Kickas.org Forums Ankylosing Spondylitis General Discussion Friends and Family Support Group Remicade for 17 yr old son

I haven't been on for awhile. My husband has AS and is treated with Remicade. Now, sadly my 17 yr old son has it. He was in a lot of pain today and did not go to school. How safe is it for him to get remicade?

Leanne

Hi Leanne I would repost this in the main forum where more people would read it. I believe that it would be safe but it would be good to have more of an idea on what /how severe his symptoms are. I think taking a look at the diet section (no starch diet) would be a good start as well as considering Sulfasalazine. I think depending on severity and what symptoms he has it is more common to start with the shots: Humira, Enbrel, Simponi, and Cimzia. My AS (or Undifferentiated Spondylitis) started at 17 and I am now 28.

Eric

Remicade is FDA approved for kids as young as 6. I have known children even younger on it. My kids have oth been on biologics since their mid teens - about 10 years or so now. Both have done extremely well with few to no side effects.

One concern that I have about the no/low starch diet for young adults and teens is the nutritional deficiencies that can and often do occur. Brain deelopment is not complete in males until the early 20s. Studies have shown that carbohydrates and starches play an essential role in providing the energy needed in human brain growth and development. Personally, I would not feel comfortable restricting this dietary need in a deelopment individual.

I think that that treating children is difficult and all the information available should be researched and considered. That is really cool Stormy that your kids have done so well on biologics. I agree that they are usually safe and can be really effective. If my future children ever develop AS I would likely support them going on the biologic medications. Unfortunately they are not effective for everyone, or show limited effectiveness in some patients. They often prescribe nsaids, dmards, and pain meds that I think should be reduced or avoided if possible. I don't think that the low and no starch diets necessarily cause nutritional deficiencies if followed correctly. I know there are parents successfully using high protein high fat high vegy low starch diets like the Paleo diet to help treat their children's auto immune disorders. The Paleo Mom blog comes to mind. I know that there are limited studies out there, but all of the people whose lives have been drastically changed for the better by changing their diets should at least be considered. I think it is likely this disease originates in the gut, and that methods undertaken to heal and protect the gut are really important. Even going gluten free and dairy free can help restore gut health without doing the more intense diets, and can noticeably reduce symptoms. 17 is close to being an adult and I think he should be allowed and encouraged to learn about his condition and make educated informed decisions. This being said I truly don't know if making the more serious diet changes adversely affects growth and development, and to what degree.I also don't know all of the adverse effects of not making dietary changes, being on a biologic or not being on one. I know that living in chronic pain has got to have some serious negative effects on the developing brain. I know that AS often continues to cause damage, even to those who are on a biologic medication.

Hi Leanne,

AS started for me when I was 18-1/2 y/o. I only wish Remicade had been available back then as it would have saved me from decades of pain - pain that impacted so many of my life choices/decisions. I am into my 11th year on Remicade and over this time I've seen young kids (<10 y/o) receiving Remicade infusions, plus countless teens. I imagine many are there for the treatment of Crohns rather than AS, but for treating AS, studies show it to be even more effective if started early in the course of disease... and I believe there is an increased chance of it putting AS into remission the earlier the med is started. I think it has proven to be very safe and most Rhematologist's feel that since it can be so effective that the rewards far outweigh the known risks.

Since he is just 17, I'd also want to check with a qualified dietician and his doctor if you are considering combining the treatment with any manner of change to diet that involves restrictions. That could be something to research once he is older and/or if Remicade or another biologic doesn't seem to help in his case.

For sure I am biased towards Remicade because for me it's been such an incredible life-saver and without side effects.

Wishing your family the best in this decision-making and hope your son will be feeling better soon!

Thank you!

Thank you!

Thank you very much.