blakes_mom

My ds is on zithromax 250 mg 3 x per week. When he flares we use Augmentin 875 twice a day. Ds is around 65 lbs. If I have my way I will keep him on antibiotics for strep prevention because the 3 rd episide was really difficult and harder to treat. I do not want to risk another strep infection and this turning chronic. He has had no problems with the antibiotics that he has been on for about 1 year now.I agree that the blinking thing is a tic as this was my ds 1st symptom.

The tics that ds was having that cleared after surgery were eye blinking /winking,head knod and a humming tic.

How has your DS10 been doing since then, has he been able to hold his own? Glad the surgery helped. My ds has only had one flare up of tics since surgery when he was diagnosed with an ear infection.He was put on Augmentin and he cleared up within about 2 weeks.

My ds 10 had his tonsilectomy/adenoidectomy in April and recovery was a breeze.Seriously he was shooting hoops the next day. Pain was well controled on tylenol around the clock.He was given steroids and iv antibiotics during the surgery and was kept on antibiotics afterwards. It cleared my sons tics within 2 days after surgery.In addition his appetite improved and also improved his allergy symptoms.

Dr.susan schulman is a pandas treating dr from new york and she spells out a nice pandas treating protocol. You can find it at drmdk.com,then click on pandas and search for pandas treating protocol. My son had tics very similiar to the patternn that you described. He would stop ticcing but then when we stopped antibiotics he would start back again. He has been on antibiotics since sept 2011. Tonsilectomy and adenoidectomy were helpful with his recovery.He is now on zithromax three times a week, but needed stronger and longer antibiotics when he would flare.

I found 2 treating physicians in your area.They are Dr.Agustin Legido at St.Christophers ped assoc and Tamar Chansky both in Philadelphia.You may also want to post on the pandas forum for help finding a treating doctor in your area. There are other illnesses that can cause pandas so there are many things to test for.Pandasnetwork.org has a section on helpful labs. I would focus on finding a knowledgable treating physician in your area as a first step.

Most kids are diagnosed by symptoms alone.In my sons case his strep antibodies were extremely elevated telling us that he had a recent untreated strep infection which triggered the pandas symptoms. Sometimes the other symptoms are so mild you dont really notice them. My sons first episode was mainly tics, but now that he has had repeated episodes I am noticing other symptoms also, such as fidgety,slightly anxious,(chewing on shirt,biting nails) more tempermental ect. The treatment that has worked for my son has been antiobiotics. The first 2 episodes were quickly halted with bicillin cr an injectible antibiotic. The 3 rd episode has been more difficult but he is currently tics free after a tonsilectomy and adenoidectomy along with long term antibiotics.I will warn you that it is extremely difficult to find a doctor that is familiar with this and willing to treat. Let me know if I can help in any way.

My son had the same exact symptoms(blinking,head knod,looking sideways ect. He was diagnosed with pandas. Pandasnetwork.org will give you some good information on this diagnosis.

Penicillin vk 500 3 x a day worked for quite a while,Biaxin i think it was 500 twice a day, and probably the best one was Augmentin 875 twice a day.DS 10 weighs about 60 lbs.Tonsilectomy and adenoidectomy have also been a big part of my sons improvement with tics. He is now on zithromax 250 three times a week for maintenance.

My son just had his T & A three weeks ago. He went back to school a week later. Luckily my surgeon is knowledgeable abour pandas and had my son on iv antibiotics during surgery and augmentin after surgery. My son is now on zithromax three times a week for strep prevention. By the way 2 days after surgery his tics were gone, the surgeon thinks the strep was hiding in his adenoids. In my opinion if your child is having symptoms of pandas/ pans and still have their tonsils and adenoids I would seriously consider this surgery.

My son also had a tsh of 4 or five i think which is a little high but his other thyroid antibodies were in normal range,so the doctor just had us check it in a month. When we checked it a month later it was back into normal ranges. For some reason I think pandas affects this test when they are in a flare.

Please look into the diagnosis of pandas. My son had a sudden onset of tics,(blinking,winking,humming tic) and was diagnosed with pandas. Please research it and let me know if you need anything.

Our pandas friendly immunologist put my ds on allegra,nasonex and saline nasal washes with good effect for allergies.

My 10 year old pandas son had his tonsils and adenoids removed 1 week ago. It was recommended for him 5 years ago but I kept reading that the tonsils were protective and so we never did this until now. He has done great with this surgery. Not only are his tics gone( 2 days after surgery) but his appetite is better and his allergies seemed to improve also. He did not have very much pain with this. I dont know if this will be the final chapter in our pandas story but for now I am happy we did it. The surgeon thinks his infection was in his adenoids. IMO I would have the tonsils and adenoids removed.

We dont even have a pediatrician,as I cant find one that has even heard of pandas in the midwest. We see a regular family practice physician that is willing to learn about pandas.The immunologist that we see in Omaha suggested he be evaluated by the ENT doctor. Due to chronic elevated strep antibodies,large cryptic tonsils and quite a few strep illnesses when he was young he was approved for the surgery. It sometimes is approved also for snoring and mouth breathing.

My ds 3 rd episode started in september so about 7 months. The surgery was not bad at all, i thought i would have to watch him be in pain after surgery but he did great. He was only given tylenol extra strength after surgery and was shooting baskets outside 2 days later. Make sure if you have it done that they take the adenoids also. The ent doctor suspects that this was the source of my sons infection. He was also given iv antibiotics during surgery and augmentin after surgery. My doctor is not one of the pandas experts but he is on the list as a treating pandas doctor.

Concerned mom, Thanks for asking and yes he is still about 98% tic free after his surgery. He is doing great and looks heallthier than he has for a long time. If this doesnt last I would certainly consider ivig as i feel that it is a safe procedure.

Miss Mom, I just had to respond because your story sounds just like me. I have lost weight,worried and definately read too much on the internet about pandas, but i also feel like i need to know everything i can to help my son. My 10 year old son is also in his 3 rd episode of pandas and has alot of the same symptoms as your son(blinking,head knob,fidgety ect). Our 1 st 2 episodes were quickly relieved with antibiotics. His 3 rd episode has been much more difficult. I believe my sons problem is also related to strep as his blood tests for strep antibodies are always high when he has a flair.We have had good results with Biaxin,penicillin vk,zithromax, and augmentin,but they need to be in high doses. Our biggest help in the last week has been having his tonsils and adenoids removed. Does your son still have his tonsils and adenoids? Within 2 days of his surgery his tics are 98 % gone. I dont know if this will continue but for now I can breathe a little easier. I always thinks of this as a battle and if 1 thing doesnt work we always have other things to try.(steroids,ivig ect) Good luck with your son.He is so lucky to have a mom who is smart and ready for a fight.

My son has also been struggling with tics for the past 6 months. We have been on several antibiotics with improvement,but the tics kept coming back after about 3-4 weeks on an antibiotic. The immunologist that we have been seeing for pandas recommended a tonisillectomy and adenoidectomy,his tonsils were big and cryptic so this was an easy decision. My immunologist has been talking alot about biofilms where the strep bacteria is able to hide and has a shell around it,so it is difficult to get rid of it with antibiotics.Well any way on Tuesday he had his surgery and the results have been amazing.The tics 2 days after surgery are 98 % gone.He also started Augmentin after surgery so that could also be helping too. The ENT doctor that did the surgery who also is familiar with pandas told me that the adenoids looked like they had a film on them and he believed this could be the source of my sons infection. I hope and pray that this will finally be the answer for us. Good luck with your son and let me know if I can help in any way.

Please look into the diagnosis of pandas.My 10 year old son had these symptoms(blinking tic and biting his upper lip) and he has been diagnosed with pandas.

My son does not have any ocd sx that we are aware of.Yes I think the whiste is a tic.I just saw a story about this on tv the other day about a young boy who whistles all the time and he was diagnosed with tourettes. It sounds like your grandson has all the signs of pandas/pans. I would find a pandas doctor to evaluate him.

Well Fixit I just wanted you to know you are not alone and I agree with you. I feel that leaving tics out is a huge mistake. We are going to miss a lot of kids because of this political maneuver. Of course my son is primarily a ticcer too. He is already diagnosed so I am not worried about him but I know that there are a lot of pandas/pans kids with tics as there primary symptom and they are the ones that will suffer.

If the rash went away in an hour it is probably not a true allergic reactiion to the medicine. I would continue the medicine.

They usually use 2 swabs for these tests so it is possible that they did not get a good specimen for the throat culture. If the rapid is positive I would consider that strep.