just a little update on our gretsie. about 2 weeks ago (right after my last post) greta started shaking her head again, this time around it was worse. like when she gets going her car seat or bouncer will start shaking. the only way to explain it is to say that she looks like a bobble head, a cute bobble head, but a bobble head none the less. i knew they weren't seizures and that they are more like tremors but i was right freaked out. i have been around my fair share of newborns and i have never seen this, nor has anyone else i have talked to. so i called dr. cramer and we were back at the pediatrician's once again. we like to make it a weekly occurrence apparently.
dr. cramer watched & examined grets for about 30 minutes, he checked everything. after he was finished he sat back looked at her and just shook his head and said "i don't know what to tell you, this is beyond my area of expertise". he then told us that he was going to send us to a pediatric ophthalmologist to see if it was her eyes and if that wasn't the answer he would send us to a pediatric neurologist.
let me first say that she doesn't seem to be in any sort of pain or discomfort when she is shaking. she also does it in any situation (sad, mad, hungry, or happy) the jury is still out on whether she does it while she sleeps because i don't monitor her 24/7. sometimes she does it so hard that i cannot get her to eat and when i touch her or put my hand against her head she will just shake against it. it's just plain weird and not normal.
we went to the pediatric ophthalmologist and after some examination and watching the video i brought of her bobbling, he concluded that it was not her eyes that was causing these tremors. he dilated her eyes and checked them and said she had a perfectly healthy eyes. because she is so young he could not tell how much she can see but her eyes are not the problem. while this is good news, it is still upsetting to not have an answer. so onto the neurologist.
last friday the 30th we went to primary children's hospital to meet with dr. filloux a pediatric neurologist. because my lovely gretzel does not bobble on demand and has bit of stage fright it seems, he too had to watch her do it on the video. he repeated many of the test that the previous doctors had done, including reflexes, an eye check, and neck strength. he felt all of those things were normal and because its so varied at this young age whether they are hitting milestones that was irrelevant. he wasn't sure what it was either. dr. filloux did notice that her head movements were a little abnormal, even when she wasn't' shaking. he has seen a few cases similar to this but said the shaking is all a result of something else and not all of the cases were the same. he said "i am not overly concerned but i am concerned none the less.". he seemed pretty positive however that it was a neurological problem. he thought maybe that it was her vision but not her eyes. that there may be a problem in the part of her brain that receives the information her eyes are giving her. he thought too that maybe it would figure itself out over time (best case scenario). there were no for sure answer, just that he for sure wanted her to have an MRI so he could see what was going on. SOOOOO on june 13th greta will be having an MRI to see if they can figure our darling little girl is a bobble head.
i am not sure how i feel yet. i feel validated. i knew that this was not normal and i was glad that dr. cramer wanted to look into this and also that dr. filloux was concerned. i was afraid i would go in there and that they would think i was a hypochondriac. i am just glad that we live in a time that we can have answers to these medical questions and sometimes treatment. greta is a wonderfully amazing baby and she is so perfect in my eyes. i feel confident that everything will be okay, it's still just scary to not have answers. i can deal with whatever it is as long as i know what it is. i am nervous for the MRI, he said they were pretty heinous with babies and that the whole process will be about 4 hours because they have to sedate them. i hate it, but it's not the first time i have had to something like this with my kids. by now jude is an old pro with general anesthesia. just keep us in your prayers if you would. grets need them.
dr. cramer watched & examined grets for about 30 minutes, he checked everything. after he was finished he sat back looked at her and just shook his head and said "i don't know what to tell you, this is beyond my area of expertise". he then told us that he was going to send us to a pediatric ophthalmologist to see if it was her eyes and if that wasn't the answer he would send us to a pediatric neurologist.
let me first say that she doesn't seem to be in any sort of pain or discomfort when she is shaking. she also does it in any situation (sad, mad, hungry, or happy) the jury is still out on whether she does it while she sleeps because i don't monitor her 24/7. sometimes she does it so hard that i cannot get her to eat and when i touch her or put my hand against her head she will just shake against it. it's just plain weird and not normal.
we went to the pediatric ophthalmologist and after some examination and watching the video i brought of her bobbling, he concluded that it was not her eyes that was causing these tremors. he dilated her eyes and checked them and said she had a perfectly healthy eyes. because she is so young he could not tell how much she can see but her eyes are not the problem. while this is good news, it is still upsetting to not have an answer. so onto the neurologist.
last friday the 30th we went to primary children's hospital to meet with dr. filloux a pediatric neurologist. because my lovely gretzel does not bobble on demand and has bit of stage fright it seems, he too had to watch her do it on the video. he repeated many of the test that the previous doctors had done, including reflexes, an eye check, and neck strength. he felt all of those things were normal and because its so varied at this young age whether they are hitting milestones that was irrelevant. he wasn't sure what it was either. dr. filloux did notice that her head movements were a little abnormal, even when she wasn't' shaking. he has seen a few cases similar to this but said the shaking is all a result of something else and not all of the cases were the same. he said "i am not overly concerned but i am concerned none the less.". he seemed pretty positive however that it was a neurological problem. he thought maybe that it was her vision but not her eyes. that there may be a problem in the part of her brain that receives the information her eyes are giving her. he thought too that maybe it would figure itself out over time (best case scenario). there were no for sure answer, just that he for sure wanted her to have an MRI so he could see what was going on. SOOOOO on june 13th greta will be having an MRI to see if they can figure our darling little girl is a bobble head.
i am not sure how i feel yet. i feel validated. i knew that this was not normal and i was glad that dr. cramer wanted to look into this and also that dr. filloux was concerned. i was afraid i would go in there and that they would think i was a hypochondriac. i am just glad that we live in a time that we can have answers to these medical questions and sometimes treatment. greta is a wonderfully amazing baby and she is so perfect in my eyes. i feel confident that everything will be okay, it's still just scary to not have answers. i can deal with whatever it is as long as i know what it is. i am nervous for the MRI, he said they were pretty heinous with babies and that the whole process will be about 4 hours because they have to sedate them. i hate it, but it's not the first time i have had to something like this with my kids. by now jude is an old pro with general anesthesia. just keep us in your prayers if you would. grets need them.
