mibley
02-07-2009, 10:12 PM
hiya! just found this site. A few years back I tried this sort of thing in my quest to find somone with similar medical conditions as my son, but to no avail.Here's the shortlist:
-spina bifida
-massive progressive hydrocephalus
-non-verbal
-seizures (status, some have been between 5 and 6 hours long)
-difficulty swallowing and drinking which led to a J-tube insertion in late childhood
-recently discovered septo-optic hypoplasia
-absent septum pellucidum
- one large ventricle, almost the entire portion of white matter is compressed again the skull
- chiari II malformation with cerebellur peg drawn down to T3 (or T4 depending on which neuro I speak to)
- he has little trunk control, but now that he's 'grown into his head' he has more trunk control.
- legally blind
- now has developed scioliosis and kyphosis - lower back of all places
- CP by def - very spastic, to flaccid
- he is dev. delayed
- has wicked sense of humor & and is very happy. HE can use a communicator somewhat.
- has severe osteoporosis - his bone densities are only now (after 3 years of bishphosphonates, which we've had to discontinue due to seizures and sickness) approaching the 40% mark - and that's SUPER for him.
There's lots more but that's enough for now. anyone out there with a similar circumstance? My son is 14 years old now, by the way.
would LOVE to hear from someone. It won't make any difference to his treatment or anything, but would be nice to know there was someone out there that was dealing with something similar - perhaps we could help each other out.
Mibley
-spina bifida
-massive progressive hydrocephalus
-non-verbal
-seizures (status, some have been between 5 and 6 hours long)
-difficulty swallowing and drinking which led to a J-tube insertion in late childhood
-recently discovered septo-optic hypoplasia
-absent septum pellucidum
- one large ventricle, almost the entire portion of white matter is compressed again the skull
- chiari II malformation with cerebellur peg drawn down to T3 (or T4 depending on which neuro I speak to)
- he has little trunk control, but now that he's 'grown into his head' he has more trunk control.
- legally blind
- now has developed scioliosis and kyphosis - lower back of all places
- CP by def - very spastic, to flaccid
- he is dev. delayed
- has wicked sense of humor & and is very happy. HE can use a communicator somewhat.
- has severe osteoporosis - his bone densities are only now (after 3 years of bishphosphonates, which we've had to discontinue due to seizures and sickness) approaching the 40% mark - and that's SUPER for him.
There's lots more but that's enough for now. anyone out there with a similar circumstance? My son is 14 years old now, by the way.
would LOVE to hear from someone. It won't make any difference to his treatment or anything, but would be nice to know there was someone out there that was dealing with something similar - perhaps we could help each other out.
Mibley