5 Year Old Daughter w Crohns--Help--

[DadofCrohnsDaughter]

On advice of DEXKY, I am reposting this in this section as well, sorry for the duplicate thread... Thanks

5 Year old daughter w Crohns --HELP--

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First, thank goodness I found something like this. Second I will try to be concise and avoid rambling, but I guess its best to start at some background then the beginning.

Have twin daughters, one of them is 5 1/2 years old. Never had any health problems except stools. For as long as we can remember she always had "Soft, pasty," stools--never any form or normalality (Sp??)

My wife's family has a history of Celiac, so we started thinking that. We visited the Universtity Hospitals in Cleveland and a Ped GI. Did a bunch of tests, lab work, and everything under the sun, EXCEPT the scopes. And everything essentially came back NOT indicating that she was a Celiac, upon asking him why is her stool like this, he told us that some kids just have stools like this and that she will probably out grow it. So we carried on. (BTW one of my BIGGEST regrets).

(sorry will get to Crohns stuff shortly)

2 years goes by, this spring around April, she starts vomitting occasionly, think something bad to eat, flu, virus, anything. But it continues, but with no regularity. Go back to same dip doctor and STILL tells us that he doesn't think its Celiac and will not do the scope---To say the least we went somewhere else.

Visited Cleveland Clinic, do lab work, stool samples, find out she is essentially mal-absorbing almost everything at this point and no real cause for vomitting. We get scope done pretty quickly. (sorry don't know all medical terms). But daughter has severe damage in ther bowels, mostly intestinal. But there is damage in two different areas, one where they typically see Celiac damage and the other where Crohns presents.

So we start Gluten Free diet immediately and strictly. Very tough for a five year old BTW. We do not see any improvements for almost 3 weeks. Dr, prescribes predisone at 6ml. See improvement almost in 3-4 days and within 10-14 days we saw as close to normal BM as we have ever seen. But side effects are tough, obsessiveness and bloating in face comes full force.

With improvement, we inform Dr, and they tell us to start weaning off of predisone, 1 ML a week, once we go to 4ML and eventually 3ML we essentially go back to square one. Full blown diahrea, soft stools, and 2 days of vomitting. Call Dr, and we go back to 5ML and come back in to office.

At office appt, tell us this is classic Crohns and very good chance she may NOT be a Celiac. Big questions in my mind.

They order additonal lab work, for levels to be able to prescibe Imuran. Obviously read good and bad about it everywhere I look. But curious if anyone has any history in small children???

We have heard about the diet, breaking the vicious cycle, but we had a difficult time with Gluten Free with a 5 year old, not sure how I could even get that one thru her.

So I feel I am stuck in between a rock and a hard place. Versus diet and medication, but not even sure if this is the right diagnosis. And don't feel like playing trial and error with my 5 year old.

Can anyone give me insight on the Crohns diagnosis? I know it falls under the IBD umbrella, is it all the same? or is there something else this may be?

Have heard that it is very rare for a 5 year old to be diagnosed, almost no data exists (according to my Dr) at this young of age.

I am sure I have millions of other questions, but I guess this is a good start. Any help would be greatly appreciated. There is nothing worse then a sick child and would move heaven and earth to get her feeling better.

I will look forward to discussion and try to promise not to be so wordy next time.

Thanks
Scott Kennedy
Dad of Crohns Daughter--I think---

 

[Dexky]

Good show Scott!! Hey we're in the same time zone!! I gotta run but I hope we'll talk again soon. Good luck!!

 

[Crohn's 35]

:welcome: to the forum, I am glad you found our community and hope we can ease you mind somewhat. It is becoming more and more common for babies as young as 6 months here. Crohns and other forms of IBD, Ulcerative Colits, Crohn's colitis, Diverticulosis and Celiac has been known be be a misdiagnosis along with other ailments.

We have a little girl named Madasin on the forum whom her parents are here seeking help for their 2 year old and others.

First of all my heart goes out to you, and having twins there are or were a few who are twins and both have a form of it, I am sure they can come here and comment.

Diet really does help but it is not the do all end all. If your daughters bowels are narrowed (which will cause vomiting) then she is going to have pain. Having the colonscopy she had probably the best way to find any problems. I know she is pretty young to have surgery, but alot of drugs, including the biologics like Remicade or Humira can help but everyone is different in the severity, the location and reactions to drugs. I agree Imuran is a not nice drug, I am allergic but I am sure your doctor knows what is for her.

It can take years to finally diagnose Crohns as it very hard to detect. Took in 1992-1993 a full year of hell. There was no computers back then but things have gotten better for meds. My whole family has a form of IBD, I dont bleed but my sister does, even in families the disease can be different.

I am so sorry you are struggling with your daughter but one thing I can recommend that she can have is applesauce, and for nutrition Ensure, or Pediasure, she really needs the nutrition at this early stage and will give her bowels a rest and keep her weight up which is hard but crucial.

Sorry this is longer than your post but I have been here over 2.5 years and been a Crohnie since 1992 and symptoms for since 1975. Take care, hugs to all of you!!!! Any questions....everyone is here to help you best they can, parents, spouse of Crohnies and patients alike. Hang in there ok!

 

[gypsigirl28]

Hi Scott Welcome and I am glad that you found the forum. I can relate to what you are going through. Here at the forum you will find lots of support and advice for you and the family.
Take care

 

[Guest]

hi Scott & welcome....

my humblest apologies - i was trying to merge a post into your other thread in the Parents forum, which had been made in reply to yours in the Come In & Say Hi thread.. and accidentally deleted your Parents forum thread i know what i did wrong... the post i merged appeared at the top of your thread so i deleted that post, intending to move it down the thread so it made more sense, but when the first post gets deleted so does the whole thread. duh

really sorry.... would you mind recreating the thread again in the Parents forum, and Dekxy, could you post your reply again?

sorry guys x

 

[DadofCrohnsDaughter]

Wow, thanks for the quick replies.

Mark, thanks for words and will definitely look forward to the discussions and conversations we will have.

Pen, I have many more questions, but being so late, I think I am pooped out (sorry for the pun

Not sure if her bowels are narrowed, the vommitting was attributed to her Villi being completely gone from her pathology report after colonscopy.

We are just very concerned we have the right diagnosis and don't want to take an easy way out with drugs and ignore other therapy paths. She is getting pretty good nutrition and since being on pred she has put weight back on. The problem and double edge sword we are on right now. Of course being 5 she is very picky and hardly eats the GF food that we give her and we have thought up to this point as long as she is eating something we were pretty happy--considering we were very close to being admitted to hospital for feeding tube before we went on Pred, because of the diahrea and vomitting.

Still very confused and think this will be a great resource.

Sorry, guess I got a little wordy again

 

[Crohn's 35]

Never think you are writing too much, we all are here to vent, laugh and get information. When you are new , you are trying to absorb it all and getting it out helps you too. Very hard on family members and of course your daughter. No question is to much information here, because I have learned more here than my docs or the internet because we all are in the boat, most of us. Glad you are here, don't worry about how long it is, information for you daughter is more important. Good luck and always keep us posted when you can.

 

[DadofCrohnsDaughter]

Dingbat--no worries, I put it back up there. Thanks for the heads up

and
Thanks Pen

 

[DustyKat]

Hi Scott and :welcome:

So sorry you had to find yourself here but I'm glad you did. Jett has given you great advice and it is right that it seems to becoming more frequent that younger children are being diagnosed with IBD.

It is difficult for you with the Coeliac link in the family. Certainly pale stools are a symptom of Coeliac but they tend to be very offensive, are your daughter's like this?
Vomiting can affect some people with Coeliac but I don't think it is a common symptom. This symptom is what would be of concern to me if it can't be put down to Coeliac because as Jett has said it may be a sign of narrowing. This was the case with my daughter and she also had no regularity with her's except as time went on it became more frequent.

The diet and medication aspect of things is also difficult. If it is Crohns then diet alone will not treat the problem. If it is Coeliac then eventually it will but it may take time. Some people respond very quickly to a gluten free diet whereas others take weeks or months. Prednisone will also help both conditions but perhaps I would expect a better response when reducing with the diet and Prednisone combination if it was Coeliac.

Another common symptom of Coeliac is bloat, does your daughter suffer with this?

I'm not sure what they mean't when they said that with the scope results that they found one area damaged is consistent with where you find Crohns and the other with Coeliac. Crohns can affect anywhere from the mouth to anus with the most common site being the small bowel (ileal section) and Coeliac also affects the small bowel. Bear in mind that Crohns is also characterised by skip areas so it normal to have affected areas separated by healthy bowel.

I know I probably harp on too much about the importance of keeping a diary but when you are the advocate for a child I think it is even more important. These are suggestions as to what you might include:

Pain - time of onset, where is it located, duration, what is it like, severity on a scale from 1 - 10 (1 being the lowest), does the pain stop her from doing things (in other words is she curled up in pain and can't walk etc)

Relief - did you try anything that relieved the pain? Was there anything you tried that didn't relieve the pain?

Stools - How often does she go, what do they look and smell like.

Diet - are there any foods you have noticed that disagree with her, what is her appetite like from day to day, how does she look - is she pale etc, what is her weight - is she losing, maintaining or gaining.

Other symptoms - was there anything else accompanying her other symptoms - headache, fever, joint aches, vomiting, rashes and so on.

Questions - write down any questions as they occur to you between doctor or hospital visits.

Take this information with you every time you see a health professional. Believe me it is just too easy to forget the details when you are living this day in and day out. Try not to become too disheartened with the negative or conflicting test results, just know you are not alone with this as many suffer with this same problem, we certainly did.

I hope I haven't bombarded you too much and I apologise for all the questions. There's lots of kindred spirits hanging out here so please stick around we would love to have you here.

All the best to you and your family,
Dusty

 

[gypsigirl28]

Hi Scott, Your worries are important and dont be sorry for saying everything that is on your mind. the whole situation is stressfull and it is normal to feel the way that you do. Venting and rambling is normal, you have alot of questions and concerns about everything dont be worried about how much you type on here.
I have learned so much from this forum and everyone on here is just absolutely wonderful.
take care
lots of hugs to your little one

 

[Dexky]

hi Scott & welcome....

my humblest apologies - i was trying to merge a post into your other thread in the Parents forum, which had been made in reply to yours in the Come In & Say Hi thread.. and accidentally deleted your Parents forum thread i know what i did wrong... the post i merged appeared at the top of your thread so i deleted that post, intending to move it down the thread so it made more sense, but when the first post gets deleted so does the whole thread. duh

really sorry.... would you mind recreating the thread again in the Parents forum, and Dekxy, could you post your reply again?

sorry guys x

It's gone from my posts too. When you deleted it, you really deleted it Sue!! It doesn't matter as long as Scott stays around!!

BTW, Scott, I see the pros have given you some great advice here. Ramble on my friend!!

 

[Astra]

Hi Scott
and welcome

can't add any more to what's been said, only to say lots of support and friends here for you, you're no longer alone with this.
any questions, fire away, always someone here to help
lotsa luv
Joan xxx

 

[DadofCrohnsDaughter]

Okay some more questions for Sunday---

is there a definitive test that points to IBD or Crohns? if so what is it called?

My daughter has not had any blood in stools at any time and I know that is not a tell all requirement, I know everyone's case is different, it just seems like my daughter is not as bad as some of the stories I am hearing, and BTW praying that it doesn't get that bad.

Does anyone have any experience with Celiacs as well? with Crohns? Our Doctor said it is unheard of to have both diseases, even though they are under the same IBD umbrella.

Just trying to get an idea on a diagnosis, as her symptoms are mostly diahrrea and occasional stomach pain.

Thanks, still very confused

 

[Crohns08]

Hi, just got around to seeing this thread!

So sorry to hear your daughter possibly has the disease at such a young age. Your concerns are very valid, most of the drugs out there to treat Crohn's disease and IBD have some very scary side effects and potential outcomes. New studies even suggest that we're going in the wrong direction with the medicines that we're using right now.

If I were you I would definitely look into some other therapies such as LDN (Low Dose Naltrexone) and definitely look into different diets. I know it looks really hard to put your child on such a restrictive diet, but doing this and getting her into remission without the bad effects of the drugs will be so much worth it when she can act like a normal child and fall off the diet here and there. I'm young myself and I have a hard time following the diet that I am on so I know the struggle.

Usually with celiac all you have to do is remove gluten from the diet. If that doesn't work, and she doesn't have common symptoms of the disease then I'd scratch that one off the list. I'm getting a food allergy test done, it might be something to look into to see which foods you should absolutely stay away from.

Best of luck to you and your daughter.

 

[balmerhon]

My son is 4 and was Dx'd with IBD this past spring. He was also tested for celiac (negative). While they are both autoimmune diseases, I'm not sure they technically are under the same umbrella. Regardless, yes, it is not unusual for younger and younger kids to be Dx'd with these illnesses. And if you have one autoimmune disease, you can get others.

My son has been having tests of various sorts since he was 1. He's been on GF, he's been on a diet free of 9 major allergens (i.e. soy, eggs, dairy, etc), he's been tested for cystic fibrosis. He is not a typical IBD sufferer either (BTW, he has non-specific IBD - they don't know if it's Crohns or Ulcerative Colitis or what yet). He has diarrhea but no pain. He's rather thin but full of energy. It's very frustrating trying to figure out what to do for him, if anything.

All I can do is suggest that you prepare yourself for a long journey. Especially with kids, you really need to go slowly and try different things one at a time. My son is eating what he wants, but is on one medication. If we determine that has not helped by October, we'll try another one. We're looking at possible diet changes but have not implemented any yet as we want to give the medicine a chance first.

Take a deep breath and try not to get overwhelmed! Good luck!

 

[eileencollopy]

i can finally read a message - new here so not sure how it works but NOT new to Breaking the vicious cycle diet - been on 2 years 8 months -my 5 year old has been on 1 year -and don't worry about dx - start the diet asap - she'll come around -it's SO much better than GF - my friends 6 y.o. just lost her intestines- please start it -i wished i had known sooner and helped the poor thing!! it has saved SO many from all intestinal issues - spread the word - forget the docs, forget its tough to get used to you and takes cooking time - she'll have her health - everyone should be told about the SCD diet by GIs but then they wouldn't make money off the drugs!!! you can combine drugs and diet in beginning but you won't need them eventually
good luck - i hope i can see more responses - it won't let me access people writing back to me??
eileen

 

[eileencollopy]

please do diet not meds OR w/meds

I know it seems tough but the meds are just covering symptoms - if may not be easy but you need to get him on the SCD diet ASAP to heal him
i'm on 2 years 8 months - my 5 y.o. son 1 year
eileen

 

[momtocrohnsgirl]

I know it seems tough but the meds are just covering symptoms - if may not be easy but you need to get him on the SCD diet ASAP to heal him
i'm on 2 years 8 months - my 5 y.o. son 1 year
eileen

eileen...what do you do for bread or sandwiches on the scd? do you have any concerns abt all the almond meal flour they use instead of wheat flour? or, is there some limit young kids can hit w/ regards to almond flour? or consumption of almond products? do you know if there is even any problems w/ that? what abt the yogurt they have you consume on the scd...does it not bother you or your child? dairy rips my daughter up terribly bad. thanks for any info you can pass along.

 

[Silvermoon]

Okay some more questions for Sunday---

is there a definitive test that points to IBD or Crohns? if so what is it called

Unfortunately, one of the reasons it is so hard to diagnose these diseases is that there are no specific tests... biopsies and pathology tests are done, but they mostly rule things out rather than diagnose.... Also, because it is an autoimmune disease, there are many diseases that can have many of the same signs and symptoms... so that kinda sucks.

Thanks, still very confused

I have had this disease for 25 years...and I am STILL confused about a lot of things. I have been on medications... I have done meds and diet.... I have done diet alone (FYI Eileen... both my brother and I have CD, and we were both on very strict diets for most of our childhood... he had less problems than I did... was actually in remission for almost 13 years and was almost the epitomy of health - triathlete, etc... and this winter...with NO change to lifestyle, the disease hit him again.... sorry not to burst your bubble...I am glad diet is helping your child.... but there are many other factors involved....).... but sometimes... **** just happens...

Anywhos... (sorry about the sidetrack :redface: ) ... the point I started to make is... alot of it is going to be trial and error...unfortunately. Dusty's suggestion of the diary is probably the best thing you can do. And even over time, your daughter will find that foods that bother her now may not later...or vice versa....

There is no absolute rights or wrongs with these diseases. I wish I could help you more, but the best advise I can give you now is... ask questions.... read everything you can (take most of it with a grain of salt unless it is from repsected and reliable sources)... and know that we are here if you need to talk, vent, scream or cry....

Hugs to you and your family.....

 

[kello82]

hi dad of crohns daughter =]

i kinda had a similar experience as your little girl.....i wasnt officially dx till i was 9, but my parents noticed changes in me starting when i was 4., thats when i started saying my stomach hurt all the time.

in between 4-9 we tried many thiungs as well. similar to your story, i was thought to have celiac went on the gluten free thing....then considered the SCD from the breaking the vicious cycle, but like you said, it is just too much for such a young age. sidenote, i actually tried the SCD about 2 years ago, and it isnt TOO bad to maintain. you are really hungry in the beginning...but you figure out how to make ahead foods that you can eat so that the GOOD foods are just as easy as it would be to order a pizza. it just takes discipline to resist the oreos that scream your name from the closet....
and im sorry i have to say, i totally appreciate eileens experience with the SCD, but i would recommend not going into it (if you decide that path) with the expectation that it will heal the crohn's. i know it has done amazing things for many people, and support it as a treatment option. but just like any treatment.....it doesnt work for everyone. and it has risks associated with it as well, i mean fairly benign compared to medecines and such, but it is very hard to get adequate calories from mostly veggies fruits and meats/eggs. least i found it very difficult, and if your daughter is already underweight and not absorbing her food well due to the inflammation, then the removal of such fats/carbs and stuff from her diet may affect her weight as well. or it may not! just be aware of her weight and calorie intake if you decide to do this, thats all im tryin to say.

allright tangent there sorry, but just know that your little one is NOT alone in this at such a young age. and you as parents arent alone in trying to fix a sick 5 year old =/
ive often felt that crohns has been worse and more painful for my parents than for me. but such is the flipside of loving someone.

i see you live in ohio and are at the clev. clinic, thats really good. i had some very VERY good doctors at childrens hosp of philly (chop).....2 GI's and a surgeon and they were just wonderful people and seriously i cannot speak well enough of them. anyways, thats pretty far, but shoudl you ever find yourselves needing a second opinion or something, ill be glad to give you the names.

this got really long but if you have any other questions....things that docs cant answer like school, friends, just growing up with crohns, ill be glad to try and help. just ask away or send me a pm.

 

[DustyKat]

forget the docs, forget its tough to get used to you and takes cooking time - she'll have her health - everyone should be told about the SCD diet by GIs but then they wouldn't make money off the drugs!!! you can combine drugs and diet in beginning but you won't need them eventually

I feel I have to speak out here........I have absolutely no objection to diet in the treatment of IBD and it certainly has a role to play but I do feel it is irresponsible to suggest that something that has worked for you, and good on you if it is working, is guaranteed to work for someone else. If this was not your intention then I apologise but that is how it comes across to me.

Dusty.

 

[Dexky]

hi dad of crohns daughter =]

and im sorry i have to say, i totally appreciate eileens experience with the SCD, but i would recommend not going into it (if you decide that path) with the expectation that it will heal the crohn's. i know it has done amazing things for many people, and support it as a treatment option. but just like any treatment.....it doesnt work for everyone. and it has risks associated with it as well, i mean fairly benign compared to medecines and such, but it is very hard to get adequate calories from mostly veggies fruits and meats/eggs. least i found it very difficult, and if your daughter is already underweight and not absorbing her food well due to the inflammation, then the removal of such fats/carbs and stuff from her diet may affect her weight as well.

Very well put Kelly!! This is the problem we felt we had to address with EJ concerning the SCD. He's ten...he needs all those extra calories to grow. If he was a full-grown man, I could see maybe recommending he try it.

 

[eileencollopy]

it's recommended to limit nut flours to 2-3 servings a day but that just cause you want to make sure your eating enough meat veges etc not just the yummy muffins lol - but you can hide many things in muffins - nut butters are a stage 2 then nut flours - don't start nuts too early - many who rush ,get set backs - check out the stages on pecanbread.com and keep a journal of reactions bm, behavioral etc
ps -this is the only thread i can access does anyone know why???
eileen

 

[eileencollopy]

i must disagree - most who fail scd, don't follow it 100% -maybe they don't even realize (i didn't get it all right for a few months) also most lose a llil weight when starting but i ate 3000 calories a day of eggs meat fruit veges pecanbutter avoc and I re-gained the 20 lbs celiac/crohns took from me - now I eat maybe 1500-2000 cal a day???? and I am maintaining perfectly even gaining at times from nut butters - yum! - you can't gain till you heal

 

[eileencollopy]

because it's not just me - 100's of thousands are on and have been saved - that's why i share and can almost guarantee - if you all did it 100% and kept on you'd be amazed changed people - not meaning that badly - just been down the other road and now i get it -please at least read pecanbread.com or breaking the vicious cycle - you'll see how it works and why it's helped people for almost 40 years now!!
eileen

 

[eileencollopy]

we use the homemade goat yogurt - i was on cows but it was causing bloating( a sign your body can't deal with something )so i switched - it's pricier but worth it - you don't have to do the yog on scd- BUT it is VERY healing - I also put calcium citrate powder in my and my son's drinks plus spinach etc for calcium as we lack dairy on SCD - used to be able to have mild cheddar - son still can - there's also goat cheddar
please feel free to write a separate email to me as I can't always access stuff here and would love to guide you to healing
thanks

 

[eileencollopy]

i have to disagree the sugar in the ensure pediasure (and gluten most times) wil wreak havok - homemade chicken soup broth is an anti-inflammatory and allows a LOT of healing to take place
eileen

 

[eileencollopy]

why can i only get in here? people keep writing from "come in and say hi "and i can't read them -no access it says - anyone know why???
thanks
eileen

 

[Rebecca85]

I think the 'come in and say hi' is a forum created just for members when they first sign up. Once the activation process is complete you can access the main forum but not the newbie one.

 

[eileencollopy]

and how to i attempt to get to the main come and say hi forum - i hate for all these people to think i'm ignoring them
thanks

 

[Rebecca85]

There isn't one! You should meet people in here once they are activated too.

 

[eileencollopy]

oh! thanks

 

[DadofCrohnsDaughter]

Thanks everyone for all the words and advice.

For now we are on level ground. We are trying to get a 2nd and/or 3rd opinion.

She seems to be doing okay for now, but of course is on PRED, which we want to get her off ASAP.

I am trying to get info on the SCD diet but for now we are sticking to GF and have elminated all dairy.

There have been so many variables we are just not sure which direction we are going right now.

I will try to keep up with more of my messages. Thanks!!!

 

[Crohns08]

Thanks everyone for all the words and advice.

For now we are on level ground. We are trying to get a 2nd and/or 3rd opinion.

She seems to be doing okay for now, but of course is on PRED, which we want to get her off ASAP.

I am trying to get info on the SCD diet but for now we are sticking to GF and have elminated all dairy.

There have been so many variables we are just not sure which direction we are going right now.

I will try to keep up with more of my messages. Thanks!!!

If you're looking for info on the SCD, I reccomend buying the book Breaking the Vicious Cycle. If you can't get the book then go to the website where there is an extensive list on what is and is not legal on the diet.

http://www.breakingtheviciouscycle.info/legal/legal_illegal_a-c.htm

Good luck to you and your daughter

 

[cowgirlnz]

Hello. I only just saw your post. Our five year old son has Crohn's - he's had symptoms since birth, and was diagnosed at 2 - it's been an ongoing battle ever since. I can see you've had a lot of replies and various different advice. As a mother who's been through what you are going through, I'd really like to say that at the end of the day you just have to do as much research as you can, and make the decisions that are best for you and your child at this time. Your decisions can and will change as you learn more about your daughter's specific problems, and as she grows in understanding.

From our own journey I can share with you the following... Our son was put on predisone shortly after diagnosis. It does work - it was the first time we had EVER seen a solid stool. But the side effects are awful, and we've fought very hard ever since to find other ways to manage the condition.

We tried the SCD diet. It did work at first, but it couldn't keep him in remission. After a few bouts in hospital and too much weight loss we had to move on. However I learned a lot about nutrition through the diet, and we still default to it at times of bad flare ups. But when dealing with a very stubborn five year old it's very hard to keep it up for long. We are now on the FODMAPs diet - which is being trialled where we are in New Zealand. This is a far less restrictive diet, but follows many of the same principals of low residue and low fermentation. It helps - but for us it still hasn't been enough.

We have used the elemental diet in the past, to control flares. Six weeks of liquid feeding only. When our son is really ill he's happy to do this, as he doesn't feel like eating anyway. But as soon as he starts to feel well it becomes a real battle. In the last year it hasn't been possible to keep him on it for more than two weeks.

We reluctantly tried Imuran for six months. There was some improvement but again we never achieved remission and finally decided that the results didn't warrant the risks.

We are currently trying Low Dose Naltrexone - which has very few side affects. There is a separate discussion about it on this site and lots of info online. Our doctor was reluctant, but we figure we're dealing with the rest of our son's life, and we owe it to him to give everything a go. It's been a bumpy start - but ten weeks in and he has had solid stools for six days in a row, is putting on weight, and feeling great. (We're still doing the FODMAP diet with this too, plus various supplements etc).
The verdict is still out on that one. We'll see how he goes in another few months. If it doesn't work we'll move on and try something else. We refuse to give up - the right solution for our child must be out there somewhere!

It's confusing and there is so much information to wade through - and sometimes it's very hard as a parent to be making these decisions for our children. But at the end of the day you just have to keep moving forward. Good luck to you, and if you'd like any more information about anything please just ask.

Gillian.

 

[DadofCrohnsDaughter]

Gillian,

Thank you very much, we are still in limbo as we are still very confused and even our doctors are confused as well. At first they thought Celiac and then Crohns.

I do trust them, the source of confusion is her pathology report. There was damage all over the place and both diseases were presenting in report.

We are on Pred now, and we are at about 3 weeks and just started seeing normal poops. She is eating and putting on weight and has been for some time.

At this point our next step is getting a 2nd and 3rd opinion from another IBD and Celiac specialist in Chicago, but can't see them until October 27.

Our current doctor was planning on putting her on Imuran but we are reluctant right now with the sketchy info.

And yes I have gotten a lot of good invoice and thank you for yours.

Also my daughters name is Jillian

take care and hope your son continues to improve.

Scott Kennedy

 

[Dexky]

Thanks for the update Scott!! Good to hear she is doing well on the pred. I know you hate giving it to her but it sounds like you all are on the right track. Good luck!!

 

[DadofCrohnsDaughter]

Thanks mark