Community Forum

Hi

I am writing on behalf of my son Noah. He is two years old and has been diagnosed with indeterminent IBD, leaning towards Crohns disease. We first noticed something was wrong at 14 months when we saw blood in his stool. Its been a long road but he had a scope done this past february and the biopsies showed that he has an IBD, or at least thats what a few sets of pathologist could gather. He has been put on various mild meds and nothing has worked. We tried a azulphadine and pentasa and he had a bad reaction to both, causing a flare and having him put on oral prednisone. 5 ASA catagory meds are now written off the list of options.  hes now just on flagyl (he was started on it due to a c-diff infection that he somehow acquired and spun out of control, leading to 5 days in the hospital and multiple ER visits), which the GI wanted to try since it can sometimes be used to treat Crohns but the bleeding has started again and he seems to be under the weather, not sleeping well, mild vomitting etc.  Due to his age and his need to grow, the GI is pushing to start him on 6MP. Naturally we are very nervous about putting him on this medication with him being so young. I was wondering if anyone has a child as young as Noah or close to it who could share their experience with me. I am hoping it helps give us some perspective and guidance. We are at our wits end with stress and worry. Please help....

Thanks,
Negeen

 Reply posted for alanschachter.

Alan, she would take Amoxicilian for a few months then the dermatolgist would switch her to Minocycline for a few months.  It just upsets me when I think about this.  If only I realized this could cause IBD. 

 Reply posted for NPapehn.

I am also in Los Angeles.  I've gotten in trouble by this website when I give a doctor's name and hospital so I'll say this...this huge medical center next to the Beverly Center off La Cienega Blvd./ George Burns Way is where my daughter goes.  There is a IBD Center there that is great.  She first saw the pediatric specialist.  She's great too but when my daughter turned 18 she didn't want to sit on the little airplane examination tables so she sees someone else from that IBD Center.  Look them up online and see what you think.  My neighbor's daughter has Crohn's and she sees the doctor at the university you were talking about off Sunset and Westwood Blvd.  You seem like you are in good hands though.  It's interesting you said your son has ecema.  My daughter has that too.  She had a very severe case as a baby.  The dermatologist at the time never saw such a case on a child before my daughter and Rx cortisone cream.  Unfortunetely, we still saw that dermatologist who treated my daughter for acne who put her on antibiotics for almost 3 years.  As soon as she stopped the antibiotics, she developed UC.  I now tell all my friends who are thinking of putting their kids on meds for acne..it's not worth it.  My son was on the same meds but didn't develop UC.  Good luck with your insurance company too.  I hope you are able to get another opinion.

 Reply posted for NPapehn.

I can relate to what you are going through.   My daughter was very sick from infancy.   Unfortunately, she had been hospitalized and mis-diagnosed a couple of times and then finally diagnosed at the age of 4.  

I agree with you that SCD would be extremely difficult with a child so young.  We had to make many lifestyle changes, which involved removing all of the whole grains we were consuming.  As a family we ate whole/organic foods/lots of whole grains (thinking it is a healthy lifestyle).   Due to the limited space allowed here, I'll give you my email:  lizziesmom@ymail.com.  If anything I can be a sounding board and can share my experiences (we've been at it just over 7 yrs).   Keep in mind it is ok to agree to disagree with a doctor.   As parents, we have to be advocates for our children.     

Hang in there,

Lizzies Mom

P.S.    With regard to the LDN Pedi study, I've been in touch w/Dr. Smith's office and though the study has been complete, they are still meeting with publisher, will probably be a few months down the road 'til it's release.

 Reply posted for alanschachter.

We haven't tried any extreme diet changes. Being that he is only 2 years old, its difficult enough to get him to eat things he likes, let alone stuff he isn't use to. His appetite has dwindled and he does a lot of supplements, like pediasure. I started to look up some of the stuff on your response and haven't made it through all of it yet. I did see info on the SCD diet but I really don't think that its realistic for my son at the moment. If he was a little older and could understand, that would be a different story. As it is, its hard enough to try and explain why he can't have everything his 4 year old brother does. 

 Reply posted for EZ.

Thanks for the reply. He is currently being seen by a pediatric GI specialist we were referred to by our pediatrician. Once his diagnosis was made, the Dr actually recommended that we get a second opinion so that we could feel more comfortable with the diagnosis. We were given a second opinion with a pediatric GI Dr from Children's Hospital Los Angeles. Unfortunately, we felt like she didn't contribute much to the situation. She was baffled that he would even have IBD since he was so young and tried to say he had allergic disease instead. But Noah is seen by an allergist as well, as he has eczema and reactive airways and I went over all the test results with him too. He ruled out it being likely that he has allergic disease, which is basically being allergic to everything possible under the sun. So now we are in the process of fighting the insurance for a 3rd opinion and are aiming for UCLA which has an IBD department of pediatric GI specialist. We aren't sure what the outcome will be, waiting on the ins to respond. We are just crossing our fingers and praying. That being said, the GI Dr we have right now, seems to know his stuff. He's not my favorite person but there hasn't been a question he hasn't been able to answer thoroughly for us and he does give us a lot of information. Most of the stuff I have read about on this site so far, he has mentioned to me. Its not so much doubting him, its more just needing a second person to say this is really what it is, if that makes any sense.  

 Reply posted for NPapehn.

I'm so sorry to hear about your son.  He's so young just a toddler.  My daughter has UC which was diagnosed when she was 16 which was almost 5 years ago.  I was wondering what type of doctor you see.  My daughter's pediatrician at the time referred her to a general GI doctor.  Then from there, we had to go to another general GI doctor because the first one didn't take our insurance anymore.  The second GI doctor was horrible and just wanted to take my daughter's colon out right away.  I got her into a pediatric IBD specialist which made all the world of difference with her treatment.  Is there a way you can take your child to an IBD specialist or even a teaching hospital like at a university?