PhillyPA

Your ENT is annoying. If it were me I would have walked out and said two letters of the alphabet at her. There are lots of good surgeons. Give your money to a surgeon who listens to you.

Why don't you e-mail Dr. Cunningham and ask her? Tell her that your daughter has a score of 168 and you have seen Dr. Latimer. Tell her that Dr. Latimer is doubting a PANDAS diagnosis. Ask her what else could cause a score that high. I am sure that she will say Lyme but maybe something else too. Maybe she will say that in her opinion it is PANDAS. Share whatever info Cunningham gives you with Latimer. Dr. Cunningham will e-mail you back. My son had a score of 161 but he also had chorea, mutism, loss of handwriting, frequent urination, and a host of other symptoms. He is also a patient of Dr. Latimer's. I also think that Latimer wants to rule out Lyme before starting anything.

I also think that it is interesting that my son got pneumonia while on 800mg of augmentin per day. The augmentin did not protect against pneumonia.

My DS age 6 has been in complete pandas remission since August. He was 110% better from all pandas symptoms. He was diagnosed this week via x-ray with pneumonia. His doctor said that it is probably mycoplasma pneumonia. He put him on azithromycin. He took him off the augmentin that he was on to prevent strep and said to resume it after he is done with a five day course of azithromycin. He has had some of his pandas symptoms come back but I am hoping that they resolve when he is better. My other DS age 8 has been doing well since his three high dose ivig's this summer. He has had a set back since his brother's illness. He is acting crazy. OCD has picked up. Crying for no reason is occurring again. He is currently on high dose augmentin. I don't understand this. Could my other son's illness be causing his set back? He doesn't have any fevers or signs of pneumonia what so ever. How can this happen? So is it the germs in the air? It seems bizarre that a kid can react to someone else's sickness. I know I heard it on this before that kids can react to other kids strep - but how does that work? Does it mean that my son actually has acquired the mycoplasma germ from his brother? Should I put him on azithromycin? I am stressed. I am worrying that this is going to effect my DS8's recovery.

My son had a bad reaction to Zyrtec. Zyrtec can cause behavioral problems in kids. Some people are fine with it, others are not. Zyrtec seemed to make things a lot worse but it could have just been a coincidence.

Columbia University in New York City has a full neuropsch department filled with lots of neuropsychiatrist.

Both of my sons have low titers. You can absolutely get strep in the sinuses. I would also recommend a pandas specialist. My boys see Dr. L in Bethesda, MD.

He had three Ivig's one in May, one in July and one in August. 2g/kg.

My son's tics got horrible after his ivig's. He had three of them this summer. They went away. I know the panic you feel. Trust me - they all went away.

My son hated the chewables. He would not eat them. The liquid has been working for us. I squeeze in a drop or two of Hershey's strawberry liquid syrup. Please folks, I know it has red dye in it. I have zero concerns about red dye. Anyway, the syrup works great. If strawberry is a problem, try Hershey's chocolate. The drop I squeeze is per dose.

I recommend reading any of Oliver Sack's books. I just started reading The Mind's Eye and it is great. Also, recommend his book on music, although the name escapes my mind right now. I his books, he talks a lot about strange cases of speech loss, partial recovery and spontaneous recovery due to damage of the brain via stroke, injury or infection. And yes, my son lost his speech at age five due to pandas. It started out that he wouldn't talk much, then couldn't remember the names of things and searching for the right word to finally mutism. He had three ivig's this summer and is doing wonderfully. Language is all coming back. He is now 8 years old. His behavior is amazing. He is the sweet little boy I remember. His pandas doctor said the words will all start coming back but it will take a while. So far, so good!

My son had an MRI during his first pandas episode. He had a complete sinus blockage.

My son's PANDAS explosion started when he took Zyrtec too. My very unscientific theory is that the Zyrtec crossed the blood brain barrier and took the PANDAS antibodies with it. Or, it could have just been a coincidence. Zyrtec alone, without auto-immune issues, can cause severe temporary behavior problems in children.

My son is a patient of Dr. L. He started out with a month long steroid taper and augmentin. He was not back to baseline after three months antibiotics. He then had IVIG 2g/kg in May, July, and August 2010. We retested his blood via Cunningham test yesterday. Dr. L will see my son mid Dec. to decide the next course of treatment, if any. He will stay on antibiotics until he is in his 20's. We have a lot of rheumatic fever in my family so I am not at all intimidated by keeping him on antibiotics that long; especially something as benign as augmentin. Every Pandas doctor seems to be slightly different in their course of treatment. I think as a parent you have to do your own research, ask questions, and go with your gut as to what feels right. IVIG is scary but I really had no choice. My son had no quality of life. Constant suffering. IVIG gave him a big chunk of his life back. He is not back to baseline yet but for the most part, he is enjoying life. He is happy.

It is not at all common for children in the age group of 4 and 5 to get sudden onset autism. Even less common in 5 year olds. I don't want newcomers to get only one person's experience and impressions. I have spoken to a DAN doctor. It is virtually unheard of. Stephanie I respect your position and your research but it is different from mine. If your child gets sudden on-set regressive autism at age 5, it is probably PANDAS.

Yes you can split them in half. Dr. Latimer was trying to get my son to take the pills so I wouldn't have to keep going back to the pharmacy to get the liquid every 10 days. I said they were to big. She said to split them in half. I said they were still to big so we ended up sticking with the liquid. But, you CAN split them in half. I know that they are chewable and suppose to taste decent but my son hates them. I even tried crushing them in applesauce (which is also okay) but he doesn't like the texture. These augmentin chewable pills are different from the Augmentin XR Saving Sammy dose. Those extended release pills can not be broken up.

I agree with Chemar. My older PANDAS son since getting pandas has severe learning disabilities. I don't even care that he is not learning a thing. I am just working on getting him better.

My pandas son is diagnosed as gifted. My other pandas son didn't get tested before pandas exploded but before his sickness his pediatrician told me that I should send him to a private school because he was so bright. I was in the gifted program but I feel like a complete idiot that it took me 2.5 years to figure out Pandas. I berate myself constantly that I didn't figure it out sooner. So I am a gifted idiot.

Three days before my son's overnight personality change, he had the hiccups. Uncontrollable hiccups for three days and then bam - his personality was gone. At the time, we thought it was cute that he could not get rid of the hiccups.

Peglem, you are right on. I agree with you 100%. When the brain is sick, it only has so many ways to show that it is sick. For example, many people who have had traumatic brain injuries, like soldiers in war who have had have their heads blown off, have autistic symptoms. Kids and adults who get herpes encephalitis or any other type of encephalitis, have autistic symptoms. You can be an adult, get encephalitis, lose your language and be unable to sleep, etc. and it will look like autism. When I refer to an autism I am referring to a more layman's and professional definition- which is usually in infancy or toddlerhood. I do believe that autistic symptoms in children are out of control-and there is a reason behind it. When my mother was a nurse at Bryn Mawr Hospital in Pennsylvania( this was fifty years ago) she was on rounds with a doctor. They went into a room and he said, "This is a child with autism. Take a good look. You will never see it again. It is extremely rare."

I didn't read all of the posts here. Sorry if I am repeating what someone else has said. I have lots and lots and lots of friends who have kids. All of them, from all over the country, have joked about their kids night sweats. It happens to healthy kids as well. Sometimes kids sweat. Both of my PANDAS boys have had at some point night sweats. It is the least of my worries.

tampicc, I have heard of children being diagnosed for autism at age 5. Meaning that they have had it a long time and then before kindergarten or during kindergarten got evaluated and received an official diagnosis. But, you do not hear of perfectly normal developing 5 year olds developing regressive autism. If you know of a few people whose children developed regressive autism at age 5 - that is a huge deal. Five year olds do not get autism. It is always something else.

who is your son's doctor? A PANDAS specialist?

OMG! 14 years old. I can't believe it. And I thought age 5 was bad. Did the doctors suspect PANDAS right away? Your son must be so scared.

My son was perfectly normal and healthy up until age five. That's right - FIVE. He got pandas overnight. Lost his language. Became autistic.