Baby with Crohn's?

[scared_mom]

I've been searchig for information for my baby and i found this forum, I'm hoping someone here can help me! It's a little long but please read!

I have twins, born full term, perfectly healthy on Feb. 22, 08, 13 1/2 months old now. From day 1, one of them had constipation and fussiness issues, the other one has never experienced any kind of problems at all. I exclusively breastfed both girls, and I went on the elimination diet to see what was bothering her, when they were only a few months old. We determined it was eggs and milk, so I went egg and milk (or lactose at the time) free, and that seemed to take care of her issues for the most part, for a little while, but they started up again not long after that.

In October, when they were just over 7 months old, I brought her in because of a lot of vomiting and diarrhea, and she was in a lot of pain. So we find out she’s not allergic to lactose, she’s allergic to casein. So I started the casein free diet. When she was 9 months old we brought her to the ER because she was screaming and pooping blood. They determined part of her intestine was folded, intussusception, she wound up having surgery to fix it. She was in the hospital for a week, over thanksgiving.

Since then, I found out I was pregnant in December and I was risking the health of baby by being on that kind of diet, while breastfeeding and pregnant, when I’m underweight as it is, so I weaned the girls, and put my allergic daughter on ProSobee, which she has done very well on. Now, at 13 months old, she has never had a bite of solid food. I’ve tried, but she refuses. She’s exclusively on formula, but she is by no means underweight, she’s very chunky. To this day, though, she has never had a formed poop, she gets constipated quite often, and sometimes has a lot of trouble or pain pooping. I do notice blood in her poop on occasion, but I’ve brought it up with the ped and was assured it was strain from pushing.

Well last Thursday she was running a fever that day and the day before, but we brought her to the hospital because she was screaming in pain and curled up holding her tummy, and pooping out A LOT of blood. They did the Upper GI series, blood and stool samples, and did a colonoscopy, they did determine that there is quite a bit of damage to her colon, and the doc mentioned Crohn’s, but he’d never seen it in someone so young. We are transferring to another hospital today, with a specialized pediatric gastroenterologist, but these doctors told me she may need surgery because her colons are so damaged.

I’m really scared, and I was just looking for experiences. Could she have Crohn’s? It does not run in my family, at least not that I know of. Does anybody have a child or know someone that was diagnosed so young? If one twin has it, does that make it more likely that the other will? These are all questions that I’m going to ask the doctor when we see him, but if anyone has any information, it would be appreciated!

 

[drew_wymore]

Hey Scared Mom, I can see why you're scared eek. I can't comment on whether it can happen so young but I don't see why it couldn't. All the literature I've read says it can happen at any age.

As far as the familial trait for the other twin. I've read there is a 20% increase for those who are related but I haven't seen anything specifically with twins.

 

[Guest]

i'm sorry to hear about your baby suffering like this... aw the poor little thing. and it must be so worrying for you! i really hope the docs get to figure out what's happening and get her feeling a lot better very soon.

i looked for ages on Google for 'Baby Crohn's' - there is hardly any reference to such a young baby being diagnosed with Crohn's. it seems that Crohn's develops over the years from birth with some children but not apparent so young as with your baby. having said that, it could may well be that it's possible.. if the doctors are saying it, then there must be reason for their suspicions.

good luck with her, and please let us know how she gets on.

 

[Creepy Lurker]

In the Crohn's disease group eight of 18 monozygotic pairs and one of 26 dizygotic pairs were concordant. The proband concordance rate among monozygotic twins was 6.3% for ulcerative colitis and 58.3% for Crohn's disease. The calculated heritability of liability based on monozygotic pairs was 0.53 and 1.0 respectively. Thus heredity as an aetiological factor is stronger in Crohn's disease than in ulcerative colitis. Monozygotic twins with Crohn's disease were more likely to be smokers than monozygotic twins with ulcerative colitis. Smoking did not explain the discordance of twin pairs with either ulcerative colitis, or Crohn's disease. The combination of identical heredity and similar smoking habit is not sufficient to cause disease.

http://www.citeulike.org/user/vplagnol/article/2714522


If your twins are identical then there is a significantly larger risk of developing the disease than a normal sibling or non-identical twin.

 

[scared_mom]

Thank you all for your replies! It's been a looong day of driving and getting settled in, but tomorrow is our first appointment with the ped gi. That appointment has me so anxious! We aren't positive it is Crohn's, but the doc at the other hospital said he thought it could be...but he isn't a gi. My girls are identical, so far Chan is totally healthy, I just pray it stays that way and she doesn't end up with Crohn's or whatever it is her sister has! I've been looking it up a lot as well, and I couldn't find anything...I read over and over "could show up in a child as young as 7," a whole lot older then my baby! I'm also nervous that the new doc will want to take his own tests and she'll have to go through them all again, they were not a pleasent experience the first time...so hopefully he can use the other hospital's results.

 

[scared_mom]

Out of curiosity...do any of you have allergies associated with Crohn's? Grier is allergic to casein (milk protein) and egg, and I'm wondering if it's connected to her issues now.

 

[D Bergy]

Some of the newer research suggests that a vitamin D deficiency in children may contribute to autoimmune diseases. While this has not been proven beyond a doubt, there is some compelling evidence based on when the child is born and the likelihood of developing an autoimmune disease. It may be a good idea to have some blood work done to check the D levels of the girls. Also have B-12 and Iron checked as these are common deficiencies with Crohn's. The FDA is likely going to raise the level of vitamin D intake soon so what is considered normal now, will likely be considered low in the future.

It would also be a good idea to have your own checked if you are having more children. If your D level is good, it may help the baby, especially if you breast feed.

One thing I have noticed myself is the lack of children outside these days. I used to have to be careful driving around because of all the kids outside and driving bikes etc. Now in the middle of Summer, you only see a few around. Lack of sunlight for all of the house bound kids, and then when they do go outside they are lathered with sunscreen so they get little benefit from what little sunlight they are exposed to. Even though there is no scientific evidence supporting the use of sunscreen for the prevention of Skin Cancer that I am aware of.

I have heard of Crohn's in young children, but usually not that young. The doctors will have determine what the diagnosis should be.

Good Luck

Dan

 

[bradraz]

I have no history of chrones in my family. Well atleast you found out what is causing your daughter all the pain, so they will hopefully be able to fix it. Good luck with everything.

 

[mommy1st]

I actually met someone at a CCFA walk and her son was diagnosed officially at nine months, but that was the only person who I knew who had a child that young with Crohns. Good Luck, I can't imagine what you are going through. I hope you get some answers soon and that she feels better soon. Keep us posted.

 

[scared_mom]

:frown: Thank you all for your support, and I'm sorry it took me so long to get back. It's been a busy few days! We've been at childrens for 2 days now, lots of testing, saw actually three different docs just to get their opinions...it's Crohn's :yfrown: I was really, truly hoping it was not. Honestly this disease really scares me, and just reading about what you all go through, it saddens me and scares me to no end that my daughter will have to.

The hospital we're at is 3 hours away from my home, and we're going to be here for awhile, so we're staying in the Ronald McDonald house. Grier is going to be having surgery on Monday morning, and their giving her a temporary colostomy to give her time to heal. Has anybody had one of those? Grier is in so much pain, I'm trying to just be thankful that we know what she has so we can help her...I'm just having a really hard time accepting that she has a lifelong incurable disease. Did anybody have Crohns as a child? :frown:

Dan I completely agree that kids need to get out more! Personally, I am pregnant right now with my seventh child, my kids are out pretty much all day long in the summer! There are going to have to be a few changes this year, as my 3 year old had a bad boubt of pneumonia that triggered asthma, which has been giving her a lot of problems, I hope we can still play outside a decent amount, it's hard having them cooped up inside all winter, but it gets into the -40's here so not much choice there lol. Children with Crohn's...does it affect their ability to play outside and be active? If we have a bathroom real close...

Aly

 

[butt-eze]

I wasn't diagnosed until my 20s. But I do have two friends that had their colons removed as adults. Both had temporary colostomies and later had the "take down" surgery.

If the colon is truly that badly infected it will provide a lot of relief for Grier. Because she is so young I would recommend really researching before deciding to move on from the colostomy to the take down surgery (connecting the small intestine to the anus).

I realize it is a lot to think about and decide but the second step of the surgery is not a guarantee that Grier will return to normal. It may be less traumatic for her to get used to the colostomy bag.

People with no colon (j-pouch) have far more bowel movements every day than the average person. As much as 7-20 a day. So, as you can tell this is not easily dealt with either. At least with the colostomy bag your daughter can live life more normally.

I have no place to make these statements as I haven't had either surgery. I just want to put these things out because of the issues my friends have faced with their J-pouch.

The initial shock of discovering you or a loved on has Crohn's is devastating. However, once Grier is feeling better it will be something that you don't think about constantly.

Many of us experience months and years of remission. We are in tune with out body and know when to seek professional help.

Grier will be one of your tougher kids because of what she is going through. She is also too young to remember all of this pain.

Stay strong when she is near you but take a moment of weakness when she is not. A good cry can release a lot of your pent up anger towards the situation.

Grier will do all things that any other kid can do.

 

[scared_mom]

Thank you for your reply, Amy. At the moment, they just want to remove a small portion of her colon, and the colostomy only while her colon is healing. I have read about permanent colostomies though...I met a woman with a 7 year old son with a permanent colostomy (not for crohns, but I don't remember what he had) and he was doing wonderfully with it. I'm so fearful for my daughter that she's going to be teased through school. I homeschool my oldest daughter, my 9 year old, and I've got a few years before it's time to think about that yet, but I think she'll probably be homeschooled. Is that common? For a resection to need a whole removal at some point?

 

[Guest]

so sorry to hear that it is Crohn's and that your baby has to go through surgery. but on the plus side, you now know what it is.. and the colostomy will hopefully bring her so much relief and return to normality regarding many of the issues she's suffered from previously.

i agree with much of what's been said already.. being so young, if she does have the stoma for life, by the time she's aware of her different tummy compared to her peers, she will be completely used to it, and will not remember pre-stoma. as with all childhood conditions, i think the key is to arm them with information, reassurance, and a set answer to say to anyone who inquires.

however, if at some point the surgeons think it is absolutely fine to go ahead with a reversal, then i'd seriously consider it.

getting used to a stoma is purely a learning curve for everyone involved.. once you get the hang of dealing with the appliance & avoiding the known foods which can cause problems, it will be so easy to live with - much easier than coping with pain, constipation, diarrhea etc..

i really would recommend that you join a Crohn's support group in your area, one which does have information specifically for kids and their parents. it may well be that there is a system in place to support children with stomas entering the school system. also, schools themselves are very good these days with regard to kids with special needs or special conditions. i've worked in a school where we had one child with a tracheotomy, 2 wheelchair-bound, many with autistic conditions.. and they are all making good progress in mainstream education, and in socialising with their peers. so you may not have to opt for homeschooling if you don't want to.

good luck! you have a lot to think about, but i'd say just take one step at a time, & get as much support & info as you can.

 

[drew_wymore]

My thoughts and prayers are with your family and especially your little one scared_mom. Crohn's can be very scary for family who have a child with it but the good thing is that it's been caught reasonably earlier and you are doing everything you can.

Children that young are amazing at healing as well. Maybe this hiccup will be the worst it ever gets (not that it's not scary as hell for you) and she'll grow up healthy and happy without too many problems.

 

[ErinDF]

Hey,

I'm so sorry to hear that your child is so sick...and so young! But, remember that kids are pretty resilient, so I'm sure she'll do okay.

I think that what you should get from this site, more then anything else, is that life moves on and you CAN live with Crohns. On this site we have mothers, we have college students, we have professionals, we have athletes, and everything. I myself was diagnosed at 13 and continued to be a competitive swimmer until 22. I'm now a law student, play ultimate frisbee, have gone backpacking in Europe, and have done everything that "normal" people my age have done. I've also had, over the years, everything from shingles (at 15) to a temrporary ileostomy right now and a blood clot (I like to joke that i get all the medical problems of 85 year olds). Its not always easy, but you learn to cope and you also learn to live your life.

I recommend this website alot, but at www.uoaa.org they have a discussion forum for parents of children with ostomies. You may find this helpful. There are also links to lots of websites about ostomy supplies for small children, including fun ostomy covers with cute animals on them and things like that.

Good luck with the surgery! I hope things turn up soon for both you and your baby.

Erin

 

[kello82]

scared mom you and your baby are in my thoughts!
i hope that the surgery goes well for your little one. please let us know when you can ok?
we are all here with any questions you will have

 

[My Butt Hurts]

Good luck with the surgery tomorrow, ScaredMom. Post to let us know how it went when you get a chance. There are a few colostomy threads on the site, reading them might help you with tips for easier management of the bag etc.

 

[teeny5]

My heart goes out to you scared mom. Let us know how everything goes.

((((HUGS))))

 

[scared_mom]

Thank you all for your support with my baby. She is out of surgery and doing well, actually once she woke up she was smiling and happy, she fell back asleep fairly quickly. I will post a longer update when I have more time, I just wanted to thank you all and say she's OK.

 

[ChefShazzy]

*sigh*!
that is good news! keep us posted, we are thinking about you!

 

[kello82]

awh glad to hear that it was successful!
ill bet that smile was worth so much

may things keep goin up from here!

 

[ladyB]

I am so happy to hear everything is going good!!
if a smile could be worth a thousand words??