Intro

[NinNin]

Hi I was an active poster on the O13 BMB when it was on TB they switched over to GBCB, but there is no specialty board there.

DD is 15 months old, and we went to Shriners a few days before Christmas. They think that she has right-sided hemiplegia (which is loosely referred to as cerebral palsy) there is technically a difference, but what the difference is Im not exactly sure.

However most people are referring to it as CP. We won't know anything definitively until she gets an MRI of her brain once she hits 18 months or older.

We are in PT once a week and Speech once a week. We got her AFOs a week ago yesterday. She is finally getting used to them.

My job before was taking care of developmental disability in children.

I know enough to know what's not right, but not enough to feel super confident.

Anyways was just hoping to meet others who have dealt with similar circumstances.

[auntie]

There's a Special Needs board at GBCB. It's listed under "the Care and Keeping of Children" second from the bottom- not in alphabetical order. A number of the former denizens at the Bump's SN Board are there.

I think there's at least one mom who may be looking at a CP dx soon.

[typeset]

[waves]

My eight-month-old is rocking some hypertonia. Despite the EI folks hinting at CP, the neurologist we consulted with says she isn't seeing CP nor anything severe enough to merit a sedated MRI before one. I ... am anxious for definitive answers. They don't change his current treatment plan (PT twice a week, OT once a week, yoga w/ PT & OT once a week, weekly time with a dev specialist, and speech intermittently), but I'm exhausting myself. Hypertonia + "immature nervous system" + intermittent strabismus + purple feet + communication delay = [bangs head against Google]

I'm glad your kiddo is getting used to her AFOs. We've been warned off AFOs by the team in favor of some baby Timberlands when he starts to want to walk. I suspect when we meet with the orthopedic surgeon next month it may be a different story.

[NinNin]

Thanks auntie I will check that out. I remember seeing that board, but it didn't click with me that it was special needs!

typeset I was told to wait until she was 18 months for a sedated MRI. I love how Drs have such differing opinions. I'm sorry you are having to go through this as well!

[typeset]

Our neurologist is extremely conservative, so I expect we'll only begin to discuss imaging after he turns one and she'll try to push us back on doing it until closer to two. She said that's when most CP is diagnosed barring a clear-cut cause.

I'm an information junkie, so the wait is killing me. One of the gals I know who works in genetics spelled it out well for me: he's going to take time to show us who he is.

[puplove214]

Hi there. My son is 11 months and are also seeing therapists (PT and OT 2-3 times a week and currently filling out application for speech)for hypotonia and gross motor delay. For the past few months we suspected CP as well, but after looking at the MRI results they now suspect a metabolic disorder (they detected some abnormal synapses in the brain). He is still not sitting unassisted but his head control and ability to reach out and grab things are getting a lot better.

Can I ask what AFO's are? DS screams blood murder anytime we put shoes on, but I know he needs to get used to them (he tends to stiffen his legs and point his toes).

Sorry I don't have much advice to offer as we're still navigating the unknowns ourself, but wanted to say hi

[typeset]

Jan 22, 2015 13:18:46 GMT -5 puplove214 said:

Can I ask what AFO's are? 

Hello! Is your son undergoing further testing regarding the suspected metabolic disorder? 

AFO = ankle foot orthosis

[puplove214]

Ah, thanks!

Yes - we've been referred to another pediatric neurologist who specializes in metabolic disorders. Our current neurologist said he would likely recommend a spinal fluid test in addition to more blood work & urine analysis. We will also have another MRI in 6 months to compare those results.

We are trying to stay positive and focus on how happy and healthy he is now, but it's certainly scary not knowing what the future holds. I had just started to accept the likely CP diagnosis so it feels a little bit like we are back at square one. For now I'm just staying away from Google and trying not to spiral back into the "what-ifs".

[dixienormous]

My 4 year old has CP due to a prenatal stroke. She took her first independent steps on 1/14 - her 4th birthday!