Other patients with early onset disease?

[Malgrave]

I am new in this forum and as a mother of 5 year old son with very severe crohn's (first symptoms at the age of 22 months), I would be interested to know, are there many others in this forum with the early onset disease? Or is there a specific thread on that already?

I would be very interested to hear your experiences on everything related to your child's disease since here in Belgium we feel like extremely special case and we have faced so many difficulties ih his treatment over the last 3 years...

 

[my little penguin]

Hugs .
DS was dx at age 7. Symptoms since birth.
He is currently on Remicade.

 

[Farmwife]

Hi Malgrave.
My Grace is 3 1/2 yrs old. She's been ill since 6 mo. old. Our GP feels she has Mastocytic Entercolitis. We'll see what the future holds.
My poor Grace has already been poked and prodded more than I. Countless times of holding her as she screamed in pain. Watching as she suffered with one thing or another.
It's the toughest thing I have been through. Hopefully we're on the road to remission.
I hope you find comfort and fellowship here. It can be very lonely.

 

[NMMom]

Hi there! My five year old daughter was diagnosed just about a month ago but started having major symptoms just after her 4th birthday. If I look back I can maybe see how she was having issues before that but can't say for certain. She's now on Prednisone, Pentasa and AZA.

This site has been a saving grace for me. You'll learn lots here and most importantly you'll know you aren't alone.

 

[Thermo]

I had symptoms since as early as 2 and was diagnosed at 8. I responded to Pentasa and steroids at first due to the disease being mainly in my large intestines since then as I aged it moved from my large intestines into my TI and now my large intestines are largley unaffected. When I was diagnosed in '92 it was the same way as far as feeling like a special case. I spend 2 months in the hospital and almost died due to losing so much weight and bleeding from 7 ulcers in my stomach. Until finally they called a specialist from another town who immediately diagnosed me with Crohns and started steroids which saved my life. The first flare always seems to be the worst and once you get it under control and keep it that way it has a way of being somewhat better managed. The very first flare in children is often terrible and lasts several years hang in there and don't be afraid to get another doctor involved doing so saved my life (Literally)

 

[Sascot]

Just wanted to say welcome. Sorry I do not have any experience that may help, but wanted to wish you all the best for getting your little one into remission!

 

[izzi'smom]

My dd was dx at 4. Welcome to the forum...a lot of great info here!

 

[polly13]

Hi there, my dd was diagnosed at 2 and had symptoms from 9 months, she is now just turned 4 and doing ok. I have found this forum to be a life saver because like you in belgium Ireland is a small country and we are a special case here and we have yet to come across a child as young as Lucy with Crohn's. When was your ds diagnosed, where is his Crohn's most active. Its very hard watching a small child in pain with Crohn's but as I said there is great suppport, knowledge and wisdom on here.
Polly

 

[AZMOM]

Symptoms at 5. Dx at 6. For crohns. Arthritis at 3.

Every kid is different, really. Just trust your instincts and ask lots of questions!!

J.

 

[Tenacity]

Welcome to the forum Malgrave

I'm so sorry to read about your little one! You have come to a wonderful place to find kinship and support.

The only advice I would give anyone with such a young child, is to try the elemental diet via an NG tube.

If you would like to read more about it, we have a section in our treatment forum.

The only reason why I mention this, is because it has absolutely no side effects, and has proven to be as effective as Prednisone. There are also some good books out there you can read about this form of treatment.

I have known some kids who had tried and failed many medications, only to have NG tube feedings put them in remission, and give them their lives back.

It is often a first line form of treatment for children. If I have learned one thing over the years, it is to not blindly believe everything the doctors tell you. I just don't understand why they would make a child steriod dependent and give them very strong meds, without even trying the NG tube feedings first.

Let us know if there is anything you need, or if you have any questions

 

[Sascot]

Hi, I agree with Tenacity, it would be very benificial if you tried the EN. My son had it exclusively for 8 weeks then reintroduced food. He had the NG tube and although it irritated him for the first 2 days, after that he hardly noticed it was there and it was easy to learn how to do the feeds.

 

[Malgrave]

Thank you all for your replies and suggestions!

My son is a special case also because he has a ileostomy and time to time, maybe even most of the time, he is bleeding from his rectum. The possibility of diversion collitis has been excluded and his doctors are quite puzzled.

Furthermore, he does not seem to respond to conventional treatments and that is why a lot of immunity tests were performed AGAIN this week.

And yes, we have also tested Modulen IBD 2 years ago, no response :confused2:

Anyway, thanks for your support and warm welcome. I just need to keep reading and reading. That is all I'm doing these days...:study:

 

[Tenacity]

Malgrave - sorry to hear your son is such a complicated case. Did you try the Modulen through a tube? THe only reason why I am asking is because in the beginning, if it appears to be not working, what you can do is turn down the rate of the pump. Let it run really slow, and you might well see a difference. Also, perhaps try a different formula like Peptamen?

I know it is so frustrating - everyone is different and what works for one, doesn't for another.

Does he have a loop ileostomy? Perhaps they can do an ileoscope and take a look to see what is causing the bleeding.

Please let us know what happens.

 

[DustyKat]

My two were much older than your little one when diagnosed. Unfortunately as you have seen already there are indeed many here at preset that have very young children with IBD and I can also attest to the fact that there have been quite a few in the past as well.

I am so sorry to hear that your child is not responding to treatment and it often does seem to be the case that young children do have disease on the more severe end that is difficult to control and it doesn't help that most of the drugs aren't recommended for young children so there is little information available on their effects and success.

Good luck, my thoughts are with you...:hug:

Dusty. xxx

 

[Malgrave]

Thanks a lot for your support!
In fact when he was on Modulen, he drank it himself. Maybe that was not a good idea after all...
And indeed, he has a loop ileostomy and the 2 colonoscopies done this summer were made also via it

 

[Patricia56]

Has your son been evaluated for mitochondrial dysfunction disorders? I don't know what other symptoms he has but I know of a couple other children who were eventually diagnosed with mitochondrial disorders after an initial IBD diagnosis.

You may also want to talk to your doctors about using hyperbaric oxygen chamber treatment as a possible option if he has truly failed everything else.

http://www.ncbi.nlm.nih.gov/pubmed/22417628

Hyperbaric oxygen treatment for inflammatory bowel disease: a systematic review and analysis.