taximomfor4
<font color=purple>Needs a few Ricola drops<br><fo
- Joined
- Jan 31, 2005
I've posted about my second dd a few times recently. Got to ask for ideas, now.
Some background: at 11 mos, we were told dd had gross & fine motor delay, Sensory Integration Dysfunction, and already knew about a kidney abnormality (that causes no problems).
By age 2, also found out she has a left eye choroidal coloboma (large one), a cyst in her brain (near the pineal gland, which doesn't cause problems according to the doc), and an abnormal EEG. The EEG showed "intermittent slowing", but didn't have enough or right abnormalities to be epileptiform activity. Basically, she has an intention tremor, poor proprioception (hates to tilt backward), poor motor planning, and occasional episodes. These episodes, either partial seizures or strange migraines, lead to her saying at grandmas one day: " Mommy, the floor is shaking." Put her on the couch, and ask if that's better. "Yes, but now the walls and couch are shaking." Take her home, she wants to go lay down on the FLOOR. Set her on sleeping bag, she lays down, then sits up, vomits, lays back down, sleeps for 2 hours, wakes up fine.
Oh, and once she says the floor is shaking, she either can't or won't walk. The neuro gets mad at me because I don't know which...but I don't, because she won't even try to walk.
Anyway, that hasn't happened in a while. She is getting dizzy spells these days, though (remember the Irish Dance comp a week ago, when she had a bad day??) Less dizzy this week, but still mentions it.
Well, she began reading (shockingly) by age 3. In K, read at a 3rd grade level. Each year, inched up just a teensy bit. Now, most way through 4th grade, her reading level is only 4.1. So technically, her grade has passed by her reading level!
She gets in trouble because when she reads or hears directions, she concentrates and tries to get started, but has a difficult time making sense of the directions. So she is "Too slow getting started." We've confirmed that she is paying attention, not fooling around. She just can't convert instructions into actions.
She gets Word Searches very, very oftne for homework. She can't do them. They take FOREVER. Don't know if it's her mind (like the instructions issue) or her blind spot from the coloboma. She also cries EVERY TIME she gets a fill-in-blanks assignment. EVERY TIME. She can't read a sentence with hole in it, and get a feel for what TYPE of word to look for.
She cries. EVERY TIME she is learning something. Math homework that she is just learning, she cries while we help her. Dance, which is her passion. She cries when learning a new step. Not in class, but at home when practicing it to get it right. See, it takes her like hundreds of repetitions to get it. So in class, the first day they learn the new step, she is the worst, but memorizes it. Then at home she does it over, and over till she has it down pat before the next dance class. But she cries. takes a break, comes back, and tries. Then cries, takes a break, comes back, and tries.
She just got contacts to try. Her prescription is way to thick, so the contacts are heavy on one side. They fall off her fingers (which tremor, remember, and have bad motor coordination)> The eye doc gave her a pair with no prescription in them, to use for a week, to build confidence before getting her heavy ones. She cried and tried ,cried and tried for 1 1/2 hours at the eye doc office (finally succeeded). At home each day, she cries throughout...but tries again, cries again, tries again and gets them in. EVERY DAY.
We think she is getting worse, not better. Prepuberty moodiness? don't know but I am sooooo worried sick. We keep having meetings at the school. but she isn't failing so they don't care. Don't know, my gut says she needs a dx...that we're missing something. I don't know about the "spectrum", butshe is great at making eye contact and talking to people (even spoke very early) so I think that's excluded.
Who do I go to next? Who can help us? We're near Cleveland...what type of doc, testing, do we get an advocate for school, and how? With no diagnosis, they won't help us.
Some background: at 11 mos, we were told dd had gross & fine motor delay, Sensory Integration Dysfunction, and already knew about a kidney abnormality (that causes no problems).
By age 2, also found out she has a left eye choroidal coloboma (large one), a cyst in her brain (near the pineal gland, which doesn't cause problems according to the doc), and an abnormal EEG. The EEG showed "intermittent slowing", but didn't have enough or right abnormalities to be epileptiform activity. Basically, she has an intention tremor, poor proprioception (hates to tilt backward), poor motor planning, and occasional episodes. These episodes, either partial seizures or strange migraines, lead to her saying at grandmas one day: " Mommy, the floor is shaking." Put her on the couch, and ask if that's better. "Yes, but now the walls and couch are shaking." Take her home, she wants to go lay down on the FLOOR. Set her on sleeping bag, she lays down, then sits up, vomits, lays back down, sleeps for 2 hours, wakes up fine.
Oh, and once she says the floor is shaking, she either can't or won't walk. The neuro gets mad at me because I don't know which...but I don't, because she won't even try to walk.
Anyway, that hasn't happened in a while. She is getting dizzy spells these days, though (remember the Irish Dance comp a week ago, when she had a bad day??) Less dizzy this week, but still mentions it.
Well, she began reading (shockingly) by age 3. In K, read at a 3rd grade level. Each year, inched up just a teensy bit. Now, most way through 4th grade, her reading level is only 4.1. So technically, her grade has passed by her reading level!
She gets in trouble because when she reads or hears directions, she concentrates and tries to get started, but has a difficult time making sense of the directions. So she is "Too slow getting started." We've confirmed that she is paying attention, not fooling around. She just can't convert instructions into actions.
She gets Word Searches very, very oftne for homework. She can't do them. They take FOREVER. Don't know if it's her mind (like the instructions issue) or her blind spot from the coloboma. She also cries EVERY TIME she gets a fill-in-blanks assignment. EVERY TIME. She can't read a sentence with hole in it, and get a feel for what TYPE of word to look for.
She cries. EVERY TIME she is learning something. Math homework that she is just learning, she cries while we help her. Dance, which is her passion. She cries when learning a new step. Not in class, but at home when practicing it to get it right. See, it takes her like hundreds of repetitions to get it. So in class, the first day they learn the new step, she is the worst, but memorizes it. Then at home she does it over, and over till she has it down pat before the next dance class. But she cries. takes a break, comes back, and tries. Then cries, takes a break, comes back, and tries.
She just got contacts to try. Her prescription is way to thick, so the contacts are heavy on one side. They fall off her fingers (which tremor, remember, and have bad motor coordination)> The eye doc gave her a pair with no prescription in them, to use for a week, to build confidence before getting her heavy ones. She cried and tried ,cried and tried for 1 1/2 hours at the eye doc office (finally succeeded). At home each day, she cries throughout...but tries again, cries again, tries again and gets them in. EVERY DAY.
We think she is getting worse, not better. Prepuberty moodiness? don't know but I am sooooo worried sick. We keep having meetings at the school. but she isn't failing so they don't care. Don't know, my gut says she needs a dx...that we're missing something. I don't know about the "spectrum", butshe is great at making eye contact and talking to people (even spoke very early) so I think that's excluded.
Who do I go to next? Who can help us? We're near Cleveland...what type of doc, testing, do we get an advocate for school, and how? With no diagnosis, they won't help us.
