New to this med question

[Momof3boys]

Hi, I have a 7 year old with Aspbergers, eosinophil esophagitis (food allergies to corn/rice/chicken), and 10 weeks ago we found out Crohn's too. He is on several meds but I am really concerned about the Methotrexate. He has a very high pain tolerance and even when bleeding from a fall he will not complain of pain. We have had steadily had more refusals to eat and he is not a good eatter to start. This week he really has eatten a handful of crackers each day of the last 6. And vomitting every couple of weeks. He is having a lot of nausea and it breaks my heart to see him in pain. Anyone have a child on remicade or another biological med. I am hoping switching his meds will help. But I don't know what those meds are like either. Looking for some insight. I feel GI is receptive to my concerns and called them. Just helps to have info from a parent too.

 

[Jmrogers4]

Where is his crohn's located? My son switched to remicade a little of a year ago and his appetite took off. He was diagnosed at 10 and is now 15 and like you said pretty much quit eating and we fought against it for many years before the switch remicade.
He would eat a couple of bites of chicken maybe a spoon or two of rice and say he was full. Inflammation in the small intestine lead to that full feeling for him.
We just always assumed he had inflammation in the small intestine but never tested for it, however assumed it was under control as scopes looked good and blood work was always in normal range. MRE showed otherwise and he was switched to remicade January 2014.
Half way through the first infusion he told me he was starving. We went out to lunch after the infusion and he cleaned his plate! Appetite has been normal for a teenage boy ever since then. He started out at 89 pounds his first infusion and 5'1" and is now 130 pounds and 5'7 1/2" and still growing.
It wasn't over night and weight came first and then height and it was a good 6 months before he really took off. Probably took that long for his insides to heal to the point he was absorbing and his body could take those nutrients and do what it was supposed to.

 

[crohnsinct]

Has he been on Mtx 10 weeks now? It can take as long as 12 weeks for mtx to become therapeutic. Is he on anything else to handle the inflammation (steroids, Exclusive Enteral Nutrition) while you wait for the mtx to take over? It is common for kids with active inflammation to not want to eat and it is important to knock down the inflammation as quickly as possible. Not only for their appetite but it also reduces the risk of surgery etc.

One of the side effects of mtx could be nausea. To combat side effects they typically prescribe folic acid. My daughters take 1 mg daily but there are others who take one larger dose the day after mtx. Is he taking the mtx orally or injection. The injections are better absorbed by the body (an issue when inflammation is present) and can help with the nausea.

So as you can see from my sig, I have one daughter on mtx only and one who is primarily on Remicade for her Crohn's. Mtx was added later for psoriatic arthritis. Remicade has been wonderful and I have to admit the risk profile for me is more palatable than Mtx. However, my second daughter was not as severe as her sister and the doc felt a step up approach with her was more appropriate. So far so good.

 

[Momof3boys]

I haven't filled out the profile stuff. His meds are Prevacid daily 15 mg, budesonide 6 mg daily (weened down from 9 last week), 1 mg folic acid daily, oral Methotrexate .5 mL, 25 mg/mL weekly, multivitamin and iron drops. He weighs 50#. His labs look better for the most part since the start. He has a double if not triple whammy with eating as autism and food allergies add their own challenges. We have done feeding clinic to increase his repertoire with food. I'm just worried about him. It's so hard to watch him rolled in a ball in pain a few times a week when I have many times found him with injuries he is unaware of with his autism and pain tolerance. It makes me worry about how much discomfort he is in. I did talk to GI and we are getting a stool sample for cal protectant. That was a good marker when we started all this. Then might change meds if we see issues. I just think something is not right. He is miserable.

 

[Momof3boys]

Inflammation throughout the small intestine.

 

[crohnsinct]

Yeah fecal calprotectin is my current favorite test.

I understand the feeding issues as my daughter works with children who need feeding therapy. She is only 15 now but has had a passion for this work since she was 9. It is actually what she plans to study in college. When you add in IBD, it makes everything even harder. Hard to know if it is a behavioral issue or if they are withdrawing from food for real pain issues as many kids do. I don't know if this will set his therapy back but would he drink his nutrition for a while? Think Boost and Ensure shakes. Exclusive Enteral Nutrition (where the kids drink all their nutrition and do not eat or drink anything else) can be just as successful as treatment with steroids to get inflammation under control and has the added benefit of mucosal healing. Even if the therapists feel like it isn't a good option behaviorally maybe just a few a day to keep his nutrition and strength up?

Could the taper from the budesonide been a bit too fast? This happened with my older daughter. Every time we tapered symptoms would start back up so we had to slow it way down.

It sounds like you and the GI have a good handle on things and a good relationship. Good luck and lots of hugs!

 

[Momof3boys]

Thanks! Formula is tricky due to the corn allergies. I'm hoping to avoid that but understand it might be an option we need to pursue. It is such a struggle to get anything into his diet. I don't want to eliminate everything and start all over. Whatever is best for him I am willing to try though.

 

[my little penguin]

Most with 99.99% of kiddos with corn allergies tolerate neocate and elecare ( even EoE kiddos) both are elemental formulas so free of allergens
Normal polymeric formulas ( boost/pedisure would be an issue )
As would semi elemental peptide /peptamen jr

A lot of info on parents of kids with food allergies on EoE /

EGIds as well apfed has info

Please don't let corn allergy keep him from formula
I know more than a few kiddos who are anaphalatic to corn in all forms and amounts but no issue with elemental formulas

Another question we get asked a lot is whether the corn syrup solids in Neocate are safe for children with a corn allergy. It is important to remember that the corn syrup solids in Neocate are highly refined. This means that the ingredient goes through several steps in order to take out all of the protein from the corn (since proteins are what cause allergic reactions). This leaves only the complex carbohydrate source from the corn. So, even if your child has an allergy to corn proteins, Neocate is still an appropriate choice for them

From
http://www.neocate.com/blog/reading-food-labels-carbohydrates-in-neocate/


KFA links
http://community.kidswithfoodallergies.org/forum/eosinophilic_disorders

It's harding having more than a few things going on
DS has a lot - not EoE but at one point they thought he had this
Sometimes the crohns meds suppress the immune system which helps in other areas including allergy
My DS "outgrew" an allergy that was anaphylactic to eight tree nuts after starting his crohns meds - he was dx with crohns at age 7 and is now age 11.
He is on biologics - Humira plus Mtx ( Mtx is for the arthritis).

 

[Momof3boys]

I was wondering about neocate. I know when he was an infant, before we figured out what was really going on with him we had looked at it. I'll keep that in mind.

Another question. Again I'm just learning about this stuff.... Fevers are a sign of flare too right. Low grade or high? He has been getting low grade and they coorespond with the stomach pain it seems. He just spiked one now.

 

[Momof3boys]

We were on prednisone when he was diagnosed with EoE at age 3. We are in a clinical trial to find out if he really has EoE versus just issues with corn, rice, chicken and liquid cows milk and soy milk. It's a genetic study we got into. Hope it provides more clarity.

My hesitation with the formula is he has severe anxiety with new foods. Even if the packaging changes. Adding and sometimes keeping foods in is a huge struggle. He eats a very limited diet but it took a ton of work to just get that. Even foods kids like, like candy etc which isn't healthy he refuses to try.

I'm hoping Crohn's is the end to the stuff of his plate for awhile. Psoriasis recently was a possibility too because of rashes on his knees. He has enough on his plate at least I am praying!!

 

[my little penguin]

Psoractic arthritis is common with crohns
Since both are auto immune disorders
EGIDS are precursors sometimes to Ibd

 

[CarolinAlaska]

My gluten intolerant daughter cannot take Prilosec either, they give her abdominal pain and diarrhea. I don't know if there is a connection, but watch to see if symptoms worsen if she takes it. Took us years to figure that one out. Has she seen an allergist? No chance of getting a second GI opinion?

 

[Catherine]

I completely understand the food issues with a Asperger's child. Mine is an adult now, she still has a limited number of foods that she actually likes. Along with high pain tolerance, she doesn't ever seem to feel hungry.

I am currently researching MTHRI, only mention this due the connection with Asperger's. It is widely reported that 98% of children with autism carry least one mutation of the MTHRI genes. I can't find where this figure comes from.

But I did find the following on Methotrexate and MTHRI

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2673494/pdf/nihms80495.pdf

 

[Momof3boys]

Interesting Catherine. I've never heard of MTHRI mutation. I tend to not do a ton of research on aspbergers especially in the last couple years as it is difficult for me. I will keep this article and look into it more. Thanks again. I joined this site today because I am so frustrated for my son. It's nice to hear from someone who can get the sense of all of it. Thanks for your response. I hope your daughter is doing well! I do know my son has issues metabolizing certain drugs and foods so that is a big reason I am very uncertain Methotrexate for him. Now I just have to collect the stool sample and pray it shows something. It is eating me up watching him in pain.

 

[Catherine]

My daughter with asperger's is doing very well. She doesn't have Crohn's her sister does. She has just started university. If you had told me 7 year ago when she was Dx at 13 that she would be studying science I wouldn't have believed you.

I also don't usually research Asperger either. In our family the condition is hereditary, which means there is no doubt it was caused my genes.

I currently try to find the cause of my youngest daughter sky high folate levels and low b12.

 

[Momof3boys]

There are no genetic links in my family to aspbergers or Crohn's. I can see some tendencies in certain people in my family for the aspbergers however. But who doesn't have some autistic tendencies.

I do know he is sensitive to meds. We thought a few years ago he was having absent seizures and had an MRI. They gave him Nembutal and he didn't have normal motor control for a full day plus. And we had a regression in language and he became far more distant and had huge meltdowns for about 3 months after that. I think the doctors didn't believe me but you know your kid. So I am hesitant with meds for him.