Crohn's Disease Forum » Parents of Kids with IBD » Newely dignosed daughter, age 7. Help, questions, and please tell me I am NOT crazy.

02-27-2013, 04:26 PM   #1
Join Date: Feb 2013
Newely dignosed daughter, age 7. Help, questions, and please tell me I am NOT crazy.

My daughter last year was a 85% student, this year, she just holding onto a 50%. She has a history of food allergies (dairy, egg, mustard seed) which she has outgrown, and a new one.. shellfish she just grew it this year.

We were unsure of her having LD, and or ADHD, or Food reactions. So we went to our local GP who really did nothing. She did a referral for the children's hospital for ADHD testing. It was not accepted by our insurance.

Insurance gave me a list of doctors to see, who spent 30min running tests three times.

My DD by this point was totally off her head. She could NOT stop moving, she was wearing ear muffs to try to block out the noise in the class. She was "diagnosed" as severely ADHD, and recommend to be put in a class of no more then 8 children.

No one heard, or listened to us, about the reaction to food, and her behavior.

I ended up pulling Gluten and Dairy, and we saw some improvement. Through a elimination diet we also pulled Soy and Corn.

I thought she was having a "yeast overgrowth" (which I am not told by MD that that, and a leaky gut is medically impossible.

When she was at her worst, it was like she was intoxicated. truly. i guess the more 'PC' term to use is "Brain Fog" and "hyperactive".

Over the xmas break we travelled quite a bit and my DD was sick, (both ends) with what I assumed was "die off" or "the flu" or even "seasickness" for six weeks.

after each episode if being ill, she had a few days of "clarity" and then the cycle would stat again.

Our Allergists nurse advised us to go direct to the GI Clinic at the local children's hospital. Because she was not having true allergies. But we were able to get our appointment moved up to March (next week).

We saw the GI doctor, who mixed up my daughter with another girl (same name, different age) and started to talk about my "daughters cancer" (not quite the best foot forward.. kwim?) She corrected her error and on we went.

She ordered genetic testing for "celiec" and did a up and down scoop.

we are still waiting results - but scoop showed 12 or so ulcers, and she was given the diagnoses of "mild crohn's.

her school work, started to slip again (she was doing great the first week back). but she was doing 150% better then the fall. she no longer used ear muffs in class, and is on top of things. but still "off".

I asked about her "drunken" or "brain fog" and was told it was no way connected to her Crohns, and that I was going to be referred to another departments once she was "cleaned up". The doctor and nurse advised it was highly unlikely that she had SIBO (not Yeast.. SIBO would be the correct term) based on her test results.

And that she was not hyper from any sugar/fruit/high starchy foods - and to put rice, grains and apples back into her diet.

Well, I did.. and guess what.. thing started to slip again. And then the HUNGER was unreal. She was eating over 4000 cal, a day - and still loosing weight. I MEAN UNREAL. They tested her for tape worms etc, and came back all clear.

And for the first time, my DD did not have loose stools, she was now getting slightly constipated.

(are you with me?)

So every 10 days we are in a cycle.. eyes are dilated, focus is off, dream state.. "brain fog" but less movement then the fall.

If my DD drinks lots of water, it seems to help "clear her mind" as does having a "BM".

Of course, all of this is in my mind, and I am making it up.

Starting this week, we are having her tested for Fructose, Sucrose and lactose intolerance. Because she will have been on a low residue diet, I am sure they will come up fine.

SO.. here is where my enlightenment came in - when she is carb loading - rice, rice pasta, higher fat foods, she eats like crazy - is always hungry, and is slower to have a BM.

When she eats a low residue diet, she has more BM, is more "clear" and has better (not great)focus.

but this is 100% connected to her foods, what she has eating, and her bowel movements.

And then her GI, and her nurse tell me I am wrong, and that that can not be.

So, please tell me - I spend more time with my daughter then anyone.. and yet, I am making up fairy stories.

Has this happened to ANYONE ELSE?
02-27-2013, 04:31 PM   #2
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Not something I have dealt with - hope you get some answers soon!
02-27-2013, 04:54 PM   #3
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Is your daughter on the autistic spectrum? She sounds like she has a few traits.

I really feel for you, it is just horrible when people don't believe you. Food can definitely affect what is going on.

If scope is showing 12+ulcers, this isn't 'mild'!

Good luck, hope you find a good doctor who will listen to you and you can sort out her symtoms.


Daughter 24, 1. Upper GI and colonic dysmotility with viscernal hypersensitivity.
2. Predominant Constipation with slow colonic transit and moderate gastroparesis,
3. Nephrolithiasis
4. Osteoporosis
Sacral Nerve Stimulator fitted Nov 17.

Peristeen Irrigation every day.
Self Catheterisation

Waiting for bowel stimulator!
02-27-2013, 05:06 PM   #4
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Have you had blood tests done for iron, B12 and folate. Low levels of these can be related to brain fog.

What treatment have you been given to for the crohn's? Maybe look at ENN, as this formula only feeding.

No your not mad, she could have more than one thing going on.
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)
02-27-2013, 05:28 PM   #5
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I am sorry your daughter is suffering so. My son is undiagnosed, but also had headache/brainfog issues ... mostly when he is feeling his worst. (He is an A+ student, and failed a math test when at worst. .. it is too hard to think for him when like that.) For him, we found that his headaches are bad when his serum ammonia levels are higher than normal ... although we are not sure why they are higher than normal. Liver function tests were normal.

How are they trying to treat her Crohn's? I am hoping the treament will help.

Cutting out carbs is similar to the Specific Carbohydrate Diet that some people with Crohn's do benefit from. (This did not seem to help my son.) If I were you, I would continue following the diet that makes your daughter feel best.
Mom to Danny (16), sick since Dec 2008 but current diagnosis uncertain.

(Danny's story)
02-27-2013, 05:32 PM   #6
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Join Date: Feb 2012
Have you looked into the Gut and Psychology diet? It is being used to treat IBD, allergies, and autism with quite a lot of success. It's similar to the paleo diet or the specific carbohydrate diet but adds in fermented foods and broths in stages (as tolerated) in stages. There is a lot of info on the internet. I don't know if this is a route you're interested in but just thought I'd let you know since your daughter seems to have the classic symptoms of "leaky gut".
As for leaky gut, it does in fact exist as per our GI. It's called "intestinal permiability" in med speak and you can search pubmed if you want some scientific research on it. Look up the work of Dr Alessio Fassano's research - he's working on celiac disease but is one of the lead researchers on gut permeability.
03-01-2013, 03:11 AM   #7
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I'm so sorry to hear about your daughter's struggles. My dd, when doing poorly, has had auditory processing issues and sensory issues, especially at your daughter's age. When younger she also had a lot of hyperactivity and naughtiness. Taking artificial colors and flavors and preservatives out of her diet and ultimately for her, wheat, out of her diet did wonders, but she does not have celiacs per multiple blood tests. She was not yet diagnosed with Crohn's but I think it probably was related - her nutritional status was just so bad she was extra sensitive to all those things.

I hope you can find answers soon. I know the doctors don't know all the answers, but keep knocking and keep fighting for your daughter. Whether or not they think something makes sense, keep doing what you know helps. Let them know that you need their help, but that these things are what you know are best for her. They can help you in other ways that she'll need.

PS. And you are definitely NOT crazy!
J's story:
*J, 18, Crohn's diagnosis 1-2013 (age13), intermittent NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
03-04-2013, 06:56 PM   #8
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I had a similar story with my son and ADHD 3 years ago. I tried Gluten free and casein free diet on my son, but he was losing too much weight and we had to take him off of it. Fast son was just diagnosed with Crohn's Disease on Friday and we are starting a new journey.

I just read an excellent book called What's Eating Your Child by Kelly Dorman. You can purchase it on Amazon. She is coming to my children's school to speak and I am very excited. I can't recommend this book enough.
03-04-2013, 07:21 PM   #9
my little penguin
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I would highly reccomend EEN ( formula only)
It is proven to put kids into remission . It can not keep them there though.
If she is having trouble with foods have they ruled out EGIDs on her scopes.
Maybe ask the Gi for a trial of EEN on a pure elemental formula ( amino acid based )
Such as neocate or elecare .

Good luck
DS - -Crohn's -Stelara -mtx
03-22-2013, 07:06 PM   #10
Join Date: Feb 2013
Sorry just needed to regroup. My daughter is in the process of getting tested for GSD/Reactive Hyperglycemia. She is now on a diabetic style diet, and is having her blood sugars tested.

We were at the Children's hospital today - getting Labs done. Not sure if its something else, or my DD just does not do well on Pantasa. She is on 1000 mgs a day, and is having clay like stools (months now) and most of the pearls from the pills seem to be whole in her stools.

I think by the end of this I will loose my mind..

I have tried all of the above diets, but nothing seems to be working 100%. So far the diabetic diet, GFCF seems the best option. Nothing fried, and still no corn, limited soy. Every meal is a guessing game..

03-22-2013, 07:25 PM   #11
my little penguin
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IT is normal to see the white balls from pentasa in the stool
but keep in mind
most GI's state giving pentasa for crohn's is like giving aspirin for a brain tumor
It won't hurt but probably won't help much either.

Diet typically does NOT get IBD kids into remission since their disease tends to be more severe in course than adults.

Have you discussed a med change wit your GI since she is not doing well?

Crohn's Disease Forum » Parents of Kids with IBD » Newely dignosed daughter, age 7. Help, questions, and please tell me I am NOT crazy.
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