Re: Prolactin Levelsk... to Chris& (MRI)

[Guest guest]

I just read your post regarding high Prolactin levels, my daughter had blood

tests done back in Sept 05, according to a website I looked at, these levels can

be high for a number of reasons including stress and if taking Domperidone (both

of these apply to my daughter) Stress because she is petrified of

hospitals/doctors etc. vomits when ever I take her in a waiting room, screams

and cries the whole time.

Bobbi is due to get her bloods re-tested in the Spring, and if still high, Dr.

Stanhope wants an MRI scan to rule out a Pituitary tumor. The fact my daughter

takes Domperidone was not mentioned, I just saw it on the website and was

wondering whether your children also take it???

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/)

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[Guest guest]

Brigitte,

Our ped endo also mentioned stress that might cause the elevated prolactin

level. Charissa sometimes gets a bit anxious about blood tests because she has

had some bad experiences (her veins are thin and have a tendency to roll) so the

endo ordered the test repeated & we made sure to have a really great lab tech

that was good at making Charissa distracted and relaxed. The prolactin level

was still high. And no, Charissa does not take Domperidone. But I'm glad you

asked - something to keep in mind!

in Alaska

RSS-Support wrote:

Date: Sat, 11 Feb 2006 21:07:46 -0000

From: " brigitte foreman "

Subject: Re: Re: Prolactin Levelsk... to & (MRI)

I just read your post regarding high Prolactin levels, my daughter had blood

tests done back in Sept 05, according to a website I looked at, these levels can

be high for a number of reasons including stress and if taking Domperidone (both

of these apply to my daughter) Stress because she is petrified of

hospitals/doctors etc. vomits when ever I take her in a waiting room, screams

and cries the whole time.

Bobbi is due to get her bloods re-tested in the Spring, and if still high, Dr.

Stanhope wants an MRI scan to rule out a Pituitary tumor. The fact my daughter

takes Domperidone was not mentioned, I just saw it on the website and was

wondering whether your children also take it???

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

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[Guest guest]

Brigitte,

is not on Domperidone either. She was of course, screaming when they

were putting in the IV and when they would come in the room to draw the blood.

This time, however, she was much better. Upset but not flipping out.

I will let you know on the 24th if her level is still high.

B

and Kelli

R wrote:

Brigitte,

Our ped endo also mentioned stress that might cause the elevated prolactin

level. Charissa sometimes gets a bit anxious about blood tests because she has

had some bad experiences (her veins are thin and have a tendency to roll) so the

endo ordered the test repeated & we made sure to have a really great lab tech

that was good at making Charissa distracted and relaxed. The prolactin level

was still high. And no, Charissa does not take Domperidone. But I'm glad you

asked - something to keep in mind!

in Alaska

RSS-Support wrote:

Date: Sat, 11 Feb 2006 21:07:46 -0000

From: " brigitte foreman "

Subject: Re: Re: Prolactin Levelsk... to & (MRI)

I just read your post regarding high Prolactin levels, my daughter had blood

tests done back in Sept 05, according to a website I looked at, these levels can

be high for a number of reasons including stress and if taking Domperidone (both

of these apply to my daughter) Stress because she is petrified of

hospitals/doctors etc. vomits when ever I take her in a waiting room, screams

and cries the whole time.

Bobbi is due to get her bloods re-tested in the Spring, and if still high, Dr.

Stanhope wants an MRI scan to rule out a Pituitary tumor. The fact my daughter

takes Domperidone was not mentioned, I just saw it on the website and was

wondering whether your children also take it???

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

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[Guest guest]

Thanks I would be interested to know what 's Prolactin levels are

from the second test. Does anyone know if this is a common thing with RSS??????

Brigitte

Re: Re: Prolactin Levelsk... to & (MRI)

I just read your post regarding high Prolactin levels, my daughter had blood

tests done back in Sept 05, according to a website I looked at, these levels can

be high for a number of reasons including stress and if taking Domperidone (both

of these apply to my daughter) Stress because she is petrified of

hospitals/doctors etc. vomits when ever I take her in a waiting room, screams

and cries the whole time.

Bobbi is due to get her bloods re-tested in the Spring, and if still high, Dr.

Stanhope wants an MRI scan to rule out a Pituitary tumor. The fact my daughter

takes Domperidone was not mentioned, I just saw it on the website and was

wondering whether your children also take it???

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

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