Re: Another little piece of the Logan puzzle (long)

[Guest guest]

Wow. Kim. Poor Logan. This is just so unfair. Hang in there. I feel your

frustrations!!! How did Logan take the news? If he is even able to

comprehend it? Give Logan a big hug from Caroline and I... Hang in there...

Alia and Caroline, age 2, poly/uveitis

Another little piece of the Logan puzzle (long)

Well,,,,here goes,,first off,,Ethan has strep (AGGHHHH)and Logan is in a

flare. He has been complaining of his right knee,for 2 days now. On

Tuesday,after I got back from the ped,with Ethan,,Logan was having alot

of pain,in his knee(that usually means he has strep),so I rushed back up

there,and had them do a strep test,,I was certain he had it,but he

didn't. He was ok,off and on throughout that day. I had to wake him up

early this morning,to go to his neurology appointment,and he started

crying saying he had been awake all night with his knee hurting. Took him

several hours to be able to walk,,and he still can't straighten it all

the way.

So,,we go to the neuro appointment,(this is for his strange

speech problem,from last year,when all of a sudden he stopped saying his

" R " sounds,and replaced it with a " Y " ,,and replaced his " th " with an

" f " ,,and his developmental delays,,took this long to get in) Anyway,,the

neuro was a very wonderful Dr,,although he didn't have any idea why he

would all of a sudden drop those sounds. He has ordered an MRI,just to

check his brain to make sure he doesn't have some deteriorative

disorder,,and that he didn't have a stroke,,or anything like that. As far

as Logan's pain,,and his overall 'floppyness',and his muscle

weakness,,,he feels he definitely has Ehlers Danlos syndrome. Which

means,,in layman terms,,Logan will never outgrow this,,he will never go

into remission,,he will most likely always be in pain,,and he will always

have weak muscles,and low muscle tone. Depressing,huh? I will be making

an appointment with the genetics Dr (That is the Dr who gives the

'official' dx of Ehlers Danlos)and I'll see if she has any suggestions.

The neuro wants Logan to see a psychologist,to help with his anxiety and

frustration,over not being able to do what 'normal' kids do.

I'm pretty depressed,,and I'm going to bed now. Talk to ya'll later.

Kim and Logan

P.S. I'm not sure,now if Logan is in an arthritis flare,,or if this is

from the Ehlers Danlos?? Any ideas ? I wonder if his daily pain is the

ED,,and the severe pain,,that makes him stop walking is the arthritis?

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[Guest guest]

Alia,

Thanks for the reply. I haven't told Logan about it yet. He is only

6,and he has many developmental delays,including being very delayed

emotionally,and immaturity,,so I don't think he would really understand

it. I will wait until after his MRI,,and after the genetics

appointment,,then we'll see.

Thanks again,,for your thoughts,,I really appreciate it.

Kim and Logan

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[Guest guest]

Hi Kim:

Sorry to hear Ethan got a case of strep:( I am glad that Logan escaped it

this time.

When do you go for the MRI? Have you had any luck getting an appointment

with the geneticist. I know here you have to wait forever it seems for an

appointment with a geneticist. I am sorry the doc feels it is Ehlers Danlos:(

I

hope the geneticist will say " no he doesn't have that " .

Please let us know how Logan is doing and what you find out. Will keep you

in my thoughts and prayers.

Take care.

Patty