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Old 01-22-2005, 05:43 PM
Gail G
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Default question for Hank

Hank, thank you for replying to my post about my new son. i hope i did not offend you with my question about where did my son my go. I was not thinking who was actually reading my posts and feel bad about that. Please know that I am having trouble handling this and am hoping that being one week from delivery (and then was just days) and being post partum with hormones in flare is not helping. But i am starting to feel better.
Question, my son like you, has PWS in his eyes. i was encouraged to read that you have escaped from developing glaucoma. have you been on drops this whole time? We were seen by Dr Parsa at the Wilmer Institute @ Hopkins, and he said he saw the PWS and that the optic nerve is being pushed out on both eyes. However, b/c pressures were not alarming he said perhaps jack is having pressure spikes. Anyway what i am wondering is have you been treating your eyes to control any further development of glaucoma or just the yearly testing with great success!!
thanks and again I am sorry if my ealry post was rude, i feel badly if i hurt anyone's feelings.
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Old 01-22-2005, 08:55 PM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 533
Default Re: question for Hank

No your post was not offending, I just wanted to get thru to you that he is your son and will always be your son even though he has PWS. In other words I gave you a reality check.
The reason I say this is in more then half the cases I know that deal with SWS, it ends up one parent is more supportive of sws like going to appointments, surgeries, etc, etc then the other parent trys to avoid the problem. Most of the times the mother is the supportive one (in my case), but I have also seen the father being the supportive on, and both share the resonsability.
Knowing your husband is a doctor I did not know what to think, in your sons case it is still up in the air in my opinion, since the condition really has not sunk in yet, it will take sometime for that to happen. Sometimes it happens quicker then others. It is really hard to tell.

I have never taken drops, or escaped the development of glaucoma. I have been just really lucky. I get checked yearly, and last week I got check and found out I have a choroidal hemangioma behind my right eye and it is leaking blood. That is why I have been having blurred vision. But I always have the risk of getting glaucoma at anytime.

Anways, I had seizures until I was two years old, I guess I grew out of them. That is a nother reason I am very lucky, from what I know I can only remember one time growing up when I had a seizure and it was more then ten years ago.

I hope this helps,

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