Dedee

I LOVE that idea!!! Dedee

OK, now the weirdest thing has happened. I go home on Friday to tell my husband that I want to count how many times my son asks me if everything is alright. I wanted to have a number to be able to take to the doctor tomorrow so I could say he asks 12 times a day or whatever. So we agree we will tally up and write it down for reference. Of course, what happens? Nothing, not all day Saturday or Sunday....NOTHING. He doesn't ask a single time. Seems just fine. What in the world is going on here? I don't know if he is getting better because of the 5-HTP that I started him on a week ago or is this his normal cycling thing or what. I am so confused!! He does still tell me frequently "I love you mom". But what he is really doing is waiting to see how I will respond, what the tone of my voice is, etc. I know it sounds crazy, but if I don't answer in the right tone ( or whatever), he says it again in just a few minutes. But even that is only about 5 times a day, nothing like he was doing when he would ask for reassurance. He still does the frequent urination thing, no change there. So, heck, now I don't know what to do about the doctor's appointment tomorrow. She is going to think I am nuts if I go in and say, well he was doing this but now he isn't. Uggg, I think I am going nuts. What to do....What to do..... Dedee

My suggestion to many is to keep a log (we do a spread sheet), of your childs behavior and severity of tics. Also, put in what is going on in their life at school, any illnesses, medications, other stressors, etc. We did it daily for months. When you look back you can see a pattern of behavior or increase of tics to either illness, or maybe just to stress. Point is, you should be able to identify if this is something that has a pattern based on illnesses or does it have a natural wax and wane pattern. Someone on this board suggested this to me years ago and it has been so helpful. We have been able to pinpoint to the hour almost when tics would return after stopping antibiotics and when they would resolve after starting them back. It helps to show the doctor a pattern as well. It seems very time consuming but once you have it set up it only takes a couple of minutes at the end of the day to type something in the file about the day and save. It's a great reference. Good luck and glad to hear things are improving. Dedee

I'll give you my opinion / suggestion. I would fire the jerk neurologist first thing. Then find someone informed who will take the situation and your concerns seriously. I can not tell you if it is a case of PANDAS or not. I can tell you that you deserve to find answers without uninformed health care professionals giving you ignorant opinions. Certainly there is enough concern here to warrant further investigation by someone who has knowledge and experience in this area. I wouldn't hesitate to seek out a recommendation of someone that you know will take you seriously. I would stop wasting time on closed minded idiots who think they are helping their patients and find someone who you know will be their for your family. I don't know where my family would be now if it weren't for the wonderful recommendations that we received here. Good luck to your family and keep up the hard work. It will pay off. Dedee

Debbie, I can only give you my experience and you can decide for yourself. My son's PANDAS went undiagnosed for years even after abrupt onset OCD immediately following a strept infection and flare ups following subsequent strept infections. In addition, he also had issues with the need for frequent urination. And like many here we found no corresponding physiologic reason. We did the whole pediatric urologist thing, multible tests, nothing...notta. Eventually it faded away and no more was thought of it. However after he developed his tic disorder (during a strep infection), he finally got the PANDAS diagnosis. After many failed attempts to find proper treatment in our area we eventually traveled 8 hours to Shands clinic to see Dr. Murphy. Let me tell you, she knew my son inside and out. She was able to tell me things about him as though she had known him since birth. One thing she asked about was if he ever had any issues with his bladder or with urination. I almost hit the floor, because I had dismissed that and never brought it up again to any other health care giver. Of course when I started telling her about it she was nodding and said that most PANDAS kids will, at some time, have these issues. She said it is unclear wheather or not it is a problem with the strep antibodies affecting the part of the brain that interprets signals from the bladder or if there is some strep component within the bladder itself. All they know for sure is that it is a commonality with most all PANDAS patients. It usually resolves eventually and the best thing is to not make issue of it. Actually my second son, has intermittent issues with this also, which of course causes worry. I have found that the less I say about it the better he does. It is a very strange thing, almost like they are having bladder spasms (if you have ever done that). Anyway it seems very real to them and that is all that matters. I guess as parents, we need to be as understanding and patient as possible. As far as the rest of your story, just my opinion, but it sounds very PANDAS to me. What I have found helpful (someone on this board mentioned it), is to do a spread sheet of your childs behavior, and tics on a daily basis, documenting what meds he is on and what other contributing factors are present at the time. When you look back over time it will show you a definate pattern. We did this and took it with us to see Dr. Murphy. They all thought it was great and kept a copy for his file. I am sure you will eventually get the treatment plan that works for you. It sounds as though you are on the right track. Good luck! Dedee

Actually Kelly, I think that is a great idea. I was thinking of having a culture done to make sure it was gone but I like the idea of titers better. I would love to get some antibiotics but I'm not sure at this point if I can talk my pediatrician into it. I have an appointment to have a parent / doctor consultation (without my son), next week. I will get a feel then if she thinks I'm nuts or believes in the family link. She isn't very up on PANDAS, but did agree to give me the ongoing antibiotics based on a treatment plan sent to her by Dr. Murphy for my oldest son. You all know how it is, they are either with you or think your some kind of crazed mother making up illnesses for your kids. Whew, that gets so old after a while. Sarah, I have actually been thinking of stoping most everything except the fish oil, but I wanted to give the 5-HTP enough time to work if it's going to before I do anything drastic. He has been on fish oil for years so I know we are good with that. It seems that anytime I try to talk to my son about what is going on he just gets extremely upset and cries and is so apologetic for his behavior. It will just break your heart. He really doesn't seem to understand his actions or be able to articulate his feelings. So I am so hesitant to bring it up to him anymore. I'm just not sure what is right or wrong anymore. It is so frustrating. Of course I only want to do what is best for my precious child, but at this point I am not sure what that is. I am so hesitant to use medication. I mean, it worked well for my first child and heavens knows we probably could not have gotten through that first acute phase without it. But it has been a long road to wean him off and I'm not sure I want to get on that horse again. I guess it is day by day till our appointment next week. Thanks for your help! Dedee

Amy, First just let me send you a great big ((((((HUG)))))). I can not imagine going through all of that in another country with no support. I am just so impressed that you have done as well as you have given the circumstances. IMHO, it sounds like an obvious case of PANDAS to me. Most of what you described could have been my PANDAS son in the beginning of his ordeal. My gosh for years we dealt with varying degrees of ocd and he took an SSRI for several years before we got the right treatment and have been able to wean him off. As for the titers, they are abnormal but that is common in PANDAS. Before we went to see Dr. Murphy my son's Anti-DNAse was 2,720 and his ASO was 1,040. I think that was what finally convinced my pediatrician that this was true PANDAS and outside her scope. The light I see for you is that it seems you have finally found a physician(s) who are on top of this and will offer appropriate, and aggressive treatment. You can hold on to that hope, when things seem hard. It seems for most, that just finding someone you can work with is often one of the most difficult parts of this journey. Many people here (myself included) have been in similair circumstances and have brought their children through it and are now seeing the rewards of their hard work. Try to hold on and know that this will get better. You are doing a great job of helping your daughter. She is lucky to have you for a mother. Be kind to yourself! Dedee

Well, I hate it that I even have to come here, but I suppose denial won't fix anything. I know this is not the ocd forum, but I also know that many of you (like me) are dealing with ocd and tics. For those who do not know my backgroud, I have a son who is PANDAS, but now doing very well after years of searching and finally getting the right treatment. So now my second son has me very concerned. He has always had ocd tendencies and he is a very soft hearted, emotional child. In the past though he hasn't gotten bad enough with his symptoms that I felt like he needed intervention. It seemed to come and go very gradually, not at all explosive like my PANDAS son. Unfortunately, he seems to be getting worse over the last few months. It just happens so gradual that you just sort of wake up one morning and say gosh I think this is out of hand. The only thing he is doing now is constantly requesting reassurance and he appologizes constantly for really silly things. He probably asks me 10-15 times a day "is everything alright mom?" If I don't answer just right or seem in the least bit tired or irritated he will ask more and more. I have tried talking with him and asking him what he thinks might not be "alright" or if he is worried about something. He just shrugs and says no I just want to know if everything is ok. We took our PANDAS son to see Dr. Murphy in Florida (about 8 hours from home) almost 2 years ago for a treatment plan. We did have some discussion with her then about our second son and his potential. She said he very likely could develop more ocd behavior as he got older and had more strep exposure. She said that some kids will have a very gradual onset from frequent strep exposure until it finally becomes full blown ocd. He has sort of done that except that his seems to progress then receed and come back again. The problem is that this time it doesn't seem to be going away. It has been going on for around 6 months now. He also has trouble sleeping and comes to sleep with me most nights. He always has strep several times a year, always during the school year. I have thought of removing his tonsils, but not real serously. He would FREAK if he thought that was coming. He faints if one of my other kids gets a scrape. So I guess I need opinions as to wheather or not you guys feel that this is significant enough to seek medical assistance? Also, I think I heard that Dr. Murphy is no longer at Shands Clinic. How in the world will I find her now? As a side note, my son has been on inositol for over a year and I started 5-htp about 2 weeks ago. I haven't seen a bit of change in anything yet. He also takes fish oil, magnesium taurinate, and a multi-vitamin. I appreciate any opinions / suggestions. Thank goodness we have this board to turn to in times of turmoil. Dedee

Debbie, I am not sure I have the answer to your question. My son developed his first episode (sudden & explosive) of tics when he was taking amoxicillin for strep. It was about the third day when he woke with the terrible tics, which he had never had before. I am sure that it was the strep not the amoxicillin. After a long journey he now is doing great on amoxicillin twice daily and is off all his other meds for ocd, tics etc. I think the strep will cause changes in behavior at different times in the infectious process depending on the current antibody level and I am sure, many other variables we have no idea about. Now, that being said, I have heard of some children who do much worse with antibiotics than without. However, if it did eventually seem to help then I think that would exclude you from this scenario. It is truly strange how each child reacts so differently to treatment. Well, I guess if this were an easy illness, we wouldn't be here. Keep up the good work and hang in there! Dedee

How familiar that all sounds. It could have been my son at one time. It started for us at age five when the explosive OCD started. It would get better with the rest of the symptoms. His psychiatrist believed it was a part of his ocd but also said he did have some tactile stimulus issues, but this seemed extreme so she felt it was more in line with ocd. Well whatever it was it got better when we started his SSRI. That was seven years ago and I am happy to say that we not longer have that problem and he no longer takes an SSRI. We do joke a bit that he has to "bond" with his clothes for a while before he will wear them. It just takes him a while to warm up. Anyway, I just wanted to let you know there is hope and you are not crazy or alone. Good Luck! Dedee

I think you guys are right on track with the tics being related to other sensations. When my son had his tonsils out he was on antibiotics for two weeks (and tic free). When we stopped the antibiotics he started having a throat clearing tic. We had never seen this type of tic with him before. It went away after we started antibiotics again and continued them. Have you ever heard the saying "The worst thing you can do for a person with tic disorder is to put them in a turtle neck." I heard that from a neurology conference somewhere. Anyway, good luck to all. Dedee

myrose, I am so happy for you. It is wonderful to see these kinds of posts here. I am not suprised to hear of your success with topamax. When I took my son to a pediatric neurologist (supposed to be the best), she also suggested topamax for him. He had taken abilify for only a couple of weeks and it made him an absolute zombie, so I took him off of it. She said that topamax was a relatively new treatment for tic disorder but very effective and well tolerated in children because it did not have most of the unwanted side effects of other meds used for tics. I was familiar with topamax because I take it for migraines so I knew it had not caused problems for me. However, at that point I was on a mission to get someone to take his PANDAS diagnosis seriously and treat him for that and not just give us medication. She didn't really blow off the PANDAS but kind of talked around it and mostly suggested meds for the tics and OCD. We decided not to try it and to go to Dr. Murphy and get antibiotic therapy instead. This has worked very well for us. It is good to hear of your success with this medication as I believe it is a great alternative to some of the traditional tic medications that leave the child feeling dull and sleepy, not to mention weight gain and other side effects. Your daughter is very lucky to have a mother who is as persistant and dedicated as you have been to find the right treatment plan for her. Success is different in each situation, and it is great that you have shared your story with everyone. I am sure it will help someone else someday. I hope that you continue to enjoy your family and enjoy life! Keep us updated, it is great to hear success stories. Dedee

Juls, I wish I had answers for you. I just wanted to add that my PANDAS son also entered puberty early. I never made any correlation until your post. He is now 12 yrs old and is 5' 9" tall and 165 pounds. He wears a size 13 mans shoe. He was around 10 when I started noticing significant changes and really had to start making him wear deodorant. Now I have to buy the "clinical strength" deodorant for him because he has a man's body but still runs and plays (thus sweats alot), like a boy. The last year he has developed bad acne which I am treating with topical medication pretty successfully. It is just very odd to see this boy in a man's body. He seem's immune to any of it and just goes on his merry way, even though he is so obviously bigger than the other boys in his class. Since there doesn't seem to be anything to do about it, I try to compliment him as much as I can and get him to help me with things around the house that require more strength. This seems to boost his self-esteem. I'm sorry I could'nt be more help, but I do think it is interesting that some of these children have this in common. Good luck. Dedee

EAMom, My son took Zoloft initially but after a while he had another strep infection and the Zoloft stopped working even when we increased the dose. His psychiatrist tried Luvox but only short term. It made him even worse than he already was. I find it interesting that it has since been taken off the market. My son responded best to low dose Celexia (though he did gain a little weight). Our child psychiatrist said she has had the most luck with celexia and OCD in children even though it isn't used for it that often. It certainly turned things around for us. However, it is a really good feeling when you can finally get your child off of all that and know they are still doing well. I try to keep my mind open to all possibilities but move forward with caution when it comes to medicating my children. It is a very individualized and personal decision that works out differently for many situations. Dedee

Just tought I would had my 2 cents worth on the topic of SSRI's. My son did take them a few years back when his OCD first began. He was extremely dysfunctional and didn't eat for almost three days (fear of contamination). His behavior and fears were completely depelatating (sp?). So we did start him on Zoloft to get him through the acute stage. He ended up taking them for almost three years as he would continue to have flare ups of OCD when he would have a recurrent strep infection. It wasn't until we had his tonsils removed and discovered the correlation of antibiotics to symptom remission that we decided to seek other treatment. Since he has been on daily amoxicillin we have been able to wean off the SSRI very gradually and he is doing beautifully. I hated that he had to be on it for so long, but he did respond very well to it. I think however, he would have done just as well or better on daily antibiotics. Treatment for PANDAS children is very individualized and sometimes you have to do extreme things temporarily to keep things functional until a better option presents itself. I now have a second son who is showing definate OCD symptoms, though not extreme. I know that if I took him to a professional they would suggest an SSRI, which is exactly why I haven't yet. I am going to try some supplements and hold off if at all possible. However, he is not really severe and he remains very functional and continues to thrive. (Just drives the family crazy) So, we do different things in different situations depending on what we think is best for our children. I hope you find peace in what ever you choose to do and I hope your son shows improvement soon. Good Luck! Dedee

Hey everyone... I just wanted to add my input on the issue of our kids who get so emotional that they discuss wishing they were dead. I know how extremely upsetting this can be. In fact, it will completely knock you out of your shoes the first time you hear those words. My son was at his worst when he was around nine yrs old and we had him seeing a therapist to try to help with the every day anxieties and OCD issues. This was his worst year in school also. He would cry every night when we tried to help with homework. It was a nightmare. At that time he told his therapist that he sometimes wished he was dead. I swear when I heard that I nearly came unglued. I cried horribly in his office. However, as he explained to me, it is very different to wish you were dead than to have suicidal thoughts or tendencies. The key is to make sure they have not actually thought about how they would carry that out or tried to make a plan. The whole thing was so horrific I could hardly comprehend for a while. But of course with everything else in PANDAS we pull ourselves up and do what is best for our child. The great news is that my son did move through this phase and now at age 13 seems so happy that I can't even imagine he is that same child. We had several very difficult years, but now with the right treatment plan my child is finally happy and thriving. It just takes time to find what is right for each individual situation. Hang in there and be strong. You are all great parents and it will pay off in the end. Prayers.. Dedee

I am so sorry that you are having so much trouble finding a supportive knowledgeable physicaian. These issues are hard enough to deal with, without the medical community treating us like we are crazy. I am a nurse myself, and have been so embarressed by my co-workers and how small minded they can be. I mean really, how can we expect to move forward as a medical community if we insist that all patients must fit into specific categories or their symptoms simply aren't valid. It is exactly this type of attitude that holds back progress and prevents so many people from getting the help they so desperately need. I'm sorry to rant, but it makes me very angry when I hear of a family having to suffer more than is necessary because of doctors being so small minded. Please remember that you know your child better than anyone and you are a great parent for persuing this further and not stopping just because of someone else's ignorance. So many of us here have been where you are and understand your frustration. I took my son to several different types of "specialist" in my area before finally giving up and driving to Florida to see Dr. Murphy. Let me tell you, it is so validating to speak with someone who is so knowledgeable about PANDAS. It was as though she already knew my son. I am sure there are other physicians out there who can do the same for you. Just keep your determination and always remember that your child is lucky to have you for a parent. Accepting what they say is the easy thing, what you are doing is very difficult, but in the end it will be so worth it for your child and your family. Stay strong for your child, but be kind to yourself. Please keep us updated on your progress. Prayers - Dedee

Looks like you have gotten some great suggestions. I just wanted to offer input on the omega 3/6/9. The doctor we saw for our child's PANDAS suggested that we only supplement with Omega 3's. One of the main issues is the imbalance of omega 3's to omega 6 & 9 (mostly 6's). Most diets are naturally high in the omega 6's & 9's but low in 3's. So the suggestion was to be very careful to only supplement the omega 3's. Of course, all children are different and the underlying cause is the most important issue to address. I agree with a another post disussing the fish oil. Some children do very well with it (mine does fine), but other children can't tolerate it and need to get this supplementation from a different source. Good luck on your journey. Take your time and be kind to yourself. Dedee

I just wanted to give my input since we had such a dramatic response to antibiotics. First off let me say how sorry I am for what you are going through. It is horrible to see your child suffer that way. My son began his PANDAS journey six years ago after a strep episode. He literally woke up one morning with extreme anxiety and OCD behavior. It got so bad that he didn't eat for two days because of fear of contamination. At that time his pediatrician recommended Zoloft to help him through the acute phase. We didn't actually have the PANDAS diagnosis at that time. He remained on an SSRI because his symptoms would vary in intensity over the years depending on strep exposures. The medicine was very helpful in getting us to a workable place with him. We have since weaned him off. At age 11 he had several strep infections in a row and woke one morning with severe tics (he never had tics before). That was when we finally got the PANDAS diagnosis. We requested to have his tonsils removed and when he had surgery, they gave him post-op antibiotics and amazingly all of his tics disappeared. When that course of antibiotics was over, the tics returned within 48 hours. I called his pediatrician, and she said we could try another round to see what happened. Well, same thing. Within 48 hours of starting them all tics were gone. When we stopped it, they returned. So that is when I started doing research on my own and found that this happens with many PANDAS children. So I talked to my pediatrician and she felt uncomfortable with the whole antibiotic daily thing, but said if we found a specialist that recommended it she would write the script. We went to a neurologist and a ID in our area who both knew very little of PANDAS and would not recommend it. So we made a 7 hour trip to Florida to see Dr. Murphy at the Shands clinic there. She has done a lot of research on PANDAS. She was wonderful and end result was that she sent a letter of recommendation to my pediatrician for daily antibiotics. So that is where we have been for almost two years now. He is so much better, and I thank God every day that I was lead to Dr. Murphy. Recently he suffered an accident and broke his arm and has had to have several surgeries. Some anxiety has returned with that trauma, but I am hoping it will ease off as things get back to normal. We were told that we could stop the antibiotics every year or so and see if the symptoms returned, but I haven't even considered it yet. I am just so thankful for the results we have achieved. He takes amoxicillin 250mg twice daily. This is really a mild antibiotic which makes me feel better that we have something stronger to move up to if necessary. I hope you are able to get things resolved soon. This is so stressful on families and a terrible thing for the child. Keep us all updated. Good luck! Dedee

Male, age 12. Does better on Fish oil than Flaxseed. Been on it for one year. Dedee

Gosh, I only wish my son's talents included anything with music. Guess we missed out on that one. In the past when his tics were at their height, he had neck stretching, eye rolling, eye blinking, head turning, throat clearing and he repeated some phrases over again after he had said them. Now, he didn't do these all simultaneously. Usually there would be about two that were active at a time and then as one would get better, something else would take it's place. Right now he is occasionally repeating phrases, but most people don't notice it because he whispers it to himself. Normally, when he isn't stressed, he is pretty much tic free.(knock on wood). I won't even get into my issues . Dedee

I have thought about Natural Calm, but I wasn't sure if it came in a pill or if it all has to be mixed with something. If it isn't a pill, there is no way I will get it down him. That is why I thought I would try this route first. Still hoping we will see some improvement after more time. I'm getting dark circles.... Dedee

Thanks everyone! Chemar, I am also curious about the GABA. It seems that I have seen that mentioned several times but I can't recall exactly how it works and what it works best on etc.. I started the Magnesium Taurinate last night. He woke me up at 11:30 pm to tell me he couldn't sleep. I tried to get him to take some melatonin, but he didn't want to. He just said he was really worried about everything. We talked for a while and then I fell to sleep. He has been sleeping in my room on the floor by the bed since all this started. It's so hard to see him struggle this way. But I think back to all he has been through and this really is just a ripple in the ocean compared to what we have dealt with in the past. I can't get him to drink and sort of soothing tea (although I do frequently), because with his OCD he still has some issues with what he eats and drinks. He absolutely will not try anything new! You know how it is, you choose your battles. However, he is usually pretty good about taking any sort of medicine / pills as long as I explain what it is for. I am hoping that after a few days with the Mag. Taurinate we may see some results. Thanks for the input! Dedee

I posted a few days ago about my son having difficulty with sleeping since I had to take him off of his cal/mag due to surgery he had on his arm that resulted in excessive scar tissue formation. He has had trouble sleeping since that time. In the evening he seems to get very restless and anxious. He describes it as feeling "edgy". It is at this time that he needs constant reassurance that everything is going to be ok with his arm/hand and ask lots of questions about whether I think it will all get back to normal, etc. Otherwise he seems to be handling the whole thing pretty well. He goes to PT/OT every day and they say he is making great progress and believe with work all will be back to normal in a month or so. BUT, the problem remains that he just can't get to sleep at night. I have started back the epsom salt baths which seem to help his mood some, but not much with the sleep. I am absolutely sure this is related to stopping the calcium/mag since it started at the same time. I am thinking about starting some Magnesium Taurate (sp?), I have heard that helps with anxiety and I was hoping sleep as well. Otherwise his only other supplements are fish oil, multivitamin, and amoxicillin. I was hoping to get feedback on others experience with this. I appreciate any input. Dedee

I can't really give much input regarding the azith, as my son takes amoxicillin. Although I have heard of several on this board who have gotten good results with azith. What I wanted to say was that I know you are frustrated with the slow progress but you should try to reassure yourself that you are truly blessed that you have found a doctor who is willing to help you. For most of us that is the biggest battle. Please keep us updated on your sons progress. Good luck with his therapy. Dedee