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Crohn's Disease Forum » Parents of Kids with IBD » 4 Month Old with Crohn's


07-29-2014, 09:49 PM   #1
hezekiahsmom
 
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Hi im Leslie. I have a now 4 month old baby boy named Hezekiah. He has had Crohn's since birth but was just recently diagnosed. Im new to this and would love any advice and help i can get.

So far we know in his intestines, small duodenum?, and colon. He has ulcerations on his colon. His symptoms were from the beginning puking, pure water diarrhea, losing weight, tired all the time, refused to eat. He has been through so much at this small age. I honestly do not like the gi doctors he has and wanted to research a few in Milwaukee, Wi. His current ones are in Marshfield, Wi. They did two biopsies to finally figure this out. The youngest they have seen a child with this is 18 months. Right now he is on steroids and medicine for GERD. Also metabolic acidosis and renal tubular acidosis. He is also on lovenox shots because he was getting blood clots in his central lines. He is not home yet but we are hoping he will be next week! He has been there since about 2 weeks old and he is 4 months now. I do not know anything about this disease or where to even look. I am very scared for him and would love any advice and sites and info i can get. He will be starting baby food soon and i am not quite sure what he can and cannot have. The GI doctors have really explained anything to us and this is why im looking for one elsewhere.
08-01-2014, 03:10 PM   #2
Farmwife
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I'm so sorry to hear all he's been through.
Theirs a few top Ibd centers in the country. Boston and Cincinnati have outstanding Ibd programs.
I'll tag in mlp, Tesscorm, Patricia56 and Maya142.
We went to the mayo clinic in Minnesota. It was amazing! We choose mayo because it's known for dealing with medically complicated kids.

Given your sons age I would want to get the best I could.
As for food that's so individual. My Grace survive for the most part on a special formula.

I'm curious why their pushing food for such a young baby?
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine

Last edited by Farmwife; 08-01-2014 at 04:04 PM.
08-01-2014, 04:45 PM   #3
Maya142
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Hi and welcome!

I'm so sorry to hear what your baby has been through. The other IBD center that is mentioned a lot is CHOP (Children's Hospital of Philadelphia) but that's quite far from you. It is definitely very important to have a GI you like and trust, and one that has experience with very young children with IBD. I wonder why they are not pushing EEN at his age? I would imagine that it wouldn't be so hard with an infant (especially if he already has an NG tube).

I don't really have much advice since my daughter was much older when she was diagnosed, but I hope things get better soon!
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diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
08-01-2014, 06:04 PM   #4
7vNH
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Not everyone will agree with me on this, but I'll throw it out there....

If your baby was delivered via C section and/or the mother got a bunch of antibiotics pre-delivery and/or the baby got a bunch of antibiotics, then there's a chance that there is disbiosis (basically a fouled-up mix of bacterial species) in the baby's gut. It wouldn't be out of the question for me, if I were in your position, to re-colonize.
08-01-2014, 06:18 PM   #5
CrohnsKidMom
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Welcome to the forum, but so sorry to hear about your little guy. My son was dx'd last yr at age 8, so I'm not expert on Crohn's in infants. But like previously mentioned, I would think they would want to try EEN (formula) with a NG tube for your baby, but maybe there's a reason if they haven't recommended it. If you are questioning the dx, there is no harm in getting a 2nd opinion. This must be so tough on all of you. I hope you get the care you need and your little guy starts feeling better really soon. This forum is a great place to come for information and support, so visit often!
08-01-2014, 06:34 PM   #6
my little penguin
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4 month old with Ibd
Screams second opinon
I would call Cincinatti children's since they would be closer.
They might be able to do a patient transfer .

Did your current Gi recommend starting solid food???
Especially in a 4 month old who has not left the hospital in a long long time .....
Eating at 4 months is just for practice not for nutrition .
Is your lo getting nutrition by breast milk , TPN or formula ??
If so how broken down is the formula ( elemental, semi elemental or polymeric)?
Which is essentially EEN ....
The type of formula may be an issue .
If he is TPN then it would be a really long time before they could move to food ..

I have taken my DS to Cincinnati twice for a second opinon .
Chop is also good .
Calling is easy and they will help walk you through the process .
It might be faster since he is so young and still inpatient .

Big hugs to you .
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08-01-2014, 06:46 PM   #7
my little penguin
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Oh and it's not your fault your little one has Ibd .
You are a very good mom and getting the care that is needed .
Ignore anyone who thinks otherwise .
08-01-2014, 08:21 PM   #8
AZMOM
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I agree. Given his age, I would want him seen at Cinncy or CHOP. He is a sweet little thing!

Hugs,

J.
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Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
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08-01-2014, 10:26 PM   #9
Saralr
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My daughter went to the children's hospital in Madison for some completely different GI issues. She was so constipated that the pain kept her in bed for over a month. Anyway we saw Dr Danko (pediatric GI) and loved him and the team we followed up with. You need a referral to go there but I was very happy with our visits. And they will reserve a hotel room for you to get you a discount.

I don't know where they rate as far as IBD pediatric hospitals go but if the others mentioned are to far, this one is in the state.
08-02-2014, 12:49 AM   #10
Patricia56
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I am sorry to hear your story. You must be exhausted and scared. Have you been able to stay at the hospital with the baby?

I would run not walk to CHOP, the Holy Grail of pediatric IBD. If CHOP is absolutely out of the question then Cincinnati.

It is very rare for a child to have CD from birth and you want people reviewing his case who have seen and treated other very, very young children. CHOP has more than 4,000 pediatric IBD patients and has seen everything there is to see and treated every variation there is to treat. They are truly the experts and you want experts on a case like this. If there's a chance it's not IBD I would expect them to spot it and know what it is and how to treat it or who to refer you to for diagnosis and treatment.

We live in California and have not needed that level of care but there are several others who have gone to CHOP and can give you advice on how to get in there. At the minimum you should ask your doctors to consult CHOP and have them do a records review. They are way out of their depth and should have been consulting CHOP or Cinnci on their own. If they haven't been then that is a huge strike against them as far as I am concerned. The world of pediatric gastroengerology is really very small and the top docs are well known and have no problem with being consulted on unusual cases.

If you can get in with the doctor in Madison then I would do that even if it means having him hospitalized 90 minutes away. I realize this may not be realistic but better you have to drive that far (we have a 2 1/2 hour drive each way to our GI) and get good care from a doctor you can communicate with than stay local and get bad care and bad communication. BTDT and it is really not OK. You are in this for the long haul and the doctor you go with now may be the one you are still seeing 18 years from now. It has got to be a good fit and the doc has to be competent.

MLP asked a lot of really good questions. The answers will help us share our experiences with you without loading you up with a lot of irrelevant info.

And absolutely this child sounds like the perfect candidate for EEN but there may be some reason that he can't handle an NG tube or something else preventing the use of this treatment. Unfortunately, here in the US it is often simply ignorance on the part of the docs who don't view this as a valid treatment. This despite the fact that it is the first treatment tried nearly everywhere else in the world - Europe, the Far East, South America, Canada.

Good luck to you.
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Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.

Last edited by Patricia56; 08-02-2014 at 10:38 AM.
08-02-2014, 07:34 AM   #11
polly13
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I agree with the others I think you should get a second opinion. I am so sorry your little one is going through this.
08-02-2014, 06:48 PM   #12
kimmidwife
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I also agree with the others it seems a second opinion is needed asap. I would think mayo clinic or Cincinnati or nationwide children's in Ohio. We just left there. They are becoming one of the top gi centers for children in the country they were beyond amazing. We have been to to many children's hospitals and so fari am the most impressed with them.i would not at this point recommend CHOP for you. You need someone who will be willing to follow you for the long term and work closely with your doctor's. When wet went to CHOP they basically told us they would not follow us because we lived to far. They were willing to confirm the diagnosis and give an opinion to our local docs and nothing more.
Next I agree wholeheartedly with MLS do not rush to start your son on solid food. Allow his gut to heal. A lot of pediatricians currently are recommending even for healthy kids to delay solids until six months of age and then start very slowly. Are you giving him breastfeeding milk?
Breaston milk has a lot of things in it that help the gut. If you were not able to breastfeed due to his health and if your milk dried up and you would like to give him breast milk please send me a private message and I will be happy to help you with trying to relactate. That is one area i can help with. Please let us know how else we can help.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
08-02-2014, 06:50 PM   #13
kimmidwife
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Please excuse the typos my phone is not cooperating
08-02-2014, 07:33 PM   #14
Essieluv
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Welcome to the forum! Your son sounds very precious, such a strong little guy. I agree with the others...if possible, a second opinion would be best. Sending you both love, hugs, and prayers Keep us updated on how you all are doing.
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08-05-2014, 12:41 AM   #15
hezekiahsmom
 
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Well we are now home and finally out of the hospital after a long 3.5 months!! Were happy to have him home with us and hoping this time it lasts! Hes such a ham now! If any of you would like to see pictures or follow his story a few mom friends of mine started a page on facebook for him called Hezekiah's Gift. It was started before the doctors could find out what was wrong and now we know!!
08-05-2014, 07:29 AM   #16
CrohnsKidMom
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Oh, you must be so happy to have him home with you! Bless, the dear little guy. I hope you get the answers to your medical questions. What was decided about starting him on food, did the dr decide to wait?
08-05-2014, 07:37 PM   #17
DanceMom
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Have you had a full immune work-up done? I know immune deficiencies can be tricky to diagnose, especially in infancy, but it seems your boy could possibly have an issue there. I think getting multiple opinions is your best bet.
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