More questions and update on

[Guest guest]

Thank you so much !!! Yes it feels very good to know what's going on with

. Now we can move forward. Today was the first day of school. I drove

to school but not . He was sick this morning and had major nose bleeds

lastnight and during the night. Does any other EDS patient have nose bleeds

often??? ' are GUSHERS. I would say he bleeds around 2-3 tablespoons

worth. It's scary. At first I thought it was from picking his nose, but watching

him, it's not. It just happens. I have to take to the docs after school. I

think I'll bring him too. Anyways....I talked to the school nurse about

and then went to see ' teacher. Mr. Gardner is a sweetheart!!!! He fully

understands. He said for to take his time and when he is ready to come to

school great! He was very sweet with the work too. I said for him to send it

with and he said there isn't going to be work to send home cause they do

most of it is school. When felt comfortable coming to school he will work

with to catch him up. This man is awesome!!!! I do have a question

though. Should I let them know shouldn't do high impact activities??? We

don't know what type of EDS we have. We have aneurism history, ( I have one now)

but also very lose joints too. He has a terrible time with his ankles always

giving out as do I. But also his shoulder and he gets very sore fast. Or do I

just let them make him do gym and all the activities? Thanks once again for

everyone that replies. Everyone here is so wonderful and I am very thankful I

found this place!!!!

HUGGLES,

Grace

EDS, It's a Life Thing

http://www.ehlersdanlos.ca/whateds.htm

Re: Yet another Question........

Dear Grace,

I am so glad that you were able to find out what is going on with your son.

Still, I know that it must be disturbing to hear sosmething that sounds so

scary.

I worked with a small number of kids who received that diagnosis during the

time I worked as a counselor to elementary aged kids. I have seen these bright

kids, more often than not, move on to succeed with their personal

relationships and academics in a highly competitive envirnment. This disorder,

like most

everything, can run gamult in terms of severity so please do not allow it to

scare you.

Find a good person to help you understand it further annd a good person that

you son can relate to and that will give you feedback on parennting skills

with your son.

Isn't it good to know what you are dealing with?

Take care,

diana

[Guest guest]

In a message dated 8/30/2004 7:26:00 AM Pacific Standard Time,

jbmohr@... writes:

Mom had them as a child and Grandma had them even as an adult.

They've been common in our family also. Sometimes they seem to be seasonal &

the doctors say since the veins are tiny & close to the surface, they dry out

& crack easily?

Liza

[Guest guest]

Grace -

My sister had tons and tons of nosebleeds as a teenager. Didn't know

about the EDS then - and for her it caused a lot of problems at

school. The teachers thought she was doing it on purpose somehow

(must have been magical 'cause they never caught her doing

anything). Mom trotted her off to many different doctors, she had it

cauterized and perhaps other procedures - eventually she mostly grew

out of it. Hers would drip and a pretty good pace, but they weren't

really gushers - and they would last for a couple hours - lots of

blood - at least a few tablespoons.

Mom had them as a child and Grandma had them even as an adult. Looks

like one of my girls might start with them, also - she had one last

week, but it was only about 15 min long.

> He was sick this morning and had major nose bleeds lastnight and

during the night. Does any other EDS patient have nose bleeds

often??? ' are GUSHERS. I would say he bleeds around 2-3

tablespoons worth. It's scary. At first I thought it was from picking

his nose, but watching him, it's not. It just happens. I have to take

to the docs after school. I think I'll bring him too.

[Guest guest]

Grace -

My sister had tons and tons of nosebleeds as a teenager. Didn't know

about the EDS then - and for her it caused a lot of problems at

school. The teachers thought she was doing it on purpose somehow

(must have been magical 'cause they never caught her doing

anything). Mom trotted her off to many different doctors, she had it

cauterized and perhaps other procedures - eventually she mostly grew

out of it. Hers would drip and a pretty good pace, but they weren't

really gushers - and they would last for a couple hours - lots of

blood - at least a few tablespoons.

Mom had them as a child and Grandma had them even as an adult. Looks

like one of my girls might start with them, also - she had one last

week, but it was only about 15 min long.

> He was sick this morning and had major nose bleeds lastnight and

during the night. Does any other EDS patient have nose bleeds

often??? ' are GUSHERS. I would say he bleeds around 2-3

tablespoons worth. It's scary. At first I thought it was from picking

his nose, but watching him, it's not. It just happens. I have to take

to the docs after school. I think I'll bring him too.