The Journey of a child

[pianogal]

why don't you keep a log of her diet and see if there are correlations with her itch and tummyache. The fact that itch and tummyache go together makes me think they could be correlated. Perhaps on some days she has a different diet which is easier on her system. I notice one day after dairy I get a migraine. And shortly after gluten, I get bloated, but the following day I am constipated.

Also, it could be related to the IC diet. Just keep a notebook in your kitchen and as you feed her, quickly jot down what her meals are... or have her do it if she's old enough to write it down.

[mom]

The "tummy" pain is I beleive pelvic pain that she does not know how to identify. I know that I know that her itch is not from food.
One day she was fine the next day she had itch. No diet change nothing different.
And even if the "tummy pain" that makes her feel like she is going to throw up is food related, which I am not sure that it is,
she still has left leg and calf ache. Rectal itch occasionally, clitoral itch ( agian a food allergy would cause itch or hives all over not isolated to your private parts.)

She had honey nut cherioe's for breakfast. Smoked turkey sandwhich and ice water for lunch and manwhich for dinner with water.
she also had a sucker and sweet tarts today.

[pianogal]

Well, gluten is in most of the foods she had that day. (cheerios, many lunchmeats, bread around the manwich)

My husband has a patient who has celiac disease (gluten intolerance) and it makes her hip joints only hurt if she eats gluten. I have gluten intolerance, and it only makes my abdomen swell and fatigue me if I eat gluten. It can make things happen in only one area...odd as it sounds. But go with your gut (haha, no pun intended). It's just that a gluten test is easier to do than a lot of injections and surgery, and I'm not saying gluten is the cause of your daughter's itch, but it may be contributing to making the itch worse.... and if a person has celiac disease (or gluten intolerance) this increases their body's overall inflammation. So... removing gluten could reduce overall body inflammation... and that could lower her overall itch levels... if it was a true factor.

when I cut out gluten, my overall pressure in my rectum decreased... and that helped lower my pain levels as a result. So although it wasn't the causative factor in my pain, it still reduced my pain by getting it under control. Same with dairy... removing it really lowered pressure levels... and if I slip up and have something on my list... I get all this gas, and it makes me hurt so badly till it's out of my system. (I had to cut out potatoes too for some odd reason because I am allergic to nickel and foods grown in the ground like potatoes are high in nickel)

So... anyway, I'll stop reminding you because now I think you know all I do about it... but I won't stop praying for you both! Love you!

[A's Mommy]

I've been thinking about little T as well, mom. Praying always.

[HerMajesty]

Before I was diagnosed with neuropathy I went on a "nothing diet" for 2 or 3 months...paid some quack nutritionist a couple of grand to tell me I was "intolerant" to all kinds of foods; there was so little I could supposedly eat, I pretty much lived on rice-based nutrition shakes.
Just one of the many ridiculous dead ends I followed because no one wants to believe that neuropathic itch is exactly the same as neuropathic pain only somehow processed differently: looks the same on EMG, has the same underlying causes. I did the dietary changes, did the dermatologic creams, did the allergy meds in spite of negative allergy tests, did the courses of antifungal meds...
Forget it!
Considering there is a leg length discrepancy and considering the mechanism of injury, which sounds like it could have shifted a pubic bone, I am going to place my bets that this little girl has a mechanical entrapment of the pudendal nerve, with referred pain to the lower abdomen.
I don't mean to be argumentative it is just that I went through all of this, 1st with interstitial cystitis which is rare teens, and then with neuropathic itch which is rare in anybody, getting every type of advice but the right kind, and spending all sorts of time, money, and energy, and going through all kinds of physical pain, to chase nonsense.

[pianogal]

just to clarify,
I am NOT saying the itch could come from a food allergy or be cured with diet. No way.
I am 100% with you both in thinking it's nerve related.

I am just saying that getting other elements under control that might put extra pressure on her system could help lower the pressure on her already compromised nerve and already scarred up or out of alignment pelvis. I'm just trying to think of ways to lower her irritation by 5-10%. Or perhaps the vomiting/nausea and tummy ache could go down. When you've got pain, any improvement is worth it. I had pains from my foods and different pains from my pelvis, and I'm grateful now to only have the pelvic pain instead of two pains... got it?

So... please don't get me wrong HerMajesty or Mom...

does this make sense?

and of course, if she doesn't have food intolerances, then there is no need to change anything.

[HerMajesty]

yes, it makes sense, but more so for an adult than a child because, JMO, food can be so much of an issue with a child that a 5%-10% benefit could be overcome with 50% more emotional stress.
We have an autism gene in my family: My father, brother, and son are all on the autism spectrum. My father realized at age 62 that he was having multiple symptoms of gluten intolerance, which is common with ASD, went off gluten, and was feeling 15 years younger within a month. My brother decided to try it too; lost some excess weight, cleared up his sinuses, and he stopped having migraines. So could my 13 year old son get some health benefit from going gluten free? Probably. Would it be worth the family tension of my imposing one more complex piece of structure on him? Definitely not. I gave him the information (to which he expressed absolute horror at the thought of giving up his favorite foods), so now he will have that piece of information in case he ever becomes self-motivated to act on it.
Kids and eating is a complex issue on an emotional / psychological level: very different than an adult making a personal choice to modify their dietary habits. Mom, you know your daughter best and whether this would be a big deal for her or not. Honestly I shudder at the thought of trying to make my son go gluten free. If you think it would be an easy transition for her, there is no harm in trying. It depends on the child's temperment really.

[pianogal]

Hey, "mom", sorry for this banter back and forth! HerMajesty, thanks for your thoughts and I think you are one wise lady. Just had to explain how this isn't such a sacrifice if you have good replacements.

I live next door to Sprouts. they have gluten free Oreos, gluten free Pretzels, gluten free Bread by Udi's, gluten free Pasta, gluten free brownies, gluten free chocolate chip muffins and cake... and amazingly, they all taste really good and real and some are better than the original items. My husband who hates all diet food really likes them. My cousin said my pancakes tasted better than the wheat ones. It takes time to find the good brands, but I've done it... and I think my daughter age 4 might have to go gluten free because it is a genetic thing... but guess what, she already LOVES my snacks and my gluten free bread and requests them even though we have regular items in the house too.

If you were to deprive a person of all replacement items, yes, it would be torture. But thankfully, we live in a day and age where practically anything is possible... so going gluten free is hardly any change at all for me.

http://www.glutenfreemall.com/?gclid=CO ... gwodhROqvQ (gluten free online shopping)

and if perchance she were truly food intolerant and it were causing her tummy troubles, then the improvement would be more than 10% and I bet she'd be happy with that... (albeit sometimes she'd wish she could have what her buddies are having, but there are lots of kids with food allergies that make changes and survive... but less children with tummyaches constantly occurring. I prefer a gluten free pizza from Z-pizza over a tummyache anyday.) Well, if this isn't an issue, then this is really silly to be talking about, but if it is an issue, I hope hope hope she can get anything resolved so her tummy stops hurting and so she can absorb all her nutrients so that she will have the maximum help with nerve regeneration. Again, if this is not an issue for her, if she were not food intolerant, then never mind. OK, I promise to not talk about this anymore! This is the problem with caring about a little one... they have so little to say and so it makes you worry more about them... and we just have to pray that God will lead Mom to what is wisest for her little one. Obviously HerMajesty and I are both just wanting the little one to be not in any extra discomfort, and we both are more worried about different elements of it. Ah... "Mom" please just take this all with a grain of salt, and just take it to mean that we care.... we really care... and we just both hope your little one gets better.... we hope for that sooooooooo much our hearts are both just breaking and aching, and we will not give up caring.... and praying. And God will not give up on you and your sweet little beautiful girl.

Love you HerMajesty and Mom.

[pianogal]

wow, one last thing here!

See scholarly article below titled: "Celiac disease as a cause of chronic pelvic pain, dysmenorrhea, and deep dyspareunia":
http://www.ncbi.nlm.nih.gov/pubmed/11975966
The same case explained in layman's terms:
http://www.celiac.com/articles/21823/1/ ... Page1.html

To sum up the links: a woman complaining of chronic abdominal and pelvic pain for whom surgery did not help. Celiac diagnosis was confirmed. A gluten-free diet was prescribed, and the patient is now free of symptoms one year later.

This is more than I'd even dream... so... it's worth a try to get tested at least. Now I really am done mentioning this here.

[HerMajesty]

This is true, all the substitute foods might be sufficient for a home schooled, neurotypical (non-autistic) child. The social pressure is much reduced because of the home schooling, and neurotypical kids are a lot less taste / texture sensitive than autistic kids; they might not be bothered by the minor differences in the gluten free products.