January 18, 2010


We’re home now

our visit to ER last nite was because he was having “seizure like” uncontrollable full body twitching and tremors.they were very severe and really scared all of us.

His twitching has subsided. Naturally it had subsided by the time the ER doc saw him...however we had videotaped him so we were able to show the doctor. She didn’t know what it was – we have referral to pediatiric clinic and neurology clinic. And they are going to expedite his pain management referral. So that is good. the ER doc said that the "idiopathic pain disorder" diagnosis rheumatology gave him is completely ridiculous. no kidding. nice to hear a medical professional concur with us on that.

We’ve put in a call to DR H this morning and our waiting to hear back from him and find out what he thinks about this latest development – we videotaped parker while the twitching was really bad so at least it is documented. Hopefully I can send the video feed to DR H.

i'll post more when we know more and as i am able.

some of you have noticed my prolonged absense from blogging - i have been both my nerve pain returned with a vengence on dec 26 and aside from a few random outings, i have been very ill again with a pretty severe flare of continued full body nerve pain and most days, there is an inability to remain upright for a significant length of time. so i've been back on the couch more or less fulltime since boxing day. so between fighting my own fight and trying to take care of parker, i have been too physically and emotinoally drained to write. that's not to say there hasn't been a ton going on. i hope to catch up soon.


Renee said...

This all sounds so awful, Shannon and suspiciously like Lyme has affected Parker's nervous system. It is all too sad for such a young guy. We pray he can get help from Dr. H and every other doctor on his case. And we pray for your neuropathy all over. I get that too. I am keeping you and yours in prayer.

Renee said...

Lifting you all up in prayer. I am following the journey of another person with Lyme who has a young son who is just starting treatment for lyme....if you are interested ~ www.gotlyme.wordpress.com is where to go.

Anonymous said...

I hope everything improves for you and your family. God Bless and hang in there!
Hugs Karen