Dylans update

[Guest guest]

Hi all thanks so much for all the thoughts and prayers. I must say I was a bit

surprised by the amount of responses from a vent post. I picked him up a walker

today. So tomorrow morning he will go for x-rays. I know many of you suggested

the hospital, especially Children's Hospital. Been there done that. They just

don't help. Our Children's Hospital is the only one that can take Dylan now. If

I take him to the local one, the transfer him there anyway. We have had such bad

luck with them helping. They don't know EDS other than, " oh I heard of that

one " . He comes home in more pain than he left. All I can say is, a mom knows

when it's time to go to the ER. A year ago, I would have called an ambulance.

Now, after so many things to deal with, and having gone so many times,

emergencies are not the same as they used to be. We really need to find out why

this knee is not supporting him. So here we go again. He has had so many issues

come up, I'm surprised no Dr along the way has taken the time to try to figure

this all out. I try to give them the whole picture, but they just take care of

the issue at hand. One of these days, I'll find the right Dr. In the mean time,

I'm learning better to deal with all this.

He hurts allot, but I keep him on the meds round the clock. With the walker I

can get him to the car, and from there he has his rental wheel chair. Now I need

to convince him to change bedrooms. He needs to be closer to the bathroom.

Off to make chicken soup. Everybody except Dylan is sick. Thanks so much all.

Cindy C.

[Guest guest]

Hi Cindy,

You know, with all Dylan's problems, I can't see why they don't just

do a whole body MRI/scan type of thing, but at least for his knee,

that may be the only thing that will show why he's having so much

pain. Please let us know what you find out, and please know you and

Dylan will be in our prayers!

Love Lana

[Guest guest]

Thanks for your replies. I'll never stop trying to find help for him. My

insurance doesn't make it easy. I did contact Dr Joyce, he referred me to

someone else. The way I see it with my insurance, I have one shot at going out

of state. I'm trying to find the best possible choice to find him the help he

needs. NIH doesn't want to see him at this time, some Drs won't see him till

he's 18. There are a few good Drs out there, but which one do I choose? I hear

allot of Dr Grubb if I spelled that right. Hopkins may be willing to do a 2

day team work up on him, which might be the best thing for him. There are

several other docs I have emailed, but they didn't want to see him or didn't

return a reply. I am sure something is missing from his Diagnosis. I'm writing

his SSA paper now, I wish I had the whole picture to include in the paperwork,

but it's time to get these papers done. I've waited long enough. I continue to

work on him at home with polarity. It helps allot in some areas. And I'm looking

for a Cranial Sacral Practitioner to work on him. Boy, writing that SSA letter,

was the hardest thing I've ever had to write. It's so hard to see it all down in

print. I have tears now thinking of how he has declined in one year. His new

primary said he is sure Dylan will get it first time around, Well, that doesn't

exactly make my happy. It's like admitting he will be permanently disabled now.

I just have to keep trying alternative medicine and hope for an answer. I will

try every safe possibility I can find. And I will continue to get him out of

state to someone. Cindy C

Re: Dylans update

Hi Cindy,

You know, with all Dylan's problems, I can't see why they don't just

do a whole body MRI/scan type of thing, but at least for his knee,

that may be the only thing that will show why he's having so much

pain. Please let us know what you find out, and please know you and

Dylan will be in our prayers!

Love Lana

To learn more about EDS, visit our website: http://www.ceda.ca

[Guest guest]

----- Original Message -----

From: Boy, writing that SSA letter, was the hardest thing I've ever had to

write. It's so hard to see it all down in print. I have tears now thinking of

how he has declined in one year. His new primary said he is sure Dylan will get

it first time around, Well, that doesn't exactly make my happy. It's like

admitting he will be permanently disabled now.

Cindy - just remember that if he can get the appropriate treatment (it's out

there...just tough to find) that he can always go off SSD...

A friend of ours had major back surgery which ended up failing. He went on

SSD, went to tech school for computer aided design, found a job that would be

very suitable for him with major back problems. He's on heavy duty pain meds

for the back, but he's off SSD.

Keep hanging in there!