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Went to Infectious Disease today. They will not help us at all. Even though last time they said they would if it happened again - which it has!!!!!

 

He finished Day 20 of Keflex yesterday and now we have none. I left a message with pediatrician to call me.

 

He said that it was a coincidence that my son got better on antibiotics and he thought that I should go back to psychiatrist. Words can not tell how disappointed and frustrated I am. He said he thought that the steroids could have altered his behavior. I was so on "my game" and so professional - non confrontational.

 

It sucks so much that we have to advocate for help!!

 

What really stunk is that the nurse told me that the Dr we were seeing and the head of the division were on the phone talking about our case - even before he saw us!! Then to be so resistant. I asked him is this the position of you or the Institution and he said it was the position of him and the Institution. They do not believe in PANDAS.

 

How do I find the phone numbers of the doctors that do believe in PANDAS? Who has helped you?

 

 

Hi,

 

I am in Atlanta also. We have been to a neuro who seems to believe in PANDAS and are due to go back Thurs. to ask for a steroid burst as we are having an "episode" right now. Do you mind my asking who you went to [neuro] and, more importantly perhaps, which ID Dr. you went to so we can avoid him or her? I have a feeling he may send us to one and I want to know who to avoid!

 

Thanks!

 

m

A

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So it was 3 days off the antibiotics and the anger is back (he had only been on the keflex for 20 days - ended sunday). He punched his milk this morning because he wanted a different cup...yelled at us...hyperactive...asked reassurance questions today. I called the pediatrician and asked for some more keflex - she had said no on monday. She said okay - 10 days - we see Dr Latimer on the 17th. Will stretch it to last until then... She said no more antibiotics until we meet with Dr Latimer and there is a clear treatment plan.

 

So thankful she gave us 10 more days...hopefully he will get better quick. He told me PANDAS was back but not as bad as last time - just kills me. I love him so much - I just want my sweet little boy back.

 

A

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  • 6 months later...

So it is March. My son says he has a sore throat last week. He has a weird "territorial" play date with his best friend. He had a bad day at school - could not play with friends - super weird when he is normal. Now he can't stop clearing his throat. Same tick he had when he had PANDAS the first time. He clears it like every 3 minutes or more.

 

After we kicked this last summer - he has been 100% normal - awesome! Fun, happy -- a joker! No worries at all and just awesome. So scared. Will call Dr Latimer tomorrow and see what to do. His glands are super swollen!

 

I hate this so much.

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So it is March. My son says he has a sore throat last week. He has a weird "territorial" play date with his best friend. He had a bad day at school - could not play with friends - super weird when he is normal. Now he can't stop clearing his throat. Same tick he had when he had PANDAS the first time. He clears it like every 3 minutes or more.

 

After we kicked this last summer - he has been 100% normal - awesome! Fun, happy -- a joker! No worries at all and just awesome. So scared. Will call Dr Latimer tomorrow and see what to do. His glands are super swollen!

 

I hate this so much.

 

 

Sounds like my boy with the glands...seems like he is fighting something

One thing to consider,as i am in GA our pollen count is already med-high...

I should have started on allergey stuff a couple of weeks ago...just started 2 days with something simialre to d-hist i got at whole foods

never used it before ...we'll see

try to stay ahead of it, it will be easier to keep inflamation and drainage down....

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I am in GA too. Interesting - he has horrible spring allergies and I just started the allergy medicine 2 days ago too...

Did you try probiotics? They help tons with allergies... That just reminds me to start giving them to everyone before the pollen count is off the charts! We use the "Complete Powder" from ProThera. If you give him several doses each day it will help tremendously with the allergies (and of course it's good to give them anyway if he's on abxs). Also, have you considered the possibility he is reacting to the allergy medication itself? My other son go SOOO CRANKY on it!

 

Hope things get better soon!

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Alergies are a trigger for my son. They are coming early this year and I may start him this weekend on Benadryl.

 

The only alergy med I've read to stay away from with PANDAS kids is Singulair. With everything else, each child reacts different.

 

I first tried Claritin. He was fine until day 11 then he was crazy hyper. Switched to dye free Benadryl. Tired the first day but then adjusted and then can take it daily.

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