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Definitely PANDAS


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We had our second visit with the Neurologist today and got all of Alex's blood test and MRI results...all came back negative for any catastrophic illnesses...

 

He has been on Omnicef for 4 weeks and this week the tics have practically dissapeared...last week we were still a little saw-toothed...this week even I am having a hard time detecting tics...not even finger wiggles....

 

The Neuro said he thinks this is definitely PANDAS on a very low end of the spectrum or some other variation of it...as he firmly believes the initial strep infection was the trigger...and wants to keep Alex on the antibiotic until the fall...then we will re-evaluate...depending if anything crops up...our next appointment is at the end of August...

 

Alex was also exposed to strep last week, his friend who he plays with everyday got it last weekend...and no change in Alex's behavior at all...yesterday he developed a sore throat with small red blisters and no change in behavior (the doctor looked at it today and said it appeared viral) ...we are keeping him on the Omnicef for now...and may switch him to Azith in the fall for resistance reasons...

 

So for now...all is good...

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We had our second visit with the Neurologist today and got all of Alex's blood test and MRI results...all came back negative for any catastrophic illnesses...

 

He has been on Omnicef for 4 weeks and this week the tics have practically dissapeared...last week we were still a little saw-toothed...this week even I am having a hard time detecting tics...not even finger wiggles....

 

The Neuro said he thinks this is definitely PANDAS on a very low end of the spectrum or some other variation of it...as he firmly believes the initial strep infection was the trigger...and wants to keep Alex on the antibiotic until the fall...then we will re-evaluate...depending if anything crops up...our next appointment is at the end of August...

 

Alex was also exposed to strep last week, his friend who he plays with everyday got it last weekend...and no change in Alex's behavior at all...yesterday he developed a sore throat with small red blisters and no change in behavior (the doctor looked at it today and said it appeared viral) ...we are keeping him on the Omnicef for now...and may switch him to Azith in the fall for resistance reasons...

 

So for now...all is good...

 

Well, I am glad that everything is good for him now. How do you feel about the diagnosis? I'm glad you have a plan with the meds. I'll be watching to see how things so in case I need to switch doctors or go back to Dr. N. for a second opinion!

 

Susan

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Great news. We are headed to Georgetown to meet with a neurologist to get set up for IVIG or plasmaphoresis. Her name is Beth Latimer and she is wonderful if things get worse. We go the 29th. Carter is functioning but still with mood swings, tics, etc. He has had this probably 3+ years looking back so we are not well yet with antibiotics alone. There is a pediatric immunologist who comes to Charlotte once a month from UNC (we don't have one here). My hope is after treatment to get looped up with him for future needs.

We had our second visit with the Neurologist today and got all of Alex's blood test and MRI results...all came back negative for any catastrophic illnesses...

 

He has been on Omnicef for 4 weeks and this week the tics have practically dissapeared...last week we were still a little saw-toothed...this week even I am having a hard time detecting tics...not even finger wiggles....

 

The Neuro said he thinks this is definitely PANDAS on a very low end of the spectrum or some other variation of it...as he firmly believes the initial strep infection was the trigger...and wants to keep Alex on the antibiotic until the fall...then we will re-evaluate...depending if anything crops up...our next appointment is at the end of August...

 

Alex was also exposed to strep last week, his friend who he plays with everyday got it last weekend...and no change in Alex's behavior at all...yesterday he developed a sore throat with small red blisters and no change in behavior (the doctor looked at it today and said it appeared viral) ...we are keeping him on the Omnicef for now...and may switch him to Azith in the fall for resistance reasons...

 

So for now...all is good...

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Hi MomMD,

 

We have seen Beth Latimer as well. She is knowledgeable, but most of all, compassionate. She really gets that these kids are suffering, and I really felt she wants to help. We consulted with her when our dd was in recovery from her first episode of pandas. She is still doing well, and on prophylactic zithromax. If she has a relapse, we plan to have IVIG through Dr Latimer. Please keep us posted on how your appt goes. Do you think you will be able to have insurance cover it? I imagine most companies do not cover for pandas, but is there a more general diagnosis that could be stated? Someone in my neighborhood had a child go through pex w/ Dr Latimer @ Georgetown, and their insurance paid....

 

Best wishes to you! Do you live in the DC area?

 

Eileen

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