Help with PANDAS please

[determinedmom]

Can anyone help me with some questions about PANDAS? After a recent strep throat infection, my daughter began to show signs of OCD. Excessive handwashing, won't touch doorknobs, clothes that were worn the day before, or lightswitches, worry about dying, worry worry worry all day everyday about everything! After some of my own research, I diagnosed her with PANDAS! I called my pediatrician for a consultation and he wouldn't meet with my husband and I, saying that was "out of his league" He referred us to a psychologist. The psychologist agreed that our daughter has PANDAS. We asked the psychologist the following questions and he said that those were medical questions that we should ask our pediatrician about!!

 

Here are my questions:

 

Will her brain ever fully recover from the damage it suffered when the strep infection occured?

 

Do we need to send a note home to parents at school letting them know that a child in the class has PANDAS and encouraging them to keep their children at home if they complain with a sore throat and also to report to the teacher if their child has been diagnosed with strep throat?

 

If she gets strep throat again, will it add to the damage, making her symptoms worse each time she gets strep?

 

We know this is a pediatric disorder, so when will she "outgrow" this disorder so we can stop worrying about her getting strep again?

 

What are the natural vitamins/suppliments recommended for children with PANDA'S?

 

Any other information is really appreciated. Thank you so much

[Chemar]

Hi determinedmom

I am not a PANDAS parent so cant really answer your questions, but did want to welcome you to ACN/latitudes

 

I know other parents here who deal with PANDAS will have some input for you

[ad_ccl]

I will try and answer your questions - our son was diagnosed with PANDAS after a sudden and severe onset of tics at age 6 - he is now almost 10 and doing amazing - he is on prophylactic azithromycin to help modulate his immune system and assist in preventing further infections.

 

I believe that when caught and treated properly that the brain recovers - my son can be 100% tic free when well -so I don't think there has been permanent damage done - although that was always my biggest fear.

 

For the last few years at school we have asked the school to notify us if someone in his class has been diagnosed with strep. What we have learned is the school cannot ask them to keep their children home for the recommended 24 hours after starting antibotics - that is up to the doctor. The school has been good at notifying us so it helps us know if his symptoms flare up at the same time that it makes sense for us to up his antibiotics to a full course.

 

Our son has not had another diagnosed strep - but gets flare ups with other illnesses - PITANDS. The doctor has said he may have had strep but the throat swab would not show it as he is already on antibiotics. We would test his strep titers every 4-6 months - they remained extremely elevated for several years.

 

I think as they outgrow it, it means their immune systems acts more normally -we are already seeing this with our son -he now is getting more normal symptoms of regular viral illnesses instead of the onset of tics.

 

Fish oils are usually a good vitamin but some don't react well to it. Magnesium is also good. We give a good multi and vitamin c - when he has eye tics we give l-taurine and if he gets vocal tics we give l-carnitine. It is always best to start with one vitamin for a few days then add another so you can see what works and what doesn't.

 

There is lots of hope - my son was really sick and at times we did not think he would be able to attend school - this year he has been off school once when tics increased after his brother had strep - that was the worst he had been in quite a while. He is active in sports and has lots of friends and does well in school. It is a long road but you will get lots of support and answers here and it will be worth the travel.

[trubiano]

We have only been dealing with PANDAS for a year and the antibiotic, fish oil, and multivit have been very helpful. I was told by our neuro that PANDAS was a pediatric issue and that once he reached 18-21 years things should be over, BUT they can not tell us for sure. As for school I went in to the teacher in the beginning of the year with the PANDAS print out and told her if she noticed something was off at times this is what is going on. I had to go in and talk with her again 6 months later when he was having a huge flare up. He was getting in trouble with his focus issues and OCD behavior, so I reminded her that positive reinforcement was needed, not punishment. I would be concerned that your PED isn't willing to help. They should be giving you the antibiotic and monitoring labs. The psychologist was good for a few visits to learn coping skills to the behavior, but why keep going after that? Maybe others continued, but I felt like once we lerned how to overcome his OCD feelings when they came therapy wasn't needed. Dr Murphy in FL would be a good person to go see. She will give you everything your PED needs to continue treatment and maybe then you doctor will feel comfortable with what needs to be done. One last thing that will always help is this forum! We are all here to help one another!