IBD baby relapsing all the time

[sickmom]

My baby girl was diagnosed more than a year ago, at 7 months. She was hospitalized for 2 months, got 2 hickman catheters, ng tube, 3 endoscopies, lots of blood work and other painful tests, etc. She's been on lansoprazole, steroids, 5asa, azathioprine, follic acid and vit d since then. Periodically, she's also taking metronidazole, mesalazine suppositories and steroid anal cream. Oh, and a very restricted diet as in elemental formula and rice only for about a year.

Thing is, she can't achieve remission. She's been flaring about once a month since diagnosis. She can't get off the steroids and it's been more than a year so I'm scared about side effects. Her calprotectin is always high, even when she's without symptoms. Her doctor said she'll even increase the steroids soon if this flare can't be controlled with the suppositories.

I feel like most of her drugs aren't doing anything. I know other kids (older kids) that achieved remission on remicade. I read the side effects about possible cancer and didn't want it but then I have also read the steroids side effects of possible death from chicken pox or other common children's diseases so...I don't know what to choose. They're all scary. She's always relapsing when tapering off the steroids and I hate this vicious cycle.

Of course she can't do a lot of things. No daycare, no playing with other kids, no sun exposure, no playgrounds, no to almost all food, no no no... And after all the meds and living in a bubble, still not getting better.

Any other parents dealing with constant relapses? How does remicade work for your kid?

 

[scottsma]

I'm so ,so ,sorry your baby and you are struggling.
Allowing for the time differences, I'm sure someone will be along soon to offer advice and support. Sending hugs.

 

[ronroush7]

Sending support.

 

[Tesscorm]

I am so, so sorry to hear about your experience! Your poor little girl and nothing is more heartbreaking for us parents but to watch their child suffer. Lots of hugs :ghug: :ghug:

My son was much older when diagnosed, almost 17 years old, so I don't have experience with very young children and crohns. I do know crohns is typically more aggressive in young children and there are some links/info relating to VEO (Very Early Onset) crohns. You may find additional information if you try searching for VEO.

It's true that all these meds are scary, no parent here has made the decision to go ahead without lots of heartache and questions. But, as you mentioned, even the 'first line' drugs used (ie steroids, aza) have their share of risks and long term consequences. And, undertreated crohns comes with it's own risks as well. Biologics (remicade, humira, etc.) do have risks but, generally, the risks are quite low. Many people also require combination therapy which may include using both an immunosuppressant and a biologic.

I know there have been some other parents here with very young children, hopefully, they'll be along. I'll also tag MLP, farmwife, Pilgrim and kimmidwife...

It sounds like your daughter's GI is on top of her treatment and following up diligently but have you considered getting a second opinion?? I'm not sure how helpful it would be but it might be useful to have a second set of eyes looking at her diagnosis, treatments, symptoms???

Lots of hugs... :ghug:

 

[CrohnsKidMom]

So sorry you are going through this. My son was 8 at diagnosis, so also considerably older than your baby. He was initially on steroids, then methotrexate injections, and now Remicade and a lower, oral dose of methotrexate. The Remicade is what has worked the best for him. I am sure there are added treatment concerns due to your child's young age, but obviously you want and need to get the disease under control. I agree that she needs to be on a maintenance treatment that works so she can get off the steroids. A good discussion with the GI, or like Tess said, even a second opinion may be warranted.

 

[Pilgrim]

We agreed to try Humira shortly after our daughter's 4th birthday. Still much older than your little baby!
We agonized over the decision and I was truly heartbroken at first - turned up the soundtrack to "Frozen" while we drove to injections so she could sing and I could weep unseen.
It really made a huge difference in her health. I thought she would never manage school, never even go, but by the start of Kindergarten she was doing ok and it's been a very good year with lots of normal (and some not normal-but far exceeded expectations).
In your position I would try Remicade. It is the drug with most years of use, most dose adjustment, and most supervision.

 

[xmdmom]

I'm so sorry that your daughter has had such a difficult time.

Has your daughter been evaluated for immune issues? I've read that these are sometimes found in very early onset IBD and can impact therapy.

Sending hugs and positive healing thoughts.

 

[sickmom]

Thank you all for your replies and support. We have seen a number of GI doctors and they all mostly agree with her current treatment. All her immune and gene testing has come up normal so far. Her doctor hasn't offered remicade as an option yet but we'll ask if it could be right for her. Do kids generally hurt/feel bad during the infusion? It would be really hard to keep her still for hours even if it's not painful.

 

[my little penguin]

Ds was dx at age 7 and started remicade at age 8
The only pain with infusions is the pain of the Iv needle going in
Nothing else
Most kids are premedicated with Tylenol and Benadryl so they sleep
The infusion is a pump so if it's on a pole you can walk around and move
Most kids just rest

Good luck

 

[CrohnsKidMom]

My son prefers the Remicade infusions to the weekly methotrexate injections I was giving him. The poke from the IV needle hurts a bit, and the flushes give a cold sensation in his arm, but otherwise it is painless. You can get a freezing spray or cream to help, but my son doesn't bother. At first my son was careful not to move his arm around during the infusions. Now he drags his IV pole to the bathroom and manages in there fine by himself, moves about the room a little during the infusion, etc. He gets a slight reaction about halfway through the infusion-feels a little hot and gets pale. But, his temp never goes up, so they just monitor him. He is premeditated with Tylenol and Benadryl, and also gets a small dose of steroids just prior to the infusion. The steroids and blood draws are all done through the IV, so there's no extra poking.

 

[sickmom]

After you started remicade, how soon until you could kick all other meds? I have heard from 1-3 years, starting with steroids, then aza and 5asa last (if at all). Also, any other kids on steroids for more than a year? One mom told me her girl was on steroids for a decade with very small breaks and she's fine now, in college, doing everything, etc. Only side effect she still has kind of a moonface.

 

[my little penguin]

5-Asa are not useful in crohns at all
Most Gi equate them to giving aspirin for a brain tumor
Not going to help much but not going to hurt either .
They only effect the top most layer on the intestine like a cream. Unfortunately crohns affects all the layers in the intestine .

Aza is an immunosuppressant so most docs keep them on the combo of that plus biologics for at least 6 months to year to prevent antibody formation but other kids need it longer
My kiddo is on a combo and will be as long as it works

Steriods can be weaned either once the loading dose are completed
Typically it's reduce 5 mg of the dose every week so depends how high you start and if the symptoms return when the dose is reduced.

Pred will cause diabetes , osteoporosis , crushing syndrome , growth retardation, mood swings cataracts, glaucoma etc...when used long term.
Long term is more than a few weeks.

Ds has been on high dose pred twice and low dose pred twice since dx
Low dose pred does not have the same risk of side effects once you get to 5 mg a day or less .

So eliminating meds depends on the kid

And sometimes time is just needed .
Ds was on high dose pred for months
Started remicade and off pred by the third infusions (6 weeks)

 

[sickmom]

Her full dose of prednisolone was 10mg, then after months 7,5mg, then 5mg, then 2,5...lowest dose was 2,5 mg on one day, none the next and that's where she's relapsing after a while. For a long time she was relapsing with the 5 mg too but finally managed to lower the dose with salofalk supps. A median dose would be 5-7 mg/day for more than a year now so that's scary.

She's really bad this time, a lot like she was last year when she was admitted for the second time. I'm really scared and fear another hickman line could be considered for tpn. She's really active now and will definitely pull on the line and tear stitches. Ugh...we have 4 more days of budesonide enemas and then a GI appointment but I'm scared we might have to rush to the ER sooner if she keeps this up.

 

[Tesscorm]

Would it be possible to do exclusive enteral nutrition again for a period? Not to replace any of her other med options but just as an added aid to help the meds get her into remission. It might eliminate the need for TPN?? Although, it might be hard to keep a child so young on exclusive formula only for that length of time.

 

[sickmom]

That's really close to her normal diet plan. It's 3 bottles of elemental formula a day plus one bowl or rice/pasta and 1-2 slices of bread. If she's only on formula her poops are always watery and it's a bit confusing as to when it's real diarrhea.
Her GI said to wait to see what the enemas will do and examine her this Thursday. So far they seem to be helping.

 

[my little penguin]

Is the bread gluten free ??
Gluten can be very hard to digest

I understand the liquid in equals liquid out
But additives and emulsifiers seen in bread can cause issues as well as the gluten
Xantham gum
And guar gum
Any of the lecithin can cause an issue
Some elementals have fiber added
Neocate Jr comes with prebio ( which is a fiber )

Ds is on all elemental formula currently with only pedialyte

 

[sickmom]

She's on Neocate LCP, we tried the advance a few months back but she flared up. The bread is typical store bought as her GI insists there should be no trouble with gluten (or lactose, seeing how some of her meds have lactose and I was told "lactose intolerance can't cause bloody poop"). Maybe we could try gluten free and see how that works.
I gave her some oatmeal (oats and water) around two weeks ago, didn't seem to hurt but now I'm paranoid about anything that could have triggered it.

 

[Optimistic]

Hi Sickmom. I'm so sorry to hear about your precious baby. I'm following and hoping to hear about a turn for better.

Although my son was 13 when diagnosed, I wanted to chime in and reinforce what my little penquin said. My son does not have celiac but did start to flare after eating breads and pastas with gums. Even the gluten free ones have some additives that can be problematic for some with IBD and were definitely bad for him. I had to either make it or get it from someone who made it basically pure - without additives or substitutes or preservatives etc.

Good luck.

 

[Farmwife]

Hi and welcome.
I'm sorry I'm late to this thread.
My Grace was dx at 3 but had suffered since 3 months old.
My girl is also in a perpetual flare. It does get better from time to time but never full remission..... yet.

She's been on a lot of drugs but Remicade seems to be working the best.

Please ask as many questions as you like.
We're all here to help each other.

 

[Mehita]

Has Celiac been ruled out?

 

[sickmom]

Thank you all for your support. She's been flaring about once a month since diagnosis and lately she's been responding very well to Salofalk supps (and only a 250mg dose for a few days!) but now she had a massive flare.

She was constipated for a week, I used one kid glycerin supp which did nothing and the next day she started pooping (after some plum juice). It went really downhill from there, every day her poops were more watery, bloody and frequent. We got to the point of bloody diapers with clots and mucus (no actual poop at all) and a lot of pain as she's crying loudly when the blood passes. We'll be admitting her to the hospital later today and have a colonoscopy/endoscopy (4th one) on Monday.

Her GI said we'll likely start Remicade now that she's 2 as she's considered old enough for it. We had a lot of bloodwork done today to check for TB and other stuff.
I'm happy to read so many good stories about Remicade and how well it's working for most kids. I also read somewhere that after a year without symptoms they can stop infusions but only 30% of patients stay well after that and 60% relapse within a year. Oh well, I guess we just need remission right now and we can worry about kicking the drug when the time comes. And getting off the steroids after a year and a half would be a relief.
I hope this works.

I have asked about gluten and they said it's okay to have. She's had 3 endoscopies with biopsies so I guess they would have seen signs of Celiac if any were present (?)

 

[my little penguin]

Glad she is getting help
It is not recommended to stop remicade
Unless it stops working
Or you have an allergic reaction
Kids disease tends to be severe and few drug options
Once you stop remicade the odds of being able to restart it are slim

Hope the scopes go well
And your child feels better soon

 

[cbylow]

I believe that the emulsifier (probably soy lecithin) in the formula might be
what is preventing remission. Newer studies have linked this to IBD.
This is just my guess. It could be something worth considering.

 

[my little penguin]

Emulsifiers are necessary in formulas
Formula only diets ( exclusive enteral nutrition ) has been studied for years and found to be as effective as steriods to induce remission
Emulsifiers in foods is a different story than formula .

 

[DustyKat]

:ghug:

Sending loads of luck and well wishes that Remicade helps your little one find the way to better health, bless her. :heart:

It is normally standard that coeliac is tested for when scoping for the symptoms your daughter has.

 

[kimmidwife]

I am so sorry to hear about your little one. I know you mentioned you had some immune testing done. Did they do an extensive immune workup?
Also I would definitely eliminate the bread for now. I would stick with formula and some very gentle gluten free foods. Also instead of TPN would they consider giving her an NG tube or a Mickey button and a formula like the neonate she is on which is already broken down and very easy for the body to digest. It sounds like she needs a long term solution and TPN is really not a long term solution.

 

[kimmidwife]

What is a Mickey button?
http://www.mic-key.com/resources/faqs.aspx

 

[polly13]

Hi there, just to want to give support. My little girl was diagnosed with Crohns at 2 - so she was older than your baby, I do think however it reared its head when she was about 9 months. She was on steroids, 6mp and multiple antibiotics on and off for about a year and half after diagnosis - none of which had any major impact on her symptoms, she might improve for a week or two and then back to square one again. She started on infliximab when she was just turned 4 and the initial bounce from it was fantastic she was like a different child, however it stopped working after I think 3 infusions, she then went to humira and methotrexate and went into remission for almost 3 years. Very long winded way of saying in our experience biologics work when all else fails. Having said that because they have to tell you about the side effects and you as a parent have to process that information and make a decision therefore making it a really really difficult time. I see from your update that you GI has suggested infliximab, fingers crossed it will work for your little one. When I remember back to that time when Lucy was so unwell, when the meds started to work, I stopped worrying about the side effects because it is so important that a young child can be a young child and do all the things they are supposed to do - I suppose what I am saying is that you have to live in the here and now and a child that is well is worth everything. Good luck with the infliximab

 

[sickmom]

Many thanks to all for your support. We postponed the infusion because of a high white cell count and gdh c diff but no toxins so we'll start vancomycin and maybe get the infusion on Wednesday.

 

[steve55]

Perhaps the cdiff is an opportunity to try a fecal transplant. If it clears the cdiff that would be good alone and it is an accepted use in the US given that vancomycin is not as effective. Perhaps it can resolve the IBD as well, although this is not as demonstrated.

 

[sickmom]

I asked about it a few months ago and her gi is against fecal transplants, even said a girl had one in this hospital and made her worse. She's also on cefotaxime for... I don't really know what. Maybe the biopsies from the scopies?
Salofalk supps usually work well but this time they gave enemas to cover more advanced disease. They helped but gave her a bunch of side effects like fever, vomit, fatigue, total loss of apetite (she would't even drink water), lethargy etc so we stopped them.

 

[sickmom]

Now we're waiting for blood transfusion since her hemoglobin is 7. It was 8 just yesterday and she only had one half decent bm, I don't get it. She got albumin infusion yesterday but docs say this is unrelated. Hoping for no more setbacks.