right side weakness?

[devon]

Hello all. My youngest, Matthew (17mths) has Noonan Syndrome, although a somewhat mild case of it. He had shown left side dominance/right side weakness globally since he was about 4 months old. He received OT every other week until about 2 months ago and then started getting PT every week and DT every week as well. He is not walking and has the typical hypermobility and hypotonia that go along with Noonan Syndrome (NS).

We saw a pediatric rehab. dr at around 13 months, right before we moved out of state, since we kept bringing it back up to our ped. that we were concerned with the lagging on the right side. She suggested we probably should see a neurologist and they would recommend getting an MRI.

Fast forward to now - both his PT and DT and I agree that we need to see a neuro to talk to them about it, as it is getting more pronounced. They cautioned that he probably would want a MRI.

Does anyone have any experience with this? Is this something that could be related to NS or something different? He also has a mild ptosis on that side of his body. Or, if we decide to get an MRI, what can we expect the procedure to be like with a 17 month old? He has had two surgeries where we have followed precautions for malignant hyperthermia, which means no anesthesia gases (except nitrous oxide) or succinycholine. I'm wondering how much of a problem that is going to cause. His oldest brother had an MRI at age 13 months (he had a huge noggin and they wanted to rule out anything) but they were able to do a special kind that didn't require anesthesia.

Thanks,
Devon

[isisreturning]

My DD has had many, many MRIs, starting at age 6 mos. She is 3 years old now. As far as I know, they will want kids that young to be sedated because you have to be absolutely still for an MRI and most youngsters can't manage that (MRIs are extremely noisy and scary because you're in a tube).

Usually they put a mask over my DDs nose/mouth and she breathes in a gas that puts her to sleep. Then they start an IV and use an IV anesthetic to keep her asleep. But they could always start an IV while she's awake (semi-unpleasant, but do-able) and skip the gas...

Usually with my DD they use propofol - it works well for her and "burns off" fairly fast (though if we rush her in waking up, whoa boy she is like a really angry and confused drunkard - so we let her sleep it off as long as she needs to before we leave the recovery room). While DD was getting daily anesthesia for radiation, she also had pneumonia and she was having trouble with propofol. They switched her to dexmetatomidine and she stayed stable as anything.

Hope that helps - good luck!

[devon]

I'm pretty sure propofol is okay for Malignant Hyperthermia so that is good. He's gotten blood draws before and ivs so hopefully they'll be just willing to do that without the breathing mask first.

Thanks!

Anyone else have kids with right sided weakness?