Having a dx is a blessing and a curse isn't it? Tells you what it is, but doesn't really help you out at all. I have no suggestions Cass, but I wish that she (and you) didn't have to go through this I hope she grows out of it quickly
I will BBL to reply properly but am still a bit overwhelmed...but getting there as DD3 has for the last 2ish days been seizure free (not spasm free....but still...not so constant).
Thanks Purplepixie for the info
HotI: that is interesting regarding the clothing...i had a moment where i was wondering whether something she was wearing was causing particular issue.
So, DD3 has continued to have seizures. They vary in intensity and frequency. I have gone through moments of sheer terror and distress to relief and joy...sometimes all in one day lol!
We are on bi-monthly appts with her neurologist. At her last one we were quite hopeful that we had pretty much seen the last of them (as she was only having a few every week or so (she was upwards of 30 a day prior). But unfortunately it appears that it really is a case of ebbs and flows (with a few weeks back seeing 48 hours of 100+ a day ). the really only positive from that rough patch was that i was FINALLY able to get some of them on camera. it was a request from teh neurologist so that they can start a profile that is more unique to her ITMS (basically he told me that alot of this stuff is about what is 'normal' for her and going from there).
As for DD3 herself: she is a bubbly happy baby and we have had 3 weeks reprieve () and to see her relax and smile and just go and get back into loving life is just awesome. it has also really been a time of hitting home to us just how hard and exhausting this whole shebang is for her. For the last 6 months she has been a trooper, no doubt, but now, with 3 weeks of awesome under her sleeve she is developing beautifully, chatting, smiling, interacting and has the energy to play!
I hope that she remains seizure free forever! we have her next appt on monday and so we will see where we go from there, but yeah feeling hopeful
Oh gosh I did not see this before and had no idea Cass. What a time you have had. Your little one does sound like a very special little warrior indeed. I hope like you said that you have seen the last of them. Not long now and you will be celebrating her 1st birthday. How exciting.
I hope she grows out of it quickly
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). the really only positive from that rough patch was that i was FINALLY able to get some of them on camera. it was a request from teh neurologist so that they can start a profile that is more unique to her ITMS (basically he told me that alot of this stuff is about what is 'normal' for her and going from there).
) and to see her relax and smile and just go and get back into loving life is just awesome. it has also really been a time of hitting home to us just how hard and exhausting this whole shebang is for her. For the last 6 months she has been a trooper, no doubt, but now, with 3 weeks of awesome under her sleeve she is developing beautifully, chatting, smiling, interacting and has the energy to play!
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