Share Facebook
Crohn's Disease Forum » Parents of Kids with IBD » 18 month old undiagnosed with Crohns--looking for info


01-24-2013, 09:04 PM   #1
Brimom
 
Join Date: Jan 2013
Location: San Antonio, Texas
18 month old undiagnosed with Crohns--looking for info

My daughter is almost 18 months old and is suspected to have Crohns disease. I am looking to see if anyone has advice for handling this disease in someone so small. She was referred to her GI about 6 months ago for failure to thrive. She currently weighs 19lbs. She has had multiple rounds of lab work, an abdominal ultrasound which showed a liver mass...after an MRI it was determined this is a hemangioma on the liver and not causing issues. Her latest blood work was positive for IBS indicating Crohns. Her recent endoscopy and colonoscopy shows esophagitis for which she started nexium today...it also showed her to be lactose intolerant...which surprised the Dr because her main issue is consitpation....and aslo shows inflammation of the small bowel and intestinal mal absorbtion. Her Dr wants to do more tests before officially diagnosing her with Crohns so she is now scheduled for a CT of the abdomen and pelvis in 2 weeks......
01-24-2013, 09:44 PM   #2
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
Sorry you had to find us. There are parents here with young children and I'm sure they will be long shortly.
__________________
Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
01-24-2013, 09:51 PM   #3
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
Hi and welcome.
My Grace has been ill for a long time also. She just turned four. When she turned two and a half we decided to start fighting for more answers. Here we are today with her dx of IBD and another one for good measure. lol

Have you ever heard of Enteral/Elemental Nutrition (EN).
I've posted the thread here
Please look at this. It's done wonders for so many. My Grace is on this and we love it.
Please ask as many questions as you want. We're here to help. Hang in there, it will get better.
__________________
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
01-24-2013, 10:39 PM   #4
tots
Senior Member
 
tots's Avatar
 
Join Date: Feb 2012
Location: Austin, Texas

My Support Groups:
I am so sorry your baby is going through this!

lauren
__________________


Diagnosed= 1992 and again Feb 2012 Confirmed with
CT enterography May 2015 !!


Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


:


Ok, my family Dr told me to cut down on the stress- a husband, 3 kids, and 3 dogs!
01-25-2013, 01:08 AM   #5
CarolinAlaska
Holding It Together
 
CarolinAlaska's Avatar
 
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
It sounds like you've had lots of positive tests
What kind of info are you looking for in particular?
Hugs to you and your little one.
Carol
01-25-2013, 01:47 AM   #6
Patricia56
Senior Member
 
Patricia56's Avatar
 
Join Date: Jul 2012
Location: Northern California, USA
Many hugs to you Brimom.

Farmwife referred to EN - enteral nutrition. It's a special type of formula that is prescribed by the doctor and given either by NG tube, g-tube or mouth. If your child has not yet been placed on some kind of formula like this under the guidance of an experienced nutritionist then I would call and insist on a referral for this immediately. If not sooner.

Is she being screened by an allergist for food allergies? Did they distinguish between being lactose intolerant and having a milk protein allergy? This is particularly important because some of the EN formulas are lactose free but have milk protein.

I am going to assume she is being treated by a pediatric GI there in San Antonio either in private practice or affiliated with the Chidlren's Hospital.

It sounds like the workup is pretty good so far but I would not want a CT scan done if it could be avoided. Instead an MRE (a special MRI of the gut) would seem to me to be most appropriate given that a CT scan radiation dose is very high - perhaps as high as 500 xrays depending on the machine and procedure.

But MRE's are not done everywhere, especially on such a young child. It requires a specially trained radiologist and techs who have some special training as well. And I should qualify that by saying I have heard of others with young children who got MRE's but I think the youngest was at least 3 so it may not be an option with a toddler.

To be really honest, instead of going ahead with the CT scan, I think you should take your daughter ASAP for a consult at one of the two Pediatric IBD Consortium Programs in Texas. Texas Children's Hospital Pediatric IBD Center in Houston is probably closest. 832-822-3625 is their number. The other one is in Dallas, Dallas Children's Hospital Pediatric IBD Center 214-456-8000.

The number of very young children with IBD is tiny. Sadly, they are often very sick. A specialty center like Texas Children's or Dallas Children's sees many more IBD patients because they have special clinics and they see the most complex, unusual and difficult cases so they are likely to have seen and treated another child like yours before. This is a huge advantage. They are part of a network of ped IBD centers across the country and can consult with doctors at other even larger programs. Because they see so many IBD patients the radiology department has done many pediatric MRE's and is more likely to produce reliable and useful results.

So there's my speech about why you should be going to Houston or Dallas. If you had the resources I would say you should go even farther afield to Mayo Rochester, Cedar Sinai in LA, Cleveland Clinic or CHOP (Philly) since these are programs with stellar reputations and will have seen other children like yours because they see such a large number of pediatric IBD patients. CHOP sees around 4,000 a year.

If you're already getting care at either of those IBD clinic programs then I would strongly suggest you ask them why an MRE will not work instead of a CT scan.

All the best
__________________
Badger, 18, CD, overall great guy
Dxd age 10, 2006 after nearly 1 year of active sx
Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.
01-25-2013, 03:13 AM   #7
tots
Senior Member
 
tots's Avatar
 
Join Date: Feb 2012
Location: Austin, Texas

My Support Groups:
I live in Austin and like San Antonio I am sure has a great
Children's Hosp. I know it's scary but, as long as you trust
your Drs you will be able to work well with him. That will
Be very important.

I am sure I had it very very young too. Even at my old age of 49
I remember trips to the ER and visits with the Dr a out how little
I was. AT 28 when I was Dx it all came together!


My thoughts are with you and your baby! How about a support
group for parents with kids with a chronic illness? I have found
some for Crohn's at synagogus. I am not Jewish but a lot of
people who are Jewish have this disease.

As a matter of fact New York City has a lot of good Drs in the
Hasidic (sp?) community. UCLA was going to send me there
If I didn't go into remission.





Lauren
01-25-2013, 06:45 AM   #8
Dexky
To save time...Ask Dusty!
 
Dexky's Avatar
 
Join Date: May 2010
Location: Kentucky

My Support Groups:
Welcome Brimom! I'm always so sorry to read about babies having this or any other illness for that matter. I hope you're on the right track for her and she'll soon be a happy toddler like they all should be!
__________________
Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
01-25-2013, 09:54 AM   #9
polly13
Senior Member
 
polly13's Avatar
 
Join Date: Jan 2012
Location: Tipperary, Ireland

My Support Groups:
Hi and welcome and sorry you had to find us. There are a few of us on here who have very young children with crohns so you are not alone and we have gone through what you are going through now. My little girls Lucy was diagnosed at two and a half - she is 4 now. As you know crohns presents it self in many ways and from what I can see no two paediatric cases are the same. I agree with Patricia in so far as the mre is the gold standard for scanning. Y
My own experience in relation to the diagnosis process is mixed, we were attending a paed at our local hospital from when Lucy was 9 months and a chroma diagnosis never entered his head and it was only when we went to a paediatric GI did we get our diagnosis - I would urge you to do that and moreover to ensure ther is a paediatric crohns unit at the hospital. Lucy had scopes, barium X-ray(might not be the proper name but it is to enable docs to see the parts of the colon not visualised through scope) and mre ( this was done later ). Hope you get answers soon and if there is anything I can help with please let me know
01-25-2013, 11:56 AM   #10
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
I also agree with the others ask about an MRE instead of a CT scan. Mre is basically an MRI where contrast is drank instead of just given IV. In one so little it is better to avoid ct scans and X-rays as they do expose to radiation and the less exposure over a lifetime the better. MRE has been used for a out two years now. If your doctor/hospital does not offer it I would ask about going to a facility that is able to do it.
__________________

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.
01-25-2013, 12:56 PM   #11
Mylittlesunshine
Senior Member
 
Mylittlesunshine's Avatar
 
Join Date: Dec 2012

My Support Groups:
Hi and welcome
I'm so sorry to hear about your little one
My daughter is 3 and is waiting diagnoise
She has had so many problems and symptom
For around two yeArs .
Good luck and feel free to ask questions
There is always someone around to help x
01-25-2013, 05:04 PM   #12
Momto2girls
Senior Member
 
Momto2girls's Avatar
 
Join Date: May 2012
Location: Kansas
I'm so sorry to hear about your tiny little one!! I hope you get her feeling better really soon!

Not to hijack, but would Dallas be a good place for a second opinion -- like, better than Children's Mercy in KC? CHOP is SO much harder for us, but we go to Dallas a couple of times a year anyway, so maybe we could actually do that!?
__________________
Supermom to 2 girls: Little Girl (4) & Big Girl (7)

Little Girl: Undiagnosed (scope 4/12: non-specific inflammation in TI & colon, gastritis & h. pylori in stomach), Asthma, Food Allergies
Sulfasalazine, Miralax, Folic Acid, Zyrtec, inhalers
01-25-2013, 05:19 PM   #13
Patricia56
Senior Member
 
Patricia56's Avatar
 
Join Date: Jul 2012
Location: Northern California, USA
Hi Mom2 -

I think you are asking if your family could go to Dallas instead of KC right?

I'm trying to remember cause I don't want to open window #12 to check back but did you have family in Philly and that's why you were going to go to CHOP?

Whatever the case, if you have been to CHOP and gotten a diagnosis/treatment plan in place then it would make perfect sense to me to transfer care back to someplace "local". The Dallas Ped IBD program is part of a nationwide consortium of Ped IBD centers and might be a good place to look at. You will have to decide for yourselves if it's a good fit and you are happy with the care she gets there but the quality of the program should be very, very good. And they specialize in IBD.

If you mean should you go there instead of going to CHOP - well you can do that too. CHOP is sort of the palace on the hill - the top ped IBD guy in the world is there, the program is huge so they have seen everything and they have a reputation for excellence paired with compassion and caring.

Does every child with IBD need to make the pilgrimage to CHOP - no. Most kids get excellent care that is no different than what they would get at CHOP at ped IBD centers all over the US including Dallas.

But if you have a child whose presentation is very unusual, who is very very young, who is not responding to treatment and is very very sick - often those families end up taking their child to CHOP or Cleveland Clinic or Mayo or a handful of other places that have the resources and experience other places just don't have and/or can't get because they are too small (in comparison).

Does that answer your question?
01-27-2013, 01:00 AM   #14
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Hi Brimom and

I am so very sorry to hear about your precious little one... What a difficult and heartbreaking time for you.

You will find quite a few parent's here that have young children with IBD. That is a sad fact in itself but if there something positive to be found in all you are going through it is the knowing that you are not alone and you have found a wonderful place for support and knowledge, to cry and to laugh, to vent and to be thankful.

I hope you stay around Mum so we can get to know you better and give you helping hand for the journey that may await you.

Dusty. xxx
__________________
Mum of 2 kids with Crohn's.
01-28-2013, 08:43 AM   #15
Brimom
 
Join Date: Jan 2013
Location: San Antonio, Texas
Thank you all for the information, it has been hard knowing where to look and find info for this issue in someone so small....any advice and information is helpful
01-28-2013, 09:08 PM   #16
Momto2girls
Senior Member
 
Momto2girls's Avatar
 
Join Date: May 2012
Location: Kansas
Hi Mom2 -

I think you are asking if your family could go to Dallas instead of KC right?

I'm trying to remember cause I don't want to open window #12 to check back but did you have family in Philly and that's why you were going to go to CHOP?

Whatever the case, if you have been to CHOP and gotten a diagnosis/treatment plan in place then it would make perfect sense to me to transfer care back to someplace "local". The Dallas Ped IBD program is part of a nationwide consortium of Ped IBD centers and might be a good place to look at. You will have to decide for yourselves if it's a good fit and you are happy with the care she gets there but the quality of the program should be very, very good. And they specialize in IBD.

If you mean should you go there instead of going to CHOP - well you can do that too. CHOP is sort of the palace on the hill - the top ped IBD guy in the world is there, the program is huge so they have seen everything and they have a reputation for excellence paired with compassion and caring.

Does every child with IBD need to make the pilgrimage to CHOP - no. Most kids get excellent care that is no different than what they would get at CHOP at ped IBD centers all over the US including Dallas.

But if you have a child whose presentation is very unusual, who is very very young, who is not responding to treatment and is very very sick - often those families end up taking their child to CHOP or Cleveland Clinic or Mayo or a handful of other places that have the resources and experience other places just don't have and/or can't get because they are too small (in comparison).

Does that answer your question?
Yes, it does -- thanks. We are actually in KC -- we were going to travel to CHOP b/c we do have friends there. But, Dallas is actually MUCH easier cheaper and closer and we have family there. Didn't know if Dallas was considered markedly better than Kansas City? But I think for now we are still doing OK here so I'm not reaching out for an appt out of town just yet.
03-29-2013, 08:05 AM   #17
yogurt's mom
 
Join Date: Oct 2012
Location: Maryland
my son is 18 month and potentially has Crohn's. As we are still figuring this all out, I don't have much to say, but just wanted to commiserate. can I say that I'm tired of changing diapers? is that too trival of a complaint? anyway best of luck. we are considering trying to get in contact with people at CHOPs as no one here seems to be able to figure out what is going on with our little one.
03-29-2013, 08:22 AM   #18
QueenGothel
Senior Member
 
QueenGothel's Avatar
 
Join Date: Oct 2011
Location: Michigan, USA
Rowan had an MRE at age 3. She was asleep for it and they gave her contrast via NG (tube in the nose to stomach) I would imagine they could do it this way for any age. Of course the hospital has to be equipped for it. So sorry your baby is ill. I hope they figure it out and the first course of treatment helps for a very long time. The EN route seems to work the best for kids so young, because of the pill swallowing factor and it is way less traumatic than injectable medicines... Remi/Humira. Most parents shy from EN it in fear of traumatizing their kid, I think it is way harder for the parents than the children to come to terms with this course of treatment. Most kids get over the food factor quickly. Keep us posted.
03-29-2013, 05:38 PM   #19
Sascot
Forum Monitor
 
Sascot's Avatar
 
Join Date: Aug 2011
Location: Falkirk, United Kingdom

My Support Groups:
Hi and welcome. Sorry I don't have much advice for a child that young, my son was 12 when diagnosed. You certainly have lots of good advice from others. Hope treatment goes well.
Reply

Crohn's Disease Forum » Parents of Kids with IBD » 18 month old undiagnosed with Crohns--looking for info
Thread Tools


All times are GMT -5. The time now is 04:44 AM.
Copyright 2006-2017 Crohnsforum.com