Dedee

I got the adult with calcium and it helped alot with my migranes. Just a warning, if you have problems with kidney stones, stear clear. After one week, I had a huge 6mm kidney stone that had to be surgically removed. Very painful. I should have known as I have a history of kidney stones. Anyway, I gave it to my sister, and she loves it also. Just FYI. Dedee

Trubiano, Hello, and welcome. Saw your post to me below and then read your post here. Sounds like you are really going through a rough time with your son. In a way it was easier with my son in that his OCD started first when he was five. As is the case with PANDAS patients, it was very abrupt in onset (about 10 days following a strept infection), and he was suddenly worried about contamination issues and washing his hands constantly. He always wanted to wash the plates three times before eating on them, etc.. We started him on Zoloft and his symptoms went away. The symptoms re-appeared a couple years later after another strep episode and after that we began to have issues with chronic anxiety, his emotions were very unstable, he would talk out in class alot, cried alot while doing his homework, lots of frustration issues. Also, he had issues with feeling the need to urinate, but then couldn't. I found out only recently that is common for PANDAS patients. His tics did not begin until this last year when he had a series of 4 strep infections in a row. He suddenly woke one morning with violent, frequent, head and shoulder jerking with eye blinking and rolling. We saw a neurologist who put him on medication that totally zoned him out to the point that he could not stay awake in school (but the tics stopped). Then we decided to get his tonsils out and started the antibiotics post op. We also stopped the tic medicine post op. It was then that we noticed the correlation between the antibiotics and no symptoms. He had no tics or OCD or anxiety symptoms while on the post op antibiotics, and then when they were stopped it all came back full force. So I called his pediatrician and told her and so we tried it back just to see what would happen and amazingly all the tics stopped again. That is when I started to research antibiotics and PANDAS. We went to a Infectious Disease here but she would not agree to leaving him on the liquid amoxicillin. To contraversial for her. So we took him off again, and again, all the symptoms came back full force. He started to tic again. Started talking out in class. Crying alot, Problems with homework. I figured this is crazy, so I had a consultation with his pediatrician and took in the studies that I had from NIMH. She agreed to write me the prescription for antibiotics short term till I could get down to Florida to see Dr. Murphy and get a "treatment plan recommendation" from her. We were on the waiting list for four months to get the appointment. Then I think the appointment was about 6 weeks out. The rest is on the post below. I am not sure I understand the concept about the antibiotic injections. Seems like the antibiotic liquid would work much better. I would be very concerned that your son continues to re-grow strep. One thing Dr. Murphy suggested about my second son who continues to get strep, is that everyone in the house have a strep culture and everyone that he is in frequent contact with have a strep culture, including grandparents, aunts, uncles, cousins, etc. It is very detrimental (sp?) for a PANDAS patient to continue to have so much strep exposure. As far as having his tonsils removed, if you can not locate a specific strep source within the immediate family, then having the tonsils removed would be a good consideration. My son has done so well since having his tonsils and adnoids removed. One simple thing to remember is to always throw away his tooth brush after a couple of days on the antibiotics. Toothbrushes are the number one source of re-infection for strep. Since you are in Georgia, you are very close to the Shands Clinic, and it sounds like you could really use a good doctor with a solid knowledgebase. I would encourage you to make an appointment and stop the guessing game. This must be so hard for you. Hope that you can find some help for your son soon. Keep us updated. Dedee

Glad you found us Floridamom. Something you didn't mention is what is going on in your childs life prior to the onset of the tics. I wondered if your child was showing symptoms of illness, be it viral or bacterial before your noticed the increase in the tics. Does anyone in your family have a history of tic disorder? Had your child been exposed to anything out of the ordinary prior to the flare up? Maybe a vaccine or any changes in the house-hold enviornment. These can be big triggers. I know it seems over whelming to think of all of those possibilities now, but if you can just keep it in your mind, you may begin to see a pattern over time. It is important to realize that you don't have to figure out everything right now. Although it may feel life threatening, it isn't, but it is life altering , which means you need to take good care of yourself so that you can take good care of your family. Everyone here will be very supportive and you will learn so much. The only other suggestion I have is you may want to try epsom salt baths. That is very relaxing and seems to help a great deal with tics. Good luck and keep us updated. Dedee

Thanks for everyones engouragement. Yes, I do believe this was a true God send. Amazingly, I never would have known anything about Dr. Murphy or the Shands clinic had it not been for the information gained here. I am so grateful that people are willing to give up their time and come here to support one another and share information in the hopes of helping another person struggling with the same issues. God's work is amazing. I just wanted to add about the Max EPA, that she did mention that we should not give anything that had supplemental omega 6's. I have been doing alot of research on the max EPA and from what I understand this is very important because it is the disproportion of 3's to 6's that is one of the main issues. In addition, when choosing your fish oil, you should choose one that has a 2:1 balance of EPA to DHA. EPA should be the higher. I now have my entire family on it, including my three year old and my elderly mother :-). Again, I would like to encourage those who struggle, as I did, with physicians who give you more anxiety than answers; to try to find the expert (their are only a handful) on your situation, and save your money, and make the trip. It will be worth the investment. Of course, we haven't gotten the bill yet :-). But we have been saving every extra dollar for months and months and we will be taking our vacation in our back yard this summer, but our family is at peace. Hope it lasts for a while. Dedee

Well our long awaited appointment with Dr. Murphy at the Shands clinic in Gainsville Fl. was well worth the 6 month wait and the 9 hour drive. Everyone there was soooo nice and extremely organized. No one had lost paper work or insurance information. I wasn't sure if Dr. Murphy was a real Dr. or a psychic :-). (Joking). She seemed to already know my son so well. She was able to describe him and all of his problems without us even telling her. She was truely so nice and understanding. She looked at his lab work and went over his history with him and with us (although my son was very nervous and wouldn't talk). She absolutely affirmed that he needs to be on antibiotic therapy to control his symptoms. It was a big help that I had kept detailed records (spread sheet) on his history of tics and emotional issues daily while both on and off antibiotics. I gave details of things he described and how often he was ticcing. That idea came from someone on this board. (Thanks so much). She really liked the "ticcing log", as we call it. It clearly shows how much better he does and how much more stable his moods are and his conduct in school is while on antibiotics. They kept the spread sheet for his file. She did decide to leave him on the Amoxicillin, even though I asked about Zithromax, because she said that she had seen many kids build a tolerance to Zithromax much faster than they do the Amoxicillin and we still have several years to go with him. Of course, she said that antibiotic therapy is still very contraversial (obviously, I came 9 hours), but when you have a child who clearly responds and you have repeatedly taken him off and each time get the same result, then when you re-start antibiotics the symptoms subside, it should be an unwritten rule. However, the average physician will not take risks on contraversial issues. So she is going to send my pediatrician a letter of treatment recomendations, which was all my pediatrician wanted. So we should be good to go now. What a huge relief. Another thing she also recommended, was to start him on a Max EPA in the form of fish oil. I told her I had him on flaxseed oil but she said she would prefer him to be on a max EPA fish oil. She said I should probably start my other children on it as well. I didn't get a chance to ask why, but when I got home and did a google search I found lots of good information on using fish oils and EPA's in the treatment of psychological disorders in children. Pretty interesting stuff. Needless to say, I have that going already. She also suggested probiotics, which I have had him on for a couple of months. I was impressed that a doctor would think to bring that up though. She is very thorough. Over all it was a great trip and I believe a blessing for our family. We received the affirmation that we needed that we were doing the right thing for our child. Our pediatrician got the letter she needed so she feels comfortable writing the prescriptions for us. If we have more problems in the future, we are established patients and we can get an appointment or make a consultation call. That is a huge comfort. I would encourage any parents who can not get answers from your current doctor or you feel your childs doctor is not knowledgable enough, please keep fighting for your child. I went to three "specialist" that my pediatrician sent me to, trying to find help for my son. In every situation, I knew more about PANDAS than they did. Not because they weren't very good doctors, of course they were, but I am a nurse, and I have done hours and hours of research on PANDAS and they have only skimmed the surface. I have had so much help from this board and would have been lost without everyone here. For us, it was very much worth the 6 months waiting period and the long drive to find an expert who knows everything about this disease that affects my child. She was so awesome and full of great information that was helpful to my family. I just wanted to share my experience in hopes that it is helpful to someone. Thanks for everyones help thus far in my journey. Dedee

Hi Jane, Sorry I don't have much time. I just wanted to say that I understand your reluctance to start your son on alot of medications. You may want to read the article someone posted recently on Inositol in the treatment of OCD and anxiety disorder. Inositol is one of the B vitamins and also it is a water soluable vitamin, so the body will filter via the kidneys what is not needed. That means it is not possible to overdose your child. That makes me feel better. It shows very good results in treating OCD in studies compared to medications. Scroll through the archives and you will run across it. My mother started on it recently to overcome some anxiety she has been having after her surgery. She believes it has helped her. Good luck with your son. Dedee

Well today I finally got the rest of my son's lab results back. I got my pediatrician to run them for me to compare to what the infection disease doc did last December. I knew my insurance would pay for them here and we are going to the Shands Clinic in a few weeks, so I wanted to have something recent available to compare to when his tics first started. Anyway, last december (one monthe after strept) his ASO titer was 1200, they did not do a Anti-DNAse at that time. This time his ASO is 1040, and his Anti-DNAse is 2,720 with the norm for school age children being less than 170. He has not had a strept infection since the second week in November. He had his tonsils and adnoids removed in early December and has basically been on antibiotics since that time, with only a few exceptions of taking him off to determine what would happen, then starting him right back. I just wondered what you all think of these results. It still seems pretty high to me. After all, it has been 5 months since the last infection. As far as his symptoms go, he does pretty well. His grades have come up dramatically. Moods are more stable, although the last week he has been more argumenative and seems stressed (not sure why). His OCD is not evident, and most people would not notice his tics, but I still see a few, which doesn't worry me as long as it doesn't seem to worry him (which it doesn't). He occasionally has trouble sleeping, I would say about once a week or so. But I have to admit that I am kind of shocked at how high these lab results are. I anticipated that they would be elevated, but not to such a degree. I thought we had made more progress than that. Anyone have any experience with labs, high or low??? Dedee

Patty, I really do not know anything about stimming. However, my son does what you are describing. When he is not on antibiotics, he has a head nodding tic. If he tried really hard, he could sometimes control them, but not often. When we went to see a neurologist who is supposed to be very specialized in childhood tic disorders (though she did not know alot about PANDAS), she told me that when he was moving his head around in what looked like a way to stretch his neck (he does not do this frequently), he is just hiding or controling the head nodding tic. She observed him do it a couple of times during the exam, along with a few other facial movements that looked pretty normal, but she considered tic "cover ups". She said it was a way that the kids make their tics sociably acceptable. So even when he is on antibiotics and there is no evidence of what I consider "tics", he still does this neck stretching thing occasionally and some facial grimaces. I did not put him on the medicine the neurologist suggested. These things do not bother my son or interfere with any part of his life, so I say what is the point. If it gets worse, we will cross that bridge then. I am interested to find out what you decide about if you think this is stimming with your child. Let us know. Dedee

I am not really sure about Keflex dosage. Someone else here may have more information on that than I do. My son takes Amoxicillin. He takes half the normal dose for his weight, so he is on 250 mg twice daily which works for him. I think what is important is that you use the lowest amount possible and still see a reduction in tics. We tried to go to only once a day on my sons but the tics started to come back so we had to increase it again. I would like to try Ziththromax which can be given weekly, but I have to wait until I see the PANDAS specialist that we have an appointment with in May to see if that is what we need. I remember that someone here has used Keflex but I am not sure who it was. Maybe they will respond for you. It is best to find a physician to work with you through this. I know how hard that is. You may have to do some traveling but it would be worth it in the end. Good Luck. Dedee

Mike, I assume you are talking about ASO titers. That is great that his titers have droped so quickly. I wonder though, was he tic free while on the antibiotics? Generally speaking giving Keflex only once a week will not make a significant difference in tics. It needs to be given daily. Zithromax can be given weekly to see changes in tics but Keflex and Amoxicillin are daily. My son has PANDAS and his ASO titers were 1200 one month after his last strept infection. We retested him last week and they were only down to 1040, that is a little over 5 months after his last strept infection and he has also had his tonsils and adnoids removed. His tics only respond to antibiotics, not changes in titers. We have challenged this theory several times by taking him off the antibiotics and watching the results. It never fails that around 48 hrs later his tics start to return. When we start them back, they go away. We have done this at the doctors request three times with the same results. He has always been cultured negative as well. It seems to baffle them for some reason. Like they can't believe us that this happened before. By the way, my son does not realize that we give him antibiotics to treat his tics. We do not want him making that association and having pre-concieved ideas. He takes so many meds / supplements that he just takes what I give him without question, which makes things easy. We also have him on Cal / mag, Flax seed, Probiotics, and a multivitamin. IMHO, if your son's titers are that low and he is still having tics he may benefit from daily antibiotic therapy unless you are just really opposed to that. It just depends on how much his tics interfere with his life and if they really bother him. Many times the more time that passes from the strept infection the less the tic severity regardless of the titers. (From what I have read) You may want to wait this out or try just some simple supplements. There are options out there for you. Good luck in whatever you choose. Dedee

I am not sure where you are located, but you might also consider Dr. Susan Swedo at the NIMH in Bethesda, Maryland. She is a PANDAS expert and has numerous publications on PANDAS. I think there is someone else here who has either seen her or consulted her by phone and said she was awesome. Good Luck. Dedee

I am so glad that you have gotten some great responses and information. If it had not been for this site I don't know what I would have done when I was in your shoes. My son has had PANDAS for a long time, but it was not a huge issue until it caused an explosive tic disorder literally overnight after a series of strept infections last winter. I was at a complete loss for what to do. His OCD was pretty much under control, but this was so new and frightening and all the doctors wanted to do was medicate him into Zombie land. His tics would always go away with antibiotics and then come back about 48 hours after the antibiotics were gone. I would convince the doctors to start them back then when we ran out the tics would start back. We have been to see Infectious Disease specialists and Neurologists, but neither want to keep him on long term antibiotics. I have literally collected (have a notebook) articles on PANDAS and NIMH studies on antibiotic therapy in PANDAS patients, and took this to my pediatrician. She is willing to give the antibiotics after reading this but still wants more confirmation from a specialist. So, after being very discouraged with the local ID and Neuro, we decided to go straight for the "Big Guns", so to speak. There are really only a few doctors nation wide who are experts in the field of PANDAS. The one we chose to see is Dr. Tanya Murphy at the Shands Clinic in Gainesville, Fl. We were on a waiting list for about 3 months or so, then we were able to get an appointment and will be taking our son in late May. She has a very good reputation, and there are others here who have seen her I think. My point being that sometimes you have to make drastic decisions regarding the care of your child and not assume that your doctor or even the local specialist is going to know how to treat this disease. It is very new to the medical community and even those who have heard of it or think they understand it, usually are only skimming the surface. I do not mean to sound like a downer. On the contrary, my son is doing very well now. But truely it is mostly due to the steps that I have taken and not because of anything that the doctors have suggested. I have fought tooth and nail for everything that has made him better. We had his tonsils and adnoids removed and have had him off and on (mostly on) antibiotics since then. There are still some residual issues but I think once we have our May appointment we can resolve those. He is currently on Amoxicillin and I really want to switch him to Zithromax, but can not get anyone to agree to that yet. So we will see. Please keep fighting for your son and looking for a doctor who will work with you. Keep us updated. Dedee

You said she is positive for strept. When did the tics start in relationship to the strept? That is a significant finding. Dedee

Thank you all for your reply. I have had the same issues with some of the probiotic powder clumping in her milk. I finally found one that doesn't, but I like the idea of opening the capsule that my son uses. That way I wouldn't need to buy two different kind. I would like to add something additional because she is so susceptible to yeast. Chemar, do you know if Treelac comes in a liquid form? I have read alot about yeast recently in my quest to rid my daughter of it, and I agree with what you said. I just seem to be having a hard time getting ahead of it in this situation. Thanks for everyones input. Dedee

Well this all started when I started researching probiotics to give my son with PANDAS. I decided that I should also get some for my three year old daughter who is on daily antibiotics for kidney refulx which used to cause her to have frequent kidney infections before the antibiotics. (She should grow out of this in a couple of years). Then I thought that maybe I should also start her on something for her yeast, because I have made several phone calls to her pediatrician over the last six months for thrush and a yeasty bottom. She is constantly complaining that her bottom hurts and we have started keeping Nystatin ointment all the time which gives temporary relief. She got an ear infection last week and after the second day on Zithromax I had to call for diflucan because she was screaming in the bath tub because it hurt to sit in the water. So, I guess you can see why I would like to try to get some kind of natural preventative treatment for her. I have started the probiotics, but she is only three and very particular about what she thinks might be in her drink. I have to sneak anything in her milk so it needs to be liquid or dissolve easily. Does anyone have any suggesions of what would be effective. I have not said much to her doctor as she usually suggests the usual of cotton panties, keeping her dry, etc. I have done all that a long time ago. I realize this isn't the usual questions for this forum, but I know how knowledgable everyone here is on supplements and I fear that this yeast issue is causing other behavioral issues with her and I would like to clear this up ASAP. We can't use difulcan forever. I appreciate opinions- Dedee

I just read the article sited above that said to mix the powder with either water or juice and wanted to make sure that there wasn't a specific contraindication against mixing it with milk. Thanks for the reply. Dedee

Does anyone know if there is a specific reason why you can't mix inositol with milk? I really would like to try this for my daughter who exhibits symptoms of generalized anxiety and seperation anxiety. However, she does not drink juices, and I thought I might be able to hide it in chocolate milk without her noticing. Just curious. Thanks. Dedee

Thanks Chemar, I thought I remembered something about that from one of your posts. I was thinking of adding an Omega 3 for my son but was hesitating because I wasn't sure exactly how to go about it. You're always a wealth of information! Dedee

I have generally heard that Omega 3 fatty acids are nutrient rich "brain food". There are several different forms and I remember that Chemar has posted certain ones being better tolerated than others. My son doesn't take any as of yet. Dedee

Glad that you finally joined in. So sorry for your difficulties. It does sound very hard to figure out. I have two children with asthma and it does seem a bit strange that he would seem out of breath when at rest, although allergies could trigger this. When you say that he can't catch his breath, do you hear any wheezing, or are you visualizing this, or going by what your child is telling you? It could be that he is having a bit of anxiety which causes a change in breathing pattern and before you know it they have somewhat hyperventilated and it feels as though they can't get enough air. My oldest son who has OCD did this a couple of times and I did not even recognize it as hyperventilating, he truly thought he was dying. On the other hand, if you hear wheezing on expiration or see his abdomen pulling in with inspiration that is more a sign of something physiologic. Any time my son has some physiologic stressor his tic will come back for a short time and then fade away as he gets better. I would definately try to evaluate this breathing issue and determine if it is anxiety, or a tic, or physiologic. If you can not determine as a parent on your own, then your peditrician should be able to do some simple pulmonary function tests on him to help you out. It is very painless, all he has to do is breath into some machines and they can tell the level of funtioning of the lungs and decide if they are completely healthy or asthmatic or something else. Good luck and let us know how your son does. Dedee

Loren, My thoughts are that you should go ahead and do the cultures and the titers both today. You may or may not get a positive culture. Even if it is a negative throat culture there can still be strept other places in the body causing elevated titers and believe me you will never get a doctor to draw titers after a negative throat culture. I have read about PANDAS patients having strept in the adnoids, ears, rectum, gut, and many other places. The average doctor however seems ignorant to the way that PANDAS can present and how it should be treated. Get it all now and then go from there with the results. I feel your frustration, and believe me, I have been there, done that and have the scars to show it. You are not alone. Dig in your heels.... Dedee

Loren, I just wanted to respond and send you a big hug. I know exactly how you are feeling. I cried for three days after my son woke one morning with violent tics. At the time he was on medication for a strept infection, and had a history of strept induced OCD, so it was pretty obvious what was causing it. But I'll tell you, it sure didn't make it any easier to handle. I must say I really do not understand your doctors reaction. I am sure it is very difficult for you not having insurance that covers physician appointments, but is there any way you could find a different doctor for your son? We have had our share of doctor trouble as well, so I feel your pain. It is so frustrating. I have just gotten to the point that I really do not care what they think, I try to be as nice as I can, but my sons future is on the line and my job is to protect it, period. You have gotten great advice from everyone here, so take it all slowly and in no time you will realize that you never really lost your life at all, it is still right here where you left it. Breathe deep... Peace and Grace - Dedee

Mike, I wanted to add that you need to have your son tested after he completes his antibiotics to see if the strept infection has cleared. This needs to be a culture not a rapid strept test. Also, PANDAS patients should have their cultures ran for 72 hours not just 48, as they can still come up positive after the second day. Your doctor will most likely look at you like you are crazy. Get used to it. If your son is a repeat offender in the strept throat department, you may consider the benefits of having his tonsils removed. My son showed a huge improvement after his tonsils and adnoids were removed, but he was having one infection after another. That may not be the case with your child. If your son does have PANDAS, you should see some improvement in his tics when the strep starts to clear and the antibodies start to come down. My guess is that if you are not seeing an improvement then either he is not on the appropriate antibiotic and still has strept or perhaps his tics are caused by something else. I agree with the others that maybe you should try azith then see if that improves the tic. Then I would stop the antibiotic and repeat the culture to see if it is clear or of he is a carrier. When you stop the antibiotic his tics will most likely re-appear within 48 hrs. We have done this four times to prove to various doctors that there is a direct response of my sons tics and the antibiotics that he takes. I would encourage you to act quickly and agressively for the sake of your child. My son developed OCD at age 5 after a strept infection. I didn't think it was possible for him to develop other illnesses. It was 6 years later after several strept infections in a row that his tic disorder began. I am very angry at the medical profession for not informing me of that possibility so that I could have made decisions to protect my son. From now on, I make the decisions for the treatment of my sons PANDAS, regardless of how far I have to travel to find the right doctors to help us. He is doing very well now. The only thing I would like to do now is to get his antiobiotic changed from Amoxil to Azith. Still working on that. All in good time. You are at the right place to find help and support. Let us know how your son is doing. Good luck with your doctor. Dedee

Sunshine, To answer your question, yes we saw a huge difference in my son after surgery. Of course it took a couple of weeks to recover from the pain, but he has been a completely different child. The surgeon said that his tonsils and adnoids where huge and we were definately right to get them out. I wouldn't worry much about the paleness after surgery. It did not bother my son much, just me. I am sure it has something to do with his immune system not functioning at it's best. I wish I had been more prepared at the time and could have given him supplements ahead of time to stregthen his immune system prior to the surgery. Oh well, live and learn. We have also struggled to find someone to give us long term antibiotics. When my son is not on antiobiotics his tics come back in full force. My understanding is that just because he doesn't have strept in the tonsil or adnoid area, the PANDAS patient can still have strept in other areas of the body or be reacting to the strept titers which remain elevated. Studies have shown that some PANDAS patients will have a decrease in neuropsychiatric symptoms in response to antibiotic therapy even though the strept cultures are negative. This is a mystery to all of the medical community and is why most physicians are hesitant to write long term perscriptions. It is the old belief that we can only treat if there is a positive culture. PANDAS is very new to the medical arena and it's treatment is still very contraversial. You will find a new opinion in almost every doctor you consult. We are planning to see Dr. Murphy at the Shands Clinic in the next few months. I am tired of consulting with "semi-experts" and getting confusing information. I think I'll just wait and go straight to the source. I hope everything goes well for your son. I was wondering what supplements you have him on. Sounds like you have done a good job getting them adjusted to his needs. Good luck with the surgery should you decide to move forward. Dedee

There are times when my son also tends to look extremly pale. It is usually associated with other symptoms such as poor sleeping, increased anxiety, and other PANDAS related issues. After his surgery to remove his tonsils and adnoids he looked like a ghost for months. The doctor assured me that it wasn't anemia from blood loss, but I changed his multi to one with extra iron for a month or two. My family was so worried they wanted me to take him to a hematologist, I'm talking very pale. But all the labs showed his blood counts to be normal. It was strange but did resolve after a few months and now he looks healthy again. If you have your son on allot of supplements, you should talk with your doctor about this several weeks before the surgery. Some supplements can affect the bloods clotting time and cause excessive bleeding if not stopped ahead of time. Your doctor can tell you the appropriate time to stop them before surgery. Good Luck, hope your son does well. Dedee