Re: Lots of Questions--TO

[Guest guest]

I don't think I have made a formal intro. I am Amber--mom of 1 dd and

soon to be 7 ds. We hs all of them except my 4 yo ds. He has speech

apraxia, hypotonia, ADHD, and developmental delay. I really wanted to ask

some questions on her answer to the original post. You said that

drooling is a sign of brain damage, can you tell me more on this? My ds

has a problem with drooling but I was told it is from the hypotonia and

lack of control in his mouth. His MRI looked completely normal.Another

question I have is about ADHD. I have several cousins with this and one

of them is smarter than average but the other ones are either low normal

or slightly below normal intelligience. My ds IQ shows to be around 80

and he has ADHD also. Is there a study that you are of aware of that

shows ADHD kids are smarter than average? I am not trying to be ugly. I

hope I don't sound that way. I am just curious on your findings. We

have not done as much testing as most of ya'll on here so I am lesrning

quite a bit. We will be seeing a geneticist next week, so maybe I will

know more then. Thanks so much for your help.Amber

--

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[Guest guest]

Amber I was repeating back what this neurologist said and some now

think I said it. By now perhaps you've read some of the other

messages sent out about this -a child can have drooling issues for a

number of reasons- pointed out teeth issues which is a very

common one -but oral motor weakness -and my one son's issue crushed

facial nerves are 2 others. Like you said my son that used to drool years and

years ago now (he's now 13) is a gifted and popular student -a funny

talented actor -and wants to be either an " architect or actor " when

he graduates. Yesterday we were out on the boat and the boys and

their friends were rafting off the back and Dakota was the one that was

standing on the raft like he was a surfer riding the waves which is

quite hard to do and takes incredible balance which he has -he's just

hysterical. The other 3 boys including my son Tanner were all

holding on for dear life as they were getting bounced and splashed

while Dakota was standing up like it was nothing. Clearly no brain

damage!

So no if they were the last words on Earth I would NOT say that

drooling is just a sign of brain damage. That neurologist said that

plus a number of other crazy things.

What I do find funny in some way is that nobody pointed out all the

other bizarre things I parroted back as reasons for a different

opinion. (like ADHD is related to autism)

I'd post it all again but clearly it's best to not make a point the

way I did! But it must make that parent feel good to see that many

people outraged over that one comment alone!

=====

[Guest guest]

Not but I am the one who confused that brain damage post.

did not say drooling was a sign of brain damage. There are multiple

causes and she was kind enough to list them in another post.

I did want to mention the IQ thing:

1) IQ testing is far from perfect

2) Neuroplasticity is the ability of the brain to change itself,

adapt to many things, including brain damage. It is a beautiful thing

when a child who was previously underestimated (mine was) gets the

supports he or she needs to shine. I would simply encourage you not

to get stuck on a #. Please consider reading The Brain that Changes

Itself by Dr. Doidge. There are other books like this out there. I

prefer the ones written by neuros as it seems some of what has been

learned about this is fairly new and very exciting. PBS had a neuro

on just last night (Dr. Amen???) who talked about how to help your

brain. A lot of what is done here is mentioned (omega 3 fatty acids)

and the importance of blueberries in diet and using your brain,

mental fitness, etc. When your child gets a label or just is

struggling in some area, suffers a regression, etc. it is often hard

as parents to keep hoping. A friend recently told me he cannot hope

his son would get better because he simply could not bear the

disappointment if he didn't so he is doing the things the doctor says

but not holding out much hope. I do not blame him, this stuff is

hard. Thing is, as a parent, he is in one of the best positions to

engage his child and help with the mental fitness part. This need not

be formal teaching but play...the trampoline, etc. I hope he will

consider it as stuff like that is a great stress reliever for the

parent as well.

I wish you luck and I again apologize for misreading 's post and

causing confusion.

>

> I don't think I have made a formal intro. I am Amber--mom of 1 dd

and

> soon to be 7 ds. We hs all of them except my 4 yo ds. He has

speech

> apraxia, hypotonia, ADHD, and developmental delay. I really wanted

to ask

> some questions on her answer to the original post. You said

that

> drooling is a sign of brain damage, can you tell me more on this?

My ds

> has a problem with drooling but I was told it is from the hypotonia

and

> lack of control in his mouth. His MRI looked completely

normal.Another

> question I have is about ADHD. I have several cousins with this

and one

> of them is smarter than average but the other ones are either low

normal

> or slightly below normal intelligience. My ds IQ shows to be

around 80

> and he has ADHD also. Is there a study that you are of aware of

that

> shows ADHD kids are smarter than average? I am not trying to be

ugly. I

> hope I don't sound that way. I am just curious on your findings.

We

> have not done as much testing as most of ya'll on here so I am

lesrning

> quite a bit. We will be seeing a geneticist next week, so maybe I

will

> know more then. Thanks so much for your help.Amber

>

> --

> See Exclusive Videos: 10th Annual Young Hollywood Awards

> http://www.hollywoodlife.net/younghollywoodawards2008/

>

>

>

>

[Guest guest]

Amber,

Since you are just embarking on this process, I just wanted to let you know a

little about my experience in hopes that it may help you down the line. My son

is 13 years old now and just about recovered from apraxia/dyspraxia, hypotonia,

etc..... pretty much all of the things that you are watching in your little

girl.

Firstly, I wanted to caution you on IQ tests for our little guys. The IQ test

tends to really be skewed unfavorably for our kids and you really need to 'look'

at the different elements that were tested. When my boy was little, he showed a

composite IQ of about 97. His verbal IQ at the age of 7 was 125 and his

nonverbal IQ was really low which brought the 'average' score downwards.

Physically my son was a mess due to the global hypotonia.

We did the regular system therapy for many years and it did not help much.

Finally when he was 11, I got really frustrated at his progress and took him to

The National Association for Child Development. http://www.nacd.org They

designed a home therapy program for him that completely changed his life around.

They identified an auditory processing issue with him. We changed his diet,

worked his tonal processing and worked his short term auditory memory. Within 8

months of doing this, his IQ increased immensely and today has an above average

IQ.

For the hypotonia we worked his body..... piece by piece, limb by limb and all

of his facial muscles, including that pesky tongue.... every single day. We did

a lot of strength training and really attacked the hypotonia. Today, he is

pretty much a normal kid who is becoming quite successful at school and popular

with other kids.

While at times he can struggle with clarity of speech still; others don't really

notice it much and my son along with 's son has truly conquored most of the

symptoms associated with this disorder.

So..... I wanted to urge you not to give up. Don't see the IQ as not changing

through time and therapy. These tests are 'subjective' and our kids don't test

in the same manner as other children because they have such severe physical

limitations.

The key is to find the right diet for your particular child; the right therapy

for your particular child and the right biomedical interventions for your

particular child.

There are some things that I tried early on.... didn't see immediate benefits

and so gave up on them. One of these was vitamin E and the fish oil. These

were interventions that did not work for my son initially but did work later on.

Sometimes you need to change up the supplements over time and 'try again'.

Today, I simply love how vitamin E affects my son but he needed more then that.

Since your son has hypotonia, I strongly urge you to get his carnitine levels

checked. When did thorough metabolic testing we discovered extremely low

carnitine, vitamin A, Omega 6, COQ10 and low glutathione.

When I began supplementing with the carnitine, my son was able to properly

absorb the good fats into his system. As he was older, this did not happen

overnight but through a period of about 3-5 months of supplementation. Because

we had done the testing, I KNEW that his body desparately needed these items to

thrive.

So please don't see that low IQ as unchanging...... Again, our children don't

necessarily test 'well' but that doesn't mean that your daughter is not in

there, waiting to be release from her prison of this disorder so that she can

reveal her true self to the world.

Today, the prognosis for my son is very different from where we started. Read

all that you can get your hands on and begin a home therapy program that you can

do with her every single day at home. Work her body and work her strength and

slowly but surely she will get better and better.

See the child inside and help her to find her abilities.... this is 'doable' and

you will be amazed at the changes she can make through time.

Good luck and never give up.

Janice

Mother of Mark, 13

[Guest guest]

Thanks to both of you for your quick responses.

I just wanted to make sure I wasn't missing something on the brain

damage part.

Yes-I do believe IQ testing is far from perfect. I also believe my

child has a much higher IQ than " they " say. I don't understand how

they can get a very accurate test out of such a young and nonverbal

child.

Thanks so much for your help--Sorry I got confused on your post .

Amber

hsm to Snow White and the 6 soon to be 7 Dwarfs