SUHAD ///RE: Katelyn's endo appointment

[Guest guest]

Suhad,

WOW,,I have heard of precoscious puberty,but never known anyone that has had

it. My friends daughter started her period,when she was just 9,and I thought

that was unbelievable,but she never took her to a Dr,to check it out. I would

have,,but then again,,I practically live at Cooks Children's Specialty

clinic.LOL

I am staying put,until we get the tests results back,,then I will take the

results and find someone that cares. She ordered ACTH,Cortisol,Renal,Fasting

blood sugar and insulin,fasting lipid panel,to be done at 8 AM,,then the ACTH

and Cortisol to be done at 10 PM. I have no idea what she is looking for,,she

did ask if she had ever been tested for diabetes and she mentioned Cushings

syndrome. I don't know really what that is,,but I guess we will know soon

enough.

BTW,,I wanted to tell you that I am so sorry for your loss. Samya is a

beautiful girl. I went to your website,and was just struck by her beauty. I

especially love the picture of her in the turquise hat and dress. I feel so

bad,complaining about my problems,when you have dealt with such a tragedy. And

no,,I don't think you are crazy,for holding your daughter and imagining that she

is Samya. When a good friend of ours first commited suicide,I would play and

replay his message on the answering machine,,,trying to pretend that he was

still alive. It has been 7 yrs,,and it still hurts. So,,if you are crazy,,then I

am crazy,,so you aren't alone

Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital

myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY

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[Guest guest]

Dear Kim,

I am so sorry, but I made a mistake when I mentioned Samya's reason for

seeing the endo.I guess I was so mad at what happened to you that I did not

even realize my misrake. Samya did not eber have precocious puberty. She

started having symptoms at age 5 and we went to an endo in suspicion of

precocious puberty. She diagnosed her with premature adrenarche. Her body

was making too much hormome causing her to have mild symptoms of puberty

such as hair growth etc. She never got a period, but we were always afraid

of that. She would see the endo for follow ups every 6 months with blood

draws and bone age x rays. Her bone age was always smaller than her age and

with precocious puberty it is always bigger than actual age, she was never

treated, just followed up. The endo told us that her symptoms were in her

outer skin and hair production but not in her actual glands to effect

menstruation. This was all before mito was ever suspected. After Samya died,

I called the endocrinologist to tell her that Samya died and she was

shocked.She sees mito kids but said she never suspected mito with Samya.

I am so sorry for the mistake I made. I guess that word " precocious

puberty " was on my mind while I was typing because I was always so worried

about it. She called it, " premature Adrenarche " . Nothing ever came of it

except annoying visits. X rays and blood draws for poor Samya for no reason.

 

 

Suhad Haddad  --  Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna

with same disease.

Samya's Memorial Site: www.samyahaddad.com/.org/.net

Email: Suhad1970@...

Alt Email: Suhad@...

AiM Chat: Suhad1970

SUHAD ///RE: Katelyn's endo appointment

Suhad,

WOW,,I have heard of precoscious puberty,but never known anyone that has

had it. My friends daughter started her period,when she was just 9,and I

thought that was unbelievable,but she never took her to a Dr,to check it

out. I would have,,but then again,,I practically live at Cooks Children's

Specialty clinic.LOL

I am staying put,until we get the tests results back,,then I will take the

results and find someone that cares. She ordered ACTH,Cortisol,Renal,Fasting

blood sugar and insulin,fasting lipid panel,to be done at 8 AM,,then the

ACTH and Cortisol to be done at 10 PM. I have no idea what she is looking

for,,she did ask if she had ever been tested for diabetes and she mentioned

Cushings syndrome. I don't know really what that is,,but I guess we will

know soon enough.

BTW,,I wanted to tell you that I am so sorry for your loss. Samya is a

beautiful girl. I went to your website,and was just struck by her beauty. I

especially love the picture of her in the turquise hat and dress. I feel so

bad,complaining about my problems,when you have dealt with such a tragedy.

And no,,I don't think you are crazy,for holding your daughter and imagining

that she is Samya. When a good friend of ours first commited suicide,I

would play and replay his message on the answering machine,,,trying to

pretend that he was still alive. It has been 7 yrs,,and it still hurts.

So,,if you are crazy,,then I am crazy,,so you aren't alone

Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7

Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and

Ethan 5 and 100 % BOY

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