Jae's update and sibling issues

[CarolinAlaska]

E's FC test came back normal. Still having almost daily abdominal pain. GI appt got pushed back due to standardized testing at school, then she missed two days of it anyway due to abdominal pain. Her new appt is May 13.

J's MRI came back normal. No further spine testing for shearing is needed. She'll still need to be monitored for her scoliosis, but neurosurgeon keeps saying he wouldn't worry about it, that it looks mild to him. Bentyl did nothing for the first week for her GI complaints, but she had a good few days now, so we'll wait and see... I'm not sure if it is the Bentyl helping, or just her usual waxing and waning cycle. We'll give it some more time and keep hoping.

 

[crohnsinct]

Seriously! You must have telepathy because I was fixin to send you a pm asking after your girls.

Normal FC is excellent news. I know it means the search continues and IBS stinks but at least it isn't IBD...at least for now.

Also good news on the spine front! Sorry Jae is still having abdo pain though. have you started a food journal...ugh...even as I typed that I cringe. I tried that we T and it was tedious.

 

[kimmidwife]

Really happy to hear about the normal FC? Hopefully it is IBS or something g else with an easy fix.
Sorry to hear about J's pain. Glad to hear he says the scoliosis is minor that is good news!

 

[CarolinAlaska]

I'm frustrated, but feeling complacent. I don't even know what to do now. Jae is still having cramping abdominal pain a couple of days a week that knocks her out of work for a couple of hours. She has gained two pounds, but still under 100 lbs at 16 years of age. She is holding a full time job this summer and seems happy. Should I push for change?

On the other hand, my E is still suffering abdominal complaints a couple times a week. Mostly heartburn and nausea. She is taking Prilosec and MiraLAX and is on a GF/DF diet. She has an allergy specialist appointment in July. The GI doesn't seem impressed with her labs and said to try Prilosec 3 weeks and call her.

 

[crohnsinct]

I am feeling your frustration! Under 100 pounds at 16 could be fine but not at her height! This is an issue and someone needs to look into it!

Have you made any dietary changes for J?

Have you seen an allergist to maybe uncover an offending food for each of the girls.

I am sorry, I get clear pill cams, scopes, fc tests etc but no hand washing allowed here. They are kids and in pain someone needs to pay attention.

There have been some major life changes for then recently. Have you considered stress? Maybe getting then each into a counselor might help...if not with the cause of the pain a least dealing with it and the disappointment when no one listens. That was the most disappointing thing to T...for three years being told she was fine whe n she was in pain!

 

[Mr chicken]

Big time hugs
I so get where your coming from
Everything was clear on DS but he still had lots of pain that doubled him over increased BM rectal pain etc but nothing showed up on the test results
Gi was kind enough and added flagyl and other things but no explaination why
Finally in desperation we switched to EEN for two weeks followed by PEN with extremely limited foods trialing one at a time .
Instantly he got better on EEN after two weeks and started to gain weight again
It was amazing and currently we are finding foods that should be ok
But for some reason for him trigger abdominal pain
One example is plain boiled chicken .
So we will build a diet and then decrease pen

I say push slowly
I am glad we did and also glad our GI realized something was going on ( not Ibs ) even if he couldn't explain the why yet .

 

[Mr chicken]

http://www.ncbi.nlm.nih.gov/m/pubmed/24983973/

Diet we are roughly basing his on

 

[CarolinAlaska]

I am feeling your frustration! Under 100 pounds at 16 could be fine but not at her height! This is an issue and someone needs to look into it!

Have you made any dietary changes for J?

Have you seen an allergist to maybe uncover an offending food for each of the girls.

I am sorry, I get clear pill cams, scopes, fc tests etc but no hand washing allowed here. They are kids and in pain someone needs to pay attention.

There have been some major life changes for then recently. Have you considered stress? Maybe getting then each into a counselor might help...if not with the cause of the pain a least dealing with it and the disappointment when no one listens. That was the most disappointing thing to T...for three years being told she was fine whe n she was in pain!

Jae's diet is extremely limited. No gluten or raw veggies or whole corn. She's never had allergy testing. We started with EEN, and thought we'd never find foods she could tolerate after that. She does potatoes, chicken, fish and beef well without side effects. Maybe we should go the allergy route for her too.

She had a counselor in Alaska that she really liked. I do think that being out of the school environment is helpful. Yea for summer! Her summer job is intense, but she seems to be thriving in the camp kitchen work environment.

Maybe I'll call her GI to update her, and her ped to ask for referrals to allergist and counselor.

 

[Catherine]

Is J's FC also normal?

 

[CarolinAlaska]

Yes, at least her lactoferrin was in January.

 

[CarolinAlaska]

We have appt with counselor tomorrow. Job is getting harder on her. I don't know if she's gonna make it.