Parents of Young Ones Support Group

[Farmwife]

:rosette2:Any Update and New Parents with young ones?:rosette2:


Update Time for grace,
We had to switch my dd to Remicade. The Humira still wasn't enough to get her in remission.

She has had 1 round of Remicade and I've seen some positives already.:dance:
I pray this is a good sign of things to come.:hug:

She's also is back onto food (minus milk) and doing wonderfully.:dusty:
I worked with her Allergist on how to best reintroduce the food groups.
We will find out soon if she can gain weight without using her formula.:kiss:

 

[my little penguin]

That's great FW .
DS can gain without formula but all the studies show biologics tend to work longer if the kiddo has at least some formula going in so we kept him on it until he is done grow just at a lower amount.

 

[Farmwife]

Yes, she will stay on 2 boxes a day but we wanted to see if she could maintain/gain without formula.

MLP,
do you know (have a study) how much EN is suggested daily to help????

 

[hezekiahsmom]

Hi mommies and daddies! Just thought i would update you all on my son Hezekiah. He is now almost 6 months and doing well. He has been out of the hospital since August 4th!! Very exciting He was taken off of his lovenox shots today for his blood clots in his legs. He was on them for 3 months. He now is only on prednisone, omeperazole, and gas drops daily. Since he is turning 6 months i wanted to ask his doctor about feeding him solids. When i asked last month when they thought he could start they said they do not know and do not think its a great idea right now. So im calling tomorrow to ask once again. What do you all think is best to feed him? What should i stay away from that triggers Crohn's more? I know i need to do tons of research on foods and what to keep him away from.

 

[my little penguin]

Honestly solids at his age ( before age 1 ) are just for practice not nutrition.
My kiddo didn't start solids till almost 8 months due to tummy issues which we didn't know he had crohn's till age 7. I would ask the Gi first and try to keep things stable.

 

[my little penguin]

The value of enteral nutrition in improving the durability of response to biological agents has also been examined. A prospective clinical trial comparing the efficacy of maintaining remission with infliximab alone versus enteral nutrition with infliximab did not find any additional benefit from supplementary enteral feeding. Yamamoto et al. [85] prospectively recruited 56 patients who had received clinical remission with infliximab into two groups for maintenance therapy. One group comprising 32 patients received enteral nutrition at night in addition to 5 mg/kg infliximab every 8 weeks. The other group received only 5 mg/kg infliximab every eight weeks. There were no significant differences in the maintenance of clinical remission between the two groups.

However, a subsequent retrospective multicentre study also conducted in Japan [88] appeared to favour the use of elemental nutrition with infliximab in patients for maintenance of remission after induction with infliximab. Maintenance of remission at one year was examined in adult patients from seven centres who had gone into remission following infliximab therapy and were on infliximab maintenance therapy. They found a significantly higher remission rate in the group receiving infliximab with enteral nutrition as compared to the group of patients that did not receive enteral nutrition.

There are no paediatric studies on this aspect of enteral nutrition. Further studies are required to clarify the role of enteral nutrition in conjunction with other agents.

http://www.hindawi.com/journals/grp/2013/482108/

Just for you farmwife

 

[Pilgrim]

If you could possibly keep him on formula it might be keep the disease at bay for awhile.

Poor Mom! I don't believe you had to go so many weeks with your guy in hospital. That is tough stuff. I bet you are loving having him at home during this gorgeous time of the year.

 

[Farmwife]

Hi mommies and daddies! Just thought i would update you all on my son Hezekiah. He is now almost 6 months and doing well. He has been out of the hospital since August 4th!! Very exciting He was taken off of his lovenox shots today for his blood clots in his legs. He was on them for 3 months. He now is only on prednisone, omeperazole, and gas drops daily. Since he is turning 6 months i wanted to ask his doctor about feeding him solids. When i asked last month when they thought he could start they said they do not know and do not think its a great idea right now. So im calling tomorrow to ask once again. What do you all think is best to feed him? What should i stay away from that triggers Crohn's more? I know i need to do tons of research on foods and what to keep him away from.

:ybiggrin: I'm so happy he's doing better. :dusty:

As for the food I'm not sure at his age and IBD what foods would be the best.
I agree that the formula (EEN) would help keep is inflammation down and maybe get him off the pred sooner than later. This is done with older kids and adults now.

 

[hezekiahsmom]

Honestly solids at his age ( before age 1 ) are just for practice not nutrition.
My kiddo didn't start solids till almost 8 months due to tummy issues which we didn't know he had crohn's till age 7. I would ask the Gi first and try to keep things stable.

Okay thank you. I called today and they said he can try some solids that are in the Neocate family. I guess they are pretty expensive and he said he would send me a few samples to try and see where it goes from there:

 

[hezekiahsmom]

If you could possibly keep him on formula it might be keep the disease at bay for awhile.

Poor Mom! I don't believe you had to go so many weeks with your guy in hospital. That is tough stuff. I bet you are loving having him at home during this gorgeous time of the year.

Oh yes we are loving it! We didn't get much of a summer from being in the hospital but he has gotten to enjoy being outside. He is so much happier at home and able to do things. He can roll and almost sit by himself. So he isn't too far behind.

 

[hezekiahsmom]

:ybiggrin: I'm so happy he's doing better. :dusty:

As for the food I'm not sure at his age and IBD what foods would be the best.
I agree that the formula (EEN) would help keep is inflammation down and maybe get him off the pred sooner than later. This is done with older kids and adults now.

The only issue is that his formula is $52-57 a can and he uses a can a day. I am able to get wic but they only give 10 cans a month. So we are about 20 short a month. Which is VERY hard on us financially. Our insurance hasn't responded yet to cover his formula and we sent the request 2 months ago. My doctor is trying to get the Children's Miracle Network to help.

 

[Farmwife]

Understand completely!
have you heard of the Oley foundation?
http://www.oley.org/join.html
Its a good website that offers advice and help to families like ours.

have you tried to order straight from the company?
You can go on their web page.
They usual give a discount for ordering more.

 

[my little penguin]

Also if he has crohn's most states will qualify a child for medical assistance regardless of income with a crohn's dx. This can act as a secondary insurance .
Ask that the doc submit the prescription order through the durable medical equipment company covered through your insurance.
Most will not cover prescription formula ( neocate) but will cover infusion supplies ( aka formula ) at x% .
Ours is cover this way through the Dme .

Given his age wic should cover it all -not sure why they aren't ....,
Maybe call your case worker
Good luck

 

[hezekiahsmom]

Also if he has crohn's most states will qualify a child for medical assistance regardless of income with a crohn's dx. This can act as a secondary insurance .
Ask that the doc submit the prescription order through the durable medical equipment company covered through your insurance.
Most will not cover prescription formula ( neocate) but will cover infusion supplies ( aka formula ) at x% .
Ours is cover this way through the Dme .

Given his age wic should cover it all -not sure why they aren't ....,
Maybe call your case worker
Good luck

His GI doctor sent a request and letters and all of his medical issues and we havent heard back from our insurance (BCBS) in 2 months and I called last week and asked if we can submit a request to his State medical insurance and the nurse said no they do not cover it so there's no point. WIC unfortunately will only cover 10 cans of formula a month and he goes through almost 30. Next month they only start giving us 8 cans because he is supposed to start eating food but obviously will only be on the Neocate food the doctor gave us. I don't know what to do. We have had such bad times with all of the doctor's while he was in the hospital and I want to switch him to someone closer and better but i'm not sure how to do that and what do I do in the meantime while he's tappering off his steroids and they want another scope done. I feel like if i switch he will end up back in the hospital

 

[hezekiahsmom]

Well we go in for another colonoscopy and endoscopy with biopsies Monday Hezekiah is almost tapered off of his Prednisone. This will be his third one. It scares me knowing the past two times he has had breathing complications while put to sleep for these. The first time they had to end early from it. We found out today he is being studied by the University of Wisconsin. He has had a cough for almost two months now and they have cancelled it once already. Today they decided to go ahead with it on Monday still because he needs it done. I am really worried about whats going to happen next after he is tapered off completely. I do not want him to have to end back up in the hospital. Prayers are needed please. I can update you all Monday afterwards if you would like or you can follow his page on Facebook it is called Hezekiah's Gift.

 

[Pilgrim]

Prayers for baby Hezekiah and for the medical team in place on Monday and for a very good scope result as well.

 

[Farmwife]

I'll be praying for your dear boy.
My Grace has asthma and everyone is always very careful about sedation.
I pray it goes smoothly.

How is his IBD symptoms doing?

 

[hezekiahsmom]

Great! He honestly has been very good being on the steroid. In the beginning when we were tapering he would have a few bad days in a row for a good month and now he is totally fine. He hasn't puked or had watery bm's for quite some time. The only horrible thing I deal with daily is his one bm he has a day and it is horrible. I honestly feel like a lab rat whenever we go in because they just keep asking me question after question and don't really do much other than that and I mean all questions lol. It's okay though as long as everything is going well and have been with their help. He is now up to a little over 18lbs and they are happy he is gaining weight good.

 

[Pilgrim]

What happens with his bm? I only ask because I remember my daughter as a baby, and she would have a bm and honestly I couldn't believe the smell. None of the other kids were like that. At the time I thought it was just a fluke. But now I am sure it was Crohn's creeping in.

Also I only noticed these things after she had a Rotovirus vaccination as a baby. I don't really know if there is a connection but I always wondered.

It's wonderful he is gaining weight.

 

[hezekiahsmom]

His bm's are black and range from tary to watery to in between that and he only has one a day and if he doesn't he's gasy from the prednisone so we have to give him gas drops and if that doesn't work we have a few more things we try from the doctor. The smell is seriously horrible. It honestly has made me puke. I used to have to cover my face and some days still have to but not as much anymore. Nobody around will change a poopy diaper of his other than myself. His GI tested it to see if it was Melena and he never told me but looking at his "current problems list" it mentions Melena.

 

[Farmwife]

Summer updates

I see we have a few new parents of young ones on here. (7'ish and under). :hug:
Please feel free to introduce yourself and child.
We're here to help.

My Grace is chugging along. She's still not in total remission but it's better all the way around.
We're still dealing with her fatigue issues with her.
Which makes it interesting when she's ornery ( shocking I know).
I never know which to blame it on.

 

[Pilgrim]

That's funny FW.

I know when H gets on the wrong side of exhausted her voice gets this pitch to it. It's really edgy, but she still tries to be cheerful. If she starts to scream at a sibling I know she's feeling awful. Best indicator.

I thought we were in remission but not so sure anymore. Trying to get the most out of summer before Crohn's comes to roost again.

 

[Farmwife]

I thought we were in remission but not so sure anymore. Trying to get the most out of summer before Crohn's comes to roost again.

I don't think we ever get rid of that feeling about crohn's coming to roost.

now instead of thinking about the whole summer I think about month by month
and even week by week.
Still I'm thankful for even day by day that she feels well and happy!:hug:

 

[LWade10]

Hello,
I am new to the group. I am the mom of a very spirited 6 year old who has lost her spark. She has been having constipation, headaches, ear aches, belly pain, joint pain for months along with a constant low grade fever for 3 months (every day). We have been to half a dozen specialists, and they did more blood work and she tested positive for Crohn's disease. We are now waiting to see a GI specialist to confirm the diagnosis. There is a small chance it was a false positive but the more I am reading about the disease and her other lab work it sure is looking like she has it. I am lost, scared, mad, but also relieved we might finally have an answer. I am so overwhelmed with information from the internet and was looking to find other parents who have been in my shoes and might be able to lend some advice/support.

 

[Farmwife]

Welcome and lots and lots of hugs.

It's heart breaking when they lose the spark.
Yes, a lot of those symptoms sound familiar.
A lot of young ones tend towards constipation instead of the diarrhea.

I would assume the GI is going to suggest doing scopes as that's the only way to get a proper diagnosis.

Have you been able to keep a symptom journal and or food journal?
I know when we started with our first GI he asked us to do both.
They were helpful to see if there was a trend we weren't seeing.

Also with the joint pain seeing a pediatric Rheumatologist might be helpful.
My dearest and spirited 6 year old also has juvenile arthritis.

How is she doing on weight and growth?
Some kids are delayed in these areas but mine never was.

 

[ic7997]

Hello, I do not know where to start. My son is 18 months old and is undiagnosed. started with mucousy diarrhea last october then bloody loose stools and bloating, tummy pains, the tummy pains went away but he still has bloody stools. He normally passes stool once a days, and its either formed or mushy but not runny. He had a upper and lower GI last week, and they had to stop since he had inflammation in his transverse colon and it began to bleed a bit. hes had two calprotectin tests and both 1600s. he is scheduled to have an MRE next week to see how inflammed the colon is where doctor couldnt see. He has a huge appetite, full of energy and where he should be in growth. But everything is pointing to crohns. My thing is I prefer not to "drug" him and look at a more non-conventional approach, like diet, holistic measures. does anyone have any advice. there is not much study of effects of drugs in toddlers, especially long term. of course doctors never agree with not giving drugs since thats the way they are taught. I actually eliminated all dairy since a month ago and hes seems better but the bloody stools are still there, not alot but specks. and hes also anemic, hemoglobin is at 9.8. I would appreciate any info since Ive never even heard of this disease and my other two children have been always healthy. Thank you

 

[Farmwife]

Hi and welcome. Sorry you had to find your way here.
My girl was dx at 3 but suffered long before that.
We tried holistic approach and paid a lot for it but it didn't help. Tried diet but to no avail for us.

Have you got the biopsy results back yet? They should hopefully be able to pin point towards a dx.

The thing with ibd in young ones is they automatically get put in the serve category.
We parents might hate it but the chances of problems ( surgeries, growth...) are a lot higher.
These drugs have given my daughter a chance at a childhood not filled with pain and problems.
But still each parent has to do what's best for their kiddo.

I'll tag on a few people that can help

Optimistic , they do the diet approach.
Crohnsinct, is our diet guru
Mlp, is the resident brain.
Maya142 knows more then me.
pilgrim has a young one also

Please ask as many questions as you like. We're all here for you and each other!

 

[ic7997]

thank you, the biopsys they collected were not useful/did not show anything but then again, The doctor stopped where the inflammation/bleeding started...so thats the area that would of probably told us better results.

the doctor told me last week to go ahead and start him on "pentasa" but we havent. Ive read so many side effect so Im so scared to have my baby be a "guinea pig". What was the first drug your daughter took? Just kills me to think he will have to take "pills" forever...Ive been taking this very hard, even though its not "official" yet, just what Ive seen/heard so far.

I appreciate the reply and the tags....

 

[Maya142]

Hi and welcome! I have a much older daughter, diagnosed at 16, but I can empathize. When my girls were put on biologics, I agonized and worried for ages about the side effects and risks. At some point, the disease became scarier than the medications, and my girls were so sick that we were just praying the meds would work. They did and I got my happy kids back.

My older daughter (who has Ankylosing Spondylitis) went from being in a wheelchair to a happy normal teenager. She played soccer and went to school and is in now college and is doing great!

My younger one (who has AS and Crohn's) has had a harder time and is in a work in progress. She's much better than she was though and I don't even like to think where she'd be without biologics. She had bloody stools and diarrhea too but is now in remission. Within 8 months, her scopes looked beautiful - all the ulcers in her colon were completely gone!

This is a good presentation about the risks and benefits of various medications for IBD:
http://programs.rmei.com/CCFA139VL/

There are a couple parents on here whose kids are able to control their diseases with ONLY diet, but it is pretty rare. Especially in very young kids who have "Very Early Onset IBD" - diagnosed under age 5 - which tends to be very aggressive and hard to control anyway.

I will tag Optimistic since her son has been able to control his Crohn's with diet.

Pentasa is a very mild medication and is not usually used for Crohn's by itself. Some GI's say it's like taking aspirin for a brain tumor - doesn't do a whole lot.

 

[ic7997]

Thank you Maya142 for that Link, I started watching it but I will watch it all later with my husband, as he too is worried.

I am just confused if I should wait to start pentasa since my baby is acting normal, eating alot, lots of energy, and does not seem to be in pain. Only symptom that is still not gone is the obvious inflammation the doctor saw in the colonoscopy last week and blood in stool (visual and occult).

Doctor also said I could incorporate some antibiotic called metronidazole? So I feel little by little this list of Rx's is growing.

Im glad your daughter grew up to be doing good. That is another worry I have, I wanted my son to play sports, just like my 10 yr old daughter plays soccer but I feel so sad to think this disease is going to prevent him from being "normal".

As you can tell, ive been somewhat depressed over this.

 

[Optimistic]

Hi there. Welcome. I am so sorry to hear about your baby. I know your heart is breaking.

My son has been treated with Specific Carbohydrate Diet and about 30% of calories from formula (called EN) for about 1.5 years. He became sick very suddenly. We hoped it was an infection but after two weeks of being violently ill and losing 20 pounds, it was clear this was something more. Because his case was not exactly typical, originally drs suspected he could have Auto Immune Enteropathy which is very rare for a teen. After more testing including genetics, Crohn's is the most likely culprit here (although the Children's Hospital in Cincinnati still won't say that definitively. Boston is sure so there you have it).

I wont bore you with the whole story but I'm not really sure what put him into remission. IV and oral steroids were magic for him. He went from not able to walk to the bathroom to shooting baskets in a few days. When he tried to wean off steroids the symptoms started to come back so he used EEN first and the Specific Carbohyrdate Diet/EN combo to try to ease his transition off.

I get the concern about meds. I had them too. I spent hours every night on internet reading studies, and looking for other options that werent written by a kook. But when i saw him go from ICU to doing great to slipping backwards, there was no way I was going to let him go back to that ugly place. None. We made the decision to start Remicade and then we had a surprise. During test to start Remicade his labs were good, his FCP normal, and he had no symptoms. Drs wanted to wait a few months so we kept up the SCD with about 30% of calories from different formulas. A few months after that a scope was clean and biopsies showed microscopic inflammation in just a few areas. We stayed the course until the next scope showed all good. I hate to type that in case I am jinxing him! He is monitored with labs, fcp, scopes, etc.

I really don't know how common it is for the steroid then EEN then SCD with EN approach to work this well. The drs in our practice do recommend it to patients and are in midst of some studies that are showing some good results with a number of patients. They also have a massive Remicade infusion center. When he goes in for checkups it is common for another dr to come in and say "oh hi, just wanted to see him for myself" and "can't believe you went from where you were to here." Not everyone on this forum is a fan of diet and each time I post this i get some replies and messages telling me it diets don't work.

You having a baby adds so much more complexity. I would get second and third opinion, ASAP, with people who have experience with toddlers and IBD. Boston's Children's will do a review remotely. Go to their website and get that started.

I'm happy to answer any questions. Please keep us updated. We are pulling for him and supporting you. I know how hard the first few months are. It gets better. I promise.

EDIT: He will be normal. I think many of the people who are doing well with Crohn's aren't on this forum bc they are out living their lives. They arent thinkng about it. My son plays sports. I'm off to pick him up now!