Joan Pandas Mom

I agree with you Colleen, by removing them you remove a potential host.

Our ENT thought it might help so did agree to do T&A. My DS had that done last Dec. I found it very interesting that the ENT told me after surgery that he was surprised my son's tonsils didn't give him more problems. They were very gravely and ###### (gross). He also said he wouldn't be surprised if they had strept in them. My son had a Culture done about 3 weeks prior to surgery that came back negative. His titers were in the low 1,000. though. My DS was harboring strept in the tissues of his tonsils. I think it was probably there for years.

I had the same experience with my son. When he first developed symptoms (within 24-48 hrs and 9 years old) I didn't know about PANDAS then either. I thought it was Autism. Someone told me that kids can't just turn Autistic. I am wondering it lately. He started a new compulsion where he can't finish his words or sentences. He barely talks. He use to be very outgoing. Can PANDAS cause Autism in a 9 year old?

Dr. B. told me exposure can be like putting wood on a fire that you are trying to put out. I hope things calm down for him soon.

Are or have any parents gotten Flu shots? I'm trying to decide if I should get one.

I think there might be a connection with my son too. I'm not sure, but was trying to eliminate it. We did start Azithro 1 week ago, which has red dye in it.

I sent my son after 4 or 5 days the first IVIG. Now, I think I should have waited longer. I think it depends on the situation. My son has had this for so long and he just turned 16. He just had IVIG #2 Thursday. He is too sick to go back to school right now anyway (horrible OCD) but I think if he were able I might keep him home longer anyway. I am finally realizing I need to get his autoimmune problem under control first with less exposure, stress, etc. I know what you are going through, it is a tough decision.

How long after starting the higher dose of Augmentin did it take to see results?

That is such great news. Best wishes and prayers for continued success.

Where can I find the sheet to keep track of symptoms that Buster created?

Thank all of you for this. I will keep you posted. We are gong for IVIG #2 later in the week. I am going to ask Dr. about increasing Augmentin. All of you have been so helpful.

I should mention too, my older son (nonPANDAS) suffers from depression. I found out Sunday he had elevated ASO 244 and a bad cough that probably turned into Bronchitis. He started 500 mg Biaxin 2x day Sunday. I noticed last night he was smiling more, much more talkative. Maybe his infection is/was contributing to his depression too?

THANK YOU SO MUCH FOR THIS. I hope between this and the IVIG my son can have the life God intended for him. It would be so great to see the beautiful, sincere, RELAXED smile again. I love your member picture. I smile every time I see it! Thanks.

Hi Dabel, I'm sorry you are going through a downturn too. My( just turned) 16 yr. old son had his 4th crippling exacerbation last Oct. too. His ASO was 1400 and AntiDnase normal. His ASO was 650 +/- in March 450 in May and 333 in August. He has been on high dose abx for 1 year too. He is in the middle of a horrible exacerbation right now too. Going for IVIG later this week. Good luck. I think you are right about the intracellular. It is strange it remains exactly the same. It makes me wonder if the Augmentin is doing anything at all.

My son's 160 lbs. Someone told me they thought one doc treated a 16 year old with 2000 mg 2x a day but they weren't sure though. Do you know of anyone that has had this. The highest I have heard of is the 1,000xr 2x a day. I'll ask Dr. B too on Thursday.

I got in touch with the psyciatrist who prescribed it and like you here he said for some people it has the opposite effect. He said to stop giving it to him. He seems a little calmer tonight.

I ended up explaining to the nurse again how serious a problem this was. I told her my son has been out of school going on 3 weeks, completely incapacitated by PANDAS with an upcoming IVIG. I told her he was out for 3 months last year and that we can't have anyone sick in the house or the ivig will be useless. The on-call doc did end up calling in abx. I hope this and ivig are the answers over the next few weeks.

He started 40 mg prednisone today for upcoming IVIG this week. He has taken it once before, it made him crazy hyper. He hasn't had Benadryl for about 12 years. That made him really hyper and almost hallucinate. Maybe he had PANDAS then and I didn't know it.

He started the clonazepam Friday evening. It doesn;t seem to be doing anything. I think you are right. He a little more hyper. But he is soooo scary hyper in compulsions before Friday too. I can't calm him down. Nothing works. Thanks all of you for your prayers, help and concern. It helps.

His Igenex was negative. Mycoplasma IgG only was elevated on my son, his older brother and me.

My older son's ASO is 244 it was ordered by Dr. B before my PANDAS son upcoming IVIG. His Pedi is out this week and the on call pedi won't call in script. I tried to explain PANDAS to her nurse again. I should have here call Dr. B. It never ends.

Thank you. This Forum helps soooo much. You are all so great.

I should mention Pedi suspected PANDAS and or SC when this started, we went to NUMEROUS docs from there and everyone (like Sammy) said OCD. We had been treating it like OCD until Oct. 2009, when that incapacitating exacerbation aso titer was 1014.

He turned 16 late August and has had this for 6 years. Do you wonder what we are missing? I find myself always trying to find the missing piece--it just isn't happening.

I'm sorry you are going through this. I know what you mean when you open your eyes in the morning, it starts all over again. Dr. Nicolaides and Dr. Trifilliti are in NJ. They are two knowledgable PANDAS docs. I would try IVIG #2. We are going for it next week. It has been 4.5 months since first one and like you we saw little results for a short term. I'm trying this one and at least one more. I might look into PEX too? I don't know much about it since we decided to go the IVIG route. If you do do IVIG #2, have everyone tested for aso, anti-dnase and mycoplasma. I sent my son back to school after about 4 days. I wouldn't do that again.