Is Gary's mom on here?

[rockytop]

I wanted to let him know that someone hijacked the thread under general discussion with some very inappropriate posts!

 

Also- if you are reading this and your kid is at a point where they can go online- send them to his site-- it is kind of quiet, but my daughter checks it nearly every day or so repsonding to email messages from kids on there. She really looks forward to it- it is nice for her to know she is not the only kid with PANDAS.

[dcmom]

Rockytop- I agree- my daughter has recently been corresponding (maybe with your dd?), and she feels really good about it

[browneyesmom]

I just emailed Gary's mom about the posts mentioned. My dd11 is on there also and it has been helpful for her too.

[Ellen]

Rockytop, thanks for the heads up about the inappropriate posts that were put on Gary's website. I had no idea. I will be sure to let him know when he gets home from school so he can delete the posts. When Gary started this website last year, he put a lot of time and energy into making it a place where kids with PANDAS and their parents could feel safe and comfortable. It's sad that there are people out there who have to go and sabotage his efforts. After you posted a few Moms alerted me to your post. I appreciate how parents on this forum look out for one another and our kids. Many thanks!

 

It's good to know that even though Gary has not been on his website in awhile, there is still some communication and email activity going on with some of the kids. I'm hoping Gary will want to get more involved again at some point. Over the summer he had a pretty major setback and then he started high school. It has been a bumpy road, and I have been wanting to post a specific update some time soon but I've been waiting/hoping for some lasting improvements. He has been seeing an LLMD who has him on an aggressive protocol of antibiotics (Biaxin, Amoxicillin, and high dose Augmentin) along with many supplements, monthly IV glutathione, and weekly Vitamin B-12 shots. After getting on the Augmentin in January we did start to see some good results over time but lately (for the last few weeks) he has been slipping and there are problems with focus, moods, OCD, and excessive pacing. We have another appointment with our LLMD soon and hopefully he will make some adjustments that will help get him back on track.

 

On a more positive note, he has been having weekly sessions with his former therapist ( an OCD expert whose ideas helped inspire the OCD page of his website), and she has been giving him some practical strategies for dealing with the OCD. Yesterday she helped him diagram the cycle of his OCD (how the negative thoughts lead to the pacing,which provides temporary relief but reinforces and strengthens the OCD) and she helped him see in a visual form how distraction (specifically thinking about and doing things he enjoys) can help him break free of the cycle. I think he got it. It's just a question of whether or not he can follow through with her strategies. I'm hoping that he can do this and eventually get well enough to feel comfortable going back to his website and sharing the new ideas he is learning about how to fight the OCD. For now, I am glad that even though he has taken a step back from the site ( he mostly just checks the statistics once in awhile), he was able to start something that has helped other kids feel that they can talk openly about their disordrer. Our kids should not have to feel that they are alone.

 

I'll try to get back here (hopefully with some improvements to report) to give a more detailed update on Gary some time soon.

 

Ellen