Ceberal Palsy...advice? (long)
MCGMK
member
It seriously breaks my heart to have to join another board....the high risk board for my daughter and the preemie board for my son.
My son's background.....born at 25 wks weighing 1 lb 14 oz. He spent 4 moths in the NICU. Diagnosed with NEC and had 3 bowel surgeries. Also had laser eye surgery for ROP. He also had grade 3 brain bleeds on both sides of his brain which caused him to have seizures (which he is no longer having.)
Because of all this, he's extremely behind in his gross motor skills. He's 2 yrs old now, and just took his first 4 steps by himself today (yay!) His therapists showed up this evening. They are concerned about his low muscle tone (can sit by himself but when you lift him to sitting, his head still lags behind.) We're now being recommended to a neurologist for possible cerebal palsy.
Has anyone expreinced this? Any advice? What will they test and how? I'm just completely lost on this. My heart just breaks for my son, he just can't catch a break. Thanks in advance. I appreciate everything;.
Re: Ceberal Palsy...advice? (long)
First of all ((Hugs)). It is SO hard to watch our little ones have to work so hard for what comes naturally to other children.
My DD had an MRI because they suspected a lesion causing CP. She has hemiparesis (one side is weaker). She does not have CP, but has a lot of the same "symptoms" (weakness, gross motor delay, etc.) I do belong to a forum for kids with hemiparesis caused by CP and most of the kids are doing SO well. In regular classes, playing sports, etc. CP is such an umbrella term that means some sort of brain damage but it is super variable. Some kids are wheelchair bound, some walk with a minor limp. Your son could have CP but be totally fine! He might just need some PT to help him along.
The neuro will measure him, watch him walk, ask about his milestones, etc. They will probably rec a sedated brain MRI. We have been through two and believe me...they are harder on you then on your son. It's actually a really simple procedure with IV sedation and a 30 minute or so scan. You would get the results within a couple days.
Good luck. Your son is adorable!
I'm so sorry your LO is going through all of that. Ditto to the previous post. Your story is pretty similar to my kiddos- they were born early, had NEC (although no surgeries) and my identical girls both have PVL (which is part of the brain that dies from lack of oxygen), and have seizures. Both girls are very close to having the CP diagnosis, although they haven't recieved a formal diagnosis yet. I know it can be scary, but even with a "CP diagnosis" so many doors can open up. Like he could qualify for more therapy and things like that. Keep your head up, a diagnosis doesn't change who he is...
I'm so sorry you guys are going through all of that! I guess I can basically reiterate what the others have said. My son doesn't have CP, but because of a brain tumor he had a stroke (brain bleed and a clot in his jugular called venous sinus thrombosis) and now has hypotonia and right-sided weakness from this. It's hard to watch your LO go through this, but the EI will hopefully help!! I don't really have a lot of other advice, but I just wanted to try to give you some encouragement that there are others out there that share your feelings! Praying you get some answers soon! Oh, and ditto on the MRI being relatively easy. My DS has had about 13 now and we've had very good experiences every time!