mythreesuns

The rheumatologist said that my joint pain was not likely to be related to something like Chrone's or colitis (for which I'm having a colonoscopy next month) because I don't get red, swollen joints.

He gave me the pressure point test, reviewed all my records, took a detailed history, and said this is really what he thinks I have. Diarrhea is very common with FM, apparently.

Well, I'm still waiting to hear from EnteroLab, and the rheumy did not convice me that I do not have celiac or a gluten sensitivity. But he did convince me that if I DID have it, it's really screwing with me at this point! LOL

On the plus side, now I won't be hugely disappointed if the EnterLab tests are negative, like every other test I've had so far.

I'll keep you posted! I should hear back from EnteroLab this week or next.

I think the tests are a good idea but I would ask if he could do an endoscopy at the same time he does the colonoscopy.

I've already had the endoscopy (doesn't anyone read the signatures?! LOL) and the biopsies for celiac were negative. He's not even doing them for the colonoscopy because he's positive I don't have it.

His b-day is just short of the Sept 1st cut off, meaning even though he's now 4yrs old, he won't even start Kindergarten for another 2 years. When would you suggest contacting the district?

Once a special needs child turns 3 they are eligible for services through the school district. I would call them, or better yet, send them a certified letter, as soon as you can get to it. Once you send a letter they are required to look into it.

Again.... I really have no idea what I'm talking about, other than identifying to my own specific issues. SO, I could be 1000 miles off the mark on that one.

LOL How's that for a disclaimer?

Anyway, where he pushed was on my lower left abdomen, right where he said my decending colon was. He was ok with me not taking the Prevacid if I wasn't having reflux or heartburn.

Somehow, I missed all of your responses until today! So much for the "View New Posts" feature....

Anyway, thanks for the info. I'm glad now that I didn't have it for lunch the next day, as was my plan.

Well, on the plus side, I did have a reaction to it, so that sort of confirms my sensitivity to it, right?

So much for my stupid GI telling me "You do NOT have celiac. I tested you twice for it. [he was referring to the blood tests and the endoscopy biopsy] It's impossible for you to have it."

Has anything changed on the gluten-free diet? Are you still consuming dairy/casein? I didn't get completely better until eliminating casein as I have the same reaction to it as to gluten.

Have any of your test results indicated celiac at all (sorry, 11k members, I can't remember!)? If you are having no dietary response and no test showed it, then it might just be something else.

Well, I've been off casein since before I went off gluten (see sig... ) so it can't be that. I suspected that soy was giving me trouble so I stopped using soy milk (every morning in my cereal and in my coffee) and a couple of days ago, I suspected I may have been glutened by one of those pre-cooked chickens from Sam's.

As of this date, no test has indicated celiac for me. I'm still waiting for my Enterolab results. Again, see sig... If EnteroLab comes up with nothing, I'm gonna be majorly stumped!

I have had some improvement with the diet. First of all, I have NO reflux/ heartburn anymore, and I've been off Prevacid for more than a week now. Previously, I couldn't go 2 days without it. Also, the diarrhea is less severe. I don't have the horrible stomach pains that I used to have, and bloating only comes with suspected milk or gluten contaminations. I'm back to diarrhea every day right now, but it's still not as bad as before. It's more soupy than watery. Sorry for the TMI

He got me questioning myself.....for about 5 minutes! LOL

Anyway, when he pressed down on my abdomen I almost lept off the table because it hurt so bad.

So what do you think I should expect from these tests? I know about the prep but I'm wondering what sort of results I could get. Just what could they find?

I'm still having diarrhea on the gluten-free diet...been about 2 mos now. He's looking for colitis and Chrone's.

Oh--what about transitioning from an Aspie school to college? Is there any literature about if these kids have an easier time? Or who knows, maybe a harder time?

Well, every kid is different, as you know. Some kids just will not be able to handle anything other than vocational training. My son is VERY intelligent and will do very well in a technical, engineering, or programming field.

I don't know about literature on this...I'd have to do some research. There are programs available (especially if your son is involved in your state's equivalent of NJ's Division of Developmental Disabilities) that will help young adults get integrated into the college setting or job setting.

I'm not *quite* there yet with my son, so I don't know that much about those programs yet.

Where is this school for Aspies? Is it the only one of its kind?

The one my son goes to is in NJ. In Burlington County. Just so happens to be in our district, but kids from all over the state go there.

There are aspie schools in many areas. It has done WONDERS for Alex. They let him pace himself and work in his own way. He pretty much teaches himself the math and has flown ahead in that area. The language is tougher for him so they go slower.

This year, his class has 7 kids and 4 teachers! There are individual "centers" where subjects are taught, and its one teacher to about 3 kids in each center. There is a lot of "free time" which they use to work on social skills. The kids think they're just playing video games, chess, or playing on the internet, but really they're learning how to interact with others.

"2 y.o. with low sensory registration and limited language skills whose primary language is screaming"

That was a quote from me. We did have his hearing checked when he first started having speech problems. Although he did poorly on the behavioral tests (probably because of his low sensory registration) he aced the ABR.

As to the information you posted about your son--thanks so much for giving me a glimpse of what I can hope for for my 12 y.o. aspie. He's in middle school right now, and although he's in a private school just for aspies, I do worry about how he'll handle the high school and college years.

He sounds a lot like your son, as far as the loyalty, the rule following, and not fighting back. I won't recount the incidents (because it still hurts to think of him going through them) but I remember many times how he suffered at the hands of other students, many of whom he thought were his friends.

whats your favorite basic store bought white bread thats also dairy free?

Kinnikinnik bread isn't too bad, but it's spongy if it's not toasted, so it'd be perfect for grilled cheese.

Whole Foods also has a white bread that's not bad.

You have to look in the frozen food section for both of these breads. Kinnikinnik is only availabe at certain stores (I found one near me from their website) and Whole Foods bread is obviously at Whole Foods.

Discovery criteria for aspie by Attwood and Gray

A. A qualitative advantage in social interaction, as manifested by a majority of the following:

1. peer relationships characterized by absolute loyalty and impeccable dependability

2. free of sexist, "age-ist", or culturalist biases; ability to regard others at "face value"

3. speaking one’s mind irrespective of social context or adherence to personal beliefs

4. ability to pursue personal theory or perspective despite conflicting evidence

5. seeking an audience or friends capable of: enthusiasm for unique interests and topics;

consideration of details; spending time discussing a topic that may not be of primary interest

6. listening without continual judgement or assumption

7. interested primarily in significant contributions to conversation; preferring to avoid

"ritualistic small talk" or socially trivial statements and superficial conversation.

8. seeking sincere, positive, genuine friends with an unassuming sense of humour

B Fluent in "Aspergerese", a social language characterized by at least three of the following:

1. a determination to seek the truth

2. conversation free of hidden meaning or agenda

3. advanced vocabulary and interest in words

4. fascination with word-based humour, such as puns

5. advanced use of pictorial metaphor

C. Cognitive skills characterized by at least four of the following:

1. strong preference for detail over gestalt

2. original, often unique perspective in problem solving

3. exceptional memory and/or recall of details often forgotten or disregarded by others,

for example: names, dates, schedules, routines

4. avid perseverance in gathering and cataloguing information on a topic of interest

5. persistence of thought

6. encyclopaedic or "celiac disease ROM" knowledge of one or more topics

7. knowledge of routines and a focused desire to maintain order and accuracy

8. clarity of values/decision making unaltered by political or financial factors

D. Additional possible features:

1. acute sensitivity to specific sensory experiences and stimuli, for example:

hearing, touch, vision, and/or smell

2. strength in individual sports and games, particularly those involving

endurance or visual accuracy, including rowing, swimming, bowling, chess

3. "social unsung hero" with trusting optimism: frequent victim of social

weaknesses of others, while steadfast in the belief of the possibility of genuine friendship

4. increased probability over general population of attending university after high school

5. often take care of others outside the range of typical development

I second that! Thanks for thinking of it, Ursula.

However, since starting Topamax, I haven't had a single migraine. If yours get really bad, it might be worth a call to your doctor...

Thanks, I do take Relpax for the migraines as a PRN. It works pretty well. But some days the migraine hits on the way home.....

Hineini is Hebrew for "here I am"...

I'm glad you explained that because all I could think of when I saw your name was "heiney" ya know...like rear end.

Girl Ninja or Girl Head are hubby's affectionate nicknames for me.

I'm not sure I want to know what either of those mean.

We're in NW Burlington Co. now.

How about you?

Interesting....I grew up in Gloucester County, and now I live in Burlington County. Not *too* far from Marlton, but a little more toward the shore.

I work in Trenton so I probably drive by your house every day. I'll wave on the way home tonight!

I was wondering what the differences are with Aspergers and Sensory Integration-they both seem so similar.

Very many kids with Asperger's do have SID, but SID doesn't have many of the components of AS. From Open Original Shared Link

DSM-IV DIAGNOSTIC CRITERIA FOR ASPERGER'S DISORDER

A.Qualitative impairment in social interaction, as manifested by at least two of the following:

(1) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction

(2) failure to develop peer relationships appropriate to developmental level

(3) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)

(4) lack of social or emotional reciprocity

B.Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:

(1) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus

(2) apparently inflexible adherence to specific, nonfunctional routines or rituals

(3) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)

(4) persistent preoccupation with parts of objects

C.The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.

D.There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).

E.There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.

F.Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.

GILLBERG'S CRITERIA FOR ASPERGER'S DISORDER

1.Severe impairment in reciprocal social interaction

(at least two of the following)

(a) inability to interact with peers

( lack of desire to interact with peers

© lack of appreciation of social cues

(d) socially and emotionally inappropriate behavior

2.All-absorbing narrow interest

(at least one of the following)

(a) exclusion of other activities

( repetitive adherence

© more rote than meaning

3.Imposition of routines and interests

(at least one of the following)

(a) on self, in aspects of life

( on others

4.Speech and language problems

(at least three of the following)

(a) delayed development

( superficially perfect expressive language

© formal, pedantic language

(d) odd prosody, peculiar voice characteristics

(e) impairment of comprehension including misinterpretations of literal/implied meanings

5.Non-verbal communication problems

(at least one of the following)

(a) limited use of gestures

( clumsy/gauche body language

© limited facial expression

(d) inappropriate expression

(e) peculiar, stiff gaze

6.Motor clumsiness: poor performance on neurodevelopmental examination

(All six criteria must be met for confirmation of diagnosis.)

While I think removing gluten can improve issues related to SID and ADD, I don't believe it's in any way a "cure-all". They are both far more complicated than that. The flip side is that a gluten-free diet is non-invasive and healthy so it's a win-win situation. Considering there's been so many responses to this topic I'll ask...what do you all think?

Well, I may be putting all my kids on a gluten-free diet, but not for their neurological issues, although I know there is a correlation between implementing the diet and improved functioning. I know too many families who have tried to implement the diet and just got undermined left and right by the school, neighbors, or well-meaning family.

But if I do it for a MEDICAL reason, they can't be so flippant, eh? I mean, I got a letter from the school telling me there was a child in my son's class who has a peanut allergy so please be aware when we're sending food to school for parties and such. I mean, if they have to do that for a peanut allergy, then they have to do that for a gluten allergy, eh?

Anyway, that wasn't what I had intended on posting about. LOL Honestly, I'm trying to figure out my own issues with gluten before I subject my children to the diet. And they are having digestive issues, so I definitely have plans to think about the diet for them. Um, was that non-commital or what!? LOL

I'm waiting to see my EnteroLab results, and then I'm sure I'll start getting my kids tested as well. Whether or not I do the diet will be based on their medical concerns, not their behavioral concerns.

Okay, I've been avoiding this thread, knowing I shouldn't. MyThreeSons, if you'd combine your three sons into one, you'd have me. I have AS, TS and almost all the sensory issues in that list (and a few that aren't on that list).

LOL Yes, I did notice that in your signature. I took it as confirmation that my AS son WILL eventually grow up and be able to have a rational conversation...sooner or later....right? LOL

Mine isn't so exciting. I couldn't figure out what our username should be for a certain something so I came up with jams and our last name. J is for my son Josh, A is for me, M is for my dd Megan, and S is for dh Shawn. It was the only thing I could figure out at the time and it has just stuck!!

That is actually very clever!

Makes me feel a little less goofy for ensuring that my 3rd child's name had a 4 letter nickname so he would match the rest of us.

Mine is where I live (love Jersey!) and instead of using "girl"--as in jerseygirl--I used angel just cause I like them

Another Jersey girl! But....you LOVE it????? LOL

North or South (because there IS a difference!)

You know the ones I'm talking about, where they cook a whole little chicken for you and sell it in the plastic try with a cover.

I had some last night at my IL's and now I'm wondering if it's ok. The only thing it said on the package was "Seasoned Pre-cooked Chicken." I think it was from Sam's.

Did I do a boo-boo?

"mythreesuns" is a reference to.....you guessed it, my three sons!

Edited to add: I forgot to mention that the reason why it's mythreesUns instead of mythreesOns is because when I first used that username on WebMD (as soon as I found out my 3rd was a boy) mythreesons was already taken.

Plus, well, I guess, on occasion, they do light up my life.

Is Windex gluten-free?

ROFLAMO!!!!

This happened well before my own personal gluten concerns, otherwise I would've been checking the label! LOL

Given your own family dynamics, you might be able to appreciate this mix:

*12 y.o. Asperger's child who is extremely sensory defensive

*9 y.o. Tourette's child

*2 y.o. with low sensory registration and limited language skills whose primary language is screaming

*33 y.o. with a migraine

*very small sedan

Senosry stimulus that may seem benign to us can be amplified or exagerated 100 fold for someone with SID.

FYI, I agree with all of this, but keep in mind that SID can go the other way as well. I have a 2 y.o. who also has SID, but he is UNDERsensitive to almost every sensation--touch, taste, motion, etc.

This is a kid who LOVED the taste of Windex, didn't respond to sounds not because he didn't hear them but because they didn't always "stimulate" him enough, and cannot sit on my lap without pushing against me just to feel me. He screams because he enjoys the sound. He LOVES to hear others scream as well! We need to schedule in rough play with him because he cannot settle for the night without an enormous input of sensations.

One day he walked around all day with his pinky toe bent back toward the outside of his foot!!! We didn't know it because it didn't hurt him, although I assure you any other child would have screamed the moment it was pushed back by his shoe! That toe has never been the same...

That was on the yeast flakes thread that you asked that.

Doh!

I'm not sure where you live but Fred Meyer/Krogers carries them in the natural food bulk isle. Wild Oats has them in the bulk isle. Co-op have them in the bulk section. Health food stores would probably be the same.

Um, what's a Kroger?

The only 2 choices I have for this kind of food (as far as I know) is Trader Joe's (small selection) or Whole Foods. Whole Foods does have something like a bulk section, so I'll check there. I didn't really know what I was looking for before so I just kept looking in the baking aisle.

You don't have to use them but it gives the "cheese" a more cheesy flavor.

Well, now, that's the whole point, isn't it? I will most definitely NOT be going through all the trouble of blending up cashews if I'm not getting a cheesy flavor out of this whole process. I'm just not that curious. LOL

Okay....I'm stupid...and I'm freaking out!!!!!!!!

Ok, um, you're stupid.

Seriously, though, you have no idea how many times I almost finished my kids' pb&j, or licked my fingers after buttering their toast.

We've all been there, so if you're stupid, then so am I!

Now THIS is more like it!

Steve, I don't know you that well so I'm not here to comment on your state of mind, but I just wanted to say that this OT post is much more refreshing than recent OT debates/bashing/defending/etc.....

The other posts, I'm not touching. Making good-natured fun of a friend? Now I'm all FOR that!

On a totally off topic note I love the pic of your sons, quite a handsome group.

Aren't they though? TOTALLY not biased at all, am I....