Hi everyone, just wanted to say hello. I am new to the board and here to give and recieve support. I have NF1 and so do both of my children. My son is 6 and in the middle of test after test. He has an optic glioma and on the borderline of puberty (percocious). I am looking forward to talking with you

Leah

Hey, Leah.

I'm so sorry you're going through this with your little guy. I went through puberty at 8, and it was early enough.

If you haven't yet, schedule an appt with a ped endocrinologist. Six is way too young to be going through puberty, especially for a boy. Things can be done to slow it down or even stop it.

Good luck!



LIZARD

Hi Leah and Welcome to Neurotalk.

I'm not good with abbreviations so i'm not sure what NF1 is...

Here is the link to our Children's Health Forum to get you started...
http://neurotalk.psychcentral.com/forum9.html


Please feel free to roam around and join in anywhere...
If you have any questions or need any help please let us know...someone will be around shortly to help you in any way that we can...

again...

Abbie

Hello Leah and another Welcome to NeuroTalk here. Sorry I can't help w/your request, but please take a look around and make yourself at home.

Hello Leah. I'm afraid I don't know what NF1 is either, but hopefully some of the other members will be able to help you out.

I just wanted to let you know how lovely it is to meet you. I hope you'll soon feel right at home with us.

Leah,

Hello and welcome to NeuroTalk. Great to see you have come to be with us. You will find a great number of caring, supporting members here willing to help each other as they can.

Again welcome, looking forward to seeing you around.

Darlene

Thanks for being so welcoming.. We had our follow up with the endocronogist last week. He had to go in for futher blood tests. Tetsosrerone, cortisol, and some other stuff.(sp?) I know 6 is way to early, it scares me alot! How did going through puberty affect you at that early age and if you dont mind me asking, wht was the casue of yours?

Not at all. I have hydrocephalus, dx'ed at 3 weeks old, and I suspect my difficult high forceps delivery was also to blame, though my mom and grandmother were also 8 yo when they started. (My sisters were 12 and 14. Figures...)

The effects for me were mostly emotional. It scared me to go through it so early--and so fast--and no one talked about it. I didn't even know what a period was until I had ruined all my clothes! I felt embarrassed, ashamed, and my emotional state, already fragile from my hydro, was a nightmare. I cried in mid-sentence about nothing at all. I have claimed to have gone through 15 years of puberty because from 8 to 13, I had all the physical, and then the emotional went from 13-18.

I was no sooner getting on top of that when my life went out from under me for 3 years because of an epi med reaction:

Once that was dealt with, I started piecing my life back together and moving forward.


LIZARD

yeah that is intense. They did not or could not put you on anything to stop it? It's possible my son will be put on meds which I am not a fan of to stop it. Appaerntly the hypothalamus is a part of your brain that suppots hormones if I am correct with my verbage here. If his optic glioma is extended into that reigion that is the casue. With NF early or delayed puberty is very possible although there is only a 5% of early puberty my son is on the boderline. Ill look up your condion, I am verry interested. I love medical stuff! Any how I could see how socialy it would be difficult. My son is defantily expiericing problems with his peers. Hes always been so tall an eveyone assumes he so much older. He is 6 weighs 72 punds, 4'2'' wears a size 10 and a 5 shoe. GESH!

Hi Leah! Welcome to NeuroTalk!

Feel free to join in anywhere, I'm sure there are many who can benefit from your experience.