New on this site not to CM/SM :(

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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New on this site not to CM/SM :(

Postby joyz4swtz » Tue May 15, 2012 4:51 pm

Hello..

I'm Joy, a Mom of 4 kiddos and we're in NJ! I have a 13 y/o son (Justin) with CM dx @ 8, no surgery..cineMRI flow normal, a 12 y/o daughter (Sara), an almost 9 y/o son (Hunter) who had decompression surgery at 3.5 y/o for CM/SM and an almost 8y/o daughter (Makenna.)

Hunter had just turned 3 when he began telling me it hurt "inside my head, Mommy" and we eventually were given the referral to the neurologist. She gave us the dx of CM, the neurosurgeon did a MRI of the C/T/L Spine and said he needed to have surgery fairly quickly b/c his spinal fluid was basically not moving, and he had a large SM. His surgery was done at CHOP April 12, 2007 and he was in their ICU for 3 days total, then released that Sunday. He was still very ill vomiting, and headaches but they said they'd prescribe medication for us to give him for nausea, tylenol for headaches and we could take him home.
It is a 4hr ride home and he covered himself, our new van and eventually me in whatever he did hold in his stomach. I have always been very strict and still am about seatbelts/carseats but I took him out and held him in my arms for 2 hours of that trip because he was so miserable! :cry: :cry: When we arrived home, we put in a call to the NS office and they repeated the discharge orders. So I called the neurologists office, and they said there wasn't anything they could do.
Monday we visited the pediatrician who worried seeing the pain prescribed prescription pain medication. It only helped a teeny bit. This went on for a week when eventually both the Pediatrician and we had enough.. the CHOP NS wouldn't take him back as "it wasn't necessary" @@, even though his surgical site is swelling and looks like someone inflated a balloon under the skin... so he spoke to the neurologist and she said to have us take him to the ER and they'd admit him through there (no one wants someone else's surgical "problem"), and we did. Finally at midnight we arrive on the ped's unit at a nearby hospital and they perform a spinal tap.. which comes back with aseptic meningitis!! This poor 3.5 y/o baby has been screaming in pain and vomiting for 10 days now and someone could've checked him out sooner had they not been bullheaded about him being in pain before now at CHOP!! He is in the hospital 9 days on steroids to control the inflammation, pain medication, and nausea meds via IV. Eventually the swelling subsides but what should've been a nice thin scar is now a wide thick scar on the back of his head that he's had kids tease him about, and call him dumb in school :( Ironic part.. he's probably one of the smarter ones! :mrgreen:

Fast forward.. He has been active and had headaches here and there that his neurologist, pediatrician and I have all guessed were "migraines"! They have flattened him out, and he's screamed and then eventually vomited from it. He has had a "mood change" since his surgery IMO, he went from a sweet loving boy.. to one who can fly off the handle at the smallest thing and then return to that sweet loving boy. Over the past 6-8 months his headaches have been increasing in frequency, intensity, duration and his moods have been frightening before they hit. There are some that are there all day long and come on worse in the evening etc. So when I mentioned to the ped. he wanted the neurologist to have a look. Only problem was getting an appointment.

So he said to get in with the neurosurgeon who took care of him here locally when CHOP refused to take him back when he was ill.. the Dr. requested he have MRI of Brain, C/T/L spine, and then the girl asked me if he could now do it awake. I was floored.. it's almost 3-4hrs long even an adult couldn't lay still that long! No, he cannot. So he'll be sedated as well!! I'm now worried.. I don't want him to have to do this again, it was unfair the first time! *I* don't want to hear what the results are.. unless they're POSITIVE results (is that bad of me?!) For a while after he was completely free of complications he did really well and had no problems it was a *God-Send* and I was SOOO happy to have been the one who signed the papers but I feel like I don't want to have to decide my son's fate again :(

Has anyone else's child had any problems after their surgeries? Thanks :)
joyz4swtz
 
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Re: New on this site not to CM/SM :(

Postby razzle » Thu May 17, 2012 5:01 am

hello welcome to asap . I sent you a Private message
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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razzle
 
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Re: New on this site not to CM/SM :(

Postby lttutrow » Tue May 22, 2012 7:22 pm

Hi!
I'm so sorry to hear all your little guy has been through (and you!!!)!
My kids did great right after their surgeries, but had symptoms come back at about the six month post decompression mark. Head pain made worse with even simple activity, vomiting, weird vision, dizziness, mood changes, etc... After a long time of trying to treat the 'migraines', they finally found out my kids had high intracranial pressure and placed LP shunts. I've met other families whose kids were still in the healing process and improved more over the next few years. I very much understand your feelings of not wanting to hear the results! It's such a mixed bag of emotions, knowing something is off, yet hoping it's not, and just wanting our kids to feel good!!! So sorry you are experiencing this, but know you're not alone. Here is a link to a closed group on facebook for parents, closed so that only the other people in the group can see your posts: https://www.facebook.com/groups/298065106923140/ .
(((HUGS)))
Lori
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