it  slightlyincreased like you see in IBD. 

She is recommending another scope and pill camera. 
Her comments were that she believes Grace is "evolving" into full IBD.
So not too different then what her current GI thinks about early crohn's.
Mayo GI just thinks her disease is more active then what her current GI thinks.

The Mayo GI will be calling soon. I have more questions.
Her current GI will be getting a copy. I will be calling and discussing the results and a possible scope or maybe a med change.

Keep in mind we still have to meet with the Urologist down state.:ybatty: She still have WBC's in her Urine. It's a year now of this.:ybatty:

Update on Grace:
Grace recovered from her latest virus.
We started foods. She's had one night of overnight feeds and no vomiting. YA!

So there's the novel.
I thought the Merry-go-round was starting to slow down, but I guess not.:confused2:


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## dannysmom (Nov 21, 2013)

Thanks so much for this update. I'd love to know what Mayo will do in terms of testing and treatment for Addison's .... this is something I felt was never completely ruled out for Danny.  Will be thinking of you!


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## Farmwife (Nov 21, 2013)

dannysmom said:


> Thanks so much for this update. I'd love to know what Mayo will do in terms of testing and treatment for Addison's .... this is something I felt was never completely ruled out for Danny.  Will be thinking of you!


dannysmom what is Addison's??? 

Oh forgot to add. Grace's GP has added a endocrinologist to her list of future specialist. 

So that makes:
GP, allergist, eye, GI, rheumy, dietitian, urologist, orthopedic, derm and now an endo.


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## my little penguin (Nov 21, 2013)

Addison's is adrenal insufficieny


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## Farmwife (Nov 21, 2013)

Ummmm ok, her letter says she's a *risk* for this. How does one know if the have it.


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## araceli (Nov 21, 2013)

I know is very hard to go to a new Doctor expecting to find answers only to come out with more questions.  I hope your Merry go around slows down soon.


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## kimmidwife (Nov 21, 2013)

FW,
She may need some further testing to see whether or not she has it. It sounds like the people at Mayo are really on top of things. I really hope they will be able to give you more answers. I am so glad you were able to go there.


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## crohnsinct (Nov 21, 2013)

Farmwife said:


> dannysmom what is Addison's???
> 
> Oh forgot to add. Grace's GP has added a endocrinologist to her list of future specialist.


But she saw an endo at Mayo. Maybe GP just wants one closer to home?


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## Farmwife (Nov 22, 2013)

crohnsinct said:


> But she saw an endo at Mayo. Maybe GP just wants one closer to home?


:hug:Yes, she thought might as well get one now. It's not a bad idea to have one on Grace's team.


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## dannysmom (Nov 22, 2013)

A disease like Addison's could explain many/all symptoms - your body does not produce enough cortisone or aldosterone. The normal hormone levels do fluctuate and the normal range is pretty wide. (Addison's could also cause elevated sweat tests which Danny had.) Basic testing involves blood tests and urine/24 hour urine. There is also an ACTH stimulation test ... which Danny did not have as his basic testing was considered normal enough by his endocrinologist.  Addison's is treated by replacing the missing hormones.


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## momoftwinboys (Nov 23, 2013)

Farmwife. I do not write often (usually reading on my phone) but your family is in my thoughts often. It has been quite a journey from the doctors not thinking much was wrong to having a team and various dx floating around. Your family is lucky to have you taking care of them. 
I do not know much about Addison's but watched something on JFK yesterday and apparently he had it. Perhaps she will not be princess grace when she grows up but rather President Grace. 
Hope she starts feeling better soon.


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## Farmwife (Nov 28, 2013)

I'm so thankful that we had a good afternoon for Thanksgiving because 
the evening was bad. :frown:
Stomach cramps, cancer sores problems and the most upsetting news was
 watching her wince in pain while passing stool.
 Also I saw some red but am in denial until I see it again. :yfaint:
 I can't believe after two weeks of reintro to some foods she's into a flare again. 
I mean I felt she was heading there for a month or so but to actually see it is so upsetting.


My hubby and I agreed that LDN is not enough at the present time to keep her in remission and in the coming week will discuss new medications with her GI.


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## Sascot (Nov 29, 2013)

So sorry to hear that. Thinking of you! :hug:


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## Farmwife (Dec 1, 2013)

Headaches and belly aches and rash.

Grace has told me for 3 nights in a row that her forehead hurts. Also her belly pains are picking up.
It's only happening at night. At first I thought allergy related and it still could be but she is on 4 different meds to control it. Allergy wise she's doing fine....ish.

What can cause headaches as a new symptom? 

Is there anything that can be done to help her overcome them.

Also, she has what I think is a fungus infection the popped up on the bottom of her toes and is on the top of her feet and is spreading up her legs. The crazy thing is when she's resting it blends into her leg but when she's running or showering it turn red. It feels like dry skin and seems painful when it's red. I've treated with anti-fugal  cream but it's not going away. I've also treated for possible eczema but that doesn't help? Any Ideas????
I'll call ALL )or most of them tomorrow) docs tomorrow.


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## my little penguin (Dec 1, 2013)

Headaches = Neuro
Log them
Rate them 
Then see Neuro for a plan


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## my little penguin (Dec 1, 2013)

Leg rash call rhuemo 
Does it blanch when you press on it ?
Is it in streaks ?
Pain when you touch it?
Things Rheumo needs to know


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## Farmwife (Dec 1, 2013)

Thanks MLP.
Her headaches aren't horrible yet. She rubs her forehead and says it hurts but no meds needed YET.
I don't know if that would warrant a Neuro.
 I'm not just saying that because I don't want to add another specialist to her life. lol


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## Farmwife (Dec 1, 2013)

my little penguin said:


> Leg rash call rhuemo
> Does it blanch when you press on it ?
> Is it in streaks ?
> Pain when you touch it?
> Things Rheumo needs to know


Yes it blanches, no streaks, painful only when it's red.

It's on the surface. It feels like sand paper. Her toes (bottom ONLY, not in-between) have been a problem for months and the top of her feet rash has been there for a few weeks and just now is spreading up her legs. I know LDN can cause fungus to flourish in some.


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## my little penguin (Dec 1, 2013)

Log the headaches for a month then see a Neuro
Depending on how many ....
They may do more


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## Niks (Dec 1, 2013)

Farmwife, J has been getting headaches too, I was thinking that it is more likely to be down to not keeping enought fluids down.  I know Grace doesn't have that problem.

Really hope they don't get to bad for her xx


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## Farmwife (Dec 1, 2013)

Well Grace is mostly food now. She still has 3 EEN juices at night. 
Her weight has gone up 4 lbs since starting some foods. Her nausea is almost gone. YA!


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## DanceMom (Dec 1, 2013)

A gets headaches too, always has.  Tylenol doesn't help her headaches much.  We still haven't figured out the cause of her headaches. A is also a rashy child. She still has some sort of rash on her thighs. These things make me wonder about an autoimmune disorder.....


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## Farmwife (Dec 1, 2013)

DanceMom, the Mayo GI was wondering that about kids like Grace.


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## Mehita (Dec 1, 2013)

That rash sounds like what DS had back in Oct/Nov while flaring except his was on his forehead and nose. Particularly the sandpapery feel. It has since gone away with Remicade.


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## Momto2girls (Dec 1, 2013)

Gracie had headaches a lot, too. And also always her forehead. She's rashy too, but never her feet? Sorry Grace isn't doing so great. Hang in there!


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## dannysmom (Dec 2, 2013)

Danny had a headache in his forehead for years. We never did figure it out and nothing helped. (His serum ammonia levels were always elevated when he had a headache.) Has Grace started any new medications recently? Good luck with your dr calls!


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## kimmidwife (Dec 2, 2013)

Caitlyn gets headaches and rashes too. Maybe it is a Crohn's thing. We are going to bring it up at the appt at CHOP.


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## Farmwife (Dec 2, 2013)

*HELP*


OK the blessing of Grace getting older is she can describe things better.

Grace has always had joint pains and at times it seems like she has to move during the legs pains.

For the last few days she has been in a sitting potion and the has to stand. 
Of course this happens during dinner or at school, during situations that she NEEDS to be sitting.

Today I asked what is going on. 
She said that it hurts when she sits for more than a few seconds (minutes in adult time)
 and that she stands to help the pain. I said does the pain go away? She said no but it helps to stand.

Also my hubby noticed that Grace has taken a few falls over the last 3 days.

I'll be on the phone AGAIN with the rheumatologist tomorrow.

Any ideas? Does this happen with anyone here?


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## DanceMom (Dec 2, 2013)

I have restless legs syndrome and standing relieves the achiness temporarily. RLS can be caused by low iron. Has she had hers checked lately?


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## Farmwife (Dec 2, 2013)

She newly dx with anemia.

I've had RLS. My mom has to have meds to help her RLS. 
But Grace seems like she's in a lot more pain. Does RLS cause you to fall or trip?


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## DanceMom (Dec 2, 2013)

No, I don't fall or trip but my legs do twitch uncontrollably at times. Kids are pretty clumsy though. Even my dancer walks into walls and trips over her own feet.


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## Farmwife (Dec 2, 2013)

Thanks, I'll check that out.

I guess my biggest concern is that it has to do with her spine.
Like something's pinching a nerve.


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## my little penguin (Dec 2, 2013)

See juvenile arthritis 

http://www.m.webmd.com/a-to-z-guides/diagnosing-juvenile-arthritis


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## Maya142 (Dec 2, 2013)

Both my daughters have a form of juvenile arthritis and their biggest complaint is pain when sitting for long periods of time. They both have 504s and one of their accommodations is extra breaks so they can get up and walk around in long exams. Pain that gets better with movement is one of the characteristics of inflammatory arthritis.
Hope she feels better soon!


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## Naturelover (Dec 5, 2013)

I'd go back if I were you and get all the test done. You can contact Angel  Flights (I think that's the name, not sure, google it) for free flights for medical care. We did that when my son had to go out of state for a test that wasn't offered in our state at the time. That's where he got his dx of severe delayed gastric emptying.


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## Farmwife (Dec 5, 2013)

Feeling totally deflated at the moment. 

I had Grace's GP called and tell me that maybe we're over doing it here.
Lets take her off some of the meds and just try to treat the constipation.:ybatty:
Maybe the top eight free diet will be enough to fix things.
 Do you ALL know how I've dreamed of that.


It's easy enough for me to question myself. I don't need help doing so

Why does Grace's smile rate her pains? Why am I thinking the GP is right when I know she's dead wrong? Why do I have to find a new GP?


:confused2:Why don't doctors listen?


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## Niks (Dec 5, 2013)

I know how that feels hun.

Sending big Hugs :ghug::ghug::ghug:  xxxx


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## Sascot (Dec 5, 2013)

It is so depressing when doctors don't listen. They seem all keen, try a few tests and treatments, but the minute kids don't get better straight away, it's like they lose interest again. Sorry you are having to go through this.


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## my little penguin (Dec 5, 2013)

Can you explain why with a complex kiddo like grace your gp is dictating GI care?
And why you are not referring to your current Gi or even mayo Gi instructions?
Did they ( either Gi )tell you to just treat the constipation ?
Did they( either Gi) want her back on a top eight free diet and off EEN ?
How fast did you reintroduce food ?
I know for DS it took close to a month to be able to eat normally again since the gut was not used to food .

A gp is just that a gp and typically is not the specialist handling her GI issues .
So why is your gp advising on her GI issues ?


Hope she feels better


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## Farmwife (Dec 5, 2013)

The more I think about it, I think she was overwhelmed with Grace's care.
She a private doctor. Small staff and is nearing retirement. 
She's always on vacation or taking days off.
I was thinking about moving to a bigger practice with better hours and hospital privileges for Grace.
I do like her and am very thankful for all that she did but time to move on.

I'll have to call and get her a new GP soon. She was up tonight in horrendous gas pain. 
This is what it was like a year ago.


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## Rocking on (Dec 5, 2013)

Oh this poor kid breaks my heart.  Sounds exactly how my road started except for me is started at 30.

I think it's just hard to accept that doctors are shooting in the dark on most IBD issues.  I am lucky enough to live 4 hours from the mayo, but i often asked myself have they really done anything for me in 16 years of treating there.  If i crash i want to be at the mayo, but i really cant say they have done too much to help me with the day to day stuff.  

Btw, once you tell your local doctors you have been to the Mayo...yikes.  It's almost like they won't give an opinion anymore and will simply refer you to the Mayo recommendations for fear of malpracticing.


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## araceli (Dec 6, 2013)

Hello farmwife. My son gets pain when sitting for a while. coccyx, back and neck, sometimes ribcage sides. Legs get sleepy,  He feels better when he stands up and moves. We have appointment with a neurologist, I will suggest you take Grace to one, at least you will have peace of mind if nothing is wrong with nerves or muscle. Did she had a lumbar or pelvis mri? If she had a tethered spinal cord it will show. Hugs.


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## DustyKat (Dec 7, 2013)

Hey FW…:ghug: 

Re headaches: For Sarah headaches were one of her symptoms pre diagnosis. They can be a EIM of IBD and for Sarah they eventually abated when she gained remission. 

Thinking of you and your princess and sending love and squishy hugs your way. :heart: 

Dusty. xxx


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## Brian'sMom (Dec 8, 2013)

Farmwife said:


> Thanks, I'll check that out.
> 
> I guess my biggest concern is that it has to do with her spine.
> Like something's pinching a nerve.


We have a friend that is a chiropractor in our town. He recently told me that he treats some crohns patients with doing adjustments on them. He said there are nerves in lower back that contribute to bowel area. He said he gives them an adjustment to help 'release' the nerve... I'm not explaining it like he did. Whatever it was he said "Its like when you have a pinched nerve in the neck that is causing hand problems...releasing that helps. The colon area has nerves too". The whole nervous system thing. You might want to ask one.... I've never been to a chiropractor nor has anyone I know. But now I'm wondering about it. He did an adjustment on Brian. He wants to do 2 more this month and then maybe monthly or bi monthly. I'm still researching it. He said a chiropractor can NEVER cure crohns...just help. So he would never replace medicine. He's a nice guy just trying to help us where he can. I included a couple links... I haven't studied them thoroughly cause I'm just  looking into it. But these links talk about the nervous system and the spine and its relation to the nervous system and colitis. Probably better articles. I just haven't spent a lot of time on it yet.
http://kimbertonchiropractic.com/how-we-can-help/crohn-s--colitis---ibs.html
http://www.chiroone.net/how-chiropractic-helps/crohns-disease


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## crohnsinct (Dec 8, 2013)

O was seeing a chiropractor weekly for a few months and she felt great.  This is another couldn't hurt (well unless you get a lousy chiro) might help.  We stopped in August because insurance didn't cover it and she is begging to go back.  Looking for one on our plan now.


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## Farmwife (Dec 8, 2013)

I SWEAR by chiropractors. I have a problem with my spine and the docs were ready to put a metal rod up my back. The morning of the surgery I called and found a chiropractor in town and in 3 months later was walking without pain. Also it was the Chiro that figured out my milk allergy. She's all ready been to one. Thanks everyone.

LDN is a fail....for now.
Have a question.

*Methotrexate vs 6MP*
Which one is the best to get into remission and hopefully stay there?
As of this week it looks like these are the two to chooses from.
Of course this could change with upcoming appointments.

I know your not doctors and your advice should be taken a personal opinions only.:hug:


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## Jmrogers4 (Dec 8, 2013)

Pros and Cons for us
Methotrextate -
Pros- Controlled symptoms completely, only took once a week
Cons - bad lung reaction, cracking, bleeding rash on hands

Imuran (sister drug of 6mp)
Pros - We experienced no side effects
Cons - Controlled symptoms most of the time; not 100%, needed allipurinol to make it theraputic.


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## my little penguin (Dec 8, 2013)

Given her age I would try pills over weekly shots .
That said one may work and the other may not its too individual.
Mtx takes at least 6-8 weeks
6-mp up to four months.

Mtx better track record with joint pain stuff
6-mp better record for crohn's 

So it is as always up to your doctor as to which is best suited for her at this time .


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## Farmwife (Dec 8, 2013)

my little penguin said:


> Given her age I would try pills over weekly shots .
> That said one may work and the other may not its too individual.
> Mtx takes at least 6-8 weeks
> 6-mp up to four months.
> ...


Her rheumy suggest Mtx. 
Her GI suggest 6MP.

This coming week we'll discuss between the two which to use.
Her bladder and possible kidney issues are the only thing we're waiting on.


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## Sascot (Dec 9, 2013)

Only tried the 6mp, so no help on the Methotrexate.  I would say if they are equally happy for her to try either, then I would also go for the 6mp as you can get it as a liquid, so no injections.
Good luck with the decision!


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## my little penguin (Dec 9, 2013)

6-mp only comes in pill form in the US . Not liquid .


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## Catherine (Dec 9, 2013)

Boston hospital talking about liquid 6MP.

http://www.itpkids.org/docs/6m.html


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## DanceMom (Dec 9, 2013)

We've only tried 6-mp so far but will be trying mtx soon. 6-mp caused severe nausea for A so we woke her in the middle of the night to take it. The nausea subsided after a few weeks and we were able to give it at bedtime. She never reached therapeutic levels and had to quit due to liver toxicity. 

Mtx is more widely used. A's doctors prefer the injectable form because it is more easily absorbed and typically has less side effects. I think taking it once a week is convenient but I do worry about the effects it may have on her liver. 

Whatever choice you make will be a good one. Good luck!


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## crohnsinct (Dec 9, 2013)

It is to individual really to say I think.  If GI wants 6mp and joint pains are an EIM of IBD then I would go with what the GI thinks is the best shot at getting the IBD under control.


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## crohnsinct (Dec 9, 2013)

Are her rheumy and GI at the same hospital.  Maybe I am spoiled but all O's docs talk we each other and come up with a plan and present it as a united front.


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## Farmwife (Dec 9, 2013)

Yes both docs are at the same hospital. I'm assuming 6MP also. The rheumy has always felt the joint pains are an EIM also. Her GI never thought that. Could that have change, I guess I'll find out when the GI calls. This will be a fun conversation.

Making some calls NOW for a new GP for Grace.

*When getting a new GP, how did you fill that doctor in on your child's back ground?*I was thinking about getting letters from her specialists stating her dx's.
Pre-sending the info before or appointment.
*ANYTHING ELSE?*


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## Tesscorm (Dec 9, 2013)

When we switched Stephen's GPs, I made copies of EVERYTHING in my binder.  I had it sorted by:

1.  Pre and at diagnosis info - doctors notes, admission notes, etc.
2.  Labwork
3.  Imaging and scope results (as S only had rheumi related tests/apptmt at diagnosis, I included his x-ray results in this 'group' - but, as you probably have more info from other specialists, I would 'bundle' that information separately).
4. Other - ie copies of summaries from GI to previous GP (and whatever else I have..)

I gave an explanation of what had gone on with Stephen and a quick summary of the 'library' I was giving him :lol: and explained that I was giving him 'everything' and I'd leave it up to him to throw out anything he didn't need.

To be honest, I'm sure I gave him way more than he needed but...  as I don't know what might have been of importance/interest to him, I just gave it all.


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## Farmwife (Dec 9, 2013)

So basically the folder I made for Mayo. Good I still have it. YA!
Thanks Tess


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## polly13 (Dec 9, 2013)

Lucy and grace have different presentations so our experience may not reflective of what yours will be like.  Lucy was on 6 mp for a year - firstly on its own, then with flagyll and cipro and then with infliximab.   While her symptoms improved sporadically while on flagyll and infliximab the GI (and I agree) thinks 6 mp had no positive benefit in relation to the crohns.  While she was taking it she had no side effects and her blood work was always fine. 
She took 6 mp daily in liquid form. 
After Lucy failed infliximab the GI switched her to humira and methotrexate - he is using methotrexate as a conduit to the humira as opposed to a treatment for the crohns - if that makes sense.   She takes it in tablet form once a week and is tolerating it very well.  She did have some mouth ulcers about two months ago but since then she has been fine.

I would probably go with what the GI is suggesting as he is treating her primary condition.

These are really difficult decision, don't underestimate how stressfull they are so mind yourself too.  Hope grace is doing better

Polly


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## Farmwife (Dec 9, 2013)

Maya142 said:


> Both my daughters have a form of juvenile arthritis and their biggest complaint is pain when sitting for long periods of time. They both have 504s and one of their accommodations is extra breaks so they can get up and walk around in long exams. Pain that gets better with movement is one of the characteristics of inflammatory arthritis.
> Hope she feels better soon!


Thanks to Maya and MLP,

I received a letter from Grace's rheumy that's for her teacher.
In this letter is states recommendations for the school to allow (sweet, I didn't even ask them to do it).
It also says the reason why, possible juvenile arthritis. 
Wow, were they going to tell ME! :ybatty:
I mean we "the forum" :ghugMaya and MLP) already put it together but it would have been nice to hear it from them.

Update:
Grace put herself to sleep. Fatigue setting in again.


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## Maya142 (Dec 9, 2013)

Really sorry to hear that, but glad she's getting the accommodations she needs. For what it's worth, both my daughters have been on Methotrexate. My younger daughter couldn't tolerate the side effects (severe nausea and dizziness) but most kids tolerate it well. It helped her a LOT though so we were really sad to give it up. We might even try it a third time if we have to! 
My older daughter has been on it for 2 years, absolutely no problems - it really helps her joint pain.
Good luck!


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## Farmwife (Dec 11, 2013)

This is for my farm boy.
What can cause 8 hrs of cramping and diarrhea and then 5 days of no BM's?
Since having a bm today the cramping has started again. 
No viruses afflicting us right now.


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## Rocking on (Dec 11, 2013)

Sounds like a stricture.  All that inflammation and scarring builds up and closes the anus.  You still have all the pain but it's even worse because you cant release.  I go in for dilation procedures a couple times a year.  Basically they sedate me and, well, go at it with the medical equivalent of a dildo.  That stretches out the stricture and allows me to release again.


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## Farmwife (Dec 11, 2013)

Thanks Rocking on BUT this is my boy. He's not dx with IBD..............yet.
Ironically he's the one that you would consider more text book of IBD but yet his sister has it. Go figure, KIDS.

His doc is keeping a close eye on him. His sed rate was elevated last draw. We shall see.


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## Naturelover (Dec 29, 2013)

Goodness gracious! When it rains, it pours!
Hugs to all!:ghug:


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## Niks (Dec 29, 2013)

How is your boy now??

Did you all manage to have a good Christmas?? Xx


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## Farmwife (Dec 29, 2013)

It's sad to say but with him I'm taking a wait and see approach.:yrolleyes:
His stomach pains are increasing (but not horrible) even though he's been on a PPI for 6 months.
Can't gain weight and not growing as fast as before. He has a doc apt. soon and will ask for labs again. Other than the stomach, weight and growth he's doing GOOD.:yfaint:

Thanks for asking.

For Christmas my son got a HUGE army set. Complete with tanks, soldiers, planes, bad guys and a 1000 tiny pieces for ammo and such.:yfaint:

So needless to say we've had a lot of battles and screams of despair as the "bad guys" have kidnapped Grace's dolls.:devil:
But don't worry GI Joes comes to the rescue.:lol2:


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