Re: Re: was lab results/now Welcome

[Guest guest]

Your welcome, that would be my area of expertise I guess! LOL! Kody receives

gammaglobulin every three weeks too. It helps some but not as well as I had

prayed for. Kody's immune system has always been very bad, he is always,

always, sick and in the hospital. I had always assumed that Kody's learning

problems were from his immune problems, and then since he was 4 his learning

issues became progressively worse, as has his behavior issues. Everyone kept

telling me that his learning can't regress, his IQ won't go down it would go

up, but he is just falling further and further behind and things he knew

yesterday he doesn't know today. I have checked out the website, a lady

on an autism list gave me the website. I have made copies of everything to

bring to my pediatrician. I'd love to bring Kody to Dr. Goldberg but he is

very far away from us, and we have spent so much money on Kody's healthcare

costs that there simply isn't extra to go at this time. We took him to New

York a year ago to see an immune specialist there, and the trip (airfare and

hotel) were donated to us. But still, I know Kody has had the majority of

the bloodwork that Dr. Goldberg suggests done already, and I was hoping that

we could handle things from here with our pediatrician, is that possible or

do you have to go to Dr. Goldberg for a diagnosis?

Please feel free to visit my website for parents of children with multiple

special needs :

www.geocities.com/schmidtzoo/SNAK.index.html

-- Re: was lab results/now " Welcome "

Hi,Diane:

Welcome to the list. Thanks for the great overview of all the IgG's.

Many of us on the list who have " Kids " also have other immune

issues within our families (just as you mention having in yours'). It might

be helpful, if you haven't already, to review the http://www.nids.net site;

a great new tool there is the site map that helps you navigate thru the site

here's that link ---> http://www.nids.net/sitemap.htm

~~~cyn

PS Thanks for all those great links you posted below!

_______________________

--- " Diane Schmidt " wrote:

Hey! I'm new here but I can answer that! So far I only know for sure

that my son has hypogammaglobulinemia, and developemental delays,

epilepsy, asthma, and other learning and behavior problems. But since

the hypogammglobulinemia diagnosis, I do know what those tests are

for!

IgA is the part of your immune system that works in the mucus areas

of your body. Example, your sinuses. If you have low to no IgA you

would be very susceptable to sinus infections, ear infections, and

quite commonly you would have GI infections.

IgG's come in 4 subclasses, IgG 1, IgG 2, IgG 3, IgG4, Not much is

know about IgG 1 and 4, but IgG 2 is what fights bacteria and IgG 3

is what fights viruses. (my son has very little IgG 2 and 3). IgE is

the part of your immune system that causes allergic reactions, this

one you WANT to be low, if you have high IgE you are most likely

allergic to something. IgM istrickier and is one of those things you

don't want to low of but too high is not a good thing either. From

the way I understand it, IgM helps the Ig's fight what they need to

fight. Too little and you can't fight infections and too much and

your body attacks itself and causes auto immune problems. You

can find awesome information on the immune system etc on these two

websites:

http://www..com and http://www.primaryimmune.org

I joined this list because Kody has autistic tendancies albeit very

high functioning. His learning problems are getting much worse, and

his behavior is changing daily. And this list was the first place

that has ever connected his developemental issues with

his immune deficiencies. I am totally floored, and will be bringing

tons of information I copied off the website to my Dr asap!!! January

9th Kody sees a psychologist for the first time, we went that route

because of the behavior, but now I just can't help but think that

this is the root of allhis problems! Amazing. We do have autoimmune

disorders in our family, I have fibromyalgia, and my grandmother had

alzheimers. We also have two older children with ADD. It is

unbelieveable to me how much Kody fits a diagnosis. Wow.

Diane, Mom to Kody age 6.5, Di Syndrome, Hypogammaglobulinemia,

Epilepsy, Asthma, developmental disorders, and learning disorders

Please feel free to visit my website for parents of children with

multiple special needs:

http://www.geocities.com/schmidtzoo/SNAK.index.html

[Guest guest]

Another fabulous website for immune deficiencies is www.immunedisease.com It

has under the physician's tab an awesome online textbook. And under the

products and therapies section you can find an IVIG doseage calculator.

Diane, Mom to Kody

Please feel free to visit my website for parents of children with multiple

special needs :

www.geocities.com/schmidtzoo/SNAK.index.html

-- Re: was lab results/now " Welcome "

Hi,Diane:

Welcome to the list. Thanks for the great overview of all the IgG's.

Many of us on the list who have " Kids " also have other immune

issues within our families (just as you mention having in yours'). It might

be helpful, if you haven't already, to review the http://www.nids.net site;

a great new tool there is the site map that helps you navigate thru the site

here's that link ---> http://www.nids.net/sitemap.htm

~~~cyn

PS Thanks for all those great links you posted below!

_______________________

--- " Diane Schmidt " wrote:

Hey! I'm new here but I can answer that! So far I only know for sure

that my son has hypogammaglobulinemia, and developemental delays,

epilepsy, asthma, and other learning and behavior problems. But since

the hypogammglobulinemia diagnosis, I do know what those tests are

for!

IgA is the part of your immune system that works in the mucus areas

of your body. Example, your sinuses. If you have low to no IgA you

would be very susceptable to sinus infections, ear infections, and

quite commonly you would have GI infections.

IgG's come in 4 subclasses, IgG 1, IgG 2, IgG 3, IgG4, Not much is

know about IgG 1 and 4, but IgG 2 is what fights bacteria and IgG 3

is what fights viruses. (my son has very little IgG 2 and 3). IgE is

the part of your immune system that causes allergic reactions, this

one you WANT to be low, if you have high IgE you are most likely

allergic to something. IgM istrickier and is one of those things you

don't want to low of but too high is not a good thing either. From

the way I understand it, IgM helps the Ig's fight what they need to

fight. Too little and you can't fight infections and too much and

your body attacks itself and causes auto immune problems. You

can find awesome information on the immune system etc on these two

websites:

http://www..com and http://www.primaryimmune.org

I joined this list because Kody has autistic tendancies albeit very

high functioning. His learning problems are getting much worse, and

his behavior is changing daily. And this list was the first place

that has ever connected his developemental issues with

his immune deficiencies. I am totally floored, and will be bringing

tons of information I copied off the website to my Dr asap!!! January

9th Kody sees a psychologist for the first time, we went that route

because of the behavior, but now I just can't help but think that

this is the root of allhis problems! Amazing. We do have autoimmune

disorders in our family, I have fibromyalgia, and my grandmother had

alzheimers. We also have two older children with ADD. It is

unbelieveable to me how much Kody fits a diagnosis. Wow.

Diane, Mom to Kody age 6.5, Di Syndrome, Hypogammaglobulinemia,

Epilepsy, Asthma, developmental disorders, and learning disorders

Please feel free to visit my website for parents of children with

multiple special needs:

http://www.geocities.com/schmidtzoo/SNAK.index.html

[Guest guest]

There is in fact an IVIG doseage chart but the kids under dr goldberg's protocol

receive IMGG that is intramuscular gamma globulin

Re: Re: was lab results/now " Welcome "

Another fabulous website for immune deficiencies is www.immunedisease.com It

has under the physician's tab an awesome online textbook. And under the

products and therapies section you can find an IVIG doseage calculator.

Diane, Mom to Kody

[Guest guest]

Interesting, do you know why he uses IMGG? Based on what I know about

immune deficiencies, IVIG works more effectively than IMGG and IMGG is not

only more painful but considered an outdated therapy by the Immune

Deficiency Foundation. Curious to know why Dr. Goldberg choses IMGG over

IVIG.

Please feel free to visit my website for parents of children with multiple

special needs :

www.geocities.com/schmidtzoo/SNAK.index.html

-- Re: Re: was lab results/now " Welcome "

There is in fact an IVIG doseage chart but the kids under dr goldberg's

protocol receive IMGG that is intramuscular gamma globulin

********************

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

My son recieves gammaglobulin every three weeks (IVIG, not IMGG). Kody gets

it because he pretty much has no functioning immune system. He has Di

Syndrome and also hypogammaglobulinemia (which is basically no IGG's and no

IGA's). He has gotten IVIG for two and a half years now. I am amazed that Dr

Goldberg prefers IMGG over IVIG. I've spent a long time researching IVIG

ever since Kody's immune deficiencies were diagnosed, and in every instance

IVIG is the preferred way to go, safety wise, effectiveness, and even pain

wise. I am sure he has his reasons, I'd sure like to know them! Every

immunologist we have seen, and we have seen the leading primary immune

deficiency specialist in the country as well, all prefer IVIG. Interesting.

I don't know about a cost difference, IMGG was never even an option as far

as Kody's specialists have been concerned. Yes, IVIG is expensive, but if

your child has an approved diagnosis for IVIG then it is covered under

insurance. If your child does have immune problems, low IgG or whatever,

they would qualify. As for painful, I hear that IMGG is extremely painful.

IVIG on the other hand, the only pain involved is getting the IV started,

and Emla cream works wonders for that. Kody has a port now too so that helps

access easier (he needs IV antibiotics frequently too). There are some side

affects to the IVIG, but they are rare and Kody has never experienced them.

With IVIG the gammaglobulin gets to where it has to go much easier and

effectively than when it is injected into a muscle. Just my two cents, and

again I have no idea why Dr Goldberg prefers IMGG, he most likely has good

reasons, I just know in the PID (primary immune deficiency) world IVIG is

definately the most preferred course of treatment.

Diane, Mom to Kody

Please feel free to visit my website for parents of children with multiple

special needs :

www.geocities.com/schmidtzoo/SNAK.index.html

-- Re: was lab results/now " Welcome "

we are considering gammaglobulin for my 4 year old. if i may ask- why

did your son reaceive it? how often? how painful is it? how has it

helped the most? thank you

********************

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

Oh I forgot, IVIG helps Kody the most because he simply cannot fight

infections by himself. He doesn't have enough IgG on his own to do so.

Without his IVIG he would get never ending bouts of pneumonia (he had 7 in 4

years), he had osteomylitis, cellulitis, bronchitis, upper respiratory

infections, ear infections, sinus infections, strep infections, and various

other weird things, all more times than I can count. And I mean that

literally. There was a period of time before IVIG that I would have Kody

into the pediatrician 3-4 times a week each time with a new infection. He

has been hospitalized more times than I can count. He uses IV antibiotics

frequently etc. All this is much better now. The longest he has ever gone in

his life without an infection was 9 weeks last summer. Now since IVIG he

averages getting an infection literally days before his IVIG infusion so

about every 3 weeks or so. Which again is way better than 3-4 times a week!

Diane

Please feel free to visit my website for parents of children with multiple

special needs :

www.geocities.com/schmidtzoo/SNAK.index.html

-- Re: was lab results/now " Welcome "

we are considering gammaglobulin for my 4 year old. if i may ask- why

did your son reaceive it? how often? how painful is it? how has it

helped the most? thank you

******************

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

Diane,

Also, welcome - and do as suggests - visit the websites listed. Do

look out for the NIDs bloodwork-up link - that will list all the tests Dr G

orders before your first consult - a lot are Immune panel and allergy and

antibody tests - and judging from your note, you may have done a lot of

these already! Sounds very much that you have already concluded that your

child may fit a diagnosis.

So what exactly are Di Syndrome and Hypogammaglobulinemia? I can kinda

guess the second one. Would be interested to know more if you have a moment

to spare,

best wishes

Re: was lab results/now " Welcome "

Hi,Diane:

Welcome to the list. Thanks for the great overview of all the IgG's.

Many of us on the list who have " Kids " also have other immune

issues within our families (just as you mention having in yours'). It might

be helpful, if you haven't already, to review the http://www.nids.net site;

a great new tool there is the site map that helps you navigate thru the

site, here's that link ---> http://www.nids.net/sitemap.htm

~~~cyn

PS Thanks for all those great links you posted below!

_______________________

--- " Diane Schmidt " wrote:

Hey! I'm new here but I can answer that! So far I only know for sure

that my son has hypogammaglobulinemia, and developemental delays,

epilepsy, asthma, and other learning and behavior problems. But since

the hypogammglobulinemia diagnosis, I do know what those tests are

for!

IgA is the part of your immune system that works in the mucus areas

of your body. Example, your sinuses. If you have low to no IgA you

would be very susceptable to sinus infections, ear infections, and

quite commonly you would have GI infections.

IgG's come in 4 subclasses, IgG 1, IgG 2, IgG 3, IgG4, Not much is

know about IgG 1 and 4, but IgG 2 is what fights bacteria and IgG 3

is what fights viruses. (my son has very little IgG 2 and 3). IgE is

the part of your immune system that causes allergic reactions, this

one you WANT to be low, if you have high IgE you are most likely

allergic to something. IgM istrickier and is one of those things you

don't want to low of but too high is not a good thing either. From

the way I understand it, IgM helps the Ig's fight what they need to

fight. Too little and you can't fight infections and too much and

your body attacks itself and causes auto immune problems. You

can find awesome information on the immune system etc on these two

websites:

http://www..com and http://www.primaryimmune.org

I joined this list because Kody has autistic tendancies albeit very

high functioning. His learning problems are getting much worse, and

his behavior is changing daily. And this list was the first place

that has ever connected his developemental issues with

his immune deficiencies. I am totally floored, and will be bringing

tons of information I copied off the website to my Dr asap!!! January

9th Kody sees a psychologist for the first time, we went that route

because of the behavior, but now I just can't help but think that

this is the root of allhis problems! Amazing. We do have autoimmune

disorders in our family, I have fibromyalgia, and my grandmother had

alzheimers. We also have two older children with ADD. It is

unbelieveable to me how much Kody fits a diagnosis. Wow.

Diane, Mom to Kody age 6.5, Di Syndrome, Hypogammaglobulinemia,

Epilepsy, Asthma, developmental disorders, and learning disorders

Please feel free to visit my website for parents of children with

multiple special needs:

http://www.geocities.com/schmidtzoo/SNAK.index.html

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

I have a 6 year old nephew (husband's sister's son) who has X-Linked

Agammaglobulinemia (XLA.) He has to get life long antibody replacements

through monthly injections of gamma globulin (IVIG.) He was diagnosed with

it after he quit getting breast milk and kept getting hospitalized as an

infant with severe infections. (I'm not a medial expert, but the antigens

or whatever it is in the breastmilk was helping to boost his immune system.)

XLA supposedly only affects 1 out of 100,000 males. He receives special

testing and help through St. Judes a few times a year as well. But he is in

no way affected behaviorally by it. He's a well adjusted, out spoken boy,

who knows his limits with germs.

-

Reality lies beyond the horizon....

RE: Re: was lab results/now " Welcome "

> Diane,

> Also, welcome - and do as suggests - visit the websites listed.

>Dolook out for the NIDs bloodwork-up link - that will list all the tests Dr

>G orders before your first consult - a lot are Immune panel and allergy and

> antibody tests - and judging from your note, you may have done a lot of

> these already! Sounds very much that you have already concluded that your

> child may fit a diagnosis.

> So what exactly are Di Syndrome and Hypogammaglobulinemia? I can

>kinda guess the second one. Would be interested to know more if you have a

>moment to spare,

> best wishes

>

>

============================================

>It might be helpful, if you haven't already, to review the http://www.nids.net

>site; a great new tool there is the site map that helps you navigate thru the

>site, here's that link ---> http://www.nids.net/sitemap.htm

> ~~~cyn

> Responsibility for the content of this message lies strictly with

> the original author, and is not necessarily endorsed by or the

> opinion of the Research Institute.

>

>

[Guest guest]

,

No problem! Di Syndrome is a genetic disorder, it causes a variety of

problems, including cleft palette, thymus problems, heart problems, siezures

calcium deficiencies, immune problems, amongst about 180 total possible

symptoms (of which Kody has something like 56 of them, a high amonut!), the

hypogammaglobulinemia is a primary immune deficiency involving low IgG (not

to mention non functioning IgG, it is possible to have IgG and not have it

work right) and at being low in at least one of the other Ig's, Kody is low

in IgA as well. Having the Di and the hypogam is like an immune double

whamy.

As for virus's in the IVIG, it is now " cleaned " and free of viruses, has

been since that mad cow scare a while back. It is checked for Hepititus and

all the viruses. Trust me, I checked and checked and double checked it's

safety before I agreed to start my son on it. Yeah, I am almost 100%

certain he has . He reached all his milestones on time when an infant,

even walked at 10 months old! But he suddenly stopped talking, and had no

words beyond Mama at age 2. I didn't have the immune diagnosis then,

although he was sick constantly, but he was enrolled in our schools

preprimary impaired program for speech and language. By age 3 he was

speaking like a 2 year old would, but by kindergarten he was speaking

wonderful (other than small things like he still mispronounces certain

things). But when he was 4, it was obvious he wasn't picking up on his

alphabet, numbers, etc. Then last year in kindergarten (he also went to PPI

in the afternoon) it was glaringly obvious he had a problem. By the end of

kindergarten he still couldn't count to 20, he couldn't say his alphabet

without mistakes, couldn't recognize any letter except KODY, couldn't write

any letters except KODY, and he confuses words that sound alike (example,

busy with dizzy). So we had a nueropsyche eval done, and the result was that

he has central auditory processing disorder. Okay fine, we'll deal with that

But then this year, he is falling further and further behind, it is getting

worse and worse. He still can't recognize his alphabet, he can't look at a

sentence and copy it (he'll copy it 100% backwards!), he can't even read the

word Mom. He is also having behavior problems that he never had before. He

argues non stop, he can't understand what you say and thinks you said one

thing when you actually said another, insists that people blame him for

things,obsesses over one thing (currently anything superhero) and many, many

more things. I did an informal autism checklist thingy at Kody's school, 32

points was considered the cut off for referall for a autism work up, Kody

scored 33. I'd say he was high functioning autistic, but I'd also say that

it is gradually getting worse. Which leads me to what I've read on the

site, that without treatment it can get worse? Seems to me to be the only

connection between his immune problems and his learning/behabior that I can

see. Maybe I am grasping at straws?

Diane, Mom to Kody

Please feel free to visit my website for parents of children with multiple

special needs :

www.geocities.com/schmidtzoo/SNAK.index.html

-- RE: Re: was lab results/now " Welcome "

Diane,

Also, welcome - and do as suggests - visit the websites listed. Do

look out for the NIDs bloodwork-up link - that will list all the tests Dr G

orders before your first consult - a lot are Immune panel and allergy and

antibody tests - and judging from your note, you may have done a lot of

these already! Sounds very much that you have already concluded that your

child may fit a diagnosis.

So what exactly are Di Syndrome and Hypogammaglobulinemia? I can kinda

guess the second one. Would be interested to know more if you have a moment

to spare,

best wishes

*********************

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

Thanks very much Diane for explaining Di Syndrome and

hypogammaglobulinemia.

You certainly have your hands full!

I read your 2 posts from yesterday just after my previous posts, and a lot

was already explained.

On your question about IVIG v's IMGG, I can see why your son needs IVIG -

because of his low to no IgG. My son has plenty -but perhaps as you suggest,

it doesn't 'work right'. His early immune panel results were showing big

imbalances though in our last immune panel done in November, his results

were beautifully normal, except for a slightly high level of NK cells -

suggesting a still over active system. I think that Dr Goldberg is using

IMGG in our case as an immune management tool rather than to supply GG as in

your sons case. This management is done in conjunction with other agents

like Famvir and Kutapressin. With all this together, we seem to be moving

forward more rapidly. (fingers crossed)

All of the developmental disorders, delays and regressions that you speak of

below characterize kids in variations. Also the medical issues you

describe for your son have striking similarities. I do hope that you can

look further into some treatment.

Perhaps you can start by taking some of the hypothesis and treatment

papers from the website to discuss with your local Dr.

Once again, thanks for sharing this -

best wishes

RE: Re: was lab results/now " Welcome "

,

No problem! Di Syndrome is a genetic disorder, it causes a variety of

problems, including cleft palette, thymus problems, heart problems, siezures

calcium deficiencies, immune problems, amongst about 180 total possible

symptoms (of which Kody has something like 56 of them, a high amonut!), the

hypogammaglobulinemia is a primary immune deficiency involving low IgG (not

to mention non functioning IgG, it is possible to have IgG and not have it

work right) and at being low in at least one of the other Ig's, Kody is low

in IgA as well. Having the Di and the hypogam is like an immune double

whamy.

As for virus's in the IVIG, it is now " cleaned " and free of viruses, has

been since that mad cow scare a while back. It is checked for Hepititus and

all the viruses. Trust me, I checked and checked and double checked it's

safety before I agreed to start my son on it. Yeah, I am almost 100%

certain he has . He reached all his milestones on time when an infant,

even walked at 10 months old! But he suddenly stopped talking, and had no

words beyond Mama at age 2. I didn't have the immune diagnosis then,

although he was sick constantly, but he was enrolled in our schools

preprimary impaired program for speech and language. By age 3 he was

speaking like a 2 year old would, but by kindergarten he was speaking

wonderful (other than small things like he still mispronounces certain

things). But when he was 4, it was obvious he wasn't picking up on his

alphabet, numbers, etc. Then last year in kindergarten (he also went to PPI

in the afternoon) it was glaringly obvious he had a problem. By the end of

kindergarten he still couldn't count to 20, he couldn't say his alphabet

without mistakes, couldn't recognize any letter except KODY, couldn't write

any letters except KODY, and he confuses words that sound alike (example,

busy with dizzy). So we had a nueropsyche eval done, and the result was that

he has central auditory processing disorder. Okay fine, we'll deal with that

But then this year, he is falling further and further behind, it is getting

worse and worse. He still can't recognize his alphabet, he can't look at a

sentence and copy it (he'll copy it 100% backwards!), he can't even read the

word Mom. He is also having behavior problems that he never had before. He

argues non stop, he can't understand what you say and thinks you said one

thing when you actually said another, insists that people blame him for

things,obsesses over one thing (currently anything superhero) and many, many

more things. I did an informal autism checklist thingy at Kody's school, 32

points was considered the cut off for referall for a autism work up, Kody

scored 33. I'd say he was high functioning autistic, but I'd also say that

it is gradually getting worse. Which leads me to what I've read on the

site, that without treatment it can get worse? Seems to me to be the only

connection between his immune problems and his learning/behabior that I can

see. Maybe I am grasping at straws?

Diane, Mom to Kody

************************

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

Hey, I think I figured out why Dr. Goldberg uses IMGG instead of IVIG...

trust my insatiable need to know things, so I dug out my IVIG info and

started checking. In the " history " section on IVIG, it states that IMGG was

the first way to get gammaglobulin in the blood. You can't inject large

enough amounts of it into the muscle because the muscle can't absorb it. But

it is used for people with healthy immune systems that need a " booster " so

to speak. So my guess is that is why, most of your kids that get IMGG must

not have low enough immune systems to need IVIG, so they get the IMGG

booster. Interesting....and it explains alot!

Please feel free to visit my website for parents of children with multiple

special needs :

www.geocities.com/schmidtzoo/SNAK.index.html

-- RE: Re: was lab results/now " Welcome "

,

No problem! Di Syndrome is a genetic disorder, it causes a variety of

problems, including cleft palette, thymus problems, heart problems, siezures

calcium deficiencies, immune problems, amongst about 180 total possible

symptoms (of which Kody has something like 56 of them, a high amonut!), the

hypogammaglobulinemia is a primary immune deficiency involving low IgG (not

to mention non functioning IgG, it is possible to have IgG and not have it

work right) and at being low in at least one of the other Ig's, Kody is low

in IgA as well. Having the Di and the hypogam is like an immune double

whamy.

As for virus's in the IVIG, it is now " cleaned " and free of viruses, has

been since that mad cow scare a while back. It is checked for Hepititus and

all the viruses. Trust me, I checked and checked and double checked it's

safety before I agreed to start my son on it. Yeah, I am almost 100%

certain he has . He reached all his milestones on time when an infant,

even walked at 10 months old! But he suddenly stopped talking, and had no

words beyond Mama at age 2. I didn't have the immune diagnosis then,

although he was sick constantly, but he was enrolled in our schools

preprimary impaired program for speech and language. By age 3 he was

speaking like a 2 year old would, but by kindergarten he was speaking

wonderful (other than small things like he still mispronounces certain

things). But when he was 4, it was obvious he wasn't picking up on his

alphabet, numbers, etc. Then last year in kindergarten (he also went to PPI

in the afternoon) it was glaringly obvious he had a problem. By the end of

kindergarten he still couldn't count to 20, he couldn't say his alphabet

without mistakes, couldn't recognize any letter except KODY, couldn't write

any letters except KODY, and he confuses words that sound alike (example,

busy with dizzy). So we had a nueropsyche eval done, and the result was that

he has central auditory processing disorder. Okay fine, we'll deal with that

But then this year, he is falling further and further behind, it is getting

worse and worse. He still can't recognize his alphabet, he can't look at a

sentence and copy it (he'll copy it 100% backwards!), he can't even read the

word Mom. He is also having behavior problems that he never had before. He

argues non stop, he can't understand what you say and thinks you said one

thing when you actually said another, insists that people blame him for

things,obsesses over one thing (currently anything superhero) and many, many

more things. I did an informal autism checklist thingy at Kody's school, 32

points was considered the cut off for referall for a autism work up, Kody

scored 33. I'd say he was high functioning autistic, but I'd also say that

it is gradually getting worse. Which leads me to what I've read on the

site, that without treatment it can get worse? Seems to me to be the only

connection between his immune problems and his learning/behabior that I can

see. Maybe I am grasping at straws?

Diane, Mom to Kody

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[Guest guest]

I am sure you are right on this but it would be good to get Dr. G to expound on

this on the chat.

RE: Re: was lab results/now " Welcome "

Hey, I think I figured out why Dr. Goldberg uses IMGG instead of IVIG...

trust my insatiable need to know things, so I dug out my IVIG info and

started checking. In the " history " section on IVIG, it states that IMGG was

the first way to get gammaglobulin in the blood. You can't inject large

enough amounts of it into the muscle because the muscle can't absorb it. But

it is used for people with healthy immune systems that need a " booster " so

to speak. So my guess is that is why, most of your kids that get IMGG must

not have low enough immune systems to need IVIG, so they get the IMGG

booster. Interesting....and it explains alot!

Please feel free to visit my website for parents of children with multiple

special needs : www.geocities.com/schmidtzoo/SNAK.index.html

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