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HELP!!! Can a 12 Month Old have Crohn's???

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Crohn's Disease
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Posted 3/3/2008 7:11 PM (GMT 0)

I found this forum while searching out of desperation. I'm really hoping I can find some help here. My 12 month old baby seems to have something wrong with him that no one has been able to diagnose. I suspect that it is something GI related and Crohn's may be a good fit. However, I can't find any information to show me that Crohn's can exist in a baby his age. I'm looking for any advice on what I can do to help out my son. I have a pediatrician appointment later this week so I will have this discussion with the doctor, but I'd like to get some information myself because it seems like a mother's concerns are always downplayed by a pediatrician. I'm going to bore you with the novel that is my son's medical history...

He was born at 38 weeks (full term) weighed 6 lbs 9 oz and was declared healthy. Projectile vomitting soon ensued which led to a dairy free diet. This helped with the vomitting, but he was still very fussy and spit up a lot. At two months he was diagosed with GERD (reflux) and was started on Zantac. Painful feedings and colicy behavior continued and the projectile vomitting returned at 3 months. At 4 months, an upper GI series was done and the reflux was severe during the studies, so we then started Prevacid. He seemed to improve and was eating better and with less pain, but he still was miserable anytime we tried to lay him down for a nap or bed. The colic, screaming at night was insane and we did multiple night feedings as if he were a tiny infant. During all of this, his growth was slow but he did grow. Although he was eating a lot more than recommended because he ate every 3-4 hours day and night, while most 5-12 month olds don't feed at night. He's always been sick too. Lots of upper respiratory viruses and a few stomach viruses too. Just after New Years, we took him to the ER because he was vomitted and lethargic. We were shocked to find out he was severely anemic and needed immediate blood transfusions. The diagnosis we got was that he was slightly anemic to begin with and then a virus supressed his bone marrow leading to the severe anemia. Then two weeks after that hospitalization, he's admitted again with bronchiolitis suspected from RSV infection. During all of this time, he is fussy all the time and screams at night. After getting him home and healthy, he is still very fussy and screaming 3-4 hours of every night. He'll go to sleep and then wake 30-60 min later screaming. He'll scream for about 90 minutes and then pass out to sleep for maybe an hour before doing it all over again. Despite the peditrician telling us not to, we're giving him an 8 oz bottle of milk at 1-2 and another one around 5AM. He eats really well with solids. His daycare teacher calls him her piggy and he's the youngest in the room. He usually has 2-4 BMs per day and they aren't watery, but definately aren't formed. And he's on Iron supplements, which make his BMs dark black. Despite all of the eating, he falls just under the 10th percentile line for weight and is 75th percentile for height at 12 months. Despite all of the reflux issues and other health concerns, we've never been referred to a pediatric gastroenterologist. I plan to ask about that later this week, but would appreciate any advice any of you could offer.

I forgot to mention... my father has Crohn's and I seem to have a gluten sensitivity. I don't have the Celiac antibodies based on bloodwork, but I definately have issues when I eat food w/ gluten. My official diagnosis is IBS.

Thanks everyone!

AJ
Posted 3/3/2008 7:16 PM (GMT 0)
I'm sorry to hear that your baby is sick. There are cases of babies getting Inflammatory Bowel Disease, but of course it is rare. I'm wondering if the food at night is bothering his stomach since he doesnt seem to become relaxed with a full tummy. However I am not with him, and if he seems hungry then he's probably hungry. I would ask your pediatrician about seeing a GI because it can't hurt to get a second opinion especially from a specialist.
Posted 3/3/2008 8:53 PM (GMT 0)
Welcome to the board, AJ. I am very sorry to hear about your son, too. I agree, you should ask for a ped. GI. It sounds like you're doing and thinking of everything possible. You mentioned he drinks milk. Could he be lactose intolerant? Something, again, that I'm sure you've thought of.

When my son was around 18 months old he had diarrhea for many, many days. I remember calling the pediatrician after 5 or 6 days to let them know. Since he had no other symptoms and was eating/drinking fine, they told me it was nothing to worry about and they didn't need to know unless it lasted for more than 21 days! By about the 12th or 14th day or so, I called again and got the same answer. As luck would have it, his D stopped on day 20. Now I often think about the whole incident and wonder if it could have been an early indication of CD....

Anyway, please keep us posted! I hope you get some answers and I will keep him in my prayers!
Posted 3/4/2008 4:45 AM (GMT 0)
Goat milk products are much easier to digest. Nestle formula is also easier on the tummy. I've heard that you can even buy breast milk. It's the easiest milk for a baby to digest.

What solid foods are you feeding him? This can also be a culprit, maybe you should try organic products only and no grains for a while. When you introduce the grains, buy organic only and introduce them very very slowly.

Also, health stores sell probiotics for infants. This can really help his tummy and immunity. Start at a very tiny amount. I have my toddler on "Udo's" for infants and his appetite has really increased.

I sure hope your baby feels better soon. Please keep us updated.
Posted 3/4/2008 2:27 PM (GMT 0)
I agree with the above, sounds like maybe lactose intolerance or GERD. I know when I drink milk I get really nauseous, gassy and have diarrhea. I feel like poop. Crohns in a child that young is pretty rare I think. I would maybe see a Ped GI to check for either Celiacs or Crohns. But it sounds like more of GERD or the lactose issue to me. JMHO
Posted 3/4/2008 5:17 PM (GMT 0)
I wanted to say welcome AJ. so sorry you are going through this, but you found a great place. since you mentioned gluten, i wanted to mention that i was diagnosed two years ago with crohns. while all signs of that have disappeared, my pain continued. I was tested for celiac and it showed up negative. I finally went to a naturopath and did his testing which showed a high intolerance for gluten. i have been gluten free for two months and have improved by leaps and bounds. I really feel great. there is a lot of evidence that one can be intorant without celiac. have you kept the baby off gluten?
take care. yp
Posted 3/4/2008 5:22 PM (GMT 0)

BTW, a 12 month old baby usually does not have formed stools. They are still quite soft and it is very common to go more than once a day. It will take at least 2 -3 years for their bowels to come up with a routine.

Posted 3/4/2008 5:27 PM (GMT 0)
just a note, i was diagnosed w/crohns at 15, but my mom says when i was an infant she thinks i had it b/c i had a period of bloody stools and gi problems that just went away.
Posted 3/5/2008 12:03 AM (GMT 0)
My daughter started showing symptoms of IBD at 18 months. It is not really common, but does happen. My daughter had very loose stools about 5-6 times a day with blood and mucuos. That's when we knew something was wrong. I hope that you find the answers you need. I'm here if you have questions.
Posted 3/5/2008 1:12 AM (GMT 0)
Hi AJ I am also new to this site. My oldest son who is 30 this year had a history very similar to your baby. I used to have to call the DR in the middle of the night we often had to bath him and massage him to pass wind his colic was so sever. The Dr sometimes gave him a small amount of Brandy to relax the tension. It was a nightmare period for any mother. I was only 18 and my hubby believed I was doing something wrong. My son has not been diagnosed with CD but he does have IBS. When he was 18 months he was admitted to hospital with a suspected twisted bowel. Surgery was avoided as they used manipulation and heat to correct the problem. My boy has told me as long as he eats regulary and keeps up the fluid he is okay. He was about 26-28 months when he began sleeping through the night. My thoughts are with you it gets better. ask for a GI consult it can not hurt.
Regards Sue
Posted 3/5/2008 1:43 AM (GMT 0)
It would be great if you could get a book titled: Every Child Deserves a Chance by Dr. Leila Denmark in Atlanta Georgia. This should tell you what to do to stop all this for your child. She is the first Dr that diagnosed me without test, hospital - However, she has retired and she is 110 years old!!
Posted 3/5/2008 5:21 AM (GMT 0)
This is a site for parents of children with IBD. Maybe they could be of more help.

http://www.dragonpack.com/ibdsupport/parents/
Posted 3/5/2008 5:03 PM (GMT 0)
Thanks everyone. I truly appreciate all of the responses and concern. I've made a list of a lot of my observations, concerns, and questions and have faxed it to my pediatrician to make sure I get what I need at our appt later this week. We've already done a lot of the things recommended here, but there are still some things I can do. You have a wonderful support group here. Thanks for letting me bump in with my questions.

AJ
Posted 3/5/2008 9:30 PM (GMT 0)
Yes, children can develop Crohn's or colitis as young as 12 months. It is less common, but happens......In fact, diagnosis in children is happening younger and younger...... quite scary! You might try contacting the Information Recsource Center (IRC) at the Crohn's & Colitis Foundation of America (CCFA). 1.888.MY.GUT.PAIN or www.mygutpain.org or just the ccfa.org website. Pediatric research is a priority of CCFA. You might also look for a chapter in your area. You are your child's best advocate so good for you for your continued push to find some answers. The more you learn and document the better you are in taking an active role in his healthcare plan. Good luck to you and I hope you find some answers. Don't be afraid to push for a Ped GI consult.......
Posted 3/6/2008 3:13 AM (GMT 0)
I'm so sad for you and your little one. It is terrible as a mother, to have a sick child and feel completely helpless. I am still quite new to the world of crohn's. This site has helped me tremendously. These folks have so much to offer. I agree with other posts, insist on a referral for a pediatric GI. I can't say for certain that crohn's was the cause but my daughter had many of the same issues as you've described. As a infant a few days old, they determined her allergic to milk. She couldn't tolerate dairy at all until over age 2. She too was very colicy, etc. Too make a long story short, she has always had belly and poo issues. Many symptoms over the years are exactly those of crohn's........if I only new then what I know now?!
I will be thinking of you. Much love and laughter to you!
Posted 3/8/2008 1:59 AM (GMT 0)
I cannot say whether your child has Crohn's or not, but I can say that a child can have Crohn's at a young age.  My son was diagnosed at 6 but I know many kids diagnosed at 2 and 18 months.  It's not normal for a child to be anemic.  Was the albumin low also?  Many pediatricians seem to not catch IBD, and poo-poo the parents concerns.  It sounds like you have gone through a lot and you deserve to go to a pediatric GI to find out what is wrong.  If you must have a referral from your pediatrician for insurance purposes, I would insist on iit 
Posted 3/8/2008 8:34 AM (GMT 0)
honey, you are both in my prayers. there is nothing worse than trying to soothe a crying baby when we know he's been fed, he's dry, he's healthy and just needs to cry...but when your gut tells you something isn't right, then you are probably dead on. trust your instincts. mom knows best. sounds you are doing everything you can. I will keep you both in my thoughts and prayers...please let us know how things work out...we will all be concerned and hoping for the best.
Much love,
Mary
Posted 3/18/2008 6:15 PM (GMT 0)
Hi. i was wondering what has happened since you entered your post? I have a 14 month old who the doctor thinks might have crohn's. His symptoms are very different to your little one's though.
Posted 5/24/2008 3:38 PM (GMT 0)

I would definitely get your baby tested for food allergies ASAP if you haven't yet.  His symptoms sound a lot like my son's, who was allergic to soy (as well as dairy).  My son had all kinds of gi problems, occasional bloody stools, excessive spitting up, not gaining weight well; plus he had congestion, runny nose, wheezing, and just general ill health.  Fortunately, he was diagnosed at 2 months, and he was like a different baby once we changed his diet.  It is a lot easier to get the skin tests done at an allergist's office than to keep trying different foods on your own.  With Celiac being in the family, he should definitely be tested for that as well! I find it is helpful to TELL the pediatrician specifically what you want your child tested for, or what specialist you would like for him to see.  Never assume the doctor knows more than you, and do not let him assume it either.  If he is uncooperative, find a new pediatrician!  It is easy for the physician to see the child as just another patient to see that day, rather than the precious child that he is to you.

I signed up for this forum specifically to respond to your message.  I hope your son gets a diagnosis soon, and gets better. 

Posted 5/24/2008 4:32 PM (GMT 0)
My heart goes out to you. My daughter now thirty was the same at three months of age. She (and I) dealt with projectile vomiting for months between being six weeks to almost six months caused by what they claimed was an undeveloped stomach. I am not saying that it is this but that is what it was for her. Crohn's can be though there are just a few cases of it in children at a very young age. You need to get a pediactric GI that deals in Crohn's at a young age. You may have to search for it but it will be worth it.

As for lactose intolerance being a possibility the symptom for lactose intolerance are: Diarrhea, which is the most common symptom, nausea, abdominal cramps, bloating, and gas. Projectile vomiting is not a system. I am lactose intolarant. Was diagnosed as a child and never dealt with vomiting due to it.

Shoshanna
Posted 4/4/2009 10:44 AM (GMT 0)
Hi. I am new to this forum and found it out of pure desperation for my son.

I am very sorry to hear about your child but if it makes you feel any better, my son was yet another 12 month old baby when he was diagnosed with Crohn's. His symptoms were frequent bloody stools. He was a chubby healthy baby, very smart and inquisitive. After taking him to the local childrens hospital they booked him in for a colonoscopy/endoscopy and then after several tests formally diagnosed hm with CD.

We have tried a myriad of drugs including (natural remedies). We have even had him treated by my chiropractor.

He is now almost 4 years old. He has had: metranidazole, salofalk, imuran (very bad reaction) 2 x 6-week courses of steroids and is now currently on methotryxate. I was hoping someone who has had a similar encounter who can offer some advice as nothing seems to be working for my dear son.

For the record, I was diagnosed with Ulcerative Colitis in 1997 and persisted in finding a cure/relief. I have been in total remission since 2005 due to regular chiropractic adjustments. I haven't had a single flare up since. I am anxious to find something or somehow to treat my son as I want him to start school and lead a normal life.

Thankyou.
Posted 4/4/2009 7:11 PM (GMT 0)
Sorry you two need to be here, and I hope you get some answers.

Welcome to the forums

(Crowd goes wild, cheering, applause)

AJM73 & Shadi S

:)
Posted 4/5/2009 2:45 AM (GMT 0)
My first born was the same way. Projectile should have been her second name. She grew out of it by 6 months or so. And colic,... her picture is beside the word in the dictionary.

Would I be assuming correctly that your child was put on antibiotics at some time throughout his illnesses, or were you on them during your pregnancy? I'm thinking he may have a fungal/yeast overgrowth,perhaps contributing to problems such as leaky gut, or other inflammation of the colon. Could you eliminate all grains and dairy for awhile to see if that helps? I would definitely ask about putting him on probiotics. What is the update on his condition?
Posted 4/5/2009 9:17 AM (GMT 0)
my other son had projectile vomiting and chronic reflux. he didn't leave anything or anyone without leaving his trademark. like your dear child, mine also grew out of it (thank god). re his little crohn's brother, i have starting him on probiotics but i am struggling to get him off the wheat/dairy thing. I will however try (somehow).

yesterday i started him on aloe-vera juice (mixed in with his juice) as i was advised by a naturopath. I have also personally had very good response to "Black Seed Oil" which I used to take when I had my colitis episodes several years ago. It worked absolute wonders. However, although I would love to give it to my 3 year old, the taste is very inhibiting and I don't want him to hate it from this age.
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