Please help me - i am so overwhelmed

[Guest guest]

We just found out that runs in our family. I am so confused. I don't even

know where to begin. It seems that my second child (who is almost 2) is

showing signs of apraxia. I don't undertsand even really what is other

than Neuro Immune Deficiency syndrome. But I don't even understand what

that means. And I don't understand how this can be genetic. And I don't know

what to do because apraxia is not nuerological (although every one else says

it is), that it is really . But what does that mean? And what can I do?

Our

cousin has - PDD - Asbergers Syndrome hyperlexia (whatever that

means) and his mother said that our second was showing signs of apraxia

and that runs in our family. Can someone please help me to

understand WHAT exactly might be happening to my child and WHAT I need

to do? Who do I goto that will understand this is and not a brain thing?

I

am sorry if this doesn't make sense. I am so frazzled right now. Please ask

me any questions. I want to know EXACLTY what this is and what I can do

about it. Will it get worse?

Right now she is having difficulty with her speech. She understands and

seems to comprehend things (like when we tell her to do things). But she is

leaving the first consanant sound off several words. And will say the " l " sound

by sticking her tounge al the way out - as if trying to touch her nose. She

needs constant reminders of how to completely say words. She is really

pretty good at communicating when she knows the sign for things (we taught

he a few words in sign language). She also seems to be very clumsy (always

bumping into things even though she is able to see them clearly).

Please, I don't even know where to begin. I don't even know what questions

to ask to begin. Thank you, a

[Guest guest]

hi paula. my son is autistic, 6 yrs old, and apraxic. there is a great web site called apraxiakids.com. good explanation there. apraxia is something of a motor oral problem. sort of like a stroke vict learning to speak all over again. the brain knows what it wants to say but the mouth/tongue cant seem to form the words properly. a brain to mouth connection gone wrong (definition truly in laymens terms!)

anyway, my son receives 30 mins of speech each day thru the school district and i pay out of pocket for him to see a dr speech pathologist 1 hr wk pvt.

i would recommend you see a speech pathologist phd, who clearly understands apraxia and get an eval first. then, with that info, get your child into speech therapy quick. she's soooo young. im sure if you get a jump on it now, she'll be okay by the time she starts school or even before.

as for nids, we have been on the protocol over a year now. all the info on nids is on the website. good luck and keep us posted.

vicki in los angeles

[Guest guest]

Hi a,

 

You've come to the right place!  This is an incredibly supportive, informative group.   If you haven't already, it will help a great deal to visit www.nids.net.  Do read as many of the articles and gather as much information as you can.  The information contained in the website will answer many of your questions, and hopefully calm you enough to help you think clearly and sort things out so you can take action. 

 

is "genetic" only in the sense that some children are genetically more susceptible than others to developing .   Children who develop often have a close relative(s) who has some sort of autoimmune problem (food allergies, Multiple Sclerosis, Ulcerative Colitis, Crohn's Disease, Alzheimer's, Lupus, etc.).  To clarify,  stands for "Neuro-Immune *Dysfunction* Syndrome", not "Deficiency".  It means the immune system has been overstressed; it is misfiring and attacking functions in the body that it should be recognizing as normal.   Children with typically have multiple food allergies, low ferritin (iron) levels, candida (yeast) overgrowth in their digestive systems, and other problems that can be confirmed in lab tests.   Adults who develop  are typically given the diagnosis of (what is currently known as) Chronic Fatigue Syndrome or Chronic Fatigue Immune Dysfunction Syndrome.  affects the neurological functions, so in that small sense you could say your daughter's speech problem is "neurological", but if it is (and it likely is), it is a treatable illness that developed over time, not something genetically "hardwired" in your child.  Much of the medical/educational community has not recognized this yet, but thank goodness, that is changing rapidly. 

 

The objective of the medical protocol is to calm the stressed immune system so the body can heal itself.  The first thing I recommend you do is to remove foods from your daughter's diet that are likely to be causing problems.  At the website, click "For Families" and then "Do's and Don't's of the Diet".  This will help you to eliminate the most likely allergens (especially cow's milk), and greatly reduce sugars (which feed yeast).  There is also a great deal of other medical information there that should help you make some decisions about what you need to do going forward. 

 

Best of luck, and feel free to ask as many questions as you need to.

 

Donna

 

 

 

 

Please help me - i am so overwhelmed

We just found out that runs in our family.  I am so confused.  I don't even know where to begin.  It seems that my second child (who is almost 2) is showing signs of apraxia.  I don't undertsand even really what is other than Neuro Immune Deficiency syndrome.  But I don't even understand what that means.  And I don't understand how this can be genetic.  And I don't know what to do because apraxia is not nuerological (although every one else says it is), that it is really .  But what does that mean?  And what can I do?  Our cousin has - PDD - Asbergers Syndrome hyperlexia (whatever that means) and his mother said that our second was showing signs of apraxia and that runs in our family.  Can someone please help me to understand WHAT exactly might be happening to my child and WHAT I need to do?  Who do I goto that will understand this is and not a brain thing?  I am sorry if this doesn't make sense.  I am so frazzled right now.  Please ask me any questions.  I want to know EXACLTY what this is and what I can do about it.  Will it get worse?Right now she is having difficulty with her speech.  She understands and seems to comprehend things (like when we tell her to do things).  But she is leaving the first consanant sound off several words.  And will say the "l" sound by sticking her tounge al the way out - as if trying to touch her nose.  She needs constant reminders of how to completely say words.  She is really pretty good at communicating when she knows the sign for things (we taught he a few words in sign language).  She also seems to be very clumsy (always bumping into things even though she is able to see them clearly).Please, I don't even know where to begin.  I don't even know what questions to ask to begin.  Thank you, a

[Guest guest]

My sister in law has done a lot of research on and her son is a patient

of Dr Goldberg¹s. She said that she could not be sure, but she wanted me to

look into apraxia. She said ³Remember it's and not a neurological flaw

or miswiring of the brain. The info you find on the internet is wrong since

the term apraxia was made by neurologists.² So now I am scared to go

anywhere for information for fear that they won¹t treat it as .

I have been working with her myself to get her to speak correctly, and she

is making progress. What would the speech pathologist phd do? If it is

, then how can speech therapy alone work? Isn¹t there something with

her immune system wrong?

Thanks, a

On 12/1/03 6:03 PM, " vickila1@... " <vickila1@...> wrote:

> apraxia is something of a motor oral problem. the brain knows what it wants

to

> say but the mouth/tongue cant seem to form the words properly. a brain to

> mouth connection gone wrong (definition truly in laymens terms!)

> i would recommend you see a speech pathologist phd, who clearly understands

> apraxia and get an eval first.

>

> as for nids, we have been on the protocol over a year now.

> vicki in los angeles

[Guest guest]

OK... Ready for questions galore?

I am slowly reading through all the articles. I am not very good at reading

on the computer, and it would take so much money to print out all the

information. Plus, it takes me a while to process as I am reading.

So, the immune system is dysfunctional? What made it that way? What set it

off? How did it become overstressed? And how can I get it back to normal?

If it developed over time, then there has to be a way to UNDO what has been

done over time. What is it? What are ways to overstress the immune system?

What are signs that the immune system is overstressed? How can I avoid

overstressing my other children¹s immune systems?

I heard something about the herpes 6 virus causing this? Where exactly does

this virus come into play? I have heard that colloidal silver can kill

viruses. Has anyone tired using colloidal silver with any positive results?

Also, I have been reading a wonderful book called The Healing Miracles Of

Coconut Oil (http://www.tropicaltraditions.com/) by Dr. Bruce Fife. Coconut

oil has been shown effective in treating CFS and in treating candida. It

has fatty acids that can kill the some forms of the herpes virus. Has

anyone tried coconut oil with positive effects? It is known as an

antimicrobial food: a natural antibacterial, antiviral, antifungal, and

antiprotozoal food.

Why do immune boosters (like vitamins and herbs and such) only work for a

short time or not at all?

If children with usually have low levels of iron and candida overgrowth

­ will treating these (by increasing iron in the diet and treating candida

with acidophilus and other herbs) help?

I read the diet guidelines. I can understand removing whole wheat, but why

the whole grains? Is it just because they might be allergic to them? Or

because a lot of them have gluten in them? If they have the blood test and

are NOT allergic to whole grains or whole wheat or gluten, is it OK to

introduce those back into the diet? What does eating the whole grains do

that is bad for the child? Is oatmeal and millet OK? I know that barley,

wheat and spelt have gluten. What about quiona?

I understand removing the sugar and dairy ­ those harm the immune system

rather than build them up, but I do not understand limiting fruit. I

understand that fruit has sugar in it, but doesn¹t the fiber in the fruit

help keep that sugar from being absorbed too readily (as with fruit juice)?

What fruits are the worst (meaning I should be sure to limit or avoid)? He

mentioned strawberries and other berries as those can be an allergy, but if

after the blood test, the child is not allergic, can that be introduced back

into the diet?

I am also having difficult with the thought of giving my child processed

foods ­ especially white bread. Can I give her spelt or some other type of

whole grain bread that is gluten free? Is the gluten the reason for giving

processed bread?

Also, I can understand getting more protein in the child, but does it have

to be through meat? What about beans, seeds and nuts, seaweeds, and leafy

green vegetables? What about spirulina? That is a good source of protein

as well as an immune booster.

Also, I have a friend whose child was/is aparaxic. (Is apraxia a life long

condition? What about - is lifelong?) Her daughter started

having problems nursing and failure to thrive on her breastmilk. Eleora had

the same problems. I had to put her on formula. It was shortly after that,

that she developed eczema - showing a sign on an allergic reaction. She

began vomiting. I am curious if you there are others - is there a

correlation between FTT babies and apraxia?

Thanks for putting up with all my questions.

[Guest guest]

Hi a, I'll try to answer at least some of your questions. Keep in mind that

my son is a patient of Dr. Goldberg's and my answers will be influenced by how I

understand his ideas and by my own experiences; there are others here who have a

deeper understanding of and also some who will disagree with some of Dr.

Goldberg's ideas, particularly the gluten issue.

>>>So, the immune system is dysfunctional? What made it that way? What set

it

off? How did it become overstressed? And how can I get it back to normal?

If it developed over time, then there has to be a way to UNDO what has been

done over time. What is it? What are ways to overstress the immune system?

What are signs that the immune system is overstressed? How can I avoid

overstressing my other children¹s immune systems?<<<

There are many, many differing opinions and theories about exactly what causes

the immune system to become dysfunctional. Probably the most accurate answer

that can be given until more is known is that there are any number of things, or

a combination of events or illnesses that can cause it: Food allergies, viruses

(HHV-6, as you mention), environmental stressors (chemicals, allergens) and -

dare I say it - vaccinations. But that is not to say that vaccinations are a

cause -- just that a vaccination given at the wrong time, such as during an

undetected illness, in the wrong combinations, or with the wrong additives, can

unduly stress the immune system.

<<Why do immune boosters (like vitamins and herbs and such) only work for a

short time or not at all?<<

In Dr. Goldberg's opinion: many of these so-called " immune boosters " can

actually cause harm and further cause immune system problems because they 1) can

be highly allergenic or contain allergenic ingredients, 2) can contain

impurities, 3) mega-doses of suppliments can actually *feed* viruses (!)

<<If children with usually have low levels of iron and candida overgrowth

­ will treating these (by increasing iron in the diet and treating candida

with acidophilus and other herbs) help?<<<

Dr. Goldberg is treating my son's iron deficiency with an iron suppliment

(should only be given to a child with a doctor's instructions!). He does

recommend acidophilus, but he treats yeast overgrowth with antifungals

(Diflucan, Nizeral, etc.). The only other suppliment that is permitted for my

son is a regular children's multivitamin.

<<<I read the diet guidelines. I can understand removing whole wheat, but why

the whole grains? Is it just because they might be allergic to them? Or

because a lot of them have gluten in them? >>>

It's because of the allergens present in unprocessed grains. Dr. G's opinion

is that gluten is *not* a problem for the vast majority of kids. There are

a lot of parents here that still avoid gluten, though.

<<If they have the blood test and

are NOT allergic to whole grains or whole wheat or gluten, is it OK to

introduce those back into the diet?<<

No. The blood test results are only a guide that tells how activated the

immune system is. Allergies can continue to develop and increase. My son's

results showed a reaction to soybeans on the higher end of the " insignificant "

range, so that was considered negative and therefore okay. But after about six

months of giving him quite a lot of soy-based milk and other food, he developed

a sensitivity, so I had to cut it out of his diet.

<<<I understand removing the sugar and dairy ­ those harm the immune system

rather than build them up, but I do not understand limiting fruit. I

understand that fruit has sugar in it, but doesn¹t the fiber in the fruit

help keep that sugar from being absorbed too readily (as with fruit juice)?<<<

Sugar in any form feeds yeasts in the digestive system, and therefore must be

limited.

<<<What fruits are the worst (meaning I should be sure to limit or avoid)? He

mentioned strawberries and other berries as those can be an allergy, but if

after the blood test, the child is not allergic, can that be introduced back

into the diet?<<<

As with whole grains, red berries and tropical fruits (i.e., papaya,

pineapple, coconut) are highly allergenic and need to be avoided even if the

tests are negative.

<<<I am also having difficult with the thought of giving my child processed

foods ­ especially white bread.<<<

I know what you mean! It's totally counterintuitive! :-) Bread is only

permitted as a way to get more protein into the kids, so I try to avoid bread

whenever possible. It wasn't so easy at first, but as my son started to get

better, he was more willing to try things that weren't disguised by big clouds

of bread. :-)

<<< I can understand getting more protein in the child, but does it have

to be through meat? What about beans, seeds and nuts, seaweeds, and leafy

green vegetables? <<<

All of those, except nuts, are acceptable protein foods on the protocol.

Nuts are a problem for a lot of kids and not permitted, EXCEPT: the smooth (not

chunky style), *processed* peanut butter (i.e., Skippy or Jif -- I know, I know

-- but it's for the same reason as giving processed bread instead of whole

grain).

<<<Also, I have a friend whose child was/is aparaxic. (Is apraxia a life long

condition? What about - is lifelong?) Her daughter started

having problems nursing and failure to thrive on her breastmilk. Eleora had

the same problems. I had to put her on formula. It was shortly after that,

that she developed eczema - showing a sign on an allergic reaction. She

began vomiting. I am curious if you there are others - is there a

correlation between FTT babies and apraxia?>>>

My son's apraxia has certainly improved with speech therapy, and I truly

believe that treating his has only accellerated his progress. Is

lifelong? Some kids seem to recover on their own with no intervention; others

need medical help to recover and then are able to go on without medications;

others recover but continue to need medications to maintain their optimal level

of functioning. Dr. Goldberg says that many of the food allergies (except milk)

will be outgrown and many of the foods they cannot eat as children will be okay

to eat as adults. Hopefully, more research will bring about better treatments,

such as immune modulators which have shown great promise with CFS patients. As

for eczema and vomiting upon being introduced to formula...my son also reacted

after being introduced to formula. My son was not a FTT baby -- he was huge and

a big eater. I think the connection has more to do with the allergic reaction

than failure to thrive...but that's just my best " -mommy " guess.

<<<Thanks for putting up with all my questions.>>>

No problem. I hope others will chime in.

Donna

______________________________________________

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 can only answer a couple of your ?'s.....

My son is apraxic. He was breastfed until the ripe old age of 3 ( I

know, shocking!) He was never regularly on formula, but when I started

giving him very small amounts of formula (soy or cows milk type) in a cup at

age 10 mos, along with other solids like yogurt and bread, he developed

horrible eczema all over his head. From birth, he had blood and mucous in

his stool that fluctuated depending on my diet. Dairy was the worst for

him, but I didn't know the extent of his food intolerances till recently.

However, he never had a weight gain problem, so peds never took my concerns

seriously. They said how can a baby who is in the 90th percentile have a

malabsorption/allergy problem....grrr......

He now eats meat, vegetables, white rice, potatoes, corn, beans, and a few

fruits. And that's it! So, to answer your question about formula.....I

would say that formula is not the problem, but rather what type you use.

The hypoallergenic, pre-digested ones would be best. Breastmilk can be just

as problematic if the mother's diet contains allergens, IMO. I'm very

pro-breastfeeding (obviously, or I wouldn't have nursed a child 1/3 my size)

but for some kids it can cause problems.

As for ST vs. medical treatment........my apraxic son made very

little progress in appropriate therapy for six months. When we started

antivirals (Famvir) he took off in his speech and is still making rapid

progress. Dr. G. told us upfront that viral issues are often at the root of

motor planning disorders. We still do frequent ST, but the antivirals got

to the root of the problem.

Keep researching and good luck!

Becky

Re: Please help me - i am so overwhelmed

OK... Ready for questions galore?

I am slowly reading through all the articles. I am not very good at reading

on the computer, and it would take so much money to print out all the

information. lus, it takes me a while to process as I am reading.

So, the immune system is dysfunctional? What made it that way? What set it

off? How did it become overstressed? And how can I get it back to normal?

If it developed over time, then there has to be a way to UNDO what has been

done over time. What is it? What are ways to overstress the immune system?

What are signs that the immune system is overstressed? How can I avoid

overstressing my other children¹s immune systems?

I heard something about the herpes 6 virus causing this? Where exactly does

this virus come into play? I have heard that colloidal silver can kill

viruses. Has anyone tired using colloidal silver with any positive results?

Also, I have been reading a wonderful book called The Healing Miracles Of

Coconut Oil (http://www.tropicaltraditions.com/) by Dr. Bruce Fife. Coconut

oil has been shown effective in treating CFS and in treating candida. It

has fatty acids that can kill the some forms of the herpes virus. Has

anyone tried coconut oil with positive effects? It is known as an

antimicrobial food: a natural antibacterial, antiviral, antifungal, and

antiprotozoal food.

Why do immune boosters (like vitamins and herbs and such) only work for a

short time or not at all?

If children with usually have low levels of iron and candida overgrowth

­ will treating these (by increasing iron in the diet and treating candida

with acidophilus and other herbs) help?

I read the diet guidelines. I can understand removing whole wheat, but why

the whole grains? Is it just because they might be allergic to them? Or

because a lot of them have gluten in them? If they have the blood test and

are NOT allergic to whole grains or whole wheat or gluten, is it OK to

introduce those back into the diet? What does eating the whole grains do

that is bad for the child? Is oatmeal and millet OK? I know that barley,

wheat and spelt have gluten. What about quiona?

I understand removing the sugar and dairy ­ those harm the immune system

rather than build them up, but I do not understand limiting fruit. I

understand that fruit has sugar in it, but doesn¹t the fiber in the fruit

help keep that sugar from being absorbed too readily (as with fruit juice)?

What fruits are the worst (meaning I should be sure to limit or avoid)? He

mentioned strawberries and other berries as those can be an allergy, but if

after the blood test, the child is not allergic, can that be introduced back

into the diet?

I am also having difficult with the thought of giving my child processed

foods ­ especially white bread. Can I give her spelt or some other type of

whole grain bread that is gluten free? Is the gluten the reason for giving

processed bread?

Also, I can understand getting more protein in the child, but does it have

to be through meat? What about beans, seeds and nuts, seaweeds, and leafy

green vegetables? What about spirulina? That is a good source of protein

as well as an immune booster.

Also, I have a friend whose child was/is aparaxic. (Is apraxia a life long

condition? What about - is lifelong?) Her daughter started

having problems nursing and failure to thrive on her breastmilk. Eleora had

the same problems. I had to put her on formula. It was shortly after that,

that she developed eczema - showing a sign on an allergic reaction. She

began vomiting. I am curious if you there are others - is there a

correlation between FTT babies and apraxia?

Thanks for putting up with all my questions.