2 year old with IBD symptoms

[Shaggy08]

My 2 year old son, Xavier, has had IBD symptoms since he was an infant. Doctors first thought the blood in the stool was allergic colitis and/or a dairy allergy since he was being breastfed for the first 12 months. But as time has gone on, he now is suffering from constant stomach pains, 20+ bloody and watery stools per day. In the past three months, he has had 3 colonoscopies, 4 blood transfusions, and is currently being treated as if it is Crohns disease/Ulcer Colitis and is on predisone and remicade, which are not fixing the problems. Doctors say that if medications do not start helping, we will need to have a colectomy which scares the heck out of us. Obviously it is rare to have a 2 year old be diagnosed with Crohns, but my question is:
Is there anyone else out there that has a young child going through or has gone through something similar? We are emotionally drained and don't know where else to turn so I found this forum and would appreciate any advice anyone has. Thank you for your time and efforts.

 

[Farmwife]

Hi and a warm welcome. I'm sorry you had to find your way here but glad you found us.

My grace was dx at 3 but like your child has suffered since birth.
My girl also is struggling with drugs that work but I think I'm starting to see some improvements.

Sometimes these drugs can take awhile to work.
Prednisone is given to get the inflammation under control and to give remicade time to kick in.
How long has he been on it?

Also, a second opinion is always a good idea. Good GI's will always welcome another set of eyes reviewing the case.

Please ask all and any questions we're here to help.

 

[Shaggy08]

Our son has been on prednisone for two months and has had 3 remicade infusions. The first remicade infusion we saw good results within 24 hours, but the last two infusions haven't seem to do any good.

What is your experience with your little girl and methotrexate and humira? Did those work quickly to reduce inflammation and stomach pain? Any negative side effects?

Our GI doctor here at Seattle Childrens hospital hasn't brought those up in discussions, so I will ask him about those, but any light you could shed would be helpful?

 

[Imerald]

My Ella was dx'd with UC shortly after she turned 2. She too had bloody stools since she was a NB and they also thought it was because of breastfeeding etc. It sounds like Xavier is having a tough time with it. I'm sorry, I know its all so much to take in and I hope you get some answers and find a med that starts working.

Have you tried any diet modifications? Ella's seem more manageable when we avoid certain foods etc.

 

[Farmwife]

No sadly it's not working as fast as a this mama would like but it has for other's.

Both mtx and Humira are given by injections at home. Humira and remicade are in the same class of drugs but remicade seems to be considered the top....I think???

Here's the thing for your dear boy, he sounds like he has more disease areas than Grace, IBD wise.
It's so important to get that under control.
Have they moved up his schedule remicade? It's not uncommon for GI to move up infusion.
Do you notice that the remicade wears off faster after so many days?

Grace's Humira was moved from 14 days apart to 10 days apart. I thinks it's helping more.

 

[CrohnsKidMom]

Welcome to the forum, but so sorry to hear all you've been going through. My son was dx'd last yr at age 8, so obviously is not as young as your little guy. Our GI nurse did tell us that they are seeing more and more young ones-still in diapers-being dx'd. So sad. I hope your little guy starts feeling better soon. Sending my prayers and support.

 

[my little penguin]

Izzismom had similar problems as did queengothal ...
They both are not around as much.
I know izzismom had to go to Boston children's for her daughter and started her on tacro.
They tried humira and remicade neither worked - tacro did.
Queen gothel deals with UC and had surgery for her kiddo.

I would try to get a second opinion ASAP from one of the big three pediatric Gi centers
Children's hospital of philidelphia
Boston children's
Cincinnati children hospital

Those places see more kiddos and have more experience with tiny kids .

Sterlera may also be an option since its a different type of drug .

Hugs

 

[Brian'sMom]

At our last GI appt our GI talked about Vedolizumab. I don't know much about it. She said they can't prescribe it here in KC but the "Big Dog" hospitals can. She said a GI she consults with in California said to her about one of her "Complicated cases".. "Try to hold on for Vedo... It's doing really well in the adult population" ... Like I said tho... It was a quick conversation and I don't know a bunch about it. She just said it works on a different pathway than the TNF blockers.

 

[Patricia56]

On the west coast there is also UCSF Children's Hospital and Cedar Sinai. Of the two I believe Cedar Sinai is the larger program. You could also consider Mayo Clinic in Rochester, MN.

I agree that you need a 2nd opinion if they are talking colectomy.

 

[AshleySummers]

Hello. this seems all too familiar. My daughter was 6 months old and started having bloody stools and lasted for months doing this. FINALLY after a 3 week hospitalization came to find out she had salmonella... she was constantly dehydrated had to have lots of scopes in here and transfusions as well. they tested her blood. they thought she had parasites and other things come to find out it was salmonella and still now I have to mix a powdered medicine in with every drink she has to keep her from having stomach issues because it messed her body up. It takes her 20+ minutes to push out her stools and most of the time they are runny. I never understood with it being runny why it would take 20+ minutes for a runny stool to come out.

 

[Patricia56]

Sorry, I didn't have a lot of time to post an answer before. I should preface my remarks by saying that I am not a doctor and I have great respect for the Ped GI's who have many years of training and experience under their belts. I am also a mom who has changed ped GI's 3 times because my son was getting substandard care and who, in self defense, learned a lot of things many parents don't know. I have also spent a lot of time on boards like this one hearing other people's stories and getting advice. So I am speaking to you as another parent who considers herself an expert caregiver of a child with CD. And I don't know nearly as much about UC as I do about CD and my son has not required any surgery. Any advice I give should be taken to your doctors for consideration.

It sounds like there is still uncertainty about the Crohn's diagnosis vs. UC. This can make a big difference in how you proceed should surgery be required. For one thing, in CD, surgery is avoided if at all possible. This is because it is almost certain he will eventually need surgery on the small intestines which tends to cause problems with chronic diarrhea and that is more easily controlled if you still have your colon. Also different procedures are used - with CD you are pretty much stuck with having a bag. With UC you may be able to have an internal pouch created that allows relatively normal functioning.

With UC surgery is virtually curative and makes sense when you are faced with severe, unremitting and unresponsive disease. Unfortunately, many children diagnosed with UC have severe disease and do end up with surgery. Most people can actually live quite well without their colon - mostly it just sucks water out of the poop and helps regulate excretion. As I mentioned above, they may be able to surgically create a pouch so that, after 2 or 3 surgeries, he has near normal functioning.

I am not advocating for or against surgery. It's a very difficult choice but it's easier if you have all the information in advance of needing to make the decision. since it sounds like your son's situation is not stable that moment could come soon.

I would absolutely be seeking a 2nd opinion as soon as possible. The closest place is UCSF, next closest Cedar Sinai in LA. If you are up for a cross-country trip then Children's Hospital Philadephia (CHOP) has the largest and most prestigious program in the world.

Has exclusive enteral feeding been attempted? If not, I would ask to start this right away - as in today - to see if it helps. The doctors may balk because the main problem is his colon but, unless extensive competent imaging (MRE - magnetic resonance enterography or Abd CT with small bowel follow through conducted at a children's hospital by an experienced pediatric radiologist) has definitely ruled out any inflammation in the small bowel then this approach may help some and should definitely improve his nutritional status.

By now the doctors should have checked his Remicade trough level to see how much remicade is still in his system prior to the next infusion. They should also have done HACA testing to see if he has developed antibodies. If neither of those have been done they should be. The HACA can be done at any time. the trough level should be done immediately prior to the next remicade infusion.

Have they kept the remicade dose the same? Is he at 5 mg/kg? Are they discussing increasing the dose to 10 mg/kg? If not, they should be along with shortening the length of time between infusions IF he is still getting benefit from the infusion. If he is no longer getting benefit then I would want to see them increase the dose and shorten the time to 4 weeks.

This advice would be moderated by the results of trough and HACA testing. If he is positive for the HACA then no more remicade.

IF his trough numbers are high then it might be worth trying the higher dose but I wouldn't be expecting too much to change. If his trough numbers are low then increasing the dose and frequency should be done ASAP.

Keep us posted on how he is doing. Hang in there. Better times are ahead.

 

[Shaggy08]

Patricia -
Thank you so much for your reply to our post regarding our son. It was very helpful to hear an educated parents advice to what to ask our doctors here at Seattle Childrens. Because of you, we are going to get HACA test and trough levels test done. Cant wait to get the results.

I do believe the remicade infusions were 5mg/kg. I will have to double check with my wife, who is heading up his care with the doctors.

Have your heard of cases where surgery was necessary with a toddler with aggressive crohns?

It would be great to know if we are dealing with UC or Crohns but you know as well as I do how hard either are to diagnose. I wish I could have that certain diagnosis before we decide on a colectomy. If I knew it was UC I would have a much easier time with the removal of his colon. I just don't want to make the wrong decision for my son who cant make a decision for himself and make the wrong one. But I cant bare continuing to watch him on the crash course he is on with pain and bleeding when it could possibly be fixed with surgery, which doctors here are pretty much pushing for.

Doctors have used the term "his colon looks like hamburger" and also on a one to ten scale with ten being bad, my son is a "9." With all the pain, as he is growing a quick tolerance to Nebulfien (spell?), and his constant blood loss(had his 5th blood transfusion in the past 3 months and will need another one by next week if steroids don't kick in), we are running out of time of having an option about a colectomy.

I am sorry if I seem a little all over the place with my posts, but like I said, we are scratching left and right for help and educated advice from others who have been in our position.

One thing I did not mention is that our son has been on TPN for just over two months now, not eating any solids or anything but pedialyte other than TPN, which is suppose to give him bowel rest. He has a central line which that is fed into, which he has had for the same amount of time.

Doctors here have said that 95% of people they have treated with crohns and a colectomy have able to have it reattached (not back to the colon obviously) for near normal bowel function.

I will see what happens in the next day or so and give an update once I can wrap my head around what is taking place and hoping for some relief and answers here.

THANK YOU SO MUCH FOR YOUR POST AGAIN AS IT GAVE US ANOTHER DIRECTION TO GO WITH DOCTORS HERE TO MAKE SURE THEY ARE DOING WHAT THEY NEED TO DO. I CANNOT SAY HOW MUCH I APPRECIATE YOU TAKING THE TIME TO GIVE HONEST MOTHERLY ADVICE WHO HAS HAD EXPERIENCE WITH WHAT WE ARE GOING THROUGH.

AARON AND JHAMILLA

 

[Maya142]

Sending hugs - your poor little boy! I hope the doctors have more suggestions for you.
For what it's worth my daughter is on a very high dose of Remicade (15mg/kg) which seems to be helping her more than lower doses (she's been on anything and everything from 3mg/kg-10mg/kg). I'm tagging Clash - her son has also done high-dose Remicade.
Has anyone talked about Humira or adding something like Methotrexate or 6MP?
I hope something changes soon:ghug:

 

[kimmidwife]

Sending hugs too. Patricia gave some really really good and thorough advice. I agree that it never hurts to get another opinion before agreeing to go forward with surgery. Please keep us posted on how your little guy is doing.

Kim

 

[Patricia56]

Aaron -

The truth is that in children that young it is often difficult to know with any certainty whether they have UC or CD. They often seem to present with symptoms typical of UC only to years later develop small bowel complications. IF it is uncertain right now then you must treat based on what you know - which is that your child is suffering and his life is in danger.

I believe it will take about a week to get the HACA and trough results back.

One possible option to discuss is a diversion not a colectomy. A diversion does just that - it temporarily diverts the stool from the small bowel into a bag but the colon is not removed. It is hoped that this will allow the colon to heal and the small bowel can be reattached later. A colectomy removes the colon completely and the child is left with an ostomy. Depending on the state of the rectal tissues they may leave part of the rectal tissues in place to try attaching to the small bowel at a later date. I do not know if your son is a candidate for a diversion but it's worth asking about while you work on the remicade dosing/schedule.

I would be very seriously considering agreeing to diversion surgery right away if they felt it would reduce his blood loss to manageable levels. You do not want to keep doing transfusions if you have a viable alternative.

Since he's been on TPN for a while it may be that diversion is not going to help things. I am assuming he is NPO except for maybe water. But I thought I would mention it just in case.

Please know that removing your son's colon may be the best choice under the circumstances and don't regret making such a choice. Many, many families who have a child with a colectomy have been thrilled with the results and feel they and their child have gotten their lives back - sometimes after years of agony. Often they wish they had made that choice sooner.

Do what you think is best and know that no one who understands the situation will criticize or condemn you for your choices.

Arranging for a second opinion should be facilitated by the Seattle doctors. Good ones are eager for 2nd opinions when they have a child this sick. If necessary, a 2nd opinion can be obtained by record review but I think it's best if it's done in person. If you want to consider UCSF PM me and I will give you the direct contact information for the Ped GI team there.

 

[Shaggy08]

I wish we had the luxury (time and money) to go to UCSF as I have heard it is a great place for sick IBD children, but we don't have either.

We did originally go to Doernbecher's childrens hospital in Portland, OR for a few weeks before we were sent here to Seattle so we have had multiple GI specialist have eyes on him so far. So if we had the luxury of going somewhere else it would be a 3rd opinion.

We are looking at three options right now that I can see:
1. Give another dose of remicade (will discuss potentcy with Dr. prior)
2. Colectomy if remicade does not work.
3. If Xavier has a mutation affecting the Interleukin-10 receptor, then a bone marrow transplant would be needed. This was brought up by a specialist in Pittsburgh that we were able to contact through a friend of a friend.

My wife and I have brought up other medications like Humira, methotrexate, and Sterlara, but the GI specialist say starting a new drug can be dangerous, which we don't 100% believe after reading all these stories on this forum. Maybe it is because he is so little, I am not sure. But I do know we will push for those different medications before the #2 option of a colectomy. Any thoughts on that?

ONE QUESTION: for anyone out there with UC or Crohns that has gone through a colectomy and HAS NOT been able to have the ostomy bag removed, I would like to hear your story of why they were not able to get rid of the bag. My fear is that my son will have this bag all of his life which I am hugely trying to avoid, but as the days continue without positive results, I feel that we are going to have no choice but to have a colectomy to heal my son. Healing is number one priority obviously, but I also want him to have a normal life as possible. (Concerns with having a bag Being teased at school, playing sports, intimacy as an adult, as near normal life as possible).

Thank you all again for reading and replying to our post, this has helped a lot so far. We will do our best to pay it forward in some way when we are able to. Right now our focus is on our son.

~Aaron and Jhamilla with our sick son Xavier

 

[Farmwife]

1................I wish we had the luxury (time and money) to go to UCSF as I have heard it is a great place for sick IBD children, but we don't have either.

We did originally go to Doernbecher's childrens hospital in Portland, OR for a few weeks before we were sent here to Seattle so we have had multiple GI specialist have eyes on him so far. So if we had the luxury of going somewhere else it would be a 3rd opinion.

2........................We are looking at three options right now that I can see:
1. Give another dose of remicade (will discuss potentcy with Dr. prior)
2. Colectomy if remicade does not work.
3. If Xavier has a mutation affecting the Interleukin-10 receptor, then a bone marrow transplant would be needed. This was brought up by a specialist in Pittsburgh that we were able to contact through a friend of a friend.

3.............My wife and I have brought up other medications like Humira, methotrexate, and Sterlara, but the GI specialist say starting a new drug can be dangerous, which we don't 100% believe after reading all these stories on this forum. Maybe it is because he is so little, I am not sure. But I do know we will push for those different medications before the #2 option of a colectomy. Any thoughts on that?

4............................ONE QUESTION: for anyone out there with UC or Crohns that has gone through a colectomy and HAS NOT been able to have the ostomy bag removed, I would like to hear your story of why they were not able to get rid of the bag. My fear is that my son will have this bag all of his life which I am hugely trying to avoid, but as the days continue without positive results, I feel that we are going to have no choice but to have a colectomy to heal my son. Healing is number one priority obviously, but I also want him to have a normal life as possible. (Concerns with having a bag Being teased at school, playing sports, intimacy as an adult, as near normal life as possible).

Thank you all again for reading and replying to our post, this has helped a lot so far. We will do our best to pay it forward in some way when we are able to. Right now our focus is on our son.

~Aaron and Jhamilla with our sick son Xavier

Remember My advice is as a mother only!

1.....................Then a record review as Patria has mentioned in a previous post might be the way to go. That way you just send his records and the review and let you know their finding and recommendations. It's way cheaper than going in person.

2....................The options look reasonable enough.
3............................MAKE your GI explain why he feels that those drugs won't work. He/She works for YOU, not the other way around. If he can't explain it well enough than you have to tell him/her you don't understand or agree and then you both have to decide the next step.

4........................I'm going to PM QueenGothel who's young daughter went through the surgery. Also I'll tag in izzysmom again her young daughter was on the verge of this surgery but they found success with another drug. Their both MIA because of busy life styles.
Next I'll drop a line into the adult support group of people that have gone through the surgery and all the pluses and minuses of doing so.
Their great people and they'll have a lot to offer.

 

[CrohnsChicago]

Hi Shaggy,

I have created a new thread for you that addresses your question below to see if others outside of the Parents section can offer any advice. You can find that thread here: http://www.crohnsforum.com/showthread.php?t=64995

Wishing your son all the best and I hope you can find some answers very soon. :hug:

ONE QUESTION: for anyone out there with UC or Crohns that has gone through a colectomy and HAS NOT been able to have the ostomy bag removed, I would like to hear your story of why they were not able to get rid of the bag. My fear is that my son will have this bag all of his life which I am hugely trying to avoid, but as the days continue without positive results, I feel that we are going to have no choice but to have a colectomy to heal my son. Healing is number one priority obviously, but I also want him to have a normal life as possible. (Concerns with having a bag Being teased at school, playing sports, intimacy as an adult, as near normal life as possible).

Thank you all again for reading and replying to our post, this has helped a lot so far. We will do our best to pay it forward in some way when we are able to. Right now our focus is on our son.

~Aaron and Jhamilla with our sick son Xavier

 

[Farmwife]

Thanks a bunch!

 

[Malgrave]

Oh, I am so sorry to hear what your little son is going through! My son was diagnosed with UC at the age of 26 months, symptoms started at the age of 19 months, Crohn's diagnosis at the age of 36 months. Some sort of primary immune deficiency suspected, now MAP infection verified, probably due to immune deficiency he is not able to handle mycobacteria...

I would recommend that also in your son's case, the primary immune deficiencies are checked, take a look for example at this thread:

http://www.crohnsforum.com/showthread.php?t=43355

 

[Brian'sMom]

My son recently had an ileostomy because his large bowel was really messed up. They did a loop ileostomy and his large bowel is still there connected but being diverted by the bag. Our GI at Mayo in Rochester said very often when things are diverted "upstream" things "downstream" heal. We are waiting to see. I also was worried about the bag as My son is 14. So I worried about dating, sports, friends, etc. So far only good has happened. My son is feeling great and eating. My sister told me, "Don't worry about what the future holds because when it gets here... things will most likely be different.. so trying to reason it out now is just frustrating. Just worry about today". Our GI didn't want to remove anything just yet because of my son's young age. He wants to wait and see if things heal and let science catch up over the next 4 years. By the way... my son decided to not tell anyone. So far no one can tell anything. He's had sleep overs.. gone swimming... plays sports... rides his bike... You can't tell its there at all. He says he "Loves it".

 

[Malgrave]

Brian's mom: please be careful that his ileostomy does't cause diversion colitis. This happened to my son and now we are in trouble ;-(. Did you get instructions for example to flush the colon with electrolyte solution every day? We didn't get any instructions and after a year he started to bleed.

 

[Brian'sMom]

Brian's mom: please be careful that his ileostomy does't cause diversion colitis. This happened to my son and now we are in trouble ;-(. Did you get instructions for example to flush the colon with electrolyte solution every day? We didn't get any instructions and after a year he started to bleed.

We didn't get any instructions like that. But how would I flush the 'colon'? I can ask but honestly I hope I don't have to add that to the new routine. (I will tho if necessary ) Is it thru the little 2nd opening?

 

[Malgrave]

Please check also with your GI.
My son's ileostomy was installed because of an accidental perforation during the colonoscopy. The doctors told us that now the colon can rest and you can keep the temporary ileostomy for years. How wrong they were, he started to bleed exactly 12 months after. The doctors didn't advice us to flush the colon. Then we changed the hospital and his new GI was a bit shocked that we hadn't flushed it at all. They advised us to flush it with electrolyte solution 50 ml, at least once per day. The solution goes to large bowel with a catheter and a syringe. In fact it's very easy and takes only couple of minutes. The other option would be to flush it with a rice based solution but we are not there yet... please send me a PM if you want to hear more details.

 

[QueenGothel]

Hi there sorry I am soo late! Again!

My DD had a colectomy and prior had uncontrollable UC. Being that the doctors are not sure of the Dx being correct I would personally do all I could to avoid colectomy. Though many call the colectomy a "cure" it is most definately not a "cure" even with a J-Pouch there is some morbidity involved. The 95% have near nornal bowel function is total BS! Having incontience for two years and going poo 10-12 times a day is not normal. It really is annoying when doctor spew this crap. Granted my kid is a lot better now, than she was but we did the J-Pouch and she endured 6 more surgeries thereafter. She is a permanent ostomate now and is living a much better life than she had with her jpouch. The doctors really like to shovel that curative crap and it is not. You cannot cut out an organ and cure it. Also 20% are re-dx with CD as well. I would recommend joining a FB group online I run for Parents of Kids with IBD, Ostomies. We do have a lot of parents with really little kids whom have had surgery. Do not get me wrong as I am happier than I was but I am full of regret that I didnt seek a second opinion sooner at one of the larger hospitals listed previously by my little penguin. Izzis mom found relief with Tacroilimus which is a huge gun, but regardless her kiddo still has her colon now.

The luxury factor of not being able to get a good opinion. Do not go there, you will regret it forever. If you do a transfer of care when hospitalized and go to a better hospital most insurance companies do cover the costs. Then if they do not you still left no stone unturned. So the guilt will not destroy you later on. Trust me on this one. If you tell your doctors you want you kid trasferred to xxxx for a second opinion and be very insistent they will do it. Regardless of going from a tertiary hospital. I have never paid for the cost and have done this twice!

I would also be certain to get the prometheus SGI testing done prior to going to the OR. It takes two weeks but regardless might provide you with good information about Dx. Positive pANCA scores are typical for UC and extremely high pANCA scores are associated with pouchitis which would make me avoid a jpouch being made.

There are a few different factors about the jpouch that always need to be made.

Being on predisone and biologics I would not get a jpouch yet. I would do only a colectomy with and end ileostomy and wait and see what happens. Having such a little one most countries DO NOT do jpouches on little ones most wait until 8 years or older. Only in the US do they jump to jpouch right away!

Having a great surgeon whom has done a ton of these successfully is also very important. You want the person doing the colectomy usually to be the same person whom does all the (jpouch, takedown, IRA etc) surgeries.... Too many cooks in the kitchen rule.

Beyond that please join this group. There are a lot of moms with little one there. It is a great resource just like this forum was for me prior to surgery. After surgery we kinda fell into limbo but I did create the parents of kids with a jpouch and admin the ostomies and IBD groups and now there are a lot of parents to lean on.

I hope this s helpful!

Best of luck!

https://www.facebook.com/groups/361719397204983/

If you join I will direct you to the other sister groups.

 

[izzi'smom]

I am late to the party as well. DD was diagnosed just after turning four and was faced with a similar outlook-became steroid resistant, 5 ASA, Remi, Humira, EN via NG, inpatient stays-nothing seemed to help. We scheduled a subtotal colectomy and put her on tacrolimus to prepare her bowel for surgery. Two years later she is still on Tacrolimus (no surgery), and although it is considered a "bridge" therapy, her QOL is 110% and I am reluctant to take her off of it despite the risks. Hoping you can find a solution...it is so tough!