Confused and a bit disapointed

[Devynnsmom]

Devynn has been milk and dairy free for a month (since Sept 13).She had the breath hydrogen test on Oct 10 to test for lactose intolerance. She also had (on Sept 13) 9 vials of blood drawn, checking EVERYTHING. Everything came back within normal ranges. For the breath hydrogen test she had to fast from 9pm the night before and then the test was done at 7am. Her starting number was 69 (before lactose) after the drink, the number went down.. 15.. 13..12. Her doctor is stumped. She has never come across a reading like that. So they are saying she is NOT lactose intollerant. But that she could still be allergic to milk. So now she will have allergy tests (food) and a whole other battery of blood work. In the past month she has had stomach aches, joint pain (hip and ankles) a huge mouth ulcer that lasted 9 days, blood in her stool atleast 3x. Her GI is waiting to talk to the ped before she proceeds, but said she will most likely change her meds again, or add something because she doesn't feel like its strong enough. She was talking about prednisone, and another drug (can't remember the name) that was originally used for something else, but has the best results for Ulcerative Colitis. It is sulfa based. I am confused and a bit disapointed. I really thought we would have some kind of answer today :confused2: Instead she got poked (blood and flu shot) and no real answers. She is happy that she can have milk again. I just want answers. I want my baby (well not really a baby, she's 11 :tongue: ) to feel well. Right now and for the past 18 mos or so, she has more bad days than good.

 

[Farmwife]

I'm in my 30's and still my mama's baby.
So sorry to hear your still up in the air.
I feel for ya.
I've been feeling that way for years with Grace.

 

[Devynnsmom]

I've been feeling this way for years too. She's 11 and all this crap (no pun intended) started when she was about 18 mos old.

 

[my little penguin]

Sounds like they are putting her on another ASA.
Not sure why if the first didn't work.
Also our Gi steers the boat on Gi stuff not the ped
The ped only handles normal kid stuff( ear infections etc)

 

[Devynnsmom]

Yes, our GI will control her GI stuff too. The ped is checking in to other things, like the food allergies etc. We just started going to her, so she is being very thorough.

 

[Catherine]

Did you only do a lactose breath test? was it a three hour test?

I believe Sarah has had the same testing but there was a special diet the day before the test. Sarah also had to do control test with lactulose.

Did she have lactose leading up to the test and were they measuring both hydrogen and methane.

Sarah started at hydrogen 1 and methane 10. And after 2 hours was 92 and 40

Has she had antobodies? in the last month?

 

[Devynnsmom]

She was off milk and anything containing milk or milk products (cassein and whey) for a month. The day before she could eat normally (minus the milk and milk products) and then she had to fast from 9pm the night before. It was a 2 hour test. We went in and she breathed into a syringe looking thing. Then they gave her the lactose drink and we had to go back every 30 min so she could breathe into the syringe looking thing again. I'm not sure what it was measuring.. it was the breath hydrogen test.

 

[Catherine]

Sarah pre diet removed all fructans, glacto-oligosaccharides, lactose, fructose, sorbitol, mannitol, xylitol and maltitol. We received a list foods could be eaten in the 24 prior to the test.

If I understand the idea behind of the diet correctly this is to have the output of hydrogen and methane as low as possible at the start of test.

 

[Catherine]

I mean to say it the same test but our centre took reading every 20 minutes.

 

[jmckinley]

Sorry things are so confusing. Were they talking about Lialda? Some ASA's like sulfasalazine just target the small intestine. But some of the newer ones work in large intestine too. If she has UC, they may be wanting to try one of the newer ones.

We have a love/hate relationship with dairy. Ryan is lactose intolerant, but it is worse than that. He is dairy "intolerant" and his body just doesn't digest anything about the cow's milk products very well at all. I am not sure how it works, but there's allergy, then there's intolerance to foods where you just can't digest them very well and the digestion process causes inflammation.

Hope you get more answers soon.

 

[Sascot]

How frustrating. We had an appointment like that a couple of weeks ago - came out feeling more upset that before! Shame she's having to get so many bloods done, but at least the doc is being very thorough - not that it helps when things come back normal :yfrown:
Hope you get some answers soon!

 

[Devynnsmom]

Catherine, nope not dietary restrictions at all. She had been off of milk and milk products, but other than that she just had to fast.
jmckinley, no that wasn't it. It was something like sulfasalizine, but I'm not sure if that was it. I just want answers so I can help her to feel better.
Sascot, yes I really hate appointments like that. Her doctors are being very thorough. Which I am greatful for. But I want answers. I'm so relieved that she is *used* to having blood drawn. Very sad as well. When her journey began, they had to hold her down for blood. She was only 7 but as strong as a man. I had to promise her something every time she had blood (Webkinz worked the best, but got VERY pricey :ytongue. Now she just hops up on the chair and watches. She isn't happy to have blood drawn, but doesn't go into panic mode.

 

[my little penguin]

Have you tried buzzy bee?
For blood draws.
DS doesn't complain either but this numbs the area so less pain.

http://www.buzzy4shots.com/

We bought one two years ago and it was worth every penny no pain for shots, Iv's or blood draws.

Hope they figure it out soon nothing is more frustrating .

Hugs

 

[Devynnsmom]

No Ive never heard of buzzy bee. I've bookmarked the page, thank you!