Re: 5 y/o Son just diagnosed with Chiari I

[Guest guest]

yes, a family with Chiari's can be the biggest circus in the world.

You have to stay strong for them while you yourself are having a bad

day or bad week.

Be thankful we are in the times of information and not just 50 years

ago when most thought, we where fibbers and trying to get out of doing

the farm duties!

It's hard! As a parent we have to struggle with what we think is the

right solution to the problem. Yes, more situations might come about

now that you solve problem one, and now problem two has time to show

it's ugly head! When we take away the large pain, smaller pain has

time to present itself. As before the larger issue masked the smaller

ones!

Does you daughter have ADS tissue disorder? I know after my

decompression and shunt, all the other pain was nothing in

comparison.

But my head became instable, (kind of like bobble head in a way).

So, like I have said so many times in my post:

Having a Chiari is life changing for everyone in your family! Own it

and Live it with Love!

Use the list of Chiari doctors and always be careful of referrals!

______________________________________

My almost 5 year old son is pushing the idea that I might have to

consider some type of treatment to help with his leg pain and pee flow

problem. We do know already he is confirmed with CM1, and I'm going

to have him tested for ADS, tissue disorder! We hope we make the

right decisions, but it's just like everything else we do for our

families! We do our best with the information that we have!

My prayers are with you as a parent in need of strength to make the

right decisions!

Bea