alisonamsb
06-20-2004, 11:23 PM
hi all... I just wrote this whole long note and somehow it wouldn't post and then I couldn't go back to the original to copy/paste. So I lost it all! :confused: I'll write up a briefer version as my hands are now tired!
Anyway, I'm new here and So glad I found this site! I have been looking for a fairly active bb for a while. This one looks very supportive and knowledgable. I have a 3yr boy and girl - former 32wkers who are now doing very well after a rough start. I also have an 11mth old son whome we are concerned about. He is currently being followed by a ped neuro. He has a follow up visit on wed. in fact. brief history - born at 37wks. good apgars. had full body tremors within a day of birth w/ no detectable cause. Drs felt it was an immature neuro system. 1st neuro appt was at 3mths for possible seizures that were ruled out but diagnosed with isolated myoclonus. He has reached most of his milestones at the outer border of normal: smiling 2mths; tracking objects 3mths; holding objects 5mths; rolling 7mths; independent sitting 9mths; sitting up 11mths. Milestones dealing with his legs have actually been on time or early - bearin gfull weight 2mths; pulling to a stand 10mths, cruising 10mths (scissors his legs when he cruises sideways). Of course, we think this is due to the higher tone in his legs. It appears that he's right on target during testing right now but we think it's an illusion b/c his strength in his legs have helped propel those skills along. As for his hands, he shows a definite preference for the left. I wouldn't say he ignores the right but he almost always reaches with the left and we have seen a 2-4wk lag time in skills b/t the left and the right hand. He is showing hightone in his legs. It has always been tough to exercise and separate his legs during diaper changes. He had consistent sustained ankle and wrist clonus until about 8mths, thumbs in the fists until about 7mths. He still fists the right hand at times when holding a large object (like a cup). He also continues to fist both hands when I'm holding his arms for games like patty cake, row you boat, wheels on the bus, where I'm helping him to do the various motions of the songs. Early on, it seemed like he might have visual and auditory processing problems. Acted blind and/or deaf at times. But both have gotten much better. He does still have trouble with depth perception - reaching for pictures as if they were objects.
So that's my little guy. He is just a loveable little one - adores his older siblings. I know that they have contributed alot in getting him motivated to move and overcome some of these issues. Right now we are in a holding pattern. Just waiting to see what the next few months brings us. Could be mild CP, could be delayed myelination (would fit with the tremors, hyper startle reflex, and the visual/hearin gproblems early on). He continues to develop and that's what's important right now. Oh, I should mention that I'm a birth to three speech therapist. We do not have ds enrolled in early intervention services officially b/c so far I have felt comfortable handling his therapy, with consults from my coworkers. Having gone through this before with my twins (the delays, not the hypertonicity and cp), I feel competent at the moment but in the upcoming months, we likely will look into getting PT and OT for him if the struggles continue.
Anyway, I'm new here and So glad I found this site! I have been looking for a fairly active bb for a while. This one looks very supportive and knowledgable. I have a 3yr boy and girl - former 32wkers who are now doing very well after a rough start. I also have an 11mth old son whome we are concerned about. He is currently being followed by a ped neuro. He has a follow up visit on wed. in fact. brief history - born at 37wks. good apgars. had full body tremors within a day of birth w/ no detectable cause. Drs felt it was an immature neuro system. 1st neuro appt was at 3mths for possible seizures that were ruled out but diagnosed with isolated myoclonus. He has reached most of his milestones at the outer border of normal: smiling 2mths; tracking objects 3mths; holding objects 5mths; rolling 7mths; independent sitting 9mths; sitting up 11mths. Milestones dealing with his legs have actually been on time or early - bearin gfull weight 2mths; pulling to a stand 10mths, cruising 10mths (scissors his legs when he cruises sideways). Of course, we think this is due to the higher tone in his legs. It appears that he's right on target during testing right now but we think it's an illusion b/c his strength in his legs have helped propel those skills along. As for his hands, he shows a definite preference for the left. I wouldn't say he ignores the right but he almost always reaches with the left and we have seen a 2-4wk lag time in skills b/t the left and the right hand. He is showing hightone in his legs. It has always been tough to exercise and separate his legs during diaper changes. He had consistent sustained ankle and wrist clonus until about 8mths, thumbs in the fists until about 7mths. He still fists the right hand at times when holding a large object (like a cup). He also continues to fist both hands when I'm holding his arms for games like patty cake, row you boat, wheels on the bus, where I'm helping him to do the various motions of the songs. Early on, it seemed like he might have visual and auditory processing problems. Acted blind and/or deaf at times. But both have gotten much better. He does still have trouble with depth perception - reaching for pictures as if they were objects.
So that's my little guy. He is just a loveable little one - adores his older siblings. I know that they have contributed alot in getting him motivated to move and overcome some of these issues. Right now we are in a holding pattern. Just waiting to see what the next few months brings us. Could be mild CP, could be delayed myelination (would fit with the tremors, hyper startle reflex, and the visual/hearin gproblems early on). He continues to develop and that's what's important right now. Oh, I should mention that I'm a birth to three speech therapist. We do not have ds enrolled in early intervention services officially b/c so far I have felt comfortable handling his therapy, with consults from my coworkers. Having gone through this before with my twins (the delays, not the hypertonicity and cp), I feel competent at the moment but in the upcoming months, we likely will look into getting PT and OT for him if the struggles continue.
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OrbOfConfusion
06-21-2004, 02:14 PM
:) Welcome alisonamsb,
Have you taken him to a pediatric neuro yet? Because if you suspect cp, your son needs to have an MRI so you will know for sure.
I would suggest enrolling your child in an early intervention program at your local school board. There are many benefits with it. My daughter started hers just after her first birthday and she loves it. She has the best teacher in the world. And her OT and PT at the school were the first to identify her having spastic hemi cp (at first, docs said it was brachial plexus injury). It's a wonderful program.
Take care,
Melissa
Have you taken him to a pediatric neuro yet? Because if you suspect cp, your son needs to have an MRI so you will know for sure.
I would suggest enrolling your child in an early intervention program at your local school board. There are many benefits with it. My daughter started hers just after her first birthday and she loves it. She has the best teacher in the world. And her OT and PT at the school were the first to identify her having spastic hemi cp (at first, docs said it was brachial plexus injury). It's a wonderful program.
Take care,
Melissa
alisonamsb
06-21-2004, 02:44 PM
thanks for the reply Melissa. Yes, as I worte, he has been followed by a ped neuro since about 3mths. has a followup visit on wed. We aren't ready to sedate him for an Mri yet, unless the neuro feels it's necessary to rule out other problems. But since it's looking like probable mild cp and we have been working with him for that since birth, the mri just doesn't make much sense at this point. Thanks for the tip on EI. I am an EI speech therapist and agree it's a super program and a great way for parents to maximize their interactions with their child as well as learn about how to be an advocate for their child. My ds isn't in the program at the moment because at this point we are receiving the help we need unofficially through my coworkers.
Zagreus
06-21-2004, 04:55 PM
Let us know how things go. This is all incredibly complex. I hope you get good news. And it sounds like you're doing all the right things and are great parents!