Topaz1968

Hi - yes, he was actually diagnosed with Pandas as well and was treated with Antibiotics for several years. I recently took him off of them based on a decision made by myself and some doctors. I think he can get worse with the addition of any infection, but the doctors and I agree that the other issues are separate from Pandas. It has been a long road with ups and downs and a lot of different issues that come and go. It is very difficult to diagnose him with anything specific due to the fact that he has a little of everything but not a lot of one thing - if that makes sense.

My son is 12 and was diagnosed with TS when he was about 8 years old. They have waxed and waned over the years and it is never severe, but recently, they have gotten a lot worse. He never really had a vocal tic, but now he has one where he sounds like he is making a "farting" sound with his mouth. (sorry, but I don't know how else to describe it). It is far worse when he gets home from school, since I think he tries to supress it most of the day. We recently got into a program at Yale, and they told us about Habit reversal therapy. I was curious to find out if anyone has tried this with their child and if it was successful. He also has some anxiety, depression and OCD, so they were also thinking of trying out some meds, which I am scared to do, but I do think it might be necessary. I have read about how, in most cases, the tics increase during puberty and then seem to get better. I am sure he is starting puberty and I always thought his tics were worse when he was going through a growth spurt. I would love any feedback Thanks

MY DS11 has similar symptoms as yours. Speech issues, OCD, some mild anxiety, social issues, sensory issues, intermittent vocal and motor tics etc. He, too, is moving on to middle school next year. I have tried probiotics twice in the last year for trials (once for about 3 months then for about 1 month) and both times his ticcing got worse (probiotics that DID NOT contain Strep strains). Ticcing improved going off the probiotics. I made a direct cause and effect relationship (twice) thus I am not a big fan of probiotics for my child. Your son does seem to have diagnosis all over the map? Personally, I think PDD, NOS is a junky diagnosis, however, I am a big believer in that the school can write down whatever they want to as long as it it helps my son get the services he needs. I have told them my DS!! has PPDFED- Purple Polka Dotted Flying Elephant Disease!!LOL:) Which is as good as what any of the high paid specialists have come up with. He's unique, he's one of a kind, they have never met another child like him...after 7 years, 100's of doctors, lots of testing, lots of conflicting opinions etc- I really just don't care what they call IT- whatever IT IS. They know he needs an IEP, he needs services and he gets it. His IEP is based on OHI. He never fit well into any of the common 'boxes'. They, too, said at age 6-7 they thought he was PDD, NOS but he was ADOS negative when tested- not on the cut off for Autism spectrum for any of the 6 cut off areas so they had to withdraw from that diagnosis. Going to Neuro for guidance seems like a good idea. With prior history of TS- I'm guessing that this has not been decidedly a correct, lasting diagnosis?? What about something more generic like Tic disorder (which often includes OCD, anxiety etc).A neuropsychiatrist may be helpful in interpreting testing and forming a better diagnosis and treatment plan also?? They typically recommend without actually prescribing. My son knows he is different also--he does not seem to be too bothered about this. Remember, this is the only life they know. This is their reality. They have nothing to compare it to... to note a difference. I, too, am worried about move to middle school with teasing, bullying etc. But, move on he will and we'll take it one day at a time....just like we have done the last 7 years. My son takes Lamictal-for previous abnormal EEG, although he has never had a seizure. This medication has proved useful for other parents with their children with PANDAS, anxiety etc. He also takes Prozac which helped the OCD behavior. He has been on it for nearly a year with no adverse effects. We have tried Intuniv in the past and Clonazepam without much success either. Prozac and Lamictal combo has been the best so far (for us). I have tried various supplements in past---none that have made a huge differences. Diets- he is so OCD about food choices that I have just not had the stomach to put he or myself through the torture. Although, I'm sure dietary improvements would make a difference. Good luck with whatever you try and do. 911RN - I love everything that you wrote - it fits my son to a "T" - I especially love the diagnosis of PPDFED - I think I will tell my school about that one I was thinking about Prozac for his anxiety and possible depression, that might be a next step for us. I found that certain meds made his tics worse, so I am wondering about the probiotics - it might have the same effect as it did for your son. I agree that PDD-NOS is a huge umbrella diagnosis. It is what they want to call the kids who they just can't figure out. My son's first listing on his IEP is also OHI, and the PDD is the 2nd one. I also agree that if it gets him the help he needs, I am fine with it. I have not told him any of this because the one thing he tells me all the time - "Mom, I am not Autistic". And, this is only from being around children he knows are Autistic. He is actually friends with some of them, and he did not even realize they had the disorder, so I am not sure he even completely understands. I think I am most worried about his anxiety and depression. If we can get that under control, I think that would get us at least 50-60% of the way to where we need to be. Thanks again

Thank you TwoSocks and Ozimum Twosocks - I hope you find the info you need as well. Hugs to you and your son as I know exactly how you feel. I think because Pandas is such a new and sometimes controversial diagnosis, it is very hard to find concrete information about it. Still trying to solve the puzzle!! Ozimum - I was thinking of trying to find a DAN doctor, but I was not sure exactly what they do, so I am glad you explained it to me. My son was tested for food allergies, but not found to have any. However, maybe there are some vitamin/mineral levels that are off. I appreciate your time

Yes, I did want it in this forum as I thought PDD-NOS is a form of Autism. If you think there is better thread for it, that is fine. Just not sure which one. Thanks so much

My 11 year old son has had the gamut of diagnosis's his whole life. It started with speech delays, and then lots of question marks from teachers. No one could ever put a finger on what was "wrong" with him. There was never a clear cut diagnosis until a few years ago. He started having tics in 1st grade and they continued off and on for over a year, so he was diagnosed with TS by a Neurologist. About a year later, he started to have Obsessive thoughts and other anxiety issues, along with hives. Not sure if the hives were ever related, but the OCD behavior was then diagnosed as Pandas from Dr. B in CT. He had blood work and it was confirmed by his results. He was put on Antibiotics and still takes them today. Starting last year, in 4th grade, there were some observations done in school as he was still having some problems socially and a little bit academically. His grades were great, but he needed a lot of support. It carried over to this year, but the change in teachers was not helpful. We had an amazing teacher last year and a not so amazing teacher this year. After some more evaluations from the school - they told me that they felt he had PDD-NOS. I agreed to have it put on his IEP as a secondary diagnosis. I do want him to get the help he needs, but I am not sure how much I agree with the diagnosis, since I have not had any more testing done outside of school. He does have a lot of social issues, and is extremely sensitive and full of anxiety. I do see some traits of the disorder, but since there seem to be so many things going on, once again, I can't get a clear cut answer. The pediatrician and the Pandas doctor don't necessarily agree with the diagnosis, but they don't see him that often. Here is my dilemma. I have been reading so much about trying different diets, etc. I have also read about different medications, which we have tried a couple (tenex and clonazapem - both without success). But, my head is spinning from reading so many different approaches, I don't know where to start. He sees the social worker at school a few times a week and he goes to OT outside of school every other week. The insurance will not pay for it, so that is all we can afford right now. I am trying to get another appt. with the neurologist to get some more advice, but I am not sure what else to do. Should I start him on some Probiotics? I have some, just never gave them to him. Should I try something else? I am so confused right now, just need some advice from maybe someone in a similar situation with a child in the same age range. He knows that he is different but he does not know of any official "labels" as I don't want him to get a complex. He is going to middle school next year and I am mortified about him being teased, etc. Any advice would be greatly appreciated - thanks

Well, he was diagnosed with TS after having tics for over a year, that started in first grade. The problem is, I don't remember him having strep anytime right before then. Anyway, I brought him to a neurologist who diagnosed with the TS, but it was fairly mild at that point and would come and go. Pandas will still very new, so my Pediatrician did suggest ABX, but he was only on them for about 10 days. It did not do anything to help. My father is an immunologist and a friend of his told him about the Pandas. That is when I found Dr. B. We are lucky to live only about 1/2 hour away and after my son had blood work done, the strep titers were through the roof. The neurologist still calls it TS and Dr. B says it is not TS. His tics never go away completely - so I am not sure what to think. It is kind of a guessing game as far as I am concerned. We did try Tenex, but it did not work, so we decided not to go the route of medication for right now and see what happens. He is still on ABX, and we are going to see Dr. B in a couple weeks - so hopefully he can give us some more suggestions. Well, the steroids made his tics worse at first, but I do think it helped clear up his sinuses a lot which allowed the antibiotics to work properly. Dr. B told us that the abx will not work if his nose is inflamed. So, that is where it did help. I have also heard of steroids making things worse, but it could be due to herxing - that is what I was told by some other people. Honestly, I did not keep him on as long as the doctor wanted. My pediatrician felt like it was too long for my son to be on steroids, so I started tapering after 5-6 days. It is really hard, because you are dealing with so many doctors, and they will all tell you something different. I don't know exactly what is going on with my son, I just wish he would get better. Right now, he is doing great, but that could change at the drop of a hat. My father is an immunologist, but not really familiar with this condition, however, he has a lot of connections So,yes, that does help. I do think that because people and physicians are just learning about this condition, there is still so much to be discovered. I am just glad we did find out about it now. Good luck

I know how you feel - it is so frustrating to watch everything fall apart. So sorry you are in a bad place right now. You were very brave to extend apologies. I had not noticed anything, and from the sounds of it, no one else really did either. It is completely understandable to be angry when all is going wrong. I truly hope things get better for you and for all of us. It is lonely and I don't know where I would be without this group, because I get absolutely no support from my Husband, so I kind of know how you feel. Good luck Rachel

Well, he was diagnosed with TS after having tics for over a year, that started in first grade. The problem is, I don't remember him having strep anytime right before then. Anyway, I brought him to a neurologist who diagnosed with the TS, but it was fairly mild at that point and would come and go. Pandas will still very new, so my Pediatrician did suggest ABX, but he was only on them for about 10 days. It did not do anything to help. My father is an immunologist and a friend of his told him about the Pandas. That is when I found Dr. B. We are lucky to live only about 1/2 hour away and after my son had blood work done, the strep titers were through the roof. The neurologist still calls it TS and Dr. B says it is not TS. His tics never go away completely - so I am not sure what to think. It is kind of a guessing game as far as I am concerned. We did try Tenex, but it did not work, so we decided not to go the route of medication for right now and see what happens. He is still on ABX, and we are going to see Dr. B in a couple weeks - so hopefully he can give us some more suggestions.

Nancy - thanks so much for the wonderful information and advice. I really do not want to medicate him, as we have tried a couple in the past without any success, but it also makes me extremely nervous. I think I want to know that if he is having mood swings, it is not from a certain medication. I think I will hold off as long as possible. He is currently seeing a therapist who specializes in CBT but not ERP. I am going to talk to her about it, because I really like her, but need to look into the ERP. I will definitely start to try and introduce some nitrate-free food. It is funny, because I thought about nitrates long before he was diagnosed. He loved Salami growing up and would eat it every day, and also loves hot dogs. I know both of these contain nitrates and I also craved them when I was pregnant - funny, huh He always used to be a very healthy eater, but as he is getting older, he is really enjoying the "junkier" kinds of food. I really like you explained the familiarity of being home vs. school. I never really thought about it that way. My son also said that even though he is distracted, he still gets good grades. This is true - he got all A's and B's last year. We will be having a 504 meeting, hopefully next week, to update his current plan. We are really lucky that we have an amazing support system at his school. I am very involved and I am also a substitute teacher in the school system, so I know a lot of the people. I think communication is very important - so hopefully that will help out this year as well. I was not sure if the ADD was related to the Pandas or not. He was evaluated several times for ADHD and was never found to have it - so it could just be part of the exacerbation. Thanks again. Rachel

Thanks so much for all the great advice. DC - we did a reward system over the summer and it did help a bit. I hear you completely about giving in to make things easier. Unfortunately, I am totally guilty of doing this over and over again. I am such a peace maker and I want things to be calm, that I give in a lot. I need to stop doing this because I am sure it is not helping. As much as set guidelines, I am not good at sticking to them. My next plan is to make a chart that includes daily goals, including taking medicine. If he can fill in all the boxes - he will earn something at the end of the week. This is sort of what we did over the summer. I know that he is getting old enough to figure out how to manipulate me if he needs to. But, sometimes I do feel like I am walking on eggshells and when I get angry at him, he can't handle it. Unfortunately, my husband and I are not always on the same page, so this makes things more difficult. Yale has a program for OCD, but it does not take our insurance and costs quite a bit of money. I am looking into some more therapy to see if I can find someone to help with ERP, since his current therapist is only doing CBT with him, and does not specialize in the ERP. We have tried liquid antibiotics and he hates that more - will have to find out about the chewables. Not sure what will be best for him at this point. What is PEX? I am not sure I know. I may try the steroids again, since that did seem to help before. Smarty - that is a good idea to kind of meet halfway - I try to do that sometimes as well. He will go to school, but complains a lot about it. His biggest thing is that he just wants to stay home and play all day. His mind is always going and he is distracted at school. I am wondering if there is a little ADD there. Has anyone tried medications that work well for these symptoms? Thanks again

My DS is 10 and just entered 5th grade. He was diagnosed with TS and Pandas about 1 1/2 years ago. He has been on Antibiotics (Augmentin) off and on during this time, as well as 2 trials with Tenex and 1 trial with Clonazapem. He has also had 2 steroid treatments. He sees Dr. B in CT. He does not like taking pills, I literally have to force him and give him a treat afterwards, so it has been hard with the huge ABX pills. I also want him to take Motrin - but he refuses. Again, the taste bothers him. I am sure this is part of his OCD. His OCD, anger and tics come and go in waves. I never know when to expect them. He recently had contact with someone who had strep, but immediately went back on the ABX. I am trying to get him a different pill that might be easier to take, but we need to see the Dr. first. He goes to therapy 2 times a month for CBT and also sees the social worker at school. He currently has a 504 plan that I am going to have adjusted slightly this year. Anyway, here are my questions... He is a super fussy eater, and I know there are certain foods he should not eat and foods that might be better for him. He does eat fruits and veggies, but other than that - he is a big chicken nugget and hot dog eater. Any suggestions as to where I can find some dietary information? Is there something other than Motrin that might help - or does it come in a different type of pill than the orange one? Is there an antibiotic out there where the pill is smaller? Any thought on how to help control his OCD and anxiety - either with meds or therapy? His OCD is not that he is afraid of things - he just likes to have things "perfect". I am thinking about finding a Child Psychiatrist that can prescribe medications. We have not thought about IVIG as I am not sure that is the route I want to take. Thanks so much, in advance, for any advice you could give me. I have researched and researched and I am utterly confused right now. Rachel

My son did get hives last summer, but not sure what caused them. After taking him off all meds, they did not go away. It is possible that the antibiotics started it, he was on Augmentin. But, to be honest, they just got worse and worse and he was on Benadryl for a while. He was tested and nothing came back positive, so the doctor finally said it was from exerting himself, but I am not sure if that was it or not. Luckily, he has been on Zyrtek for about 4 months now and it was a life saver - no more hives or anything. I wish I could help, but it is strange that we both ended up with the same symptoms in our children. Good luck - try Zyrtek if they continue - it works great

Great link - thanks for sharing - I just sent the link to my son's school social worker, teacher and nurse.

I have one somewhere. It is from the Neurologist. Usually doctors do have them. Did you ask the doctor? It does not have to be anything really formal, just something the school can see that shows a medical diagnosis and that your child may need certain accommodations, such as longer test times, leaving the room to take a test, etc. Do you know what you would like in the 504 plan? It may also help to ask the school for a form, to see if the doctor can just fill it out. I do have one, if you want me to scan it and email it to you - just let me know. Rachel