Re: More questions

[Guest guest]

Diane,

Hello. From your email you stated that your son has lost most of his vision.

I think you could get him on disability and could get Medi-Care because of

it. Maybe I'm wrong, but it's worth a shot. I emphatize with your

predicament because I too have played the HMO/Health Care/Medical Insurance

musical chairs.

Good Luck.

Mark

----Original Message Follows----

From: ADRENHLIN@...

Reply-To: NF2_Crewonelist

To: NF2_Crewonelist

Subject: Re: more questions

Date: Mon, 25 Oct 1999 10:24:43 EDT

From: ADRENHLIN@...

Diane...

We had the same problem back in March with my HMO...they wanted to send me

to the University of Utah where the nero there was wanting to remove both

AN's at the same time...no thanks.....We did have to contact the state of

Nevada insurance commision and with in a few days everything including my

ABI

was approved...after my surgery the insurance company doubled thier rates

for

my group so we opted to go with a new plan...we are now starting to fight

with them so I can get the other AN removed....one good thing we have in our

corner now is that I have an ABI and we are arguing that I need to go back

to

HEI for surgery due to that fact...good luck to you

in Vegas

------------------------------------------------------------------------

See what's happening for NF2Con 2000!

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[Guest guest]

,

I hear you (loud and clear!!). As the mother of twins, altho only 1 CHARGEr,

I can totally relate to the frustration and exploding over the littlest

things. Have you talked to your pedi? I'm not a doctor, but I would

definitely run the Tylenol issue by him. If it makes him more

comfortable..........especially since you can't seem to pinpoint what is

actually bothering him.

Know that you are not alone and you are *NOT* the only one who feels this

way. That, for me, is so important to know, because so many times, I feel I

am going nuts and I'm the only one who has problems.

Janet

Wife to Matt

Mom to (ADD) & (CHaRGEr) 7, nne 2 1/2

Mom to 16 months.

Weymouth, Massachusetts, USA

<A HREF= " http://members.aol.com/jpm4189/page/index.htm " >Our Family Homepage</

A>

[Guest guest]

Dear ,

It would really seem that IS in some kind of pain if he is calmer with

the Tylenol. If not some sort of physical pain, then possibly some sort of

sensory experience. Either one could cause these troubles and it is true it

can be very, very hard to figure out.

There have been brief time periods when we had to give our daughter Kendra

tylenol for similar symptoms. Looking back I would say there are four things

that I know. 1. The first times we had to give Kendra tylenol was definitely

due to the fact she had reflux and gastritis and ulcers. 2. There was a time

when Kendra came off of pregestimil and was transitioning to baby foods when

she again had lots of crying. Looking back I wonder if there was a lot of

discomfort from the processing of the foods. 3. The diffculty in acquiring

language has been an ongoing source of frustration. The difficulties may be in

part due to visual processing disorders. 4. Kendra is on medication that

alters the neurotransmitters. Since starting that medicine at age 10 there

have been almost zero outburts or temper tantrums. She sleeps thorugh the

night where previous to 10 years old she awoke sometimes 4 times a night. I'm

certain the better sleep helps.

Now, I am not happy that Kendra is on the medicine. There were side effects

immediately and we reduced the dose. Kendra's fingers became ice cold. Kendra

now is on a very tiny dose. However, it IS evident to me there is a problem

with the neurotransmitters. Many researchers feel there can be problems with

fatty acid metabolism and looking into that area and adjusting nutrition can

have a positive impact on the body. I would love to be able to understand

these nutrition and digestion issues better.

I attended a conference recently and met a researcher named Dr. Pat Kane.

Coincidentally, she is in New Jersey. She has a company called: Body Bio

which is in Millville, NJ. The phone is . The FAX is (856)

825-2143. Some of the approaches she uses seem to be likely to help with some

of the issues that CHARGERs have. She writes about helping kids with autism

and other disorders, so don't let that frighten you from contacting her if you

feel there may be some connections.

I wish I had black and white answers. I know there will be many suggestions

from the list. I hope that hearing a little of what we are experiencing may

give you a bit of an idea that leads to help for .

I also feel if you are concerned at all about regression it might not be a bad

idea at all to consult with a neurologist to be sure there isn't regression.

It would be wise to discuss the association of the tylenol decreasing the

symptoms with a doctor.

With best wishes to you.

wendy

Mom to Kendra, 13, CHARGE, , 18 and Camille, 21

Portland, OR

Jayem14@... wrote:

>

> From: Jayem14@...

>

> I hate to ramble on since we don't always have alot of time in our lives but

> I need to once again.....

>

> As you can see, I am always a bit more concerned for over .

> Although they both have Charge it seems that has been affected a bit

> more in all areas. can spend a good part of his day crying. He

> sleeps okay and eats pretty well when not chasing him around to get the food

> in his mouth but besides that he does not seem like a typical happy 2 1/2

> year old. I understand our Charge kids have many issues to deal with but I

> don't ever seem to have the answers to help . He is not doing well

> with theraphy---actually he won't sit for any period of time doing a sort of

> structured activity. He can't have demands put on him without a " flip-out "

> and seem happiest when left alone, isolated and unbothered. Lately he does

> not like to be put in a car seat after being somewhere and tends to thrash

> around and bang his head more often. At times I feel he is regressing in

> many areas and at other times I am not sure---are we ever sure!!!!??!?!?!?!?

> I could go on but I think you get my point. I know a big part is fustration

> but I wish there was more to do. He has been sick the past couple of days

> with the typical fever and flu so I have been giving him Tylenol. The FUNNY

> thing is that he seems to be so much better with behavior while on the

> Tylenol. I am wondering if he is in pain all the time for some reason and

> the Tylenol seems to help...maybe he should be on it daily?!?!? I guess I

> was looking for more advice and ways to make life a bit simplier for

> and myself. His behavior is very difficult at times and I find myself very

> angry and fustrated at times exploding at the smallest things. I think I am

> losing it at times and try to regroup and think about the situation. At

> times it works other times I know it isn't.

> Thank you for listening,

> Murray

> wife to Jay and mom to and -twin Chargers

>

> > For information about the CHARGE Syndrome Foundation or to become a member

please contact marion@....

[Guest guest]

>From: Jayem14@...

>

>I hate to ramble on since we don't always have alot of time in our lives but

>I need to once again.....

>

>As you can see, I am always a bit more concerned for over .

>Although they both have Charge it seems that has been affected a bit

>more in all areas. can spend a good part of his day crying. He

>sleeps okay and eats pretty well when not chasing him around to get the food

>in his mouth but besides that he does not seem like a typical happy 2 1/2

>year old. I understand our Charge kids have many issues to deal with but I

>don't ever seem to have the answers to help . He is not doing well

>with theraphy---actually he won't sit for any period of time doing a sort of

>structured activity. He can't have demands put on him without a " flip-out "

>and seem happiest when left alone, isolated and unbothered. Lately he does

>not like to be put in a car seat after being somewhere and tends to thrash

>around and bang his head more often. At times I feel he is regressing in

>many areas and at other times I am not sure---are we ever sure!!!!??!?!?!?!?

>I could go on but I think you get my point. I know a big part is fustration

>but I wish there was more to do. He has been sick the past couple of days

>with the typical fever and flu so I have been giving him Tylenol. The FUNNY

>thing is that he seems to be so much better with behavior while on the

>Tylenol. I am wondering if he is in pain all the time for some reason and

>the Tylenol seems to help...maybe he should be on it daily?!?!? I guess I

>was looking for more advice and ways to make life a bit simplier for

>and myself. His behavior is very difficult at times and I find myself very

>angry and fustrated at times exploding at the smallest things. I think I am

>losing it at times and try to regroup and think about the situation. At

>times it works other times I know it isn't.

>Thank you for listening,

> Murray

>wife to Jay and mom to and -twin Chargers

>

,

Katelyn is 9 years old and I and the school give tylenol at times when

she seems uncomfortable. I believe that she has a lot of headaches. When

she feels bad she has poor attention span and is moody. I guess that I

react the same way to a headache;-).

>>For information about the CHARGE Syndrome Foundation or to become a member

>please contact marion@....

[Guest guest]

Sorry, I forgot to mention that RAI means Radioactive Iodine Uptake, which I should have written "RAIU". It is another test done directly on the thyroid.

Tx

More questions

Sorry, I have more questions.

I was thinking after I sent the last email. What is an RAI?

[Guest guest]

Thanks . I did not have that done. My thyroid ending up burning itself out.

Stacey

Re: More questions

Sorry, I forgot to mention that RAI means Radioactive Iodine Uptake, which I should have written " RAIU " . It is another test done directly on the thyroid.

Tx

More questions

Sorry, I have more questions.

I was thinking after I sent the last email. What is an RAI?

[Guest guest]

I certainly miss being normal. For around 4 years it's been like

this. Even when my thyroid is ok, it only gets back to 25% of what it

used to be.

Jan

> Same here.

>

> Alison Okerblom

[Guest guest]

I started Prednisone (same as Cortisone) and 7-Keto DHEA, which

hopefully will help. But in my case, I believe it was not thyroid or

adrenal - it was the untreated PCOS. With testosterone 11x higher

than usual, it is no wonder I had no sex drive. This seems to be a

dilemma cause if the testosterone is too low, you have no sex drive,

but if it is too high, you also have no sex drive. On the top of the

normal range would be optimal for that.

So yeah, in a sense it was adrenal since I believe the same as some

holistic doctors say about PCOS: it is caused by the pancreas, the

ovaries AND the adrenals. Tradional docs say pancreas and ovaries,

and skip the adrenals. That is why I started the Prednisone, to try

to suppress some of that testosterone in the adrenals.

Jan

> I believe that the adrenal hormones have everything to do with

this. They work hand n hand with the thyroid.

>

>

> Tx

>

[Guest guest]

Just associating it with love doesn't make me want it. In a healthy

person, it is supposed to be a need, like sleeping, eating, drinking

water... For me it is something like going to the movies, an activity

I hardly ever think about.

Jan

[Guest guest]

My estrogen is low-normal, at the very bottom of the normal range.

Progesterone wasn't tested. The lowish estrogen is what confirms the

doctor's theory that the estrogen is being converted into

testosterone in the fat.

The Total Testosterone was 11x normal, Free Testosterone 3x normal.

They are unbalanced, but even if my progesterone is even lower than

the estrogen, I doubt it could be higher than the testosterone.

So I am taking the darn diet pills. Today is day 2 and I don't feel

any appetite suppression going on. Looks like this weight loss thing

is gonna take a while.

Jan

> It really sounds like no testosterone to me, OR an imbalance

between the

> testosterone and estrogen, possibly too much estrogen and maybe no

> progesterone, or as before, the imbalance between the three. The

estrogen

> overdrive can sure be the culprit here.

>

>

> Tx

>

> Re: More questions

>

>

> > Just associating it with love doesn't make me want it. In a

healthy

> > person, it is supposed to be a need, like sleeping, eating,

drinking

> > water... For me it is something like going to the movies, an

activity

> > I hardly ever think about.

> >

> >

> > Jan

[Guest guest]

It is a she. And she just had the adrenal testing done - ACTH

challenge and DHEAS. She wanted to rule out PCOS, pituitary problems,

and adrenal problems to explain the high testosterone (she didn't

know it yet, but I complained of hirsutism and acne that has resisted

even Accutane). My adrenals are fine. I mean, DHEAS was a bit low and

I am taking 7-Keto DHEA, so I am not gonna stop it. Cortisol was

good, great results, and I wasn't taking anything at the time.

I understand saliva is supposed to be more accurate, but it isn't

available here, so she did test to the best of her ability. I really

hope I am just too fat, you know? I've done research and while my

levels aren't high enough to justify being tested for a tumor, they

say that high testosterone has 4 causes:

- PCOS, but that was excluded by LH:FSH ratio that shows I ovulate;

- LOCAH, but that has high DHEAS which is then converted in

testosterone - also excluded;

- Ovarian tumor - usually testosterone is still like 10x higher than

mine;

- Fat.

Neither is a really good explanation in my case, but I prefer the fat

one than the tumor one. The problem with the fat one is that I am

just around 6lb over the healthy weight range, so I must have the

world's most active fat if it can convert that much hormone with so

relatively little fat. If it is my fat, then how skinny will I have

to get to get rid of this testosterone? 95 pounds? Cause I was around

115-120lb most of my life and I've always had the body hair and the

acne. It didn't get any worse when I was 230lb either - although back

then I was untreated for hypo, so the dry skin and hair loss might

have had something to do with it. It is not that I don't buy it, I am

just afraid I am gonna have to start myself into a little stick

figure before it gets better.

Jan

> What a jerk he is. He's too darn lazy to check out the whole

adrenal status

> or is too dumb to know how to do anything about it!

>

>

> Tx

>