PhillyPA

Well, I have taken doxy for an extended period of time in the past. I can tell you that that is the harshest drug I have ever taken. Horrible stomach pains and nausea that did not go away the entire time I was taking it (about three months). I will never take it again. If the drug you are giving is in the same family - it was a nightmare.

My child's lyme doctor did a study on Igenex labs. He said that they are no better and no worse than other labs but that the lab does produce false positives on the IGM western blot. I asked him this question about ivig and lyme testing and he said that is a very good question. He said that at this point they are not sure how ivig effects lyme testing.

Have you tried blasting their immune system with multiple ivig's? Getting ivig's every 6 weeks for 6 months? This is an immune system disorder. You have seen relief in the past with immune system disorder treatments. What are the chances that both of your girls got Lyme disease at the same time. Is the D.C. area known to be a Lyme endemic area? I had a conversation with my son's Lyme doctor about two weeks ago. He is one of the top Lyme experts in the country. He said that he has done a study on Igenex Labs and that they are no better and no worse than other labs. He did say that Igenex labs do have false positives on the IGM Western blot. He does not use this lab. If you question the Lyme diagnosis, try sending their blood work to a few different labs and see what comes up. It is very hard to use your logic and your intuition when it comes to deciding what to do to help your child heal - expecially when desperation sets in. Try to think logically, sit quietly and then let your intuition take over. Sit with your questions and see how he makes your body feel. Your intuition will be a great guide to give you the answers that you need. Is Lyme genetic - no. Is pandas genetic - yes. Would your daughters symptoms pop out at the same time (with the first episode) because of the same infection (strep)? One of my biggest regrets was wasting so much time on the lyme diagnosis. The treatment is different. As per my child's lyme doctor - augmentin works well for both lyme and pandas. Azith is not at all good as a Lyme disease drug. Steroids work very well for pandas. You are avoiding them because of the possibility of Lyme. Lyme disease paranoia may be taking you down the wrong path. Send your child's blood work to several different labs to check for Lyme before going down this path. Again, I am only telling you what I have learned from my experience. I understand that you want your child healed now. You just want to make sure that you are on the right path. Think about it - neurological Lyme effecting your children at the exact same time? Does that sit right with you? You are in New Jersey now. If you want the name and number of my child's Lyme doctor, one the best in the world, pm me.

The guilt I feel is overwhelming. I feel it is my fault. I feel responsible for not figuring out and researching pandas sooner. There are many other parents who figured it out within the first year of symptoms and I wasn't one of them. I researched everything else. I just believed the doctors when they said "Well, it looks like pandas but his titers are low." I am so angry at myself. It was my job to protect him and I failed. I am angry at myself for pursing Lyme so hard in the beginning. My son could have been put in remission so easily in the beginning. Now he may have to suffer for the rest of his life. Why no doctor asked for his medical history is beyond me. Why no one looked at all of the strep in the household? My guilt tortures me. Every time I look at him suffer I think to myself that this is my fault. I have had many people tell me that my way of thinking is faulty. The doctors are the ones who should have figured it out. I understand this on a rational level. But the voice in my head continues.

Beautiful, beautiful voice!

I am sending you a pm.

Whenever my son use to get a pandas flare,his eyes would get bloodshot red. I always wondered about this. This does not happen anymore since he has been on an antibiotic. The theory at the time was that it was possibly a migraine headache causing the bloodshot eyes. I don't know about that but he would curl up in a ball and seemed to be in pain. He would also during this time have no control over his bladder.

We have taken my son to see five different neurologists. They were very very thorough. My son got all the brain scans and tests and by the time he got to Dr. L she didn't need to order anymore tests. She just looked at the results that we had. (All normal).

I have two boys with pandas. Highly recommend the steroids taper. We did 30 days. One son totally put in remission with antibiotics and steroid taper. My other son greatly improves on steroids.

I agree with peglem. However, if you get autism in infancy, doctors will say it is "autism". You get autism when you are 5,8,10,or 15 - they are going to tell you that it is something else.

My son was perfectly normal until the age of five years old. He got pandas and looks autistic. Before we got a diagnosis of pandas, we went to so many specialist. They all said that what he has may look like autism but it is not autism. Five year olds do not get autism.

My son just had his fourth ivig. I can tell you this - after each one he loses something and it is gone. This fourth one seems to be his absolute best. The tics and OCD are just gone after one week. Not all of his OCD but most of it. It is greatly, greatly softened. The question I have is will it hold and will he continue to improve? He lost his language at age 5. Today, one week after his ivig, I had a small conversation with him. The not talking is OCD. Will it hold, will it hold - I do not know. I have a pretty good feeling. I have a really good feeling... From my perspective, the OCD in pandas can go away with the snap of the fingers. No therapy, no nothing. Just ivig and antibiotics. Maybe not for everyone - but it is definetely possible - I have seen it. And - my son is a long term case. He is 8(almost 9) years old and went 2.9 years without treatment.

This seems like pandas to me. I would put him on an antibiotic. My son's pandas doctor is a neurologist in Maryland. You can pm me for the name. Today it is recommended that a child with pandas stays on an antibiotic until he/she reaches their mid twenties. Steroids can help greatly too.

Tenacity - you rock! I am with you 110%.

pandas16 - You mention that you had pandas for three years before diagnosis - how old were you when you were diagnosed? What treatment did you receive? How long did it take you to get better?

We just finished our 4th ivig yesterday and we are starting him on a three week steroid taper. I am curious to see how this will work. We never did steroids after an ivig before. I think it is a fantastic idea. Especially since my son did really really well on steroids last year.

My son has lasting improvement with each of his ivig's. His first one was in May, second in July, and third in August. He is at this moment, getting his fourth ivig. Lasting improvement has held after each one. However, he was very sick for a long time before a diagnosis (2.9 months). He didn't receive ivig until three years after the start of his sickness (pandas). I feel that that his a long time to be sick without treatment and it will take a long time to get better. I would not be doing a 4th ivig if his improvement wasn't noticeable afterwards. As a matter of fact, his doctor has order a high dose ivig every 6 weeks for 6 months to blast his immune system. Things may get worse after the ivig but you will get glimpses of good things to come.

If it is pneumonia you will see your child having high fevers and soaking night sweats. There may or may not be a cough. You may also see vomiting. My son had bacterial pneumonia in November. Usually, they treat bacterial pneumonia with azithromax. My son was on Augmentin when he got the pneumonia. My pediatrician gave me a little remark "See, this is what happens when on long term antibiotics. Antibiotic resistant pneumonia." I didn't say anything back but augmentin would not kill the pneumonia anyway. Pneumonia is treated with azith.

In my experimentation with azith I have found that if the dose is to high - rages will occur. If the dose is lower, I see lots of benefits and no rages. My "study" is new so I am not sure of the final outcome. So far, I am please with azith on a lower dose. He has only been on it for a week. Last time I had him on it was in November/December for three weeks. For example, 400mg per day for my 79lb 8 year old, we saw rages. 200mg per day and we see bliss. Usually he is on Augmentin. However, I feel that we need to switch things up a bit. I want to see where azith can take us.

We have taken a taxi to Latimer's office from several of the hotel's in the D.C. area. It is very easy to do. I have never heard of her giving Biaxin. She is pretty much an augmentin gal. I can't remember exactly but initial consultation/first visit is close to $500. I love Dr. Latimer.

I can't believe that you actually tested negative! That is so strep! Awesome picture! Thank you. What is the reason why the negative throat culture? Does anyone know why kids are not testing positive when they obviously have strep?

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My son was on a month long tapered steroid. The first week was rough at night. He would get a little crazy, but he was fine during the day. After the first 7 days, the craziness stopped and he just improved so much. For us the steroids were wonderful. The benefits did not hold. My other son got pandas too and was put on steroids immediately. He had no side effects and it pulled him out of his pandas episode. The benefits held and put him in remission. Perhaps dosage is also key. I would imagine that the higher the dose of steroids the more chance for adverse effects.

Those finger movements are chorea, a symptom of pandas. Get to a pandas specialist. My son got sick at age 6 last summer. He had similar symptoms but he was also spitting out all of his food because he thought he was going to choke. He was back to himself after being put on augmentin and a month long steroid taper. I would move very quickly.

I have had this exact same symptom-soapy, metallic taste in my mouth. That is the only symptom of reflux that I get. Like you, when I lie down I am fine, etc. The soapy taste is a sour stomach. Google it. Soapy taste in mouth. It goes away with reflux medicine. Good luck.