Tuesday, September 18, 2007

Happy Tuesday

Jack saw his neurologist yesterday for his every three months botox injections to his salivary glands. Contrary to what you hear about botox injections -- they are painful and it is so difficult for me to watch Jack cry (and he really cries). His neurologist feels bad and said that he doesn't like to make Jack cry -- and I made him feel even better when I told him that he is the only doctor Jack sees who makes him cry! The last two series of injections haven't been too successful in stopping the flow of saliva, so if this series doesn't help, we will take the next step and have one of his salivary glands radiated. We've already met with a radiation oncologist to discuss this. Jack's lower salivary glands were ligated a couple years ago, so his upper ones are the only ones producing saliva. If we knock out one of them, hopefully .... we can halt the saliva production enough to stop the aspirating and drooling. It's really difficult for me to take Jack out in public when I spend 99% of the time wiping the drool. I just hate it. Yes, it is a cosmetic concern more than anything else, but it's a social issue as well. We can't eliminate saliva production completely because a dry mouth would seriously damage Jack's (beautiful) teeth. Finding the right balance is the challenge.

We've also noticed lately that Jack will momentarily space out and look up. There is nothing consistent about it and it doesn't happen often or last long. However, Jack's OT mentioned it to me the other day, so apparently it is happening often enough for him and Jack's speech therapist to notice. I asked Jack's St. Louis neurologist about it and she said that "brief seizures are well described in children with congenital muscular dystrophy". She recommends an EEG if the episodes happen frequently. I mentioned this to Jack's neurologist yesterday and he agreed that we could get an EEG if the episodes (I can't force myself to say the "S" word) become a regular event. As of right now, I prefer the ostrich - head in the sand approach.
Denial is a wonderful place to live .... on occasion.

A cool front is moving through sunny Arizona -- our temps are below 100 -- Yippee! Hey folks, under 100 is Fall for us. Hope you all have a wonderful week and remember . . . smile and the world smiles with you.


julie said...

Poor Jack, it must be dreadful to see him cry - he's always smiling. I hope the 'spacing out' is nothing too serious. sending Jack big hugs across the pond from Sam.


Cindy said...

We haven't tried botox because it's painful, doesn't always work and the results are only temporary. So for now, we go through lots of drool towels with both Eric and Anthony. Definitely a social issue (and the possibility of aspiration for Anthony), but I guess I've been the ostrich with this problem...
I'd also go with the head-in-the-sand approach regarding possible seizure activity with Jack, but glad you ran it by the docs, just to be on the safe side.

kristy said...

I hope you get some answers from the eeg, and I hope the botox--or an alternative--works for Jack. Nathan sends big hugs to his buddy Jack.