- BIG HELP, HERE!

[Guest guest]

We are having a (possibly) major crisis here.

has been having a lot of pain in her arm/shoulder and left foot/leg

since April 18. Today she could do minimal movement of her left

arm/shoulder. Last Thurs. (4/22) we got a scolisosis screening x-ray. Today

we went to review the radiology report with our family doctor (Fohl).

has a 10 degree dextroscoliosis in the lumbar spine (L1-L5), none

identified in the thoracic spine, and minimal rotation in the upper thoracic

spine (rotated to the left, as evidenced by her shoulder/chest position).

More concerning was the additional finding noted. There is a " differential

in bone lesions, such as fibrous dysplasia, chondroblastoma, aneurysmal bone

cyst, and osteoblastoma " of the left inferior pubic ramus. I can tell you

the last word in the quoted part scares the hell out of me. (ly, none

of them sound great, but the osteoblastoma could be a VERY BIG THING!) The

lesion is 1.2 cm.

We will doing an x-ray of her left shoulder and humerous yet this week. We

will also be going for an MRI of her pelvic area (where the additional

finding is noted), hopefully on Friday.

I'd like any info anyone has on ANY of these 4 noted things - good, bad, or

of no consequence. I'd also like to know what specialists have been

involved with each problem, and what treatments were accomplished.

This whole thing (limping, arm/shoulder pain, foot/ankle pain, fatigue) had

all come on very quickly starting back on April 16. She also complained of

neck pain. Needless to say, we are very concerned. Dr. Fohl asked who we

saw at Riley (Children's Hospital) for the CHARGE coordination. When I told

him we didn't, that I did all the coordinating with specialists, he was

stunned. Dr. Fohl couldn't believe there is no CHARGE Clinic at Riley.

Does anyone know of a hospital that does? I know Meg Hefner has wanted to

get one up and running in St. Louis, but it has not yet been accomplished.

When I told someone at church to please put on the prayer list, she

asked if I knew of a CHARGE Clinic, and she felt sure the church would do

whatever it might take to get there. Any input on that is also

welcome. We will be contacting one of 's specialists who I know will

listen to us and get us in the right direction - he always has, so I have to

believe that.

Please - whatever denomination you are; whatever faith you follow; whatever

God you believe in - please, please, please offer prayers for - and

our family. Please pray for me to have a calmness and to be optimistic - I

have to for both and Kenny.

This whole thing is making me truly sick and scared. I have a very bad

feeling about this. I am normally very pragmatic and hopeful - you do what

needs done and move on with the best outcome. But the possibilities in this

are just too big to even get my mind wrapped around. I've had to tell Kenny

something because he knows she's had x-rays and that she is having further

testing. I've tried not to make it negative; but he's very

sensative/imaginative, and told me tonight that he hopes the news is not too

bad. And, " If something's in there, it's no wonder it hurts her to walk. "

So I know he is now thinking things may not be looking too good for .

It is just so very hard to be optimistic when I know is in pretty

bad pain - and it takes a lot of pain before she shows it. She is taking 2

tsp. Ibuprophen every 6 hours, and 3 hours into it she is limping and

complaining about her joints. Sunday she couldn't fingerspell with her left

hand, and today she couldn't even get her pants down in the bathroom because

she couldn't use her left arm - it hurt too much.

I've been asking for a lot of input lately, I know. And not giving much

back - it's been so busy. But we really, really need help on this one. I

don't even know where to begin once the MRI is done. And Dr. Fohl must not

be too sure either because he wants us to see " someone " at Riley who has

knowledge of CHARGE. There is no one - except maybe the geneticist we

consulted with about diagnosis - who has a whole picture of CHARGE. And is

this even a CHARGE thing, or something totally way out there? Digging for

my CHARGE manual tonight; I'll be hitting the book again. Lots of time Wed.

night as we go to Riley for a sleep study that has been scheduled for 2

months. I don't sleep well at the hospital, so I guess I'll be doing lots

of research.

Waaaaayyyyy too long here, and sorry about that. I'm desperate and don't

even have the diagnosis yet. But I want to be prepared to act quickly on

whatever the findings are. Dr. Fohl is concerned enough about the lesion

that he isn't actively addressing the scoliosis until we find out what else

is going on.

Friends in CHARGE,

Marilyn Ogan

Mom of Ken (14 yrs., ADD) and (11 yrs., CHARGE+)

Wife of Rick

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