new member needs info

[so_hopeful]

My DS 4.5y.o. started blinking/changed in behavior about a month ago, having had strep in the recent past. A friend pointed out the connection, and now I'm pretty sure it's PANDAS. Where do I start? He was not treated by abx for strep.

[Chemar]

Hi

I moved your post off the helpful info pinned thread onto its own new thread so that others can reply

 

thanks to EAMom for alerting me to this!

[Phasmid]

Hi,

 

Where are you located? The first step might be to try to find a local physician who treats PANDAS. Physicians with experience treating autism can be helpful, since they are accustomed to thinking "outside the box." Then an aggressive 30 day antibiotic treatment is what most kids get to start with. Are there other symptoms?

[matis_mom]

My DS 4.5y.o. started blinking/changed in behavior about a month ago, having had strep in the recent past. A friend pointed out the connection, and now I'm pretty sure it's PANDAS. Where do I start? He was not treated by abx for strep.

I would start by going to your pediatrician and have him checked for strep (rapid and culture) and ask them to run bloodword (ASO, AntiDnase B, streptozyme). Some pediatricians are not even familiar with these tests (except for ASO, that's pretty standard). But, at least you will have taken the first step. I agree is best to see a PANDAS specialist, but it could take a while to get an appointment. So just get the ball rolling with your pediatrician. Try to see if they are familiar with PANDAS or at least willing to learn about it. Some parents here have had great results with their pediatricians, others have been laughed at. So you never know. But, just be ready. All of us here have had to really get tough and take control of our son's health. You need to be prepared to be proactive and even pushy if it gets to that.

 

Also, get everyone in the family checked. Strep is very contagious and it can be passed from family member to family member in a round-robin style, so it's really important to end the cycle.

 

Isabel

[ajcire]

Hi, just curious why when he had strep it was not treated with antibiotics? How was it treated?

[KaraM]

It may help to bring a copy of the FAQ on the helpful threads to your doctor as well as some articles.

 

I also think directing the pediatrician to www.pandasresourcenetwork.org if they don't know about it already.

 

Kara

[T_Mom]

Welcome and I am so sorry you have had to find us here! This is a group of caring members who have been through alot--I would agree with KaraM that the Helpful Threads at the top of the PANDAS forum page have critical information. Also--the www.pandasresourcenetwork.org well worth spending time on--

 

All the best--please keep us posted.

[so_hopeful]

Hi, just curious why when he had strep it was not treated with antibiotics? How was it treated?

 

 

I treat infections with rest, fluids, herbs and other natural means. This has worked for my kids for many many years. Strep was confirmed in April, blinking started in June. I don't know if it's related after all.

Edited July 21, 2010 by so-hopeful

[so_hopeful]

Hi,

 

Where are you located? The first step might be to try to find a local physician who treats PANDAS. Physicians with experience treating autism can be helpful, since they are accustomed to thinking "outside the box." Then an aggressive 30 day antibiotic treatment is what most kids get to start with. Are there other symptoms?

 

 

I'm in Boston, and already made an app't with Specialist, for October .

His blinking is on and off, he also has a nervous laugh, on and off along with some misbehavior not typical of him. I just got the book: "Natural Treatments for Tics" and got helpful suggestions from there which I intend to start applying. Probably should rule out Pandas at some point.

[so_hopeful]

Welcome and I am so sorry you have had to find us here! This is a group of caring members who have been through alot--I would agree with KaraM that the Helpful Threads at the top of the PANDAS forum page have critical information. Also--the www.pandasresourcenetwork.org well worth spending time on--

 

All the best--please keep us posted.

thanks

Edited July 21, 2010 by so-hopeful