Guest guest Posted March 19, 2002 Report Share Posted March 19, 2002 Hi and Im sorry for all of this that you are going through. Good luck on wednesday and I will pray that your sons sutures will all be open. I also will pray that the CT scan will go well and that he will do ok with the medication (cause it tastes nasty well thats what im guessing after seeing the look on Myas face) and he will fall asleep quickly. I am so glad they were able to get you in so quickly. Please let us know how it goes. Christi mom to Mya (DOC band 3/6/02) > Just an update on my son. We had an appointment with our orthotist > today. He also talked to Orthomerica on the phone while we were > there. The pointiness on top has not changed--it's not getting worse > but also not getting any better. Also, both we and the orthotist > feel there should be more correction to the back of the head so far. > The bottom of the head near the nape of his neck, is rounding > slightly, but the top of the back of his head is still flat as ever. > What he and Orthomerica decided was, his suture(s) may have fused and > that's why we are not seeing better correction and the pointiness is > occurring, and he needs to be seen by his neurosurgeon asap. If the > sutures have closed, he'll need surgery. If they have not, they want > to re-cast and make a new STARband. He's to continue wearing his > helmet for now, to maintain the progress we have made. > > I managed to get in touch with the ped. neurosurgeon's office and > they have scheduled me for Wednesday even though they are already > overbooked. He's going to have to be sedated for a CT scan. I had > to outline the whole situation for them, and figure it must sound > serious for us to get an appointment so quickly, as it usually takes > a month to get in. So we drive to Birmingham Wed. to see what's > going on. Wish us luck and pray his sutures have not closed. > > Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2002 Report Share Posted March 19, 2002 I'll be praying that the sutures are not closed. I can imagine how nervous and anxious you must be right now. I'm glad your specialist could get you in so quickly. My daughter was sedated for her CT scan and it wasn't nearly as bad as I thought it would be. The scan was really quick and she came out of it with no trouble at all. She was pretty sleepy for several hours after the scan, but was then right back to her normal active self. Let us know how everything goes. Marci (Mom to ) Oklahoma > Just an update on my son. We had an appointment with our orthotist > today. He also talked to Orthomerica on the phone while we were > there. The pointiness on top has not changed--it's not getting worse > but also not getting any better. Also, both we and the orthotist > feel there should be more correction to the back of the head so far. > The bottom of the head near the nape of his neck, is rounding > slightly, but the top of the back of his head is still flat as ever. > What he and Orthomerica decided was, his suture(s) may have fused and > that's why we are not seeing better correction and the pointiness is > occurring, and he needs to be seen by his neurosurgeon asap. If the > sutures have closed, he'll need surgery. If they have not, they want > to re-cast and make a new STARband. He's to continue wearing his > helmet for now, to maintain the progress we have made. > > I managed to get in touch with the ped. neurosurgeon's office and > they have scheduled me for Wednesday even though they are already > overbooked. He's going to have to be sedated for a CT scan. I had > to outline the whole situation for them, and figure it must sound > serious for us to get an appointment so quickly, as it usually takes > a month to get in. So we drive to Birmingham Wed. to see what's > going on. Wish us luck and pray his sutures have not closed. > > Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 Chris: I am very relieved that Asher's xrays came back negative - that must be a huge relief for your family . Just to be safe, I recommend taking weekly pictures of Asher's head from every angle. This will give you something to compare his progress to. I am sure you will keep a close eye on his head after he gets a new band. When will he be casted again? Debbie Abby's mom DOCGrad MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 He is ok--his sutures are all still open! Thanks for everyone's prayers. They ended up doing skull x-rays and not a CT scan after all, so they did not have to sedate him, but did bind his legs like a mummy and restrain him. He was not a happy camper. The neuro. does not seem to know WHY his head is pointy but said everything is fine and not to worry about it, just to have him re-cast for his new STARband and it should settle out. So now we just need to go through to fun of casting again, argh. > Just an update on my son. We had an appointment with our orthotist > today. He also talked to Orthomerica on the phone while we were > there. The pointiness on top has not changed--it's not getting worse > but also not getting any better. Also, both we and the orthotist > feel there should be more correction to the back of the head so far. > The bottom of the head near the nape of his neck, is rounding > slightly, but the top of the back of his head is still flat as ever. > What he and Orthomerica decided was, his suture(s) may have fused and > that's why we are not seeing better correction and the pointiness is > occurring, and he needs to be seen by his neurosurgeon asap. If the > sutures have closed, he'll need surgery. If they have not, they want > to re-cast and make a new STARband. He's to continue wearing his > helmet for now, to maintain the progress we have made. > > I managed to get in touch with the ped. neurosurgeon's office and > they have scheduled me for Wednesday even though they are already > overbooked. He's going to have to be sedated for a CT scan. I had > to outline the whole situation for them, and figure it must sound > serious for us to get an appointment so quickly, as it usually takes > a month to get in. So we drive to Birmingham Wed. to see what's > going on. Wish us luck and pray his sutures have not closed. > > Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 What a relief it is to hear his sutures are still open! If you have any doubts though, push to get a CT scan because they are more detailed than x-rays. In the meantime, I'm breathing a huge sigh of relief for you and Asher! Good luck with the re-casting and let us know how it goes! Niki Kaylie & Danny (STAR grads) Phila., PA > > Just an update on my son. We had an appointment with our orthotist > > today. He also talked to Orthomerica on the phone while we were > > there. The pointiness on top has not changed--it's not getting > worse > > but also not getting any better. Also, both we and the orthotist > > feel there should be more correction to the back of the head so > far. > > The bottom of the head near the nape of his neck, is rounding > > slightly, but the top of the back of his head is still flat as > ever. > > What he and Orthomerica decided was, his suture(s) may have fused > and > > that's why we are not seeing better correction and the pointiness > is > > occurring, and he needs to be seen by his neurosurgeon asap. If > the > > sutures have closed, he'll need surgery. If they have not, they > want > > to re-cast and make a new STARband. He's to continue wearing his > > helmet for now, to maintain the progress we have made. > > > > I managed to get in touch with the ped. neurosurgeon's office and > > they have scheduled me for Wednesday even though they are already > > overbooked. He's going to have to be sedated for a CT scan. I had > > to outline the whole situation for them, and figure it must sound > > serious for us to get an appointment so quickly, as it usually > takes > > a month to get in. So we drive to Birmingham Wed. to see what's > > going on. Wish us luck and pray his sutures have not closed. > > > > Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Oh I am so glad to hear his sutures are still open. That is great news!! Mya also had xrays done too before she had her ct and I remember her having to be held down and her screaming It was awful. Sorry you have to go through the casting process again. But hopefully once you get the new band everything will straighten out. GOod luck!! Christi mom to Mya (DOC band 3/6/02) > > Just an update on my son. We had an appointment with our orthotist > > today. He also talked to Orthomerica on the phone while we were > > there. The pointiness on top has not changed--it's not getting > worse > > but also not getting any better. Also, both we and the orthotist > > feel there should be more correction to the back of the head so > far. > > The bottom of the head near the nape of his neck, is rounding > > slightly, but the top of the back of his head is still flat as > ever. > > What he and Orthomerica decided was, his suture(s) may have fused > and > > that's why we are not seeing better correction and the pointiness > is > > occurring, and he needs to be seen by his neurosurgeon asap. If > the > > sutures have closed, he'll need surgery. If they have not, they > want > > to re-cast and make a new STARband. He's to continue wearing his > > helmet for now, to maintain the progress we have made. > > > > I managed to get in touch with the ped. neurosurgeon's office and > > they have scheduled me for Wednesday even though they are already > > overbooked. He's going to have to be sedated for a CT scan. I had > > to outline the whole situation for them, and figure it must sound > > serious for us to get an appointment so quickly, as it usually > takes > > a month to get in. So we drive to Birmingham Wed. to see what's > > going on. Wish us luck and pray his sutures have not closed. > > > > Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Congratulations on the positive report!!! (MI) mom to Regan (5) and (3 1/2 mos. helmet in the future) Quote Link to comment Share on other sites More sharing options...
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