5 1/2 yr old grandson will soon start Remicade

[csiegel]

It has been a long journey in search of a diagnosis for my 5 1/2 year old grandson Aidan. Since infancy Aidan has been surviving on Neocate (an amino acid based formula). The only other foods he is able to ingest are pure rice products, water, salt, baking soda and sugar. If he were to eat anything else he would become severely ill. Aidan has suffered from many other illnesses also related to this disorder.
His baby sister Myla, now 18 months old has food issues similar to Aidan at that age and consumes only Neocate and rice cereal.

The family had been to doctors in Buffalo, Rochester, Mt. Sinai in NYC, Cleveland, Cincinnati and Atlanta – no one came up with a definitive diagnosis.

The latest recommendation is that he has IPEX-like syndrome and should start on Remicade -- they are travelling to Seattle for a 2nd opinion in October -- but as I was researching Remicade and learning about the scary side effects I came upon this forum -- does anyone have any advice?:sign0085:

 

[David]

Hi there and welcome

I'm so sorry to hear about your grandchildren. That is truly heart breaking

Remicade can potentially have some scary side effects indeed. The people on this forum who take Remicade usually have either moderate to severe Crohn's disease or Ulcerative Colitis which are forms of Inflammatory Bowel Disease which is a terrible affliction. For each of them, it is about weighing the risks of side effects from the medication versus quality of life and risks from untreated disease. More often than not, the risks from the disease and low quality of life far outweigh the risks from Remicade. It sounds like your family will have to make the same tough decision which is no doubt why you're here. I can't offer answers, only support

We do have a subforum dedicated to Remicade located here that you may want to peruse to read of others experiences.

I wish you and your family all the best.

 

[Judith]

Welcome to Crohnsforum CSiegel,
I am so sorry your grandbabies have so many health problems.
I am curious if your grandson has been tested for any genetic abnormalities? Specifically FOXP3 mutation?

I agree with David, there is a lot of great information on the Remicade subforum along with many positive and negative treatment experiences.

Crohnsforum also has a Wiki page dedicated to Remicade (also known as Infliximab) HERE.
I hope it helps.

 

[csiegel]

Yes, Aidan has been tested both at Seattle and Cincinnati. He tested positive in Seattle, negative in Cincinnati --- they did not find disruption in the gene or the promoter region but did find significant reduction in FOXP3 expression and T cells. He also has many symptoms of IPEX-like disease. We often wonder if he would have full blown IPEX if early on he had not been changed from breast milk to Neocate or if they had pursued other foods -- despite reactions.

 

[Judith]

I am sorry your grandchild is having these health problems. Unfortunately, you are playing a difficult game between nutrition and what foods he can tolerate. Some foods might actually stimulate an immune reaction that could make his condition worse.

Regarding your question about Remicade treatments CrohnsForum has recently received a new member that has had success with Remicade. Although she does not have IPEX syndrome it might be helpful to see her Remicade treatment story. Check out her introduction HERE.

We always love success stories.

 

[Earnellzwifey]

Like others have posted it is truly sad to hear when children have to suffer so much. It makes me cry when I think of a child spending more time in the hospital than outside playing.

I too have been sick from birth, the Dr's said that I would not even live pass the age of five. Well I'm 34 now even though I have been sick my whole life having a loving family has still brought me much joy and happiness.

I was started on Remicade for Behcet's disease before they even found out that I had Crohn's and it has helped a lot with the Behcet's symptoms. So I am proof that it can work for other disorders that it might not have been originally designed for. If it was not for getting the Behcet's under control I probably would not have gotten my CD diagnosis. Now its just getting it under control.

Like others said read the forum on Remicade and the success stories they do help a lot. Welcome to our family sending (((hugs and kisses))) your way.