My daughter is 5 months old and the neurologist says "she presents as CP" but obviously they aren't diagnosing it positively this early. (she is waiting for an MRI and we also think she has a metabolic disorder that we are working on diagnosing).

Anyway, my question is how to get more sleep for her? Her arms and legs move around all the time. When she's sleeping they twitch and jerk and wake her up all the time. We've been using a Miracle Blanket (website of the same name, if you're interested) to keep her tightly swaddled at night. If she's wrapped up like a mummy, she sleeps almost all night. Great, for a 5 month old! The problem is she is getting too big for the Miracle Blanket and we can't swaddle her tightly enough in a regular blanket. (not that she's big, she's 10.5 pounds and failure to thrive, but the blanket is getting too small anyway)

So how do you help your kids (or yourself?) get sleep when your limbs move around even in your sleep? Or do you do nothing, and hope that eventually she will get used to it and not wake up from it all the time?

Thanks in advance ...

Hi there, If i was you I would insist on an EEg to monitor her brainwaves to make sure every thing was going ok. Maybe it is also the teething she is only 5 months. But do the tests better safe than sorry.
Good luck
My daughter is 5 months old and the neurologist says "she presents as CP" but obviously they aren't diagnosing it positively this early. (she is waiting for an MRI and we also think she has a metabolic disorder that we are working on diagnosing).

Anyway, my question is how to get more sleep for her? Her arms and legs move around all the time. When she's sleeping they twitch and jerk and wake her up all the time. We've been using a Miracle Blanket (website of the same name, if you're interested) to keep her tightly swaddled at night. If she's wrapped up like a mummy, she sleeps almost all night. Great, for a 5 month old! The problem is she is getting too big for the Miracle Blanket and we can't swaddle her tightly enough in a regular blanket. (not that she's big, she's 10.5 pounds and failure to thrive, but the blanket is getting too small anyway)

So how do you help your kids (or yourself?) get sleep when your limbs move around even in your sleep? Or do you do nothing, and hope that eventually she will get used to it and not wake up from it all the time?

Thanks in advance ...

Hi there, If i was you I would insist on an EEg to monitor her brainwaves to make sure every thing was going ok. Maybe it is also the teething she is only 5 months. But do the tests better safe than sorry.
Good luck

We talked about that but everyone is pretty sure it's not seizure activity. She doesn't lose conciousness or look dazed or get fussy. She is her normal self, she just has uncontrolled movements. She does have some tremoring (mostly in her legs) but it also doesn't appear to be seizures. They described it as "clonic activity". When you grab her legs and hold them firmly, the tremoring stops. She will be looking at you and smiling and "talking" while tremoring. They feel pretty confident it's not seizures.

My sister has a seizure disorder and this just doesn't seem at all similar. But you are right, better safe than sorry. We're already waiting on auth. for an MRI and are in the midst of tons of metabolic work-up testing. What's one more test .. just to be sure.

Thanks for the post, do you have any ideas on the sleep issue? She IS teething, but this is unrelated. She sleeps fine except that her legs/arms jerk uncontrollably frequently and THAT is what wakes her up.

Sara and Emily (5 months old)

My daughter is 5 months old and the neurologist says "she presents as CP" but obviously they aren't diagnosing it positively this early. (she is waiting for an MRI and we also think she has a metabolic disorder that we are working on diagnosing).

Anyway, my question is how to get more sleep for her? Her arms and legs move around all the time. When she's sleeping they twitch and jerk and wake her up all the time. We've been using a Miracle Blanket (website of the same name, if you're interested) to keep her tightly swaddled at night. If she's wrapped up like a mummy, she sleeps almost all night. Great, for a 5 month old! The problem is she is getting too big for the Miracle Blanket and we can't swaddle her tightly enough in a regular blanket. (not that she's big, she's 10.5 pounds and failure to thrive, but the blanket is getting too small anyway)

So how do you help your kids (or yourself?) get sleep when your limbs move around even in your sleep? Or do you do nothing, and hope that eventually she will get used to it and not wake up from it all the time?

Thanks in advance ...


Hi:

We are "waiting for a diagnosis" too, so I know how it is. We hit that same issue, as our preemie even became too big (and strong) too swaddle. Here is an idea that coulkd work for at least another month or 2 (if you don't live in a warm place). On top of all the soothing things you regularly do: night-time bottle, low-lights, etc: try changing baby into one of those sleep sacks BEFORE your night-time routine. It's not as snug as a swaddle, but most likely, your little one will adjust. It worked pretty well fpr Alex, and he is a formwe 25-weeker w/ "tone issue". Some of the "tone issues" have lessened a little bit, but he still has some signs of mild CP. We are supposed to have an mri after he turns one for more info.

I hope the calming down for sleep issue resolves. It often does on it's own. I hope so in your case, for both the baby and teh parents.
I was also wondering if they did an eeg to rule out seizures? I am sure you and the doc are on top of it. I hope things are up hill from here.

Angie