New here...

[T_Mom]

Welcome to both new families--I am so sorry you have had to find the forum, but you are in a good place of parent-support.

 

M2ar2...The rash concerns me and I would call the doctor to speak with him/her tomorrow--

What a blessing to have that doctor and NP!! They are obviously tuned into your child--The top of the PANDAS forum has numerous helpful threads, including one on doctors parents have seen--who were helpful. You might want to add a note about your doctor.

 

All the best to both of you dear families--

Edited May 20, 2010 by T.Mom

[ma2ar2rm2]

Welcome to both new families--I am so sorry you have had to find the forum, but you are in a good place of parent-support.

 

M2ar2...The rash concerns me and I would call the doctor to speak with him/her tomorrow--

What a blessing to have that doctor and NP!! They are obviously tuned into your child--The top of the PANDAS forum has numerous helpful threads, including one on doctors parents have seen--who were helpful. You might want to add a note about your doctor.

 

All the best to both of you dear families--

 

Thank you T.Mom.. I went to sleep totally planning to call the doctor this morning.. but when she woke up the rash was gone, she still feels a littl bumpy I guess is the word I can use but the redness and alot of the prickely bumps seem to have gone away.. I'll go and look at the helpful doctor thread here in a minute.. my doctor has been wonderful so far.. He is the one who figured it out and told me about PANDAS.. he talked to me on the phone for close to an hour when he was telling me what he thought she had and what it was all about.. That was on a friday night around 9:30PM that weekend I looked up so much stuff on the internet... everything I read said to be ready to fight with your doctor to get the antibiodic treatment and to get them to really learn about PANDAS.. So I went in on Monday to see the doctor with 3 pages worth of notes and questions and and websites and facts and just armed to do battle.. but he told me how he wanted to treat her and then he told me he has never treated it before but he is learning as much as he can and is willing to fight this head on and strong.. and I just pitched all the papers right up in the air and started to LOL and said I guess I don't have to fight with you we seem to be on the same page..

I knew I liked this man.. he has been all of my children doctors from the day they were born.. He was the pedi. who came and took care of them all in the hospital after they were born.. but I now love him.. the time he has taken to go over all of her charts and the time he has took to look up PANDAS and learn about it.. I just thank God for him.. and that I didn't have to spend year trying things that didn't work and didn't help.... But both myself and the doctor are new to this and we are both learning..

[ForyouCG]

Welcome!

 

Have you seen the FAQ thread?

http://www.latitudes.org/forums/index.php?showtopic=6266

 

Is your doc planning on treating the PANDAS appropriately? Is your child currently on antibiotics (which one, what dose, and how long)?

 

Don't forget to get throat cultures on family members to check for assymptomatic carriers.

 

Definitely do consider contacting one of the "big three PANDAS docs": Dr. K., Dr. Latimer, or Dr. Trifiletti.

 

BTW, Dr. K. has treated a couple (few?) of PANDAS kids with IVIG that had been diagnosed as autistic. After the IVIG (for PANDAS) the autism went away. IN other words, these kids weren't autistic with PANDAS...it was ALL pandas. I'll post the webcast that talks about this if I can find it.

Thank you for all the great information! My son's doctor is Dr. Trifiletti and I went to see him the very same day my son was discharged from the hospital. He is so compassionate and supportive. He prescribed Biaxin 500mg 2x a day for 10 days. The med bottle says 2 refills so I am not sure if I need to continue the Biaxin once the ten days are over. I will call and ask him. I also know that there has been alot going on with my son from when he was diagnosed with autism when he was 3 1/2 years old. He was perfectly fine up until that age, talking, playful, social and very smart for his young age. He started getting ear infections, strep infections, scarlet fever, asthma, allergies, stomach issues and sensory issues( extreme sensitivity to noise and tactile defensive). He was on the gluten/casein free diet, vitamins and homeopathics. There was tremendous improvement with his health and the "autism" never was a disability for him with the exception of the sensory issues. Everything started changing in June of 2009 when he started experiencing mood changes such as one incident of rage, headaches and vocal tics. He was diagnosed in October with Tourette Syndrome and did not need any medication at that moment because he was functioning and the tics were not interfering. Back in September of 2009 he had strep throat infection and was put on amox. The drastic change happened at the end of March when he had a severe rage attack, increase in vocal/motor tics, ocd symptoms and severe seperation anxiety. Ever since then, he has not been the same. A completely different child and it breaks my heart in pieces. It also hurts because he is struggling with all these symptoms on top of the autism and I'm praying I can reach him enough to help him understand what is happening. He is such a warrior and I know he understands some of it because just in the hospital he whispered "Tics" when he was having body jerking tics. I feel so helpless at times, especially when he looks to me when he is ticcing. I can only pray that God will bring healing and comfort and as his mom do everything in my power to help him as best as I can.