And on to the next abx!

[simplygina]

Talked with Dr. T today. I cannot mention how nice it is to talk with someone who not only knows what PANDAS is, but has the expertise to give me some feedback. He answered a few lingering questions I've had and confirmed what I'm seeing does fit the PANDAS spectrum.

 

I've tried twice to get my pediatrician to switch to a macrolide without success. With Dr. T.'s help we are going to give Biaxin a whirl.

 

How quickly have some of you seen success when switching to the "right" abx? We've got a 10 day prescription. Of course I'd love to be one of those "we noticed a difference within 2 days" cases, but I'm not holding my breath. I'll settle for day 3

 

We've tried Augmentin and still ended up with a confirmed ear infection and a probably sinus infection. Switched to Omnicef. The ear seems to have cleared but not the sinuses. Hopefully this will do the trick.

 

What I'd like to see improve most is the emotions. He's not mentally in a good place right now. He has zero zest for anything including the things he used to love. He used to be a very enthusiastic eater and would often say, "my compliments to the chef!" about things as simple as spaghetti or tacos. Now everything is just "ok". He used to love snowboarding, riding his bike, and karate. Now he has no get up and go. He'll get totally obsessed about doing something (always something we don't have the right equipment for) and just nag nag nag until we do it and then it never lives up to his expectations. Right now he wants a bmx bike. Before it was fishing. He honestly pestered me for a month. Then he went and was over it in 10 minutes and decided it was boring. I'd like to see some joy, as opposed to obsession about something. He has been enthused about reading a new book series, but it definitely borders on obsessive as well since he's basically holed up in his room for 2 days for each book. He isn't even playing much at recess anymore, so most of his friends are busy playing without him. It's hard to watch him become less and less active in his life.

 

Anyway, I've definitely got some hope right now after a month of total frustration and two weeks of worry. Dr. T. is incredibly personable, polite and knowledgeable without being arrogant. He genuinely seems to care and I felt like he was really listening and assessing our situation. I'm so grateful he took time out his busy schedule to talk with me today. It has really put me in a much better place.

[melanie]

Hi

 

Were on Biaxin also from Dr T .I think I see a difference Its either the biaxin or comming off the minocycline not sure.He did get a stomach ach Dr T said give it in the am but im going to give it a dinner because I dont want him ot feel sick at school .Make sure he eats let me know.

 

Melanie

[dcmom]

Hi Gina

 

The zest for life is what I miss SO much for my 9 yr old dd. What you describe is so similar: withdrawl from activities, waning interest in school and friends, food issues. We found that below the surface the issues are really OCD and anxiety. She also has become mildly obsessed eith a couple book series (Harry potter is one)- I think for her it is an escape, something to keep her mind busy.

 

It took both of my kids 30 days of antibiotics to really see a response, and for both we ended up needing more aggressive forms of treatment.

 

 

 

 

Talked with Dr. T today. I cannot mention how nice it is to talk with someone who not only knows what PANDAS is, but has the expertise to give me some feedback. He answered a few lingering questions I've had and confirmed what I'm seeing does fit the PANDAS spectrum.

 

I've tried twice to get my pediatrician to switch to a macrolide without success. With Dr. T.'s help we are going to give Biaxin a whirl.

 

How quickly have some of you seen success when switching to the "right" abx? We've got a 10 day prescription. Of course I'd love to be one of those "we noticed a difference within 2 days" cases, but I'm not holding my breath. I'll settle for day 3

 

We've tried Augmentin and still ended up with a confirmed ear infection and a probably sinus infection. Switched to Omnicef. The ear seems to have cleared but not the sinuses. Hopefully this will do the trick.

 

What I'd like to see improve most is the emotions. He's not mentally in a good place right now. He has zero zest for anything including the things he used to love. He used to be a very enthusiastic eater and would often say, "my compliments to the chef!" about things as simple as spaghetti or tacos. Now everything is just "ok". He used to love snowboarding, riding his bike, and karate. Now he has no get up and go. He'll get totally obsessed about doing something (always something we don't have the right equipment for) and just nag nag nag until we do it and then it never lives up to his expectations. Right now he wants a bmx bike. Before it was fishing. He honestly pestered me for a month. Then he went and was over it in 10 minutes and decided it was boring. I'd like to see some joy, as opposed to obsession about something. He has been enthused about reading a new book series, but it definitely borders on obsessive as well since he's basically holed up in his room for 2 days for each book. He isn't even playing much at recess anymore, so most of his friends are busy playing without him. It's hard to watch him become less and less active in his life.

 

Anyway, I've definitely got some hope right now after a month of total frustration and two weeks of worry. Dr. T. is incredibly personable, polite and knowledgeable without being arrogant. He genuinely seems to care and I felt like he was really listening and assessing our situation. I'm so grateful he took time out his busy schedule to talk with me today. It has really put me in a much better place.

[simplygina]

I think my son has reread every single Harry Potter book 10 times. I was so proud of him for reading them all, but when he just kept rereading them over and over. I actually hid them for awhile hoping he'd start reading something else. He read a few other books but just didn't get into them. Now he's zooming through the Percy Jackson series.

[dcmom]

Ditto to the potter stuff- now we are on to The Ranger's Apprentice and mythology- not as obsessive about it though:)

[Worried_Dad]

Hah - I can relate! During the height of exacerbations, about the only thing that helped calm our son was reading to him. My wife and I have read the entire Dresden Files series (11 novels) to him about 6 times now. We just kept reading them over and over. If we tried a different book, he got extremely agitated and said it "didn't work."

 

Seems like when their brains are inflamed and flooded with antibodies / CamK II, every part of their lives just gets stuck in a rut, and they can't escape it. The "re-reading same book" behavior seems pretty common: I believe Buster and EAMom read the Harry Potter series to their PANDAS daughter a bunch of times, too.

 

 

I think my son has reread every single Harry Potter book 10 times. I was so proud of him for reading them all, but when he just kept rereading them over and over. I actually hid them for awhile hoping he'd start reading something else. He read a few other books but just didn't get into them. Now he's zooming through the Percy Jackson series.