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Post by chickiet on Jun 17, 2008 6:56:43 GMT -6
I would probably push for the MRI of brain and complete spine sooner than August. Then you'd at least know what's going on right now. August is a long time to wait and worry about the "rare" but still possible spreading to the brain.
Given what Wyatt (and you) have already been through at his very young age, it seems to me that pressing for an earlier date is appropriate. Two months of waiting in the life of a 2-year old is a long time - still a lot of developmental things going on, etc.
Best of luck - keep us posted!
Chris
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Post by tc on Jun 17, 2008 9:35:15 GMT -6
Dear Jennifer,
Yes, I would push for a sooner MRI for your son. I don't think that insurance companies have any set interval that they require. Especially if you see any new symptoms or changes, please don't hesitate to call the doctor and ask for a sooner MRI.
Do you live anywhere near Bethesda, Maryland? Would you be willing to fly to Maryland? There is a central nervous system tumor study at National Institutes of Health that would give your son free MRIs on a very high powered machine. They are very thorough at NIH. A team of doctors look at the MRIs. No charge to you or your insurance for anything. You pay for your transportation the first trip to enroll, but after that they will reimburse your travel expenses when arrangements are made through their travel agency. Let me know if you want more information. I just went there June 13th. I was very impressed with the appointment and the facilities and the thoroughness of the doctors. I am assuming that they have an ongoing study for children. I was in a waiting room that only had adults, so I didn't see their pediatric area. In my experience, I thought everything there was like flying first class. It was a 4 hour drive for me, but it was definitely worth the trouble.
Teresa
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Post by bethann on Jun 17, 2008 10:41:58 GMT -6
Jennifer,
You are right to feel the way you do! I would push! Honestly doctors are human and we (me for sure) get intimidated by them they are not always right. The one thing you can think about these tumors normally are slow growing (I am not sure about the kind Wyatt has). So if you can not get in till August it is not that far away. But pushing the Dr to make the apt. sooner is not wrong. You have a reason!
Where are you in Michigan? I live in Holland (by Lake Michigan).
Beth
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Post by Wyatt Jennifer on Jun 17, 2008 12:05:19 GMT -6
Teresa,
I would be interested in learning more information regarding that study. My e-mail is FJenifr@aol.com Thank you!
Beth,
We are in Lowell Michigan, near Grand Rapids, Is your N.S in G.R or out by you?
Someone also mentioned to me a new procedure they are doing I believe in California that shrinks tumors with a type of injection. I guess it has been pretty successful, but costly. Does this sound familiar to anyone? I would love to learn more about it. Something like that sounds too good to be true doesn't it?
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Post by kimsmom on Jun 17, 2008 19:34:40 GMT -6
Jennifer,
As a mother of SCT patient (Kim is 4 and was diagnosed w/ an astrocytoma about a year and a half ago) I can understand what you are going through. The waiting is the worst! I would encourage you to be assertive and go with your instincts. I knew something was not right with Kim but her pediatrician disagreed. It caused months of delay in getting her diagnosed. I feel I learned the hard way how to speak up, ask questions, and insist on what I feel is right for my child. Many good thoughts and prayers are going out to Wyatt, you and your family. Please feel free to contact me at orionthehunter12@comcast.net
if you ever want to talk.
Best of luck,
Denise
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Post by bethann on Jun 17, 2008 22:43:43 GMT -6
Jennifer,
My NS is in Holland (Dr Lowery). When I first went to him he was in Grand Rapids. He has moved his office to Holland and my Surgery was here in Holland too. Where is Wyatt's NS?
You are only about and hour away from me!
Beth
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