Speaking of IQ tests...Re: Apraxia and Slow Processing

[Guest guest]

Jane,

I love when lurkers come out. They are the smartest fols who never

realize how much we can learn from them. What follows is something I

sent to a friend. If you have more questions about our story email me

offlist. My sincere hope is that my son gives me grief via fully

articulated words on how much he dislikes the fact that I aired his

dirty laundry so publicly:)

He was a puzzle from the beginning, even in utero. The pregnancy was

strange but since my first one was really strange I figured the one

with him was normal. Little did I know.

I have typically off the charts low cholesterol yet during the

pregnancy with it was 244. I was eating like someone with an

eating disorder. Had head and ear pain constantly and was starving

every single minute. I ate like a horse yet lost 5 pounds during the

third month of pregnancy. I passed out during the glucose tolerance

test yet did not have diabetes. I also had bloody stool.

The day was born everything was almost too easy. He slept A

LOT. Too much. I always had enough milk but he did not drink much. He

was floppy. He was jaundiced but so was and I was as a baby

too. He was cute and fat and appeared healthy but something inside me

was screaming " What is wrong? " Still I was calm as they told me his

heart numbers were bad and he had stridors and a murmur. Many in my

family had this and it all turned out fine. That was the story of

. All of these things had been seen in the family but not in

one person. Still, no lights were required for the jaundice, the

heart numbers improved and the stridors were deemed OK.

Still, all was not right. He consistently missed every single

milestone from the very beginning by at least two weeks. He slept too

much. When awake his blue lips quivered (siezure?). He was always

crying and none of the usual...diaper change, bottle, cuddle,

satisfied him. He had what has since been described to me as autistic

poop...yellow tan soft serve. That was his formula poop or breast

milk poop no matter what I ate, cut out, etc. Later it became, and I

swear I thought this long before I read about metal, metallic. Tummy

time was near impossible due to screaming with what I now believe to

be belly pain. When we tried to comfort him he arched his back and

screamed the encyphylitic cry. His ears were very sensitive. Fluid

but no infection. I think that was the atypical GERD thing.

At 5 months I took him to the dr. I simply said, he is miserable,

maybe it is his ears. Honestly he screams all the time but this is

worse. " She sent me to the hospital fearing meningitis because of the

way he tilted his head. He did that all the time. I knew it was not

meningitis but went anyway. I refused the spinal tab and they found a

UTI. He got IV antibiotics and was downright charming. Prior to that

he hated strangers and was not always fond of us. It was more like we

were the least objectionable choice. That hospital stay was the

fondest memory I have of him under 1. He smiled at everybody. He

cooperated. I really thought maybe we caught something that had been

going on for a while. He smiled back at me as I read to him and was

tickled pink. That was the first time in his life he was off the

fluoridated nursery water. I brought him home and within a day it was

back to screaming. Despite more drs visits, one to a neuro about

language as I could tell he did not babble enough, never made the m

or g sound, etc. absolutely nothing changed.

At 18 months we went for a beach vacation. He walked and said his

first words on the same day. He was also very happy. That was the

second time in his life that I was unable to give him that

fluoridated nursery water. At home he did scream more but way less

than before. We suspected he had a belly thing that movement was

helping.

Looking back there were swallowing problems and he drank way too much

milk to compensate for the needed calories. He choked on a lot of

stuff, including liquids.

As big as he was he was fragile. Older relatives often said we babied

him and then when they picked him up you saw their faces drop...Low

Tone.

There never was a language explosion and he was there and not there

depending on the day. He was timid and shy in that scarey way that

you know is not right. There were few people he would " let in. "

EI came at 21 months and he barely qualified but everyone agreed

something just was not right. The speech was his biggest delay but he

only got an OT and a DI. Therapy helped but consistency was an issue

and there was no improvement in language at all.

At age 2 I called EI and requested a speech therapist and hired a

private therapist and had an ENT check his ears (this was done at age

1 and he was cleared). Ears were fine, unifected fluid but because he

had a speech delay the ENT suggested tubes. I waited 3 months to get

them so I could see where therapy took him. He was charming and

coming around with the individual therapists from a sensory

standpoint. You could tell he loved the extra attention. The thing

was his hand issues, tone issues, and speech issues remined mostly

unchanged. He would go two steps forward and one step back with

receptive language. Now granted, we did not ask a lot of him which

was part of it but you could tell there was motor planning stuff

going on.

He did say stuff though here and there...around the time I put my

foot down and cut back the milk so he'd eat more. He regressed when I

started waivering and was either sick or gassy for a good two months.

Looking back he was always gassy but more on milk. He was not

typically sick though. When he was sick he seemed actually happer

which I found strange.

At 2 years 3 months he got the tubes. He gained 12 words in one

day...so he doubled his vocabulary. The next day he lost most and had

a very bad delayed reaction to the anesthesia. He freaked out and

screamed in an angry way I'd not heard before...it was odd. And he

stunk, his whole room actually, of bad Old Spice. He clamed down as

soon as I removed hm from his fleece pjs. This was on top of the

difficulty they had waking him.

When he lost words after a surgery that was supposed to help him I

went into high gear. I had been reading all along, thought apraxia

earlier but set it aside. I reread the late talker and found my boy

on those pages. I then started on the board and wrote up a big

history to find my answers. In talking with my cousin and reviewing

it I thought he had GERD stuff, especially since his hhistory was

starting to match what was happening to me and I was in the proces of

getting scoped. She mentioned celiac. I looked it up, reviewed it and

really thought that was the deal. I reviewed the board and saw people

had celiac-like stuff going on and decided to try a GI. No

aapointments until Oct. Then I talked to a celiac expert's nurse. No

appointments there until 1/08. She gave me a list of labs to get. My

pediatrician ordered them. It then dawned on me that daughter, who

was ahead in milestones and was an easy baby, had celiac symptoms

too. I went to the pediatrician for labs for daughter. She refused. I

fired her. My cousin got the labs and though they were technically

negative something was up. Daughter was severely D deficient. Nurse

decided we needed in and she said she would call with first opening.

In the meantime I decided we were going GFCF. I had no plan so it was

apples, carrots, eggs and fritos for a few days. A few days after

that we got into the GI. Her fifteen minute assessment was celiac for

daughter and EE and/or celiac for . She wanted to scope and

told me to feed them some gluten and milk daily until the scope. I

did it for two days and all the bad behavior I lost on that diet

returned. I just knew they would get sicker so I went GFCF and

eventually SF. The scheduler called and I blew it off. I wanted to

see what the diet could do and at that point had already seen a

ridiculous amount of improvement in bowels, pee, learning and

behavior. I did not feel like harming their bowels justso she could

see something we already knew we had. Still, said we needed

to know because of complications. She did tell me though that based

on those labs we had a 3% chance of scoping positive. So, I asked the

nurse to put off the scope and requested genetic testing. I got it

for DQ2 and 8 but not DQ!. The tests are $32,000 and our income is

less than double that. I am in the midst of figuring that part out.

It looks like daughter and sons will be covered and done via Labcorp.

If that is the case I just might do all 4, complete with DQ1 at

Direct labs for a total of $2,000 since they also use Labcorp. A

little more investigation needed.

Here is what I saw in :

1) Loss of milk: Eyebrow lift, newer happier kid, better poop.

2) Loss of gluten: poop got more normal.

3) Loss of nursery water: Eyebrows moved higher up the head...it was

crazy and he was thrilled.

We stayed with this for over 2 months and it led to writing, bike

riding, words and more of them. First the words came. There were a

lot but many catchalls and random speech. He also had articulation

issues one day and none the next...that was strange. He had more

focus but still wanted to flip around in books. Honestly, the focus

change is something oly I would notice. He was focused before during

all therapy sessions...while they did all the work. Now he was in on

the action. One of his delays was that he pointed late. He also

seemed not to see things we pointed out. Now he pointed with purpose

and was more engaged. Almost all tone issues gone. We have photo poof

of that.

4) Fish Oil: Honestly, no big wow moment as I gave RDA or less but

when off you could see the difference. Fish oil gave us complete

focus, way more social behavior than ever with everyone and he sat

for a book and let us read page to page. He also threw way less

tantrums and communicated better with the words he knew and added a

sign if he did not. His recptive skyrocketed during all of this.

5) Calcium: GFCFSF is an extreme diet. I tried to cover the vitamins

by diet and sometimes a multi but worried about calcium. Plus I read

that calcium pulls out fluoride which I suspected was part of this.

So, I bought a mild calcium/magnesium supplement liquid from Kirkman

said to be safe, had the least lead in it, and was best absorbed.

That pulled buckets of brown pee out of him, 5 lbs of grey sludge and

brown stuff poured out of his teeth as his shiners moved down on his

face. It was terrifying. The thing was he smiled the whole time like

he was relieved. I kept filling him up with food to be sure he was

not dehydrated and he never got so much as a fever. I gave him 2 tsp

that day which is RDA. It truly scared me silly but by days end I had

normal brown formed stool from him. I gave him 1 tsp the next day and

the sludge was brown but the typical type I had on fish oil (I

believe based on that fish oil helps move some of the gunk out of the

gut while healing it). I then waited 3 weeks to do any more. I have

done it since without harm but the truth is he gets enough calcium in

diet, even if fluoride is an issue it must come out slow and steady

so his bones do not crumble and his gut and kidneys do not explode.

He has not had berown pee again.

So, you see, I think a few things happened to bring my boy to this

place.

1) The fluoridated water I drank with him in utero was strike one.

2) It in him and its ability to trap metal put him at a disadvantage

gutwise and that was made worse by aluminum formula and vaccines.

3) The vaccines effect was worse because fluoride is particularly

good at trapping aluminum. He got almost exclusively aluminum laced

vaccines. Then I gave him tylenol afte r the vaccines...another metal

trapper.

4) On top of this my sweet boy had a milk allergy, inherited from me.

Celiac or celiac-like condition was also there. Testing will answer

that one.

What the future holds.

1) My boy will beat what is left of his dyspraxia.

2) We will stay on this diet until he leaves my home and I can't

control it regardless of the testing. If the testing is negative for

celiac I will allow mild cheating outside the home when I sense

rebellion but otherwise, we will eat this way as it prevents MS, and

other autoimmune stuff and on top of this alopecia is in my family.

3) Aside fom the diet I will not be the mother hen. The goal was

always for my son to find his place in the world. He canot do that

with me smothering him.

My daughters story and mine would keep you up all night so for now I

will leave it at .

Take care!

Liz

>> We finally had our appointment with our 7

year old daughter today and got our official diagnosis today of

dyspraxia, (obviously apraxia of speech as well which we have known

since age 3) but one thing that came up that must have passed me by

in all the early testing was that she has an IQ of 70. Even thought I

must have read it back in 2006 when they tested her, it apparently

never sunk in to me. I am dumbfounded. I am certain her intelligence

is not below average. She has amazing problem solving skills and

although she has to work a heck of a lot harder at some things she

has never shown to be lacking in intelligence. Is this just a skewed

test for our kids?> > Barbara

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