News from Cindy about Dylan

[Guest guest]

Well, they have released Dylan to go home, and they are on their way as I

type this. She just called. Clair and Nazli both went over to the hospital

where the MRI was done to check Dylan out personally. After they got him on

the table, they found that it wasn't anything to worry about at the moment.

Cindy said they found the same thing with him yesterday as well! They are

to follow up with Dylan's doctor about this heart thing; as well as

everything else, which includes the following (all of which they didn't know

about or realize): bulging disk at T-12-L1, the spine at C-7 is at a

45degree angle when he bends his head forward-so there is a possibility he

could break his neck and become paralyzed; his shoulders dislocate hundreds

of times a day, there's permanent nerve damage to the right leg. I asked

Cindy if she was going to sue the doctor who missed that, but she doesn't

have proof yet. It doesn't really show up on the MRI or anything, so a

nerve conduction test will probably need to be done to prove that there is

permanent damage. A neurologist will do that. They also want her to see a

cardiologist, naturally, and perhaps a neurosurgeon. Cindy said there's

more, but she's so tired and worked up that she can't remember it all.

Clair or Nazli is going to fax the whole list of things tomorrow that need

to be followed up on. The one test they didn't have back yet was the halter

monitor or heart monitor 24 hour test. I THINK I have that right. Anyway,

Clair said she will be able to tell more about the bradycardia once she gets

the test back; however, for the moment, there isn't anything to worry about.

Being a Mom, I would worry anyway, and I'm sure Cindy IS! Who wouldn't??

Now, as far as the study goes for other EDSers, you do NOT have to have a

diagnosis. In fact, if you don't have a diagnosis, it will probably be

possible for you to finally get one, as they do a skin plug. They didn't do

one on Dylan, as they felt it wasn't necessary. I doubt they will do one on

me either, as I had one done a couple years ago. It didn't say what type I

was, just that I wasn't type IV. Also, they CANNOT ASK people to be in the

study, nor contact them to ask! YOU have to contact THEM and ASK to be in

the study. I had to send them my social security number, phone number,

emergency contact number, height, weight and any special needs you may have

such as a wheelchair or dietary needs. If you have dates in mind that you

want to go, they will need to check availability first and get back to you.

Cindy said EVERYONE there is WONDERFUL! Even the cleaning staff was

visiting with her at 2 a.m.! She said they are always cleaning - the place

is immaculate!

I was much relieved to know that there was nothing else going on with Dylan,

however he IS STILL in bradycardia at 40-50 beats per minute. Please keep

them in your thoughts and prayers. Also, I have news from Sis that I will

be posting about in a bit too. I've been busy! :-) God, I love all of you

so much! I must go and start on the email from Sis and do laundry and my

hair, etc. etc.

Love Lana 0:-)

p.s. I almost forgot - here is Nazli's phone number and her email address,

which you will need if you want to participate in the study. Remember, YOU

need to contact THEM and ASK to be included. Email:

McDonnellNa@... Phone #: