PhillyPA

How old was your son when he got regressive autism?

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So, are you saying that your son has never been tested for Lyme or has not had a lumbar puncture? After all this time, no doctor has ordered these tests?

It took three months after a month long steroid taper and continual antibiotics for my son's handwriting to improve. It is now stellar.

We don't have Lyme. Dr. Fallon, Lyme expert, does not use Igenex labs.

I rarely watch tv. A few months ago I was watching some crime tv drama. Maybe it was Criminal Minds, i don't remember. They were interviewing a serial killer and the killer said that every season as a child he got strep throat. I got a kick out of that. Some writer in television seemed to be familiar with PANDAS. In that drama, they associated strep with growing up to be a serial killer.

RNMom I am so happy for you that you are on the right track! It seems as if your prayers are being answered! Tenacity - I would highly, highly, highly doubt your son has Lyme. No disrespect, RNMOM, I know Tenacity's case. If your son has Lyme, I, personally, would spend the $3500.00 to see Ann Corson and get my own son tested for Lyme disease (for the fourth time). I have seen your son's DVD. THAT is not Lyme. It absolutely is NOT Lyme, Bartonella, or any other tick borne illness. After reviewing this, I retract the above statement. I have absolutely no idea if it is Lyme or a tick borne illness. I am not a doctor.

My son's doctor recommends for both of my boys full strength augmentin until they are in their 20's.

Your pediatrician is awesome! What a great doctor and support for you.

EAMom, did you send the researcher an e-mail and tell him your suspicions? I agree with you. If you didn't do it, I will. Spread the word so some other kid with the same symptoms doesn't have to suffer.

How do we know about strep in non-strep locations? Have there been studies of children who swabbed positive on peri-anal strep or sinus strep?

hang in there Tenacity! I know it feels like you are watching a plant grow. Painful, slow, and hard to notice the difference. Be patient.

What did Dr. Latimer say? Did she give you any insight, from her experience, how long it would take to see signs of improvement?

Try giving her a full dose of motrin every four hours for two or three days. I did this this weekend and it worked wonderfully. Stopped the insanity in its tracks.

Everyone in our family will be getting the flu shot.

Well, I think the permanence is a real and logical fear. Especially depending on the severity of symptoms. My son stopped responding to plain old amoxicillian around 22 months of symptoms. (This was before I even knew about PANDAS). It took 2 years and 9 months of severe symptoms before a diagnosis of PANDAS. I guess I will know in about a year if it is permanent or not. If he is not better in a year, I highly doubt he will get better. I am not looking for sympathy. It just makes logical sense. Although his PANDAS doctor believes that he will recover. I will believe it when I see it.

This is normal. For us, things got much worse before they got better. Things I had never seen before popped up. Those strange symptoms will go away but it may take several weeks.

If they are busy, it can take up to 6 weeks to get results back.

I hate the fact that I now hate the holidays. My most favorite time of the year is now the worst. I can't wait until it is all over with. I hate that I think to myself, "This is going to be my 4th Christmas without him."

I recommend Dr. Latimer. She is a neurologist and an amazing doctor. Driving distance from NJ.

My son would drink and drink and drink water and not urinate all day. I was very concerned. How is that possible? After his pandas exploded, he stopped drinking and then the frequent urination started. I actually think that he was holding his urine in. It must have been so uncomfortable. i think it was OCD.

In January, 2007 my son was exposed to Group A strep by his brother. They both were very sick. Only his brother tested positive for strep. Only his brother got the antibiotic. After this, the son who did not get the antibiotic developed a need to drink water ALL OF THE TIME. He was constantly asking for water. I was very concerned. I took him to the pediatrician because I was concerned about diabetes. He did not have diabetes. This went on for three months before he got PANDAS overnight. So, this leads me to wonder if any of your children had this symptom.

Last year my son did not get the vaccine in time. He got the flu. It ruined him. It was that flu that made me really lose him. We have had three ivig's this summer. He is really improving but he is still not back to where he was before he got the flu. So I guess you have to hedge your bets. It is a gamble. Horrible things have happened to people who get vaccines. Horrible things have happened to people who get viruses and bacterial infections.

The first time you give it to her, break it in half. Try a half dose first and see how she reacts.

I compare PANDAS to cancer. You catch it early, your chances of a cure are very, very good. You catch it later, it is so much harder to get rid of. I voted on my youngest son. It was caught within days of onset. In three weeks the ocd was gone and he stopped spitting out his food. He had steroids and augmentin. Thanks to the suffering of his older brother, my youngest was saved.