Hello all,
Well we got all of our questions awnsered, and were a little blown away.
First my sweet 8 yrs old is 90% back to a normal kid since surgery and Dr B. is so excited that her SM is almost gone just since her surgery just a short 3months post op!!!!!! WOO HOO!!!
2. all three of my other children have CM1/tether cord, but they are younger so damage is not as bad as my oldest who had many more issues.
My twins who are 6yrs old will have tether cord surgery on March 18th, Dr B thinks this will be the only thing my twin daughter will need. On the other hand my sweet twin little boy who has had speech delay failure to thrive,(he is a little guy same size as about a 3yr old), low musel tone, has been in PTand OT since 9 months old, did not walk until he was 2 and did not really talk till 3, has it much worse.
because of his CM1 and Tether cord he has scoliosis,and herniation about 7mm/ which is not that bad but it is very fatty they said so blocking flow, and do to the increase in pressure his brain hispuituitary glad has been smushed flat like an upside down umbrella dr said.
Reason for all above delays... MAYBE!!!!!!!!! Just a little mad at local Childrens hospital who have put him through hundreds of tests and all came back with delay do to premee. what ever! his sister does not have these problems and they were born at the same time, ok a minute apart!!
Ok sorry for the vent.....
Good news is that Dr B thinks we can take care of this WOOHOO again.
so we will do tether cord surgery and then wait three months and possible decompression depending on how MRI looks, presure needs to be releast a lot and if not surgery, but at least we have a plan.
all three of my littler ones have scoliosis and there lumbar is being pulled straight. so with the tethercord surgery this should fix that, before any more damage is done.
To all I just want to say my doctor locally said none of the little ones had chiari, and that there symptoms did not fit chiari anyway, even though their sister has CM1/EDS and tether cord. Don't feel bad if you feel the need to seek out a second oppinion, trust your feelings and be faithful.
God Bless you all and I pray for you all,
Laurie