Re: Question regarding RSS look... to Chris (MRI)

February 11, 2006

As you know, 's first stim test came back " interesting " to Dr. H. Her

gh level was like a 6.6 and her cortisol level was low and her prolactin level

was high. You said that Charissa had a high prolactin level. We did another

stim test at Dr. H's office (two weeks ago this coming Monday) and we go back on

the 24th to get the results. According to the computer in the room, the two

diagnosis for were growth hormone deficient and pituitary dwarfism.

Depending on if she fails this blood test then we are on are way for the MRI. I

was talking to my family doctor and telling him about the blood results and he

stopped in his tracks and said wait a minute now, this is the pituitary and you

need an MRI. What I have read (from the site you sent me) about the pituitary

and high prolactin levels were benign tumors on the pituitary. Was that found

with Charissa and if so, is she medicated for that? Also, once you mentioned

about having her prolactin levels tested

again, have you done that yet? I'm trying to understand and hopefully you can

help. It seems like the prolactin level is high for he age? but if she were an

adult this would be normal? Is that what is going on with Charissa? As my

doctor explained to me if you were pregnant and then especially nursing, your

prolactin would be high and that's why the chance of getting pregnant during

that time (nursing) is slim - not impossible but slim. So is that the reason

for the menstrual cycle being crazy? right.

You can either post or e-mail me privately. I plan on letting Dr. H know

about Charissa like you said before.

Thank you,

B

and Kelli

R wrote:

Jeanie & Deb,

You both have brought up some great points! When Charissa was little and

under the RSS diagnosis I was concerned, but very calm & not fretting at all. I

did such a great job of handling the day-to-day issues of her poor eating,

constipation, feeding clinics, poor growth, PT, OT, etc. that our endo at the

time would refer new parents who were freaking out to contact me (that was

before support groups like this existed). During those early days, the only

thing I obsessed about was being a good mom and also keeping good records -

which was the best thing I could have done to prepare us for now.

I admit, I DID obsess a bit when we suddenly had no diagnosis after we saw Dr.

H. when Charissa was 15. By this time I knew that Charissa would need some

support services as an adult. We had already applied for disability services

once & been told there was not enough evidence, come back when we had more

info.....and suddenly we had LESS info! But I had the " gut instinct " that there

was something going on that had to be investigated.

So I pushed for a neurological exam - but the only doctor here who was doing

them at that time refused to evaluate her because " if something was wrong, it

would have been found by now " . Boy, was he ever wrong!

I did research to find that there was a genetics clinic here (her previous

genetics consultation had been 15 years earlier in another state) and contacted

the doctors myself to push for another genetics consultation - and they found

the chromosome deletion by using a test that had been developed less than a year

before.

And I did push our endo to order an MRI. Charissa had been treated for growth

hormone deficiency for nearly 13 years and had never had an MRI. All 4 of the

endos we had over the years (due to relocation) thought an MRI would be

" interesting but not necessary " . When the MRI that I had insisted on came back

showing multiple abnormalities of the white matter of the brain we were

immediately referred to the new neurologist in town, who turned out to be a

wonderful doctor.

I had to be persistant to get Charissa established with a good psychiatrist

and counselor to work with her on the behavioral issues. My husband thought it

was a waste of time & money when none of the medications tried helped her, and

he didn't see the counselor making much of a difference in her behavior. But

having these 2 professionals work with the neurologist and look at and

understand how her medical uniqueness and behavioral issues go together was an

important key.

All this established a new paper trail to present when applying for support

services, and it appears to be paying off. She has already been approved by

the state, and right now the SSI application is flying through in record time -

mainly because I could submit such extensive documentation with the application

that they do not have to spend time requesting additional information from the

doctors.

It is a fine line sometimes between making sure everything has been covered

and being desparate for answers. I know that there is no magic pill to " cure "

Charissa, but there are supports out there to help her live up to her maximum

potential. And as a mom, I am glad that I listened to that " gut instinct " that

told me to keep asking questions.

in Alaska

RSS-Support wrote:

Date: Wed, 8 Feb 2006 15:52:41 -0800 (PST)

From: Jeanie Kinnicutt

Subject: Re: Question regarding RSS look...Jeanie

I totally agree with you on that. Sometimes hope is all you have. BUT, I have

been driving myself crazy with all the worry and " what if's " . I have found

myself sort of " waiting for the bomb to drop " . I know there are alot of people

on here that feel the same way. It's frustrating and exhausting and painful.

Like I said.........it's just MY THEORY. No one has to agree with me. LOL I just

know that, until recently, I have been OBSESSED with RSS. I eat when I'm

stressed out. I've gained 40 lbs. since Brockton was born! OUCH! I'm getting

married in July and I look terrible! For my own peace of mind, I have to let go

of this obsession and take care of myself and my son. Believe me..........I

don't, by any means, think that our childrens health issues aren't important. I

just think that if your RSS child doesn't have any of the serious issues at the

moment, you shouldn't let it get the best of you. My heart aches for those on

this site that have children with very serious

RSS related illnesses. Fortunately, Brockton doesn't have any of

them............which isn't to say that he never will. I've just decided to let

go for now and worry about those issues when they come.

Thanks for your input.

Jeanie

VisibleWorship@... wrote:

In a message dated 2/8/2006 4:13:23 PM Central Standard Time,

awesome929@... writes:

Sometimes I think we just want to put a name with issues our children have,

such as height and weight issues. I've decided that I'm just going to accept

my son as he is and not give him a label until he has SERIOUS issues. Life

is just too short to worry about things that may never come to pass! That's

just my theory.

Just wanted to pipe in here...not trying to start a debate. I disagree with

this on some levels. Our kids will never be a label to us and to some with

very mild issues, it doesn't matter I suppose. But my child, like many

others here, have hypoglycemia and its nervewracking not having an explanation

of

why your child has this life-threatening problem. If there's an explanation

it helps to know it.

For those with kids with hypoG...with RSS it doens't change treatment but

kids with Fatty Oxidation disorders (many also have hypoG), it would make a huge

difference. Those children can die if they are not on the right kind of

diet and you don't know if you need that diet unless you have a diagnosis.

I think the yearning for a diagnosis is living in the hope that there may be

a way to fix it. I think that's why we get so determined to get one...how

do you know you can't do something about it, if you don't know what IT is.

Does that make sense? I know some see it as labeling...I see it as living in

hope.

deb...mom to four fab adopted kiddos... (07.04.96-05.26.03) with

Mitochondrial Myopathy...G, 6, with High Functioning Autism, Hypoglycemia and

Precocious Puberty...B, 4, with VERY mild Cerebral Palsy...and True 1yo, with

Neuromotor Disorder, Hypoglycemia, Myoclonus, ulcers, undiagnosed GI problems

plus severe food allergies (Eggs, Peanut, Milk, Soy, Corn, Rice, Oats and

Crab/Neocate-only), Plagiocephaly and Dysphagia....Married for 12 years to

F--one

swell guy!_ www.caringbridge.org/tn/wells/_

(http://www.caringbridge.org/tn/wells/) (http://www.lifeofloveproject.org/)

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

Yahoo! Mail

Use Photomail to share photos without annoying attachments.

February 11, 2006

B,

Charissa had 3 MRI's in 5 years (to make sure her brain leisions weren't

progressive). The 1st & 3rd one the orders were written up by the doctor to

include a good look at the pituitary. However, the didn't get good pictures of

it either time. They did note that it appears somewhat smaller than normal and

no tumors (which would show as " hot spots " on the MRI). Our neurologist looked

at the films himself, and he said it looks like the pituitary might not be at

the same " depth " as in other people, which might be why they couldn't get a good

look at it. He did agree that there is no tumor.

We haven't had any followup to get a new prolactin test done. Charissa was

supposed to see the ped endo last October, but the endo has been on maternity

leave since last summer & keeps extending it. Another endo who used to come up

every month from Seattle for the same clinic passed away a few months ago, and

the clinic has been trying to have another doctor come up from Seattle for a few

days each month, but thay are having a hard time with it and is pretty much

reserved for the more " urgent " cases. They are keeping a waiting list for the

non-urgent cases, but have no idea when we could get an appointment. I have

been so busy with Charissa's disability paperwork that I haven't spent time

trying to find an endo for adults that might be a good match for Charissa, or if

one even exists here.

Her prolactin level is high for a non-lactating adult, but not so high that it

would raise a panic in the doctor. Sort of like everything else about Charissa

- somewhat abnormal, but not abnormal enough to fit in any one category (lol).

The last time we saw the ped endo, she did say that the low estrogen & high

prolactin is probably what is causing the out-of-whack menstrual cycle. Her

test results at that time were:

Bone density (DEXA) : -1.9 (normal: -2.4)

Estradiol ES2 : 2.0

FSH: 6.90

LH: 2.6

Prolactin ES: 63 (normal is 3.0 to 24.0)

in Alaska

RSS-Support wrote:

Date: Sat, 11 Feb 2006 05:23:02 -0800 (PST)

From: Briggs

Subject: Re: Re: Question regarding RSS look... to (MRI)

As you know, 's first stim test came back " interesting " to Dr. H. Her gh

level was like a 6.6 and her cortisol level was low and her prolactin level was

high. You said that Charissa had a high prolactin level. We did another stim

test at Dr. H's office (two weeks ago this coming Monday) and we go back on the

24th to get the results. According to the computer in the room, the two

diagnosis for were growth hormone deficient and pituitary dwarfism.

Depending on if she fails this blood test then we are on are way for the MRI. I

was talking to my family doctor and telling him about the blood results and he

stopped in his tracks and said wait a minute now, this is the pituitary and you

need an MRI. What I have read (from the site you sent me) about the pituitary

and high prolactin levels were benign tumors on the pituitary. Was that found

with Charissa and if so, is she medicated for that? Also, once you mentioned

about having her prolactin levels tested

again, have you done that yet? I'm trying to understand and hopefully you can

help. It seems like the prolactin level is high for he age? but if she were an

adult this would be normal? Is that what is going on with Charissa? As my doctor

explained to me if you were pregnant and then especially nursing, your prolactin

would be high and that's why the chance of getting pregnant during that time

(nursing) is slim - not impossible but slim. So is that the reason for the

menstrual cycle being crazy? right.

You can either post or e-mail me privately. I plan on letting Dr. H know about

Charissa like you said before.

Thank you,

B

and Kelli

R wrote:

Jeanie & Deb,

You both have brought up some great points! When Charissa was little and under

the RSS diagnosis I was concerned, but very calm & not fretting at all. I did

such a great job of handling the day-to-day issues of her poor eating,