6 y/o son diagnosed with Crohn's

[Rita]

My son, 6, was Dx'd in April with Crohn's and is abcessed and inflammed from his throat thru to a perianal fistula. Dr. belives he has gone undxed for a year or more. He started showing serious signs in November. He lost 23 lbs in 2 months. Hospitalized at Tx Childrens in Houston for almost 3 weeks after being transferred by ambulance by our local ER.

Once we were told the Dx we immediatly started prednisone and the first Remicade infusion. He gained 20 lbs in 3 weeks and was the kid I hadnt recognized for a long time. His 3rd infusion he had a reaction and he is now taking 6MP with blood draws weekly to monitor his liver functions.

In the last 2 weeks he has had more pain, cramps and bowel issues than he ever did prior to being diagnosed. I am having difficulty weighing the benefits vs. the risks and side effects. I hate seeing my little boy in so much pain and discomfirt knowing there's nothing I can do to make it go away! Or worse...am I making the wrong decision in permitting the treatments.

Adin has an Appt next week for a check up and an infusion in the middle of July. Any thoughts, suggestions and prayer is needed!

 

[Farmwife]

Believe me you have my prayers!
I'm so sorry to hear this. Your poor son. I know how this weighs on a mom. My girl is three and still going thought the Dx. It's ruff to see them this way. I can't give to much advice since I new to this. More parents will be on there way to offer support and advice. Hang in there it does get better. Welcome aboard!
Farmwife

 

[crohnsinct]

Rita: so sorry to hear about the extent of your son's disease but welcome to the forum!

You mentioned he had an allergic reaction to the Remicade and is now on 6mp...but then later say he has another infusion scheduled...they didn't stop the Remicade due to reaction? Is he totally off the Prednisone? My daughter was on Remicade and Prednisone but every time we tapered symptoms showed back up. We went up and down for awhile before doc finally decided the Remicade needed support and Prednisone wasn't a long term option. Our doc suggested Methotrexate but we opted for Enteral Nutrition (with docs approval). It worked great for us (we used it in conjunction with the Remicade). It helps with inflammation, mucosal healing and nutrition all with no side effects or risks. Check out the Kids on EN thread here in the parents forum.

I am not familiar with 6mp but with some drugs they need some time to kick in. Remicade can be one of those so maybe 6mp is as well and if Prednisone has been removed that may be why symptoms are popping back up????

If he is still on Remicade what schedule is he on (8 week, 6 week etc)? Could it be he is just nearing the end of the medicine and so symptoms are showing up again? Maybe they need to tighten the schedule. Although he is pretty far from his next infusion. My daughter went from 8 to 7 to 6 and now we are trying a 5 week cycle.

There are so many wise and wonderful parents here ask and ask away!

Good luck and keep us posted.

I will pray for your little guy and you!

 

[Rita]

Thanks! He is not on any steroid now. He is on an 8 wk interval for Remicaid. When he had the reaction they gave him a steroid shot, waited 45 min and restarted the infusion at a slower dose rate. He has only been on 6MP (25mg every other day) for 1 week. Remicaid has been 2-4-6-8 and is suppose to stay every 8 weeks and the 6MP is suppose to prevent further reactions to Remicaid. I believe that he would feel better with a round of Prednisone but Im not the Dr.

I am so thrilled to hear similar stories here! I am not alone and I'm not really crazy!

 

[Catherine]

Welcome to the forum

Can't give any advice, as my daughter has only been on pred and aza.

More experience member will be along short to give you some advice.

 

[kimmidwife]

Hi Rita,
My daughter had a severe allergic reaction to remicade so they took her off it. Keep a close eye on him during the infusions to be on the safe side. I never heard of 6MP reducing allergic reactions. Sometimes giving a dose of prednisone and Benadryl immediately before can help.

 

[Suzysu]

I can't advise you rita - but I will be thinking of you and your son - big hugs xxxx

 

[crohnsinct]

Rita, so it sounds like he is still early in the Remicade and 6mp treatment. How long ago was the Prednisone stopped? I have been wanting Prednisone back for months but the EN really helped get O back on track. I suspect you may find they shorten that cycle as it sounds like he is at the mid way through and symptoms are popping up and at 8 week cycle there is certainly room to shorten. Our doc also increased dosage. They have many tricks in their bag just a matter of finding which works. I encourage you to read up on EN and tuck it away for future reference. Not a lot of US docs bring it up. Mine didn't. But when we bring it up turns out they are all for it...go figure.

Hard for us mammas to wait and watch while they find what works. We want our kids fixed and now!

Good luck at your appointment next week and keep us posted.

P.S. this is the first time I have heard of someone having an allergic reaction and continuing Remicade...hmmmm

 

[DustyKat]

Hi Rita and :welcome:

I have created a thread of your own so it doesn't get lost in someone else's.

I am so sorry to hear about your little boy, bless him. :hug:

Does your son have actual abscesses? Normally Remicade or any biologic would be contraindicated when there is infection present. Might be something to ask to the docs about.

I assume the reaction your son had to the Remicade wasn't a full blown allergic reaction and that is why they continued? I would also discuss this with the docs and establish exactly what happened and why.
6MP is can be used to prevent allergic reaction to Remicade but it is normally used to prevent reactions when Remicade has been stopped and restarted again. I don't know that it is overly successful though.

I think Enteral Nutrition is worth looking into even if for its nutritional and bowel rest advantages alone, it just may help to put things back onto an even keel.

You are not wrong in permitting these treatments to be administered as untreated or under treated Crohn's can lead to very serious complications.

At your appointment next week I think it would be a good time to establish:
What is going on with his response to treatment.
Are they happy with his progress.
What you seeing are at home in regards to symptoms.
Where you go from here.
What are the alternatives.
When can you expect to see consistent and prolonged improvement.
I would raise the abscess/biologic issues, his "reaction" to the Remicade and Enteral Nutrition.

Good luck hun and be sure and keep us posted!

Dusty. xxx

 

[Sascot]

Welcome. Sorry to hear about your son!! As mentioned above, it sounds like he would definately benefit from the EN since he is inflammed all the way from his mouth to his bottom. It would give his poor body a rest and allow the medications to heal him. Good luck! Hope he has some relief soon.