I think my 5 year old has PANDAS! What do you think?

[bulldog24]

My son had a bad panic attack last night. It was about bedtime. he was gagging himself and he was visiting my parents upstairs. they said something like if your hands will get stuck in there if you keep doing that. Well this sent him over the edge. He came down with both hands in his throat constantly gagging himself. He was crying and saying he was scared and to take him to the hospital. I gave him some benadryl and Tylenol (didnt have ibuprofen or I couldnt find it in the madness) I was able to calm him down after awhile and he fell asleep.

 

I have decided that I will take him to the ER today if it happens again. This is no way for him to live. I think this was one of the most disturbing things I have ever witnessed.

 

DO they ever use things like xanax for kids this young for panic attacks?\

 

He seems ok this am, still obsessing but he is playing his video game so he is distracted.

[butterflymom]

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Edited February 3, 2016 by butterflymom

[butterflymom]

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Edited February 3, 2016 by butterflymom

[EAMom]

Hi,

 

Lots of Lyme docs are PANDAS aware (or at least not fearful of a trial of antibiotics, like a regular ped). I would talk to your Lyme doc ASAP to see if he (she?) will see your child.

 

I would wait on steroids until the Lyme tests (and also Cunningham test if you are going to do that) are done. Advil (Ibuprofen) is okay to give.

 

Sometimes it is helpful (for later, to show docs) to take videos of behaviors, movements, tics, etc.

 

Did you culture your other kids?

 

Can you post where you live? Maybe someone can rec. a closer doc (while you are waiting to see Dr. B.). Also, there is a thread of helpful docs on this forum.

 

hang in there!

 

PS lots of PANDAS kids have neg/low strep titers...even some of those with positive cultures! Mine never had elevated titers even though both her and her sister were culture positive and her OCD was so bad we had to hosp. her (acute food refusal, anorexia).

Edited March 12, 2011 by EAMom

[bulldog24]

Thank you so much for your support and replies. I live in massachusetts so if anyone can suggest a specialist I would appreciate it.

 

My daughter and my son usually swap strep throat back and forth so she also has had it a lot. I know my strep titers were very high when they were tested 2 years ago, but I have never had strep throat. my ID doc said there is no way I am a carrier because I have been on abx for 4 years. I do wonder about my dog possibly having some strep bacteria. She is a bulldog and always has skin infections usually food allergy related. She did have a infected twisted nasty spleen removed 2 years ago. I have that spleen culture somewhere I should look at it again.

 

The other thing that is new is that my son has 2 canker sores. I think this is very odd. Anyone know what the heck that could mean?

 

Again thank you so much!

[EAMom]

Yeah...my brother has a french bulldog who also has allergies and skin issues (also yeast!). You have to keep the folds of their skin clean too.

 

Here's some docs from the helpful docs thread. Dr. Geller is one of the Saving Sammy docs, I don't think many on this forum use him. You might also contact KaraM http://www.latitudes.org/forums/index.php?showtopic=12837 since they might have some doc recommendations (Salam MA support group):

 

Massachusetts

 

Dr. Dan Geller at Mass General 617-724-6300 (augmentin only?)

 

Dr. Robert Fuhlbrigge in Boston, MA Assistant Professor of Pediatrics(pediatric rheumatologist at Children's Hospital Boston)

Dr. Raif Geha in Boston (pediatric immunologist at Children's Hospital Boston; specializes in immunodeficiency)

Childrens Hospital Boston

Rheumatology /Fegan 6

300 Longwood Ave.

Boston ,Ma 02115

0ffice # 617 355-5727

page 617 355-6369

email robert

robert.fuhlbrigge@childrens.harvard.edu

 

Elizabeth TePas, MD (pediatric immunologist)

Mass General Hospital for Children/Newton-Wellesley Hospital.v

Edited March 13, 2011 by EAMom