Dedee

Just curious if you have done the 23andme? If so was your child positive for Hashimoto's? All of my chldren are +/- as am I. We have a strong family history. My brother and sisters are +/+ and both of my sisters already have it. Just wondering if that piece of it has anything to do with which kids end up getting this. Dedee

Yah! Happy Dance! Glad you had some happy family time! It's wonderful to see them doing "normal" kid stuff isn't it? So happy for you.... Dedee

Your physician is afraid because he / she is not PANDAS / PANS literate. If he was educated on proper treatment he would understand that your daughters brain is under attack and not hesitate to do what ever is necessary to protect it from further insult. The rages may or may not be caused by the antibiotic. It could be the course of PANDAS playing out or a herx, which is the release of toxins as the bacteria die off. You need to continue antibiotics and treat in the event of a herx. Do a search on this forum for herx and you will find some good remedies. Make sure your daughter is getting plenty of fluids to flush any toxins. If things don't settle down after a week or two you may consider trying a different antibiotic. You are right to assume that 10 days is not enough. If your physician is not helping, find someone who will. You are going to need a PANDAS / PANS specialist. Go ahead and make an appointment. You can find some names on the pandasnetwork.org page. This is not something you will be able to manage without an educated physician. As a general rule, things get worse with each infection untill you can get a manageable plan. Best of luck. Dedee

I am sure your husband has the best of intentions. However, he should educate himself before taking such a definitive stand. This is your childs brain we are talking about. If this is PANS, we are talking about an attack on her brain. So really??? He wants to worry about giving antibiotics? I have been a nurse for 27 years and I have 3 kids with PANDAS / PANS. He needs to look at the risk he is taking with his childs brain by NOT giving the antibiotics. Physicians do a great job of trying to scare people about antibiotics but will give you a two year script in a minute for acne. I have a son who went without treatment of his PANDAS for years. I would give anything if we could have changed that. The quicker you treat, the better the response. I encourage both of you to read as much as you can and see a specialist ASAP. Dedee

The other thing to consider is that you have only tried two different antibiotics. Others you should consider would be Zithromax, Biaxin, or Clindomycin. Also make sure that your daughter is at a high dose especially post T&A. The bacteria is released during surgery and she needs to be on a high dose for a while to settle things down. If none of these things work you should make sure she is tested for other infectious triggers. Dr. L is a very good doctor. I am sure she will help you with these things. Dedee

I am sorry that you have gotten this horrible diagnosis. It is indeed a difficult road to follow. However, you now know what you are dealing with and armed with knowledge for the battle. In some ways you are very lucky. You have a positive lyme test along with difinitive symptoms. I'm a little concerned about your physician's plan for lyme treatment. Do some reading on lyme treatment as you have on PANDAS. Most literature will tell you that it takes combo antibiotics for months to possibly years to truly treat lyme. The other thing to consider is co-infections. Most who are infected with lyme also carry co-infections. They may not necessarily test positive, because as you know, these test frequently have a false negative. I think the best thing you can do at this point is find a good LLMD. Few regular doctors (even PANDAS specialist), truly know how to treat lyme & co-infections. I'm sure others will chime in with some good advice. It may be helpful to go back and read some of the archives on lyme topics. Keep us posted on your progress. Dedee

I would suggest that you educate yourself as much as possible about PANDAS / PANS and not rely on any physician to tell you what is wrong with your child. There are precious few physicians out there who truly understand it. Many may profess they do, but they are mistaken. Thankfully, there are more PANDAS / PANS specialist now than when we first started dealing with this with my oldest son 12 years ago. I recommend you find a specialist and make an appointment right away. Most likely you will have to travel and there will probably be a wait, so go ahead and make your appointment now. You can get lots of great information on the pandasnetwork.org website along with some physician recommendations. This forum is a great place to come for information. You can also do searches for information. There is no reason for your child to suffer. If there are already signs of OCD and anxiety along with the tics, I would be concerned. This probably will not resolve completly without assistance. You may see intermittent lessening of symtpoms, but eventually this will rear it's ugly head and you will wish you had jumped on it while it was manageable. I'm not trying to scare you but rather give you the wisdom of many who have been there, and done that. Please keep us posted on your progress. Best of luck. Dedee

I take Topamax for migraines as does my 14 y.o. son. I have not heard of it causing headaches. It has been wonderful for us. Did you start anything else at the same time? Maybe you should contact the physician who prescribed it. Dedee

I don't have an answer to your question. Just want you to know I struggle with the same question. My daughter has been on antibiotics for over two years now and I don't feel like we are near close to beating Lyme. She is much better than when we started but not close to where she should be. I worry about this often, but I also have the realization of life without antibiotics. My oldest son took antibiotics for 5 years for PANDAS (not for lyme). He is now 17 and doing very well off of antibiotics. I try to keep that in mind. It's hard not to be concerned. Lyme is a very hard road. The hardest I have ever been down....... Dedee

Those of you in the know about that area, would it be reasonable then for me to fly into Newark and then take the Amtrak? This looks like a much cheaper flight option. Please understand though that I can get lost in my own house . So I need a plan that is easy to understand. I appreciate suggestions. I can only do this if it is very economical (and I REEEEEEALLY want to). Dedee

I run clorox through my dishwasher about once a week. Just makes me feel better. Dedee

We had this with my daughter after her first IVIG. She did really well right after the first IVIG then deteriorated a few months later after an illness. So I will give my advice based only on my experience. If you aren't currently giving a treatment dose of antibiotics then increase the dose of antibiotics immediately. I understand he didn't show positive, but Dr. Murphy told us that just the exposure will set off the same cascade of events in the body as actually having the infection. You may even consider changing the antibiotic. Also, if it has been 3 months post IVIG you can consider a steriod burst. If it hasn't been 3 months, your physician may be cautious about steriods due to their impact on the immune system. If less than 3 months be aggressive with ibuprofen three times a day. Give the highest dose allowed by body weight. Do this for at least 2 weeks. Steriods are preferred if allowed. On the topic of his bipolar diagnosis.....I'm sure you have considered the fact that this could be a mis-diagnosis and simply symptoms of his PANS flare. I know that there have been several times that my daughter could have met the criteria for a bipolar diagnosis. This was the case during her worst PANS flare and when things calm down those symptoms disappear. It was specifically the reason we stayed away from psychiatry in the early days. I wanted to focus on the cause instead of the symptoms. I'm sure you know your son best. Just throwing that out there. I am so sorry you are going through this. Sounds very difficult to handle. Hopefully things will settle down soon. Stay determined in addressing it. Sounds like you are on top of things. Best of luck. Dedee

My oldest son was diagnosed at age 6. When he was 11 he had a T & A and finally went on continuous antibiotics. This was when we saw the most improvement of his symptoms. From the time he was 11-16 there was very little PANDAS activity. Mostly just occasional moodiness and some mild depression during the teenage years. So at age 16 we weaned him off of antibiotics. He is now 17 (almost 18) and still doing well. He is a straight A student, planning on going to college. He still has some moodiness but over all he does well. I'm not sure if I would call him completely recovered. The reason I say this is only because I suspect that he struggles with his moods more than the average child. I say that " I suspect" only because he doesn't talk to me much about his feelings. I try to ask him but he always denies it. This coming from too many years as a PANDAS child talking about OCD and Anxiety feelings I suspect. However, all things considered.....meaning all the things he has been through, he is doing very well and is over all a great kid. If a physician evaluated him I'm sure they would think he was perfectly normal. Most Mother's think I am so lucky to have such a nice son who never gets in trouble and does so well in school. Of course, they have no idea how far we have come. I hope that your son has a smooth road ahead. I think it's important to stay on your toes with a plan in case of a flair. I believe for us the T&A and the continuous antibiotics played a huge part in keeping my son well. I know some parents are concerned about too many antibiotics but for my oldest it was absolutely what turned him around. It sounds like what ever you are doing is working so keep up the good work. Best of luck. Dedee

Yes, plenty long enough. By now I would be thinking it is an intolerance to the antibiotic. You need to try a different antibiotics. No need to keep beating your head against this same wall.

I want to go SOOOOOOO BAD but I don't think I can afford the plane ticket. To far away to drive...... Dedee

Yes, he stayed well pretty much since then. He was mainly a strep responder and did not have any more major flairs after that. There were occasional times of moodiness and some minor depression during the teens but the big OCD and tics never came back. Again, he stayed on antibiotics for several years after the T&A and we weaned him off when he was 16. Guess it would be hard to say whether it was the antibiotics or the T&A the worked. I think it was the combination. I am sure you will see lasting results as well. Dedee

So glad to hear the good news. We had pretty much the same results with my first son six years ago after his T & A. He is now 17 (almost 18), and off all antibiotics and doing well. He will be going to college on an academic scholarship next year. He has some mild OCD issues with food that have stuck from his younger years but over all he is doing well. I would recommend continuing the oral antibiotics for a few more years and then weaning them if all continues well. Again, congrats. Dedee

I am so sorry you had this experience. What a waste of time and energy. Glad to see you aren't letting it discourage you. That kind of ego isn't worth a second thought. I agree with you.....move on. There is help out there. Good for you that you aren't letting this stop you or slow you down. What a great Mom! Dedee

I agree with rowingmom, you should find a good LLMD. It is good that your doctor tested for lyme but it doesn't sound like he is up to date on treatement. Lyme is usually treated with a minimum of two antibiotics. Using only one is like swatting an elephant with a fly swatter. There is a lot of good information out there on lyme. Arm yourself with knowledge and find a good LLMD. Dedee

My daughter always complains of headaches.

I do not use his total protocol. I do use some of the things he suggests but I can't get all of what he suggest into my daughter in a day. My LLMD wanted us to try Japanese Knotweed but my daughter lost her taste with it. We switched to cordyceps which she tolerates better. We do use some of the other supplements he suggests but we are also still on traditional antibiotics as well. I wish I could get the courage to go all natural but I haven't been able to go that direction as of yet. My daughter's moods still fluctuate easily and she will flair with any change in antibiotic or any minor illness. I love his new book as well and recommend it to anyone with lyme or co infections. Dedee

pr40 - Sorry I am just now getting back to you. We give one or two capsules each night depending on how he is doing at the time. My son is 14 and adult size. I would start with one capsule and see how he does. Two capsules is not excessive. I have taken two before and not felt overly sedated or sleepy the next morning. Dedee

My son has it as well. We use Kavinace. It's an Amino Acid that our LLMD recommended for sleep and anxiety. It really helps him. Dedee

I have been using a Moly supplement capsule that I get from Amazon that is 30mcg. I can't think of the brand right off hand and I can't access Amazon from the computer I am on. It is easier to use and keep the dose in line but now I worry about whether it is the right kind. Hmmm..... Dedee

Uggg......after posting this yesterday, wouldn't you know it we had a terrible night with my daughter last night. As I said we are tapering the steriod and are down to 2.5mg. She had a major meltdown last night complete with rage / violence, the whole nine yards. Haven't seen that in several weeks. I have had it. She just wears me out. Just when I think she is getting better.....WHAM, here we go again. Some days I don't know how much I can take...... Dedee