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Here's a shot. Basically normal parenting advice doesn't really apply to me and it's actually a little depressing.
I'm a 35 year old dad. My son Adam was born in March 2010 and all was fine till a few hours after we got him home. We ended up being blue lighted into A&E where we found out his blood sugar was practically zero. Three weeks in hospital, including two in PICU, we got him home.
This has left him with damage to the ophthalmic region of teh brain that whilst not seeming to cause him a problem at the moment has left him with epilepsy that took them 9 months to get "under control". He has had infantile spasms and two seizures since - the last 5 days after his 2nd birthday where it took over an hour to control and resulted in a need to incubate and sedate him.
Epilepsy can be pretty bad to anyone but for a 3 day old kid it totally messes up their development. Well here we are 2.5 years later. He started taking a few steps in May. Isn't talking yet / following instructions / copying etc. Basically all the stuff people expect of a kid his age. He's generally smiley and laughing, and makes sounds though with little context. Anyhow hence the subject above - the usual advice stuff out there for "toddlers" just isn't right - so I am hoping at least maybe someone can point me in a direction.
The cause of the incident is not known but during the investigation we did find out he also had a chromosome issue that caused muscle weakness. This with the epilepsy has resulted in a number of appointemtns inc speach and language, physio, occupational therapists, neurologists etc etc.
So that's me, kind of looking for someone with a similar thing to speak to. I know people with down's kids etc through the local Portage charity, but none with Adam's issues. And it's the "we won't know the full extent of his problems till he's 5" from the docs mixed with not wanting to jump off the deep end with what littel on-line info is out there, and if I mentioned the stuff there to my wife I dread to think what would happen.
Hi There,
Welcome along, Though I can't offer any advice from myself, we can all offer support in other ways, we are here for anything really, we can be a sounding board for ideas, or an ear to let off steam when things get to much/emotional.
so again welcome and stick around and see if anyone else on here has any experience to offer, and feel free to join in the chat.
Darren
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