LaurenK

Where do you live? We live by NYC and haven't had any problems, all neurologist have been very open minded and treated aggressively with immmunosuppressants. Our local ped on the other hand is a piece of work.

Where do you live? We live by NYC and haven't had any problems, all neurologist have been very open minded and treated aggressively with immmunosuppressants.

We used the lab that Bouboulis had. He said it was similar to igenex.

We were told my son has Lyme mainly due to an IgM p23 band but on the last test that was done that band was completely gone but replaced with a p66 IgM. Any ideas what this could mean? Is it still Lyme?

We had the exact same thing and on day 3!! It went away on its own but we have a cream from the dermatologist as well. Just a cortisone cream

Today I went to the ped, we just had IV steroids for my son and the ped is just not on board at all. We want him to prescribe antibiotics and prescribe them aggressively when needed but he said my son is too complex. We know of another family who has a son with PANDAS that goes to him but he is fully supportive! We brought it to his attention and he said this: Which patient would you want? The one who’s been sick since birth, behind socially and educationally and has an abrupt onset of tics and ocd? Or a completely normal 9 year old with no developmental or social delays with an abrupt onset of tics and OCD? The first child would be my son. I'm enraged. Anyone else with a child with aspergers who sort of feels dumped or let down by their ped? I feel like because he also has asperger ty[e behavior that the doctor thinks he'll only ever recover to a point so why bother at all.

I was reading a thread on this and it really interests me! We see the same doctor as Pandas16 but he did not offer it to us. Anyone else using this? Anyone know how to get into contact with people who have used it? Seems like they are no longer here.

We were just told that IV steroids are great for treatment resistant mycoplasma. There's a couple of studies published on it as well. That might be something to consider if IVIG hasn't done the trick.

doxy is also a VERY potent anti neuro inflammatory drug. It reduces NF Kappa B, CNS inflammation and modulates glutamate. Our pysch put us on it and really warned us that it's results were more likely due to anti-inflammatory effects rather than chronic infection It's actually in clinical trials for regressive autism.

My son also does great on doxycycline, 100 bid. He also has aspergers. If I recall correctly, your son has that too? Would you say his aspergers behaviors are still there?

Have you tried IV steroids or PEX. IVIG doesn't work for everyone maybe?

We know of a couple of families who had fecal transplants for their PANDAS child and their children are now completely symptom free even of Lyme symptoms. This treatment was just offered to my son as well. There is definitely a gut brain connection.

I would agree with you, but what I am finding in my practice is that almost every one of the autistic kids I treat end up highly suspicious to me of having something infectious...sudden onset, parents who have or have had similar symptoms, were sick when they got immunized, etc. Even the kids who were "born" with it many times have parents with immune problems, had symptoms of PANS in the past, etc. Personally, I am beginning to think that the majority of autism is infectious. Good example...DS19 was treated with abx, and some of his symptoms went away (at 15.) From 18 - 19, he was treated with IVIG, and after the 2nd dose, his social skills jumped multiple years...overnight! He is diagnosed with asperger's syndrome. But T potter there must be more to it than that? Infections and immunomodulatory therapy, otherwise wouldn't your son no longer be on the spectrum at all? There clearly must be A LOT of genetic abnormalities in these children. A lot of kids have Lyme and strep without problems. There have also been studies done showing structural abnormalities in autistic brains. These kids are "different" infection/ immune mediated or not.

Bordecollie, what are your plans to treat your son as an adult?

If the child had pandas symptoms from the start wouldn't they always have autoantibody production? Pandas is an autoimmune disease. I'm sorry I don't understand where you are coming from

Is older harder because of learned behavior? Why do you say this? I've never heard of ivig and steroids not working in autoimmune disease in adults. Can you specify please.

To go back to the article, it was probably just PANDAS that those people in the study were experiencing. Think about it, each time you're exposed to an illness with PANDAS, symptoms come back. People here have already stated that their children experienced hallucinations etc. In the 1940's and 50's doctors probably had no clue to start antibiotics, IVIG or PEX in order to stop a flare. Symptoms probably just kept adding on. Imagine getting diagnosed with PANDAS as a child and in between ages lets say 9- 60 you have about 40 infections- colds etc. Each infection makes the autoimmune response worse and worse. It wouldn't shock me that by late adult hood it looks like psychosis.

Humira is approved for severe treatment resistant depression in adults. Maybe that could work. We use steroids with success despite Lyme.

Does your son have any active infections currently?

I think it's extremely important to take into account which articles you post here. This article is 6 years old! Medicine changes drastically in 6 years and so do the tools available to treat the illnesses. Every disease is a combination of genetic, environmental and infectious triggers. There will always be inflammation. Examples are quoted here from the 1940s!! Clearly the outcome will not be as good as it is now.

A gastroenterologist told us those foods are only pro inflammatory if the gut flora is not working properly?

My son has known lyme and just did great on a very high dose of steroids. Almost all symptoms remitted.

Dr. B had told us strep is not an issue in probiotics? hm

Why get involved in this at all? Clearly now these girls are seeing excellent doctors. What's the point? If they have conversion disorder, they have conversion disorder.

http://www.jpost.com/LifeStyle/Article.aspx?id=256673