PhillyPA

My son got his first ivig in May. He had one 8 weeks later and then another one 4 weeks after that (in August). We are now in a wait and see mode until December. I don't know what to tell you. I guess if you are still seeing improvements that is good. I guess everyone is trying to figure out right now if more is better or is it better to wait.

Who the heck knows. I e-mailed Dr. Cunningham and asked her about this. I'll let you know what she says. Maybe he doesn't have pandas. Maybe he has blah,blah, blah, blah auto-immunity syndrome. The fact that he had a reaction to the vaccines, even though it was positive, leads me to believe that it is auto-immune. Maybe the vaccine distracts the immune system away from the strep antibodies for a bit. The vaccine gives the immune system something else to focus on...

Nope. No fever. No medications. No tylenol. No motrin. The "benefits" last about one month. Sometimes longer. This was all before I even knew about PANDAS. All I knew was that vaccinations made things better.

Ironicallly, my PANDAS son does really well after a vaccination. His Pandas symptoms decrease dramatically. I always thought this was very odd. Vaccinations, for some reason, do good things for him.

Psychiatrists are medical doctors and can prescribe anything that a medical doctor would prescribe.

Amoxicillian worked GREAT for my son when he first got sick. He would have a remission of most of his symptoms. He would not stay on it because we had no idea it was pandas. Everytime he took the amoxiciallian it worked great. But only for the first 18 months. Then, I guess the autoimmune process had "set in" more. It stopped working. Remember, he was not on it all the time. When he went off of it everything would slowly come back. I just knew that amox. made him so much better when he took it.

Vickie it seems like you got help for your son pretty quickly. We went from specialist to specialist who knew nothing. They called it the strangest case they had ever seen. He didn't start treatment for PANDAS until 2 1/2 years later. He had three ivig's this summer and is on a high dose of augmentin. The autistic symptoms are slowly fading. He had autistic features with a twist. He was completely aware of the change and depressed by it. He would cry and say, "I want to talk." It was so hard to go through for so long. He is doing so much better but he is still not back to himself.

His PANDAS doctor explained to me that what happened to my son has nothing to do with autism, although it looks just like it. She said he is showing autistic symptoms. She said that autism does not come on overnight in 5 year olds.

My child was happy and healthy up until age 5 when he developed autism after a PANDAS explosion. It was overnight. He had a severe headache. Lots of chorea. Mutism. Anyone else's child develop autism or autistic like symptoms after PANDAS? What was your child's age?

Jag10 you and I share the exact same thoughts. Would all people,if tested to the extreme, test positive for these things. Very very good question.

I agree with peglem. Heal him first then worry about OT if he needs it.

On paper my boys look like the picture of health. Immune work up normal. Strep titers low. Cunningham test 161 and 137. One healed. One is still healing.

Kayanne - She told me about it in the beginning of the school year. She asked my permission to show the video at in-service today. She also told me that her graduate class had 25 teachers in it, all working toward a masters degree. She said the teacher's were shocked. Not one of them had ever heard of PANDAS.

Dr. Fallon does not have a clinic. You have to have a pretty unique case for him to see your child. Every person I have ever heard who tried to see him was unsuccessful. He is mostly research. My son lost his language at age 5. At age 5 he became autistic. That is pretty unique.

What about checking this forums over and over again throughout the day? What is that a symptom of? I am making myself crazy. I am getting off this computer and going to fold the mounds of laundry piling up on my kitchen table.

What about fear of choking and spitting out your food? That is a big PANDAS symptom. Does Lyme disease have this symptom? I am trying to find a difference in symptoms...

The school principal at my son's Catholic School sent home a letter to all the first grade parents. It stated that a child in the class room has an auto-immune disorder associated with strep. It said that this child may not get any symptoms of strep so that it is very important that all strep cases are reported to the office so this child can go to his pediatrician and get testing. She also stated that this condition is absolutely not contagious. It has worked out wonderfully. The office has called me with every case of strep (5 so far this year). My son, who is in remission, is on 1000mg of augmenting per day and has had no problems. I am sure that some of the parents even threw in some prayers...that's what is so great about Catholic school. My other son who has PANDAS go to public school. He became so disabled with pandas that he needs the special education of public school. The principal at that school is equally as fantastic. She actually showed a video of my son to her graduate school class to teach them about pandas. She is showing my son's video to the entire school at teachers in-service day to educate them all about pandas. I am very lucky.

Mama2alex, Dr. Fallon is considered one of the best Lyme doctor/researcher in the world. He runs the department at Columbia University. He is a neuro-psychiatrist. You can google him. There is plenty out there on him. Kayanne, I too was told that steroids are very bad for Lyme disease. I do believe,thou I can not be certain because my memory fails me most of the time, that it was Dr. Fallon that told me steroids were very bad for Lyme disease. I just remember feeling so grateful at the time we went to see Fallon that I had not yet put my son on steroids. I am not certain of this information so it would be considered gossip if it were spread. I just remember clearly feeling grateful after our visit with Fallon that we had not yet put him on steroids.

Do children with Lyme disease get Sydenham chorea?

When my son first got sick, my first thought was Lyme. My thoughts were not on PANDAS - it was Lyme. That was in 2007. He went 2 1/2 years with no treatment (except for the IV antibiotics that Fallon gave him for 5 weeks). He gave this to him because he didn't want to wait(and neither did we) for his forth Lyme test results to come back, which were negative. He was tested for mycoplasma many times. All negative. My son just started to get treated for PANDAS with ivig this summer. He started on augmentin in February, 2010. He has shown a great deal of improvement. According to his PANDAS doctor, he has had it a long time and it will take a long time to recover. I just don't want to miss anything. I want to make sure that all my basis are covered. I do keep in touch with Dr. Fallon from time to time. I do believe that he is a great doctor. I just want to hear what you Lyme mom's have to say. If you all trust Fallon, as I do, then I guess my son does not have Lyme. Right? Pandas does seem to make the most sense. My younger son got Pandas and because we knew what it was he was treated right away and got better quick. My older son has had it much longer. It will take longer to get rid of. I will wait to see where he is in December. That is his next doctors appointment. I will see how much better he is doing with the PANDAS treatment.

Okay Lyme people, tell me what you would do. My son was tested for Lyme and other tic borne illnesses by Dr. Brian Fallon. He said that he was negative on all of them. In your opinion, does this mean I can stop worrying about it? Because when you post about Lyme on the PANDAS forum, it causes me distress...and I worry. So either tell me to stop worrying about or tell me what to do.

DC Mom I think that you ask some very interesting questions. The Lyme post give me pause as well. Do you know why? Because they induce panic. I was on the Lyme forum the other day and I read Ann Corson's article about the symptoms of Lyme. The symptoms of Lyme seem to be everything under the sun. If your big toe hurts, you probably have Lyme. (This, of course, is an exaggeration). This is no way is meant to diminish the importance of getting your child tested for Lyme. As I mentioned in previous posts, when my child was 5 years old, he became sick overnight. It was drastic and alarming. No one knew what happened, yadda yadda yadda, we had him tested for Lyme. Three times as a matter of fact. We took him to an international known Lyme expert who didn't want to wait for the Lyme results because my son's situation was so serious. (And he was right to do this!) He was on IV antibiotics for 5 weeks. He did not have Lyme. Another doctor in this department said that she had seen an older child become completely autistic and then completely cured with IV antibiotics. That child tested positive for Lyme. (That child was cured quickly. It did not take months or years). I question the chance of getting PANDAS, Lyme, mycoplasma and a host of other co-existing infections in one shot. That is like getting struck by lightening 10 times over. What are the chances? How can one have a healthy child one day and the next day have a slew of co-infections causing the disorder. It just doesn't make sense to me. We are all struggling to get our children well. In most cases we are desperate. Why does no one question the labs that test our children? If five labs say negative and one says positive - does that mean Lyme? Or does that mean false positive? Or does that mean the lab tech doing the test got a cup of coffee, got distracted,made a mistake. Please don't yell at me for these statements. These are just my logical thoughts. I also question Lyme doctors who put children on a lengthy list of medicines. I read some of the lists of what medicines children were taken and my God it seems so overwhelming I would have a nervous breakdown having to maintain that schedule of medicines. Such little bodies getting so many medicines both herbal and pharmaceutical. For me, my system gets out of whack taking just one antibiotic. I took a fish oil a few months ago for a week and it made me feel so sick all day. It just seems like so much medicine. I can't wrap my head around giving that much medicine to a developing and growing little person. Again, not that my thought are the right thoughts - these are just MY thoughts. Again, back to panic. What can be more frightening to have a disease that hides? It gives everyone pause. What if it is hiding and I need to give my child 10 plus medicines a day? I say go ahead. Get you child tested at another lab. You WILL find a doctor that will tell you your child will test positive for some tic borne illness if you look hard enough. Treat the child but if the child isn't drastically better in 6 months, I would be hard pressed to believe that it is Lyme. It is not that easy for parents with kids with PANDAS. You will be hard pressed to find a doctor that thinks your child has PANDAS. Let's be nice here folks. My words are not meant to be angry. I'm just a parent trying to make sense of all the information I get on this site and combine it with the information I get from doctors.

Remember when your kids were little and they started to hit their developmental milestones? Think about what happened. Maybe they started to creep or crawl and then didn't for a few days. Maybe they slept through the night for the first time and then they woke up for the next week in the middle of the night. I always considered it "glimpses of things to come." Good things were coming my way. It is hard to be patient when you want your child to be better now. We want to quickly change their antibiotics and switch things up. Be patient. Your child only had his ivig 7-8 weeks ago. You saw some glimpses of things to come. Your child's brain is healing. It is not a little bo-bo that you cover with a band-aid and it is all better in a week. Ride out the storm for a bit and see where it takes you. Relax and surrender...at least until your next doctor's appointment.

I agree that your red flag should be raised but don't panic just yet. Your pediatrician has a life too. Maybe she is out of town. Maybe she is having her own family crisis. Find out the facts first. Have a talk with her and find out what is going on and where she stands. Good luck!

I just ordered some from Medical Disposables Corp. They are based in Florida. I was very disappointed when it arrived and had a big stamp on the front of the kit, "MADE IN CHINA". I don't trust things made in China.