Post by keepthefaith on Jun 20, 2014 15:33:55 GMT -5
Hi again!
We went to a neurologist at request of new internist as our old GP moved away. The internist referred us to a neurologist, given DD's high needs and the lack of response to high doses of Concerta, the new GP didn't feel comfortable giving DD more meds when they aren't helping her.
At the scheduled appt. time, I almost turned around and headed back to the car as I was taken aback by the location of his office. DD said "let's just go in" (we were late; got lost); the neurologist was great! He told me immediately to "quiet" he wanted to speak to DD. I admired that immediately! DD does have a voice in this!
He told her that about 3% of ADD inattentive types do not respond to stims, therefore the side effects were greater for her given her non-response. We did try Ritalin LA but she was very angry on it. Anyway, the neurologist said she should have a sleep study to rule out sleep issues and the results are back - she is idiopathic hypersmonia. The test is very simple and on day 2 she had to take 5 naps. It was called MSLT. During the MSLT testing on day 2 DD fell to sleep, stage 2, in all 5 naps. Her night sleep is 100% normal.
He gave a script for "modafil" (Provigal) - there is scarce literature out there on idiopathic hypersomnia.
So we have IH, possible ADD (we have to get the sleep in order and get her alert to figure out if ADD is still a condition); she does have OT issues as previously mentioned, plus heightened anxiety, she is also washing her hands 2 dozen times a day since she came off the ADD meds. In case I didn't mention it, the District did their own OT evaluation and they approved her for services (which we were also shocked about - sure they would deny it).
Over this summer she is in private OT, SLP for for higher critical thinking, she is doing well with her Orton tutor, math tutoring begins soon and, finally, her sensory processing disorder issues - I have to find time to address those as well. She is ultra sensitive to her hair being touched/brushed, plus now she is also washing her hands over 2 dozen times a day.
Does anyone else out there have experience with Idiopathic Hypersomnia? I've been driving myself crazy - she was always a sleeper - from the day we brought her home from the hospital. I can now see why the mornings, particularly Grade 6/Middle school, were horrible. The mornings were tough on both of us - I had to get up with her, I started the day at 5 am, she starts at 5:30 am and by 6:45 am she was still not moving along. I would help her get ready or she would never make it on time. So with me hurrying her up and DD barely alert, our mornings were not blissful! 3 of 5 school days started miserably...........I have been beating myself up over this - time to forgive myself for many mistakes made. How did I miss all of this?
Some things are beginning to make sense. When the school first called us up in Grade 3 they asked if DD had ever been tested to ADD and I looked back at those emails - their chief "complaint" was that she always tried to put her head down on the desk...............I have a few emails as thankfully I did start documenting around mid-grade 3.
Finally, I was extremely nervous to give this updated data to the school fearing we would lose the IEP but our student advocate said we won't - it's a chronic, life-long condition for which there is no cure and it is affecting her access to the curriculum - we'll just stick with "yes, ADD is still a problem, along with her IH" because there in zip in IDEA about sleep disorders...........anyone have experience with sleep disorders and IDEA? I am fearful they will pull the rug......... Also, the clinical psychologist who performed the private neuro educational testing - she is well respected doctor from well respected hospital and she just replied to this news that it makes sense, well done for figuring it out because SHE had a tough time diagnosing DD during the private testing we paid for.
I have more to add but this is a rough start. I am grateful - I am still in a little bit of shock I guess. I have no idea what the next stage will be - it's been a very disconcerting week. I will add more about calling another Meeting to address her IEP to include homebound instruction..............7th grade starts promptly at 7:21 am!
Thanks!
Moogg
We went to a neurologist at request of new internist as our old GP moved away. The internist referred us to a neurologist, given DD's high needs and the lack of response to high doses of Concerta, the new GP didn't feel comfortable giving DD more meds when they aren't helping her.
At the scheduled appt. time, I almost turned around and headed back to the car as I was taken aback by the location of his office. DD said "let's just go in" (we were late; got lost); the neurologist was great! He told me immediately to "quiet" he wanted to speak to DD. I admired that immediately! DD does have a voice in this!
He told her that about 3% of ADD inattentive types do not respond to stims, therefore the side effects were greater for her given her non-response. We did try Ritalin LA but she was very angry on it. Anyway, the neurologist said she should have a sleep study to rule out sleep issues and the results are back - she is idiopathic hypersmonia. The test is very simple and on day 2 she had to take 5 naps. It was called MSLT. During the MSLT testing on day 2 DD fell to sleep, stage 2, in all 5 naps. Her night sleep is 100% normal.
He gave a script for "modafil" (Provigal) - there is scarce literature out there on idiopathic hypersomnia.
So we have IH, possible ADD (we have to get the sleep in order and get her alert to figure out if ADD is still a condition); she does have OT issues as previously mentioned, plus heightened anxiety, she is also washing her hands 2 dozen times a day since she came off the ADD meds. In case I didn't mention it, the District did their own OT evaluation and they approved her for services (which we were also shocked about - sure they would deny it).
Over this summer she is in private OT, SLP for for higher critical thinking, she is doing well with her Orton tutor, math tutoring begins soon and, finally, her sensory processing disorder issues - I have to find time to address those as well. She is ultra sensitive to her hair being touched/brushed, plus now she is also washing her hands over 2 dozen times a day.
Does anyone else out there have experience with Idiopathic Hypersomnia? I've been driving myself crazy - she was always a sleeper - from the day we brought her home from the hospital. I can now see why the mornings, particularly Grade 6/Middle school, were horrible. The mornings were tough on both of us - I had to get up with her, I started the day at 5 am, she starts at 5:30 am and by 6:45 am she was still not moving along. I would help her get ready or she would never make it on time. So with me hurrying her up and DD barely alert, our mornings were not blissful! 3 of 5 school days started miserably...........I have been beating myself up over this - time to forgive myself for many mistakes made. How did I miss all of this?
Some things are beginning to make sense. When the school first called us up in Grade 3 they asked if DD had ever been tested to ADD and I looked back at those emails - their chief "complaint" was that she always tried to put her head down on the desk...............I have a few emails as thankfully I did start documenting around mid-grade 3.
Finally, I was extremely nervous to give this updated data to the school fearing we would lose the IEP but our student advocate said we won't - it's a chronic, life-long condition for which there is no cure and it is affecting her access to the curriculum - we'll just stick with "yes, ADD is still a problem, along with her IH" because there in zip in IDEA about sleep disorders...........anyone have experience with sleep disorders and IDEA? I am fearful they will pull the rug......... Also, the clinical psychologist who performed the private neuro educational testing - she is well respected doctor from well respected hospital and she just replied to this news that it makes sense, well done for figuring it out because SHE had a tough time diagnosing DD during the private testing we paid for.
I have more to add but this is a rough start. I am grateful - I am still in a little bit of shock I guess. I have no idea what the next stage will be - it's been a very disconcerting week. I will add more about calling another Meeting to address her IEP to include homebound instruction..............7th grade starts promptly at 7:21 am!
Thanks!
Moogg
