Dedee

It worked wonderful for my daughter. We never had any problems with it at all. Dedee

Another thing you need to remember is the amount of time your son is on the antibiotics. He should be on a high dose antibiotic for at least one month. Since you say you were supposed to test for Myco p, I would hope to see him on something that would cover Mycoplasma. Augmentin is very good coverage for strep but by itself does not cover Mycoplasma. So if you are dealing with Mycoplasma you would want to look at something like Biaxin, or Zithromax. I would highly suggest following through with the Myco titers. Many PANS symptoms are linked to Mycoplasma. Once you know what the infectious trigger is you can get an appropriate game plan. Many PANS children end up on a combination of antibiotics so that may be something you consider. You need to see a specialist ASAP but in the meantime high dose antibiotics on a continuous basis are a must. Dedee

You need to ignore the statements of those who are ignorant of PANS and its presentation. Unless they have lived through it then their opinion is useless in this situation. I have 3 PANS children, and I have had doctor's, teachers, family and friends try to tell me that it had nothing to do with any sort of infection. Wrong! They did not see my child get better within 48 hours of starting an antibiotic or see them deteriorate within 3 days of stopping an antibiotic. In my house we call antibiotics "antipsychiotics" because that is how they work for my kids. You need to see a PANS specialist. You will get validation that what you know in your gut is correct and you will get your child on a treatment path toward healing. You may have to travel...most of us do, but it is worth it to get the right treatment for your child. Read as much as you can on PANS and be armed with information for those ignorant statements. You may want to get some articles for the teacher who obviously needs education. The pandasnetwork.org site has some great references. Best of luck. Keep fighting for your child. Dedee

I assume he is taking 500mg twice daily. He must be the size of an adult then. If so that is not an unheard of dosing. It is on the high side but Mycoplasma must be addressed aggressively and if he is only on one antibiotic then that sounds right. The worst thing you can do is attack Myco p with a weak dose....only makes it resistant. Hopefully you are seeing positive results. If you aren't seeing positive results on that dose after about one month then you should talk to your physician about switching or adding something to the mix. Best of luck. Dedee

One of my sons took Luvox once and it was a disaster. He did better on Zoloft at a low dose. I am not against SSRI's in general but his psychiatrist said she had many kids who reacted badly to Luvox. My daughter is not on SSRI's yet. I am still trying to treat her methylation issues. I have not ruled it out. I have given myself till summers end and if I don't see some major improvements, we will most likely try an SSRI. I am so tired of no liking who my daughter is and feeling guilty and crying over those feelings. Sorry.....bad week..... Dedee

The best person to help you get rid of Mycoplasma is an LLMD. It usually requires the right combonation of antibiotics. Dedee

We live in Northern Tennessee but our LLMD is near Indy so we are there every few months. I wasn't aware there was also a PANDAS doc in that area. Good to know..... Dedee

What frustrates me is what they are teaching in medical school. I have a nephew who is in medical school. At our last family gathering he told me he didn't think my daughter could have lyme because we live in the south and he had learned that it was practically impossible to get it anywhere but in the NE. I told him what he had learned was CRAP! Oops, I sort of let my frustration show in front of everyone. Oh well, won't be the first time if he keeps talking that nonsense. Dedee

Our best one was Minocycline / Cefdiner and now Zith / Rifampin. We are treating Lyme / Bart / Myco. It really depends on what you are treating. Dedee

For those of you who are using GABA, how much do you use? I have bought some but it will probably be a while before adding it because we are working on adding a couple of other things first. Also, on the issue of Magnesium....wanted you get some opinions. I had a practitioner tell me once that Magnesium binds and inactivates other supplements so I should make sure to give it away from antibiotics and other supplements. Has anyone else ever heard this? I have heard others say they give it with other meds just fine. I would love to know because I have a really hard time fitting it in with all the other things I am giving. If I could give it with regular supplements that would be great. It's hard to get my daughter to take all the things she needs to. She complains constantly. Appreciate any feedback. Dedee

Our family was at the breaking point. It was constant chaos and fighting between my husband and I on how to handle things. The only thing that brought sanity back to our lives was the CBT / ERP program at USF. They work with the child and the parents on how to handle the situations and get everyone on the same page. It is wonderful. This is such a difficult situation and almost impossible to figure out on your own. Most psychologist can't figure it out either. USF understands PANDAS and they totally get this whole situation. They get the OCD / Rages thing like no one else does. The fee is reasonable and there is a place to stay right next door that is very affordable. I suggest it to anyone who feels like things are falling apart. I am so sorry your family is suffering in this way. It is truly a horrible experience. Praying things improve for you all. Dedee

Keep in mind that an LLMD will consider an Indeterminate as a positive. Our LLMD says it's like a preganancy test, it has shown a line so it's positive...you can't be a little bit pregnant. Her words not mine. Anyway, the other thing you have to consider is that there are certain bands that are considered lyme specific: 18, 23-25,31,34,37,39,83,93. Looks like there are quite a few lyme specific bands that have reacted on the results you posted. If it were me, I would make an appointment with an LLMD. Dedee

I wouldn't count on your doctor being able to help you with it. I have gotten guidance from great people on this board (Thanks LLM!) and from lots and lots of research. Dr. Amy Yasko has a book that is a free online download. It is an Autism book but it discusses each SNP and how to treat them. Of course, you can order all the supplements from her site which she recommends. I didn't do that. I did get a few from her website but mostly I got the general idea from her book and from the NutriGenomics website and decided myself which supplements were the most important. There is no way I can afford all the supplements suggested. It's only been a couple of weeks for my daughter and we are starting to see some improvements. Nothing earth shattering, but still moving in the right direction. As with everything else that is involved with PANDAS / PANS, this is mostly up to you. Best of luck! Dedee

I have done the 23andme for all 3 of my children. What it did for us was to help us determine what supplements to use that were actually beneficial instead of guessing based on what had helped others. What helps one persons child is definitely not what will help my child. Many of the things I was giving my kids was completely wrong based on their profile. I knew my son had issues with moods, but now I know that some of the supplements I was giving him were actually working against him. So for us, we can put our money into the correct supplements instead of guessing. For $99, it was totally worth it. Dedee

I am a Cardiac nurse for 25 years and a PANS / lyme Mom. My opinion is that the worsening of his condition could be related to chronic infection. However, if he has structural defect in the valve that is severe he is going to need repair regardless of the cause. If this could be delayed for a while until you get the lyme cleared more that would be great, but if a cardiologist says it should be fixed then it isn't anything to fool around with. I am sure this is terrifying for you. I'm not trying to minimize any Mother's feelings when it comes to their children, but I am sure he would do just fine. He is young with strong heart muscle (never had a heart attack I presume), so his odds are very good for a optimal outcome. It does seem unfair that this poor child would be hit with so much during his short life. Sending positive thoughts and vibes your way. Dedee

You might consider re-checking his Myco titers. Many who have had myco and only gone through short term treatment will relapse. JMHO. Dedee

I just got results for my 3 children back over the past week. I have read and studied until my brain hurts. Amy Yasko's book is very helpful and it's a free download on the internet. Also, she has several free online video's that are both helpful and confusing at the same time. If you go to her forum (you have to become a member), there is tons of information there you can read also. I have found that watching her videos and reading the information there has helped me. Also, LLM has been a great resource. Dedee

Just to give you a little more feed back on the Topamax. I am sure it may affect everyone different, but as I said my son takes it and he is a straight A student. In fact he is in our schools program for gifted students. I don't think it slowed him down at all. Best of luck. Dedee

I noticed you said that someone offered you topamax. I would highly suggest that you try it. I have a friend whose son had terrible tics and their neurologist gave them topamax and not only did it help with tics but also helped some of the mood issues as well. My son takes topamax for migraines as do I. At higher doses it can have some side effects with difficulty finding your words, etc.. but for me that went away after a week or so. Also, it may affect the way soda taste but again that goes away with some time. Most of the weird side effects that you hear about are at high doses. My son is on a low dose and does wonderful. JMHO. Dedee

Do you know what her infectious trigger is? Are you treating strep, lyme, myco p? How long has she been on antibiotics? It does sound like she could benefit from CBT / ERP. It takes a trained professional to help your family institute that process. It isn't easy to get started but the results are amazing. If it is OCD that is starting her rages (and many times it is), she desperately need some coping skills to help her deal with those urges. There are a couple of really great programs, one is USF/ Rothman in Florida and another at the Cleveland Clinic in Rochester, Minn. Several families on this board have been through these programs with life changing results (including my family). It's worth considering. Dedee

We did the same...rented a condo on the beach at St. Pete. It was so relaxing and made sort of a vacation out of it. We also used VRBO. We are going back this summer for a one week "refresher". Since my daughters regular therapist is no longer there we will be seeing Dr. Rahman this time. We saw him for a couple of days before when dd other therapist was at a conference and I think he is wonderful. With the three of our children, we have been to Rothman several times but we have never stayed at RMH. I have always heard great things about it though. Dedee

My son cleared myco p much faster than my daughter. They added bovine colostrum to his therapy (my daughter refused to take it because it smelled funny). So I do believe that adding some supplements can speed up the process. Also, our LLMD said that she likes minocycline for Myco because it crosses the blood brain barrier. We used it with cefdiner. Dedee

I am suprised that with your son being so severe that your LLMD hasn't considered IV antibiotics. If his quality of life is affected to that extent then IV antibiotics should be an alternative. In my opinion, if your LLMD hasn't offered that then maybe you should bring it up as an option. JMHO. Dedee

Forgive my aging memory. I know there have been several posts and discussions about this before. I am thinking about doing the new test on my son that is new and supposed to be absolute. I know you have to be off antibiotics for like six weeks but he is off them right now. This is my oldest son who we believe is only a strep responder. He has never responded to treatment in the past for lyme. He does have what looks like the "bartonella rash", and has had for a while. I had our LLMD look at it and she thought it looked like it as well. So that was when we decided to treat him and just see if he responded (last year). Treated for 3 months and he said he felt no different one way or another so we stopped. Well a couple of months ago his dermatologist put him on minocyline for acne. All the sudden he starts feeling really bad. Tells me he is having bad headaches, and terrible brain fog, can't think straight, etc. So this is my son who NEVER complains about anything. Doesn't like to bring attention to himself. I told him it could be the antibiotic and maybe it would go away after a week or so. Well after about 3 or 4 days he tells me he just can't take it anymore, he feels so bad and just can hardly think to get through school. Really? I tried to talk to him about how maybe he really does have lyme or bartonella and this is a herx reaction etc. He was in total denial (his favorite coping skill), said nope that's not it. He thinks it's just a bad reaction to the medicine and he wants to stop taking it. Well he is 17 and I can't make him take it. What I do want to do though is test him in the most definitive way possible so that we can both know. I know it's an expensive test but we have met our deductible and I think our insurance will reimburse most of it. Truth is I'm not convinced either. His symptoms aren't clear cut. He is a very private person and a good kid over all. So can anyone help me out here? I really appreciate the testing guidance! Dedee

We are Myco P warriors also. Been fighting it for 2 years. I think we may be about to win this battle. What are the IgM titers? It will take a very long time to see IgG titers drop. We saw nothing on IgG for over a year either. What we saw first was a VERY gradual decline in IgM. The first year my daughter took Zith, then she took Biaxin. When we started seeing an LLMD, they put her on Minocycline and Cefdiner. She had a huge herx from that but her IgM titers really started to decline after that. We did that combo for about six months and then they wanted to switch her over to Septra & Amoxicillin. Ended up she couldn't tolerate Septra and we were never able to get her up to the optimal dose. We later found out she has a SNP that prevents her from metabolizing sulfa drugs. So currently dd is on Zith, Rifampin, amoxicillin. In January, her IgM titers were in the high normal range for the first time, but her IgG levels were still high. This was the first time though that her IgG levels ever read anything other than >5, so obviously we are headed in the right direction. So what you need to look for is trending in the IgM titers because that indicates the status of the current infection. You may need to consider a different antibiotic combo. How are her symptoms? Is she doing better? If you aren't seeing any difference in symptoms then I think you absolutely should think about different antibiotics. Best of luck. Dedee