Dedee

Airbucket, I just wanted to reply quickly to a couple of things. One is congrats on getting your son off Abilify. Our peditrician initially put my son on Abilify when his tics began so violently. He stayed on it for about one month before I decided absolutely not. He was such a zombie he could barely stay awake through school. I stoped it and never looked back. Best thing I ever did. Second, you mentioned Dr. Murphy and I just wanted to let you know that we were so very happy that we sought her out at the Shands clinic in Gainsville. We had to travel from Tennessee but it was totally worth the trip. We were unable to find any help in our area for our sons PANDAS. Our peditrician was only willing to do what was recomended by a specialist. My sons symptoms are only relieved while on antibiotics. When we take him, off all tics, OCD, and anxiety symptoms immediately return. Dr. Murphy was like a God send to our family. She seemed to know him like a book. She recommended vitamins, supplements, and antibiotics. Although she did not give us the prescription for antibiotics (because we live out of state), she wrote a recommendation for plan of care and sent it to our pediatrician. That was enough for our doctor, and she has been treating our son accordingly. If we have any real issues in the future we can do a phone consult, or if it is a real big problem we will just take a couple days off work and take another road trip. It was so worth it. We had already wasted so much time and money on other neurologist and ID doctors who just blew us off and either didn't want to do anything or just wanted to medicate him to zombie land. Just wanted to let you know that we had a positive experience in case you decide to go that route. Good luck. Dedee

Emma, The dose we give is 250mg twice daily and it is a capsule. However, when he had strep he took Augmentin for two weeks then switched to the amoxcillin. I am not sure if there are other ways to package amoxicillin, obviously there is. May be that you doctor wants the higher dose till the symptoms settle down then decrease the dose. Carolyn, I do seem to have a vague memory of hearing someone else talking about that type of treament for intestinal strept. Many PANDAS patients will carry strept in the anal cavity and that is why it is often missed on diagnosis because doctors are only doing a throat swab and the child continues to have behavior problems because the strept is in the system and not treated. There are some medications, and I can not remember off the top of my head what they are, that can not be given with grapefruit juice and extracts. It is great to have other alternatives for our children. Thanks for reminding us of this. Dedee

Emma, I am so glad that Chemar responded to explain about the Omega 6 issue. Chemar, someone in a recent post was asking about that and I really could not give an educated answer on why PANDAS patients should avoid the Omega 6's, except for the dietary imbalance but I knew there was a inflammatory issue as well. Maybe sometime when you have more time you could post the full explanation on that. I know it was very informative / helpful to me in one of your long ago posts when you went through it all. Emma, In regards to the antibiotics, Dr. Murphy wanted my son to stay on Amoxicillin as long as he could while it was working so well for him and save some of the stronger antibiotics in case we need them later. I really agree. As long as he is doing well, I will hold out till we need the others. Now, if he were still struggling while on antibiotics, I would be insisting on something different. She said they build up less resistance to the Amoxicillin than to anything else. Sort of a don't rock the boat while it's sailing smoothly kind of thing. She did say that the EPA and DHA from the fish oil would help the injured area of the brain heal and assist in stabilizing some of the mood issues, etc. Although his moods are pretty stable while on antibiotics, I understand the concept and feel I should do everything I can to correct any damage done by the antibodies. That's just my personal experience. Everybody has different experiences with different results. Let me know how things go. Dedee

Emma, I am so sorry to hear that your daughter started to have symptoms again. You have reason to be bummed. I know what you mean about all the rest of the stuff. I do believe it probably makes a difference, but for us the huge thing was the antibiotics. I have such great respect for the mothers who go to such lengths to clean up the diet and enviornment. We have done alot of enviornmental factors due to the asthma of my middle son, but I must admit that I was hit with such resistance from my son with PANDAS when I attempted to change his diet that I backed off. His OCD was so strong at the time and he would only eat under certain situations and only certain foods and I just didn't have the energy to address that issue at the time. I know I am weak, but we pick out battles and I was so down trodden at the time, I couldn't face it. Well, now he is so much better that I haven't really needed to. It isn't like he doesn't eat anything decent. Only that he still drinks alot of milk and does have some sugar, that sort of thing. Again, I don't have the answer. I just know you have to do what works for your family. I just stand in awe of those who do the total diet change and get those great results. Really amazing. Anyway, what my son takes is the following: Amoxicillin 250mg twice daily, multivitamin, cal / mag twice daily (drinks alot of milk), probiotic 30billion multi strains once daily, fish oil 1,000mg 2 in morning & 2 at night. Sometimes I add a epsom salt bath if he starts having flare ups or I may increase his cal/mag if I notice more tics. Also, I always buy the milk with acidophilus (sp?) to aid in probiotic cultures because he often forgets his probiotics since it is given seperate from the other meds. By the way, I have taken my son off of antibiotics three times and his symptoms came back within 48 hours. No kidding, you could set your calendar by it. Then within 24 hours of starting them back he would start to get better and by the second day they would be mostly gone. I just want to say to anyone who doesn't believe in PANDAS to please come live in my house. It is the most amazing thing you have ever seen (and I'm a nurse). Never in your life would you be able to convince most neurologist that an antibiotic could stop severe OCD and Tics. At least not the ones we saw. Oh well, I'll get off my soap box now. All I can say is thank God for Dr. Murphy. Hope things get better for your daughter. Keep us updated on her progress. Keep the hope! Dedee

I will try to add the link to an article that explains only one of the reasons for not having 6's. Just remember that every situation is different and you need to go by what your physician tells you for your child. Each child has different symptoms and underlying causes. Literature Review of Essential Fatty Acids Dedee

There are two reasons that Omega 6's should not be given for PANDAS children. Dr. Murphys told us that with our son to avoid supplemental omega 6's. One reason is that there is a disproportion of 3's to 6's in the average american diet and this disproportion is part of the problem with the imbalance. We need more Omega three's. The article that I have posted here several times refers to this and explains it better than I can. The other issue is the auto immune issue that PANDAS children have. Now Chemar can explain this best. But basically to much omega 6's can stimulate an inflammatory response which of course is what we need to avoid with auto immune issues. I believe this is correct. Maybe Chemar will read and give a better description. It is explained in one of her posts long way back. I just know that when we went to Shands and were discussing the whole Fish Oil issue, she told us specifically to avoid any additional 6's for my son. It is probably different for children who have tics for reasons other than PANDAS. Sorry don't mean to confuse anyone. Dedee

First off let me start off by giving you a big ((((((((Hug))))))))). I can only imagine how scared you must be. I am sure I would be in your shoes. It is crazy that they did not start your son on antibiotics while waiting on his culture. I am assuming they didn't do a rapid strep test. I am sure you know logically that this is nothing you can control and that no amount of worring in the world will change the outcome. You do not know for sure that your second son will experience tics or not, but if he does you are a different mother this time around. This time you are armed with knowledge and experience and you will be prepared to deal with whatever arises with confidence. Just like when you became a mother for the second time, everything will be a little easier (because of your previous experiences as a mother) even though it isn't exactly what you expected. Whatever happens, I know you will be a great mother to all your children. Take deep breaths and long baths. Keep us updated. Keeping you in my thoughts. Dedee

Also, just to clarify on the Omega's, it is the Omega 3's that you need to add. PANDAS children especially need to avoid any additional omega 6 supplementation. Dedee

bmom, Alot of people have "tactile issues", but do not go on to have OCD or tics. I have three kids who all were very "tactile aware". I had to cut out every tag in every piece of clothing. Line up sock lines, buy only certain types of clothing, you name it. So when my oldest was diagnosed with OCD at age 5, I just knew I was doomed for an entire life of this. However, he is the only one with true full blown OCD and tics. My middle son does show some tendencies, but is able to overcome or be reasoned with. My sister is an adult and was always the same way with her clothing. My pediatrician says alot of children are that way. It is a type of sensitivity disorder and with some it is also in the way things feel in their mouth when they eat. The good news is that this is not life altering, it just makes life hard on Mom's. Just try to relax and not make a big deal of it. The more aware they are of it, the more they think about it and so on. Just buy a good pair of scissors. Dedee

Emma, What Dr. Murphy told us regarding our son and antibiotics was that we should leave him on them long term since he had shown us in several instances recently that when he was off that his symptoms came back full force. Now, she knows that PANDAS children show an increase in symptoms during adolescence and puberty and then the illness begins to subside in the late teens, early twenties. So her suggestion was that every year or two you could just do a trial of stopping the antibiotics and see how he does. If symptoms come back to the point that they interfere with his life style, then start him back. However, if symptoms are mild and do not seem to be bothersome, then the child does not need to be on the antibiotics. If my child did not have symptoms off of antibiotics, I would not give them. That is a clear case of the risks do not out weigh the benefit of long term antibiotic therapy. Yes I do understand what you are saying about prevention. What we did in regards to prevention was a tonsilectomy. I know that is extreme, but so is antibiotics for years on end. Problem was after the tonsilectomy he still had tics after we stopped the antibiotics. Just my two cents worth, but I would watch closely while off of antibiotics and if you start seeing any re-occurance of symptoms, or your child start to become re-infected frequently, then that may give you the answer you are looking for. I think it may be unrealistic to expect them to be completely symptom free. I feel that my son is really doing great, but even on his best days I can still notice a few head tics. The thing is, no one else would ever know what they were and it doesn't bother him a bit. So if he is happy, then Mom is happy. BTW, in regards to titers, I am not really sure what ours are now, but they have been extremely high as much as 8 months after his last strep infection. So I would go more by symptoms than by titers. I have read other posts here that said their children have had high titers for years. Good luck with your decisions. Sounds like your getting good results. That's encouraging. Dedee

Thanks Chemar for the book suggestion. My son tried Luvox once before he took Celexa and it actually made him much worse. Wasn't long before we were right back in the psychiatrist office and she immediately switched him to Celexa. It made a world of difference for him. At that time there was no other choice, he simply could not function in school or socially. However, now that we know that there is help for PANDAS patients and that he is doing so well, I would like to try other alternatives. I am grateful for the help our psychiatrist gave us but at the same time I wish that she would have offered other avenues as well. Well, we are where we are now by the grace of God and I know we will keep moving forward with the knowledge we have acquired from so many wonderful people. Thanks for your help. Dedee

Chemar, I noticed your statement about the doctor that helped wean your son off of some harmful drugs. Can you tell me if any of those drugs were an SSRI? I am currently trying to take my son off of Celexa. He has been on SSRI's for many years and since I am a nurse I am aware of the dangers of moving to quickly with this. We have decreased his dose twice over the past year by only adding the antibiotic therapy, calcium/mag, fish oil, and a multi-vitamin. He also takes a pro-biotic. He is currently on a very low dose and I think the next step would be to stop it all together, but I am so scared to do this. I took the same medication at one time and believe me it was no fun time when I weaned off it. I can't stand the thought of my child going through that. Right now he is doing better than he ever has been. He is great in school, has good friends, stable moods, etc.. This has all come about since taking out his tonsils and starting the antibiotics. I am just so worried that if I stop the medication I might mess everything up, but I really hate for him to be on this if he doesn't need it. I would love for him to be off all prescription meds. Do you have any suggestions??? Thanks so much. Dedee

Kim, you are absolutely right in regards to TS. When I suggested to my husband that our son might have TS after his tics began so violenty, he was so mad at me for even bringing that up. He hated the thought of our child being labeled that way, and kept reminding me that his was caused by strep. Since I am a nurse, I tried to explain to him that a syndrome is nothing more than a collection of symptoms, regardless of the cause. Well imagine his relief when the neurologist told us he did not meet the criteria for TS. I said who cares what it's called, he has tics and we have to deal with it. But you bring up such a good point in that so many kids that have tics, do so for so many different reasons and will respond to many different interventions, yet can still be lumped into the same category. Very good observation. Keep up the good work. Dedee

Yes, I am looking for a good multi also. I also hate to give four a day. My kids take so many supplements anyway, it would be good if I could just give them only one multi-vitamin. Any input would be great. Thanks. Dedee

Dylan's Mom, I can not give you advice on what to do. I think that OT is your best bet. We did consider private OT at one time when our son's handwriting was at it's worse because we couldn't get the school system to work fast enough. Then things started to get a little better and we held off. The doctor told us that alot of PANDAS kids have trouble with fine motor skills. Looking back, my son always struggled with those type issues. He always hated to color in pre-school. He was always so smart, but I didn't think the kid would ever tie his shoes. Honestly, he is almost 12 years old now and he still begs me to buy him slip in shoes. Not that he can't tie them now, but he just hates it and can never get them tight enough. His handwriting is still pretty awful, and his Dad is on him constantly about it. He alway shrugs and says he will just type everything on the computer when he is grown. I can always tell when he is having a flare up, he starts having trouble in math and his handwriting gets so bad you can hardly read it. It is so odd how similiar some of the children are. My son's science teacher told me last year that you really have to get on that OT pretty early to help with handwriting because that becomes a pretty permanent pattern early on. I would keep on the school system, call every few weeks. You know the drill, the squeeky wheel and all that. Good luck! Dedee

In regards to the antibiotic issue, I think it is just like any other treatment. You need to look at the risk's and benefit's, and see which is higher. That is simply the way we do it in the health care industry. When a PANDAS child continues to have high antibodies and this results in symptoms that interfere with the childs everyday activities you need to look for treatment for that child. It is believed that the elevated strep antibodies cause swelling in the portion of the brain that causes these behaviors / tics, etc.. The theory is that if allowed to go untreated for extended lengths of time it is possible to have damage to that portion of the brain. Now if you give a child antibiotics and there is no improvement in his or her symptoms then it stands to reasons that the benefits of long term antibiotics do not out weigh the risks. However, if you have a child who is basically not able to function in school, not social, and who is miserable with tics; then you begin antibiotics and most of those symptoms subside, then that really seems like a case for continuous antibiotic therapy to me. It is important in this type of illness not to speak in generalities. What works for one child, may or may not work for another. For us, antibiotics have been a life saver. However, I have read of other parents who have started antiobiotics with their PANDAS children only to see the symptoms get worse. We must be careful not to lock ourselves in the same boxes that some physicians have and say that there is only one treatment for this illness. Each child is an individual body with different and complex issues and no clear cut answers. That's why this forum is so wonderful, because everyone comes here with different things that have worked for their child and we are all able to learn from each other. Just wanted to put in my two cents worth. For whatever it's worth. Ya'll have a good day! Dedee

Michele, Oh Yes, I most certainly can believe it. In fact I would have expected it. We also went to a "expert Infectious Disease specialist " with my son, and I was so shocked at the stone wall that I hit. Absolutely no room for discussion. They did a strep culture, some titers, and agreed that he "probably" had PANDAS, but basically refused to give any sort of treatment unless he was strept positive. Well heck, I can get that at any walk in clinic. I put that visit up there with one of the more frustrating Dr's visits we endured. I hope some day that ID gets a clue on how to properly treat PANDAS. I guess when it comes to physician's, it's all about information coming from one doctor to another before they will believe it. Good luck! Dedee

Emma, I just wanted to say please go hug your doctor! It gives me great hope to hear you say that a regular pediatrician is so informed about PANDAS. Maybe the word is spreading. There used to be such a physician in our area that was that good but he moved away. You are blessed to not be fighting for a correct diagnosis and proper treatment. Try to be very patient with your daughter, give her lots of love and room to express herself. I can only imagine how hard this must be at her age. I am sure it is very hard on you too. You may want to try some of the supplements if she is not so compliant with diet. Maybe start with Calcium and magnesium and a healing supplement such as NAC. Fish oil is a good one also, but don't add everything at once, in case something were to make things worse, you need to know what to stop. Maybe add something new every 10days or so. I would always suggest starting with a good multivitamin and the calcium / magnesium. Those two seem to always help. Also, epsom salt bath is good for tics and very relaxing at bedtime. Good luck and keep us informed. Dedee

Michele, Another thing I remembered about our appointment was that when we were discussing my sons antibiotics, and we were talking about his dose of amoxicillin, I asked if he was on to much as a maintenance dose ( my pediatrician thought it was a little high). Anyway, she said no, that he was on the right dose, and the only thing she might consider was switching him to augmentin, but we would wait and see if he started having any trouble later down the road. I feel good knowing he is doing well on this and there are still several others we can use (Augmentin, Zithromax, Omnicef, etc..) if we need to. I think you just need to use the lowest dose you can (without seeing symptoms) on the medication that works for that particular child. Like you said, you will usually start seeing a difference, within a few days when they are on the proper medication. Then when you stop it, usually within 48 hrs, the symptoms start to slowly return and after the third day they are back full force. When you keep a diary, you see the pattern over and over as you start and stop the antibiotics. That is what was so convincing for us and to Dr. Murphy when we showed her the behavior / medication diary we had kept for over a year. If you do switch back to penicillin after a full course of omnicef and his behavior deteriorates, I would try to get the maintenance antibiotics switched. I don't think you would have any trouble getting that written reccomendation from Dr. Murphy if you called and explained how things had turned out, I am sure she would send a letter out to your physician. Just keep your fingers crossed and hope the best for your son. Let me know how things go. Good Luck. Dedee

Michele, To answer your question, yes Omnicef and Augmentin are both stronger than plain penicillin. Regarding the dose of Omnicef, it depends on the weight of the child and whether you are giving it once or twice daily. Antibiotics are dosed by weight in children. Good Luck. Dedee

Trubiano, My son does occasionally get a bit scatter-brained, but nothing like you are describing. I would be very concerned if he is not able to identify everyday items. I'm not sure what medications he is on or what but I think I would contact a physician if this continues. It could be a serious issue. Let me know how things go. I'll be praying for you. Michele, my daughter usually is given Omnicef for her strep when she gets it. It seems to work well. I did hear one doctor say that Augmentin would be better. We don't use plain Amoxicillin on her because it never has gotten rid of the strep before when she had it, so they moved up to something stronger. Augmentin is very hard on little tummies though, so that may be why they chose Omnicef. Plus you can give it only once a day so it is easier for school age children. Either way it should knock it out. Good idea to test them. Don't forget to change out everyone's toothbrushes. That is always a huge source of cross-contaimination in families. Hope things settle down soon. Dedee

Michele, Interesting that you would ask that. What I have seen since he has been started on continuous antibiotics is that when another child in the family has a strep infection, he will not actually have strep but he will have some real emotional issues like before only milder. Also, he starts having trouble concentrating on his homework and gets frustrated very easily and cries alot. Basically he exihibts milder PANDAS symptoms without the full blown episodes. His tics will come back very mild and I will start giving him epsom salt baths again and increase his calcium/mag for a while. Sometimes I notice that he begins going to urinate alot. Of course, we try to not to bring any of this to his attention and just keep on keeping on like it is just another day and usually after about a week things get back to normal. Actually since school has started back I have noticed a slight increase in his head turning tic. I suspect there is some mild exposure from school that has caused it. However, as I said before, all of this is sooooo much better and easier for him and us to live with compared to before, that it really is no big deal any more. Just like you posted, if it doesn't bother the child or interfere with his life, leave it alone. Well, my son is happier than I have ever seen him and has more friends than he has had before. So that makes me a happy Mom. His grades are good and he isn't struggling in school. We are even thinking about decreasing his OCD medicine again. We decreased it about 6 months ago and he is still doing well, so I think I am going to decrease it again. I would love to get him off of it all together. He has had to be on it since age 5, because his OCD has always been his most significant, life altering issue. I am praying we may finally be at a point where if we go slowly enough we could get him off. I found the information you gave about NAC very interesting. I had not heard about that before. Are you using that now? If so, can you tell a difference. Also, what kind of multivitamin do you use? I haven't really ever found one that was what I wanted and cost effective at the same time as I have three children that really need to have the same type vitamins as far as dye free, etc.. Any suggestions? Again, thanks for posting. We all learn so much from each other. This board is such a blessing. Dedee

Michele, So glad to hear that you also had a good experience with the Shands Clinic. I felt everyone there was so helpful and polite. Your information from Dr. Murphy will be a great help to so many. My son does not have the ADHD component to PANDAS, only the OCD and Tics. I feel very fortunate that we have avoided that so far. My pediatrician was agreable to the suggestion of continuous antibiotics with the letter she received from Dr. Murphy after our visit. We haven't had any problems since. It sounds like she gave you alot to work with. I hope you are able to make progress with this plan. It must seem a bit overwhelming right now. I know you will be able to get things organized and going for your son. You are a very dedicated mother. Just take a deep breath and take it one step at a time. Thanks again for your post. Good Luck and God Bless. Dedee

What a blessing it is to hear such a success story. Your son is so lucky to have such a dedicated loving mother. I applaud your efforts and hard work toward helping your son. You should be very proud. Thanks for posting. Dedee

I don't think she endorses a particular brand. All I can tell you is that she said in my situation to make sure that we got no additional omega 6's. I am sure that every situation is different. You may have to experiment around like we did till you find what is right for you. Good luck. Dedee