The Journey of a child

[mom]

pianogal & HerMajesty,
I appreciate all your helpful and useful insight and opinions.
I am thankful for the sounding boards.

Today barometric pressure was 30.18 little to no itch but did complain of the tummy and feeling like needing to throw up.
She NEVER does throw up though. She also had head ache today.

Also the last 3 PT visits Hip hasremained alighned. I have kept her off her bike and doing home exercises occasionally. ( I wonder if the break inbetween the PT visits once aligned has helped to not reaggrivate the nerve and let the inflamation go down) Just thinking out loud.
I think PT has helped, But I also think to much can keep things inflamed???????

( she ate honey nut cherioes for breakfast, hot dog for lunch and yes we were on the go all day so McDonalds on the way home) ( I know terrible food day ) ALL gluten I suppose ????
My mind is MENTALLY Exhausted! Spent most of day at DR. with my baby b/c of possible hip issues ( could this be a trend?) X-ray and such. Could just be the equalibrium as she has had MANY ear infections. SO any way not related to PN but just to my STRESS LEVEL

MOM

[pianogal]

wow, that does sound like a stressful day for both of you! ugh. She is so lucky to have you taking such good care of her.

this wiki link explains gluten free diet: http://en.wikipedia.org/wiki/Gluten-free_diet
Gluten is a protein found in wheat (including kamut and spelt), barley, rye, malts (and sometimes oats). It's used as a thickener or binding agent in other foods... and disguised with names like "natural flavors" etc. But there are tons of other grains you can eat on a gluten free diet: rice, corn, potatoes, tapioca, quinoa, amaranth, arrowroot, millet, montina, lupin, quinoa, sorghum (jowar), taro, teff, chia seed, yam, bean, soybean, sweet potato and nut flours.

For an easy gluten free version of your day without buying fancy schmancy stuff, you could do Corn or Rice Chex, Hebrew National Hot Dog (minus the bun), and at McDonald's (Beef Patty and condiments wrapped in lettuce, apple dippers in caramel dip, McFlurry with M&M's, Fruit and Yogurt parfait (minus granola), all drinks, side salads, etc...http://gfrestaurants.com/mcdonalds-gluten-free-menu/)

For me, it's too hard to change my daughter's diet unless I really know she needs it so that's why I opted for the enterolab test, and in a few weeks I'll find out....

I am praying for you... and again, I really am not a gluten free freak! lol

[pianogal]

ps- sometimes I wake up with lower abdomen pain too (and increased PN pain). it's because my rectum is full, usually a BM comes very soon after, and after the BM, that pain is gone. but as stuff passes through my rectum prior to the BM, it creates tingling in the labia minora directly below my clitoris. maybe it could be similar for her?

[mom]

OK biopsy results from upper and lower GI are in.
She def. has inflamation of the stomach consitant with celiac disease however the blood work done at time of procedure was NEG for celiac disease ( so no gluten intolerance pianogal)( I guess i didn't know they were checking that but they called today)
So she is on nexium and some other for the inflamation ( I 'll post the name when i pick the script up tomorrow, just got called in today)
So we are monitoring stomach issues and will see the GI back in 3 months unless the tummy pain does not go away within 2 weeks of being on both meds.

So tonight while at church she had sudden and I mean sudden urge to go potty. she went 3 times in about 45 min and then needed to go agian and her teacher did not believe her and she had an accident in her pants. She has not had an accident since she potty trained!!!
So I think i have read about some of you on the forum having urgency but what about not being able to hold it?????

She was so embarrased and hurt that she was telling the teacher she had to go now but she told her no, and then she pottied on herself with all her friends around...I actually cried for her. It really hurt my heart for her.

Thanks for all the support HOPE friends
MOM

[nyt]

I cried when I read about your poor daughter having an accident in her pants. It sounds like you need to have a chat with the teacher at church to let her know your daughter has some problems that are being addressed and if she says she has to go to the bathroom she must let her go.

One of the side effects of Nexium can be frequent stools, diarrhea or constipation. So this change in bowel habits could be from the med and may or may not settle down after she has been on the meds for a while. Also, she is still young enough not to have the control that adults do over her bowels. Even so I know there have been times even before my pudendal problems that I had to go and didn't think I would make it to the bathroom in time. I think we all have had those times, esp. if you have diarrhea and are sick.

[pianogal]

Oh, I am so sorry about her church experience. I'm sure you talked to her teacher after that. Oh my that is sad.

About this:

She def. has inflamation of the stomach consitant with celiac disease however the blood work done at time of procedure was NEG for celiac disease ( so no gluten intolerance pianogal)

a stool test may still come up postive even if a blood test is negative. I believe it is more accurate. Also, my mom's blood test came up negative, but removing gluten from her diet improved her diarrhea 100%. If I were you, given that her stomach has inflammation consistent with Celiac disease, I'd get the stool test from enterolab to be sure.

someone on a babycenter forum said this: http://community.babycenter.com/post/a1 ... blood_test

If you read on Enterolab's website, they say that their stool test is much more sensitive than the blood test. My boys were 5 and 3 when we had them tested. YDS had had the blood test when he was nearly 3, and it came back negative. But a year later, the Enterolab stool test was positive. The younger kids are harder to get an accurate result on. I suppose you could request the blood test for you son, and if it comes back negative but you still have your doubts, you can spend the money on Enterolab.

We ordered the DNA panel for our boys as well, and both came back with having 2 copies of a gluten-sensitive gene (one from me, and one from my husband). So when we get DD tested, we'll just do the stool test.

[HerMajesty]

except for the GI issue, she and I are twins...I had neuropathic itch starting in pubic, then anal, then started with the urinary frequency which became so severe it was debilitating I did however for years before that, have interstitial cystitis which unlike the later neurogenic bladder spasms, I was able to control very well. Is she still on the "bladder diet?" if not try to keep her off acidic stuff such as juices, and increase her water intake; especially have her start drinking extra water right away when her urinary symptoms start. It may seem counterintuitive when she has to urinate a lot, but water is the bladder's best friend. It dilutes irritants in urine that can inflame the bladder wall, and fills the bladder quicker: I have experienced cycles of dribbling small amounts of urine, then having more urgency and dribbling a little bit again, etc...these cycles have been broken by urinating with a full bladder.

[mom]

Pianogal- I will ask the GI about the stool test.
I also want to clarify that the" Accident " was potty not bowel. Not that it makes a difference it was still humilating.

Thanks for all teh input ladies

[HerMajesty]

Also Mom with a sudden increase in urinary symptoms, it is a good idea to get her checked for a UTI: many of us with neuro-based urinary issues are more prone to catch bacterial UTI's as well.

[mom]

The name of the other med she is on for the stomach is CARAFATE, so we are on NEXIUM once a day, CARAFATE 2x a day and MYRALAX once a day.
She is still having urinary frequency and urgency. Bowels seem to be ok. I tried lots of wheat free, gluten free things over the weekend, seemed to help. Then she had like 5 oranges in a row and her tummy of course hurt. ( she LOVES fruit though)

HerMAjesty, we are still doing alot of things on the IC (bladder) diet. But not living by it. I may have to be more disciplined for a good week with the dairy, wheat and gluten and see if it helps.

Itching is still at a minimal She has been having some little rash itch spots on her back ( not sure what that is about)
We have not been to PT in almost 5 weeks do to weather, sickness, etc. We are still doing bridges at home 20 reps.

Still have our appt. with DR.HIBNER is April.

Hope this day finds all of you well.
MOM