Oh My Gosh, Diana was right, I think he is starting toward healing...

[momtocole1]

Okay, I have been posting like crazy because my son has had such a bad time of it the last couple of days. I talked to Diana Pohlman on Friday an she thought based on what I was telling her that this really may be part of the healing process.

 

He still is in such a bad state, but he is slowly working his way out. I know this is a long haul. We haven't even gotten the IVIG yet, but I do think the high dose Augmentin is helping.

 

Today I took him for a drive, he was crying off and on because his little brother was calling his name over and over. He was yelling out his "OCD words" which seem more like tics right now. Then he got really quiet. I asked him what was wrong because he looked so mad, the worst look on his face.

 

After a couple of minutes he started laughing at something he saw and I asked him, what was going on because just a few minutes before he was so sullen, I mean reallly mad. He said, "Mom, I have to tell you something, I have made a decision... When we get home I am going to put on my Quicksilver Shirt"... My mouth just dropped open,

 

He has not been able to put on any T-Shirts with ANY writing on them since July, over 3 months. He became deathly afraid of anything with the letter X on it. The Quicksilver shirt that he likes has the k on it that looks like an X. We have spent many a mornings arguing over what he can where. I had to go to Target and buy a whole bunch of solid color T shirts. Most of those were ruined because he was chewing on them.

 

I know it seems so strange to be so excited over this, but this is a huge deal for him. He got out of the car and started saying, "hybrid, hybrid, over and over again. I realized that is written on my daughters little ride on jeep, that was next to his door when he got out, I guess he is just randomly seeing words and repeating them which is so strange.

 

He went upstairs when he got home and put on the Quicksilver shirt. He wanted me to come upstairs because he was afraid to come downstairs with it on. I relaized he had it on backwards. He must have wanted the big Quicksilver word to be in the front. I didn't say a word, just gave him a huge hug.

 

I am scared to even say this, but I do think he really is starting on the road to healing. The Augmentin is doing something.

 

One other thing, As we were getting close to our house, I saw three boys riding their razors, they looked like my son's age. Just Hangin out on a Sunday afternoon. When I see these groups of boys out doing fun things I get so sad. My son is so happy and relieved that he can put a lousy Quicksilver shirt on without actually dying. Those boys don't know how good they have it comapred to my son. I don't want to discount what a great victory this was by feeling sorry for him, but I just can't help it sometimes.

 

Thanks for listening to me vent. I don't know what I would do without everybody!

 

 

God Bless Diana Too!

 

Thanks,

Judy...

[mama2alex]

I'm so happy for you that you're seeing some healing starting to happen! Thanks for sharing this will all of us. It's very exciting and I hope you continue to see more changes for the better.

 

Diana's an absolute angel, isn't she?

 

Jennifer

[peglem]

Those boys don't know how good they have it comapred to my son

 

But your son WILL know how good he has it when this is over. Maybe not worth going through this, but at least he will get something....

 

Exciting news! So good to hear. Thanks for sharing.

[brooke]

Okay, I have been posting like crazy because my son has had such a bad time of it the last couple of days. I talked to Diana Pohlman on Friday an she thought based on what I was telling her that this really may be part of the healing process.

 

He still is in such a bad state, but he is slowly working his way out. I know this is a long haul. We haven't even gotten the IVIG yet, but I do think the high dose Augmentin is helping.

 

Today I took him for a drive, he was crying off and on because his little brother was calling his name over and over. He was yelling out his "OCD words" which seem more like tics right now. Then he got really quiet. I asked him what was wrong because he looked so mad, the worst look on his face.

 

After a couple of minutes he started laughing at something he saw and I asked him, what was going on because just a few minutes before he was so sullen, I mean reallly mad. He said, "Mom, I have to tell you something, I have made a decision... When we get home I am going to put on my Quicksilver Shirt"... My mouth just dropped open,

 

He has not been able to put on any T-Shirts with ANY writing on them since July, over 3 months. He became deathly afraid of anything with the letter X on it. The Quicksilver shirt that he likes has the k on it that looks like an X. We have spent many a mornings arguing over what he can where. I had to go to Target and buy a whole bunch of solid color T shirts. Most of those were ruined because he was chewing on them.

 

I know it seems so strange to be so excited over this, but this is a huge deal for him. He got out of the car and started saying, "hybrid, hybrid, over and over again. I realized that is written on my daughters little ride on jeep, that was next to his door when he got out, I guess he is just randomly seeing words and repeating them which is so strange.

 

He went upstairs when he got home and put on the Quicksilver shirt. He wanted me to come upstairs because he was afraid to come downstairs with it on. I relaized he had it on backwards. He must have wanted the big Quicksilver word to be in the front. I didn't say a word, just gave him a huge hug.

 

I am scared to even say this, but I do think he really is starting on the road to healing. The Augmentin is doing something.

 

One other thing, As we were getting close to our house, I saw three boys riding their razors, they looked like my son's age. Just Hangin out on a Sunday afternoon. When I see these groups of boys out doing fun things I get so sad. My son is so happy and relieved that he can put a lousy Quicksilver shirt on without actually dying. Those boys don't know how good they have it comapred to my son. I don't want to discount what a great victory this was by feeling sorry for him, but I just can't help it sometimes.

 

Thanks for listening to me vent. I don't know what I would do without everybody!

 

 

God Bless Diana Too!

 

Thanks,

Judy...

 

 

I know all too well those "Quick Silver" moments, and go through those moments every day when I see other boys who seem to have no problems. My son had to leave his prior school because of PANDAS. It is a rare day when he does not cry for that loss and what PANDAS has done to his life. As a "newbie" here, I so appreciate that I am not alone, as much as I cannot stand that others suffer. We too have started high dose antibiotics in the last few months and I can see a difference! Sadly, my oldest child, just diagnosed with PANDAS, is allergic to three classes of antibiotics.

God Bless Diana from me too! Where I would be without her, I have no idea!

Thanks,

Brooke

[Alex]

Just a thought I have been having I wanted to mention. In 'Saving Sammy', Sammy was on Augmentin XR, the extended release version. Many kids have success on azithromycin. The similarity between the two that I see is that they are both present in the sytem all the time. Azithromycin has a long half life and the augmentin XR is realsed slowly so that it is still working until you get the next dose. If there is intracellular strep or hidden strep, then the antibioitc is there all the time to aid the immune system, maybe I think preventing the creation of much of an antibody response. That is what we want, no new antibodies while the ones already created dissapate. If I was trying the augmentin route, which we hope to, I would make sure it was augmentin XR and I would be exact with the timing of the dosing to make sure that there was constant antibioitc presence so the immune system was never left alone to fight any infection. Again, in 'Saving Sammy' it was the right dose of the right kind of augmentin. She had initial success with amoxcillin but it quickly stopped working. Beth Maloney stresses that she was meticulous with the timing of the dosages. If it was four times a day, she got up a two in the morning to make sure the doses were spaced evenly. With 'Saving Ssammy' you have an example of a protocal that, in my opinion, worked very well. I wouldn't alter it one bit whatsover. Alex

[thereishope]

Glad to hear he's on the road to recovery! Target and Walmart has made a lot of money off of me and PANDAS. He had a clothing thing too. I would then take what he was willing to wear and but a lot of it. I was also careful to take the tags off carefully so I could reattach them if I realized he wouldn't wear that too so I could return it.

 

Such small things any other parent would overlook becomes a milestone. He wore short sleeves, he wore a picture on his short, he put grapes in the bowl with the apples (my son did that yesterday).

 

 

Keep us posted!

 

Vickie