trubiano

Hey Michelle! Did she mention anything to give for the ADHD that is natural? My son is having a huge problem focusing in school. Or.. is there anything anyone else has tried?

Can a regular allergist or my Ped test for food allergies? I am confused on who I should take my PANDAS son to.

I just wondered your thoughts on the new yogurts out with the probiotics already mixed in. I bought the Yoplait one and it tastes good. I could save a ton of money buying the yogurt instead of our normal probiotic.

Hi! We are using Max EPA. I am on a waiting list for the Shands Clinic in FL and I had asked what fish oil Dr. Murphy liked her PANDAS patients to be on and that is the brand they told me. My son's tics are almost gone. He is on penicillin, cal/mag, Max EPA, probiotic, and a multivit. I wanted to stop giving him an injection of his penicillin and go to oral last month. There was a 1 week window he was not on the antibiotic and his tics started to return with a vengeance! If your daughter is not taking one daily I would suggest you try that. I'm not a Doctor, but I know what has helped my child and everything I have learned has come from this site.

I just wanted to metioned something not related to the sleep issues. You had said your child licks things. My son had the same issue and when I took him to a Wellness Center they said that was a sign of yeast over growth in the gut. With in two days of upping his probiotic the licking stopped and has not returned. I just thought I would metion because our licking situation went on for months and was getting dangerous.

My son was on Bicillin LA and started rubbing his eyes after about 4 injections. When I asked him why he said his eyes were fuzzy. After I read about the Bicillan I saw that some of its side effects were blurry vision and blindness. Has your child been on the same antibiotic long? It might be worth calling your pharmacy and checking if it could be a side effect. I called me PED and was told to see an eye doc because it was not a symptom. It wasn't unitl I went to Border's and looked it up in a PDR that I found out on my own that it could be his antibiotic.

My 7 year old son only tics the end of July through the first of October. Should we see a Allergist again? We did the scratch test 3 years ago and he tested positive for grass and rag weed. They gave him Zyrtec and the tics started that next year. Any thoughts on what it could be and who we should see?

The more we talk the more upset I get! Our children are all one in the same and yet our Doctors are making us feel crazy! My son has to sleep with every stuffed animal in the house, the training wheels coming off his bike scared him from even going outside, and if there is a moth or bug anywhere around he is running and crying hysterically. One strange thing he has always been afraid of is dead flowers. If there is a vase on the table and something in it has whilted he can not even go into the room until I move it. We have tried evey sport and he just could not stay focused. He has a real problem making friends because of his strange noises and lack of "personal space". It's not a tic. He just is acting out something he has seen on TV in his head and makes weird noises and will pretend his fingers are what ever character he is thinking about. He isn't vocalizing to anyone that his fingers(or a piece of string in his hands) are really Sponge Bob jumping in the water. He will just start yelling ahh!!! and make his fingers jump on someones back. Then they think he is crazy. Very imaginative, but other kids have no idea what he is doing. I am on the waiting list for the Sands Clinic, but that could be 4-6 months. I am curious for anyone who has been there already what Dr. Murphy has told them. It would be very helpful to the rest of us to know what we should be doing now until our appointment.

I know I have seen it on here before! I've searched and must be missing it. The directions on my Cal/Mag powder says 1 tablespoon in 6 oz of apple juice twice daily. It doesn't specify between children and adults. Can anyone tell me a dose? I have a 6 year old who is 75lbs. Thanks!

What is a DAN? Try the coins for his licking. My son also did the bottom of the shoe and other GROSS things that were not good for him! It was really hard to stop yelling "what are you doing" when I would see him put things in his mouth. If my Ped doesn't change his PCN to zithromax I'm finding another doc who will. I have learned from this site I am the only one who is going to help my son cope and get some-what better. I'm also emailing Oprah everyday and asking her to put this PANDAS issue on air. It was only after 4 hours in the middle of the night trying to figure out what was wrong with my son that I found this forum. More parents and doctors should be able to get answers more quickly. I remember feeling completely lost and thinking I was the crazy one. It is so good to hear that this is really happening and there are some things we can do to help it. Thanks everyone!

My son is six and has PANDAS also. However he gets symptoms when exposed to viral things too. For example last week myself, my daughter and my mom all had laryngitis and sore throats. It was better in a few days and he never got it but he started finger cracking again. We have him on Penicillin V prophylaxis twice a day tablets only because the liquid is red 40. He did not get sick but started acting more ADHD and emotional. Also he started having the urgency to urinate. He gets some mild OCD like repeating things (right now it is WEbkinz collection) and talking nonstop. I am yet to find a Dr. who will diagnose PITANDS. They say the research/documentation is limited on it. Also the Dr. wanted penicillin because the majority of research for PANDAS lists Penicillin as the best medicine and again he goes by documentation. I also give Andrew a drop of Calm Child two-three times a day. It seems to settle his hyperness for a while. I also think he is nervous. He will also begin school soon too. I think he will have some seperation anxiety. He did not like preschool and clung to me on the days. He is so smart like a little sponge but I wonder how he will do with the sitting and following along. Plus his fine motor is behind like writing his name and numbers. I tried the Epsom baths and they helped settle him at bedtime. Also the Cod oils and probiotics and a good vitamin seem to be helping some. Hope this helps others. I guess we are going through a similar situation. You know what I hear the most from people is that he is just a boy and I am used to girls. Other people don't see it which I guess is good for him. They probably just see it as poor discipline. I wonder what the school will think. Can someone post any good school articles? Thanks, Michele I didn't know the repeating and talking nonstop was also from the PANDAS! He has been driving us nuts. If there is any little sound when he is talking he has to repeat the whole sentence. It will take him saying the sentence 5 times until he can get it out. I had a meeting with his teacher before school started and was VERY happy to hear her 10 year old son has asperger's. Not happy for her, but happy that she understands the hypersensitivity, emotional issues, and OCD we are dealing with. She also refused medications for her son. I was afraid the school would try and push that on us when his symptoms flared. Are the PCN pills very large? We have had trouble getting him to swallow pills. We are practicing with M&M's, he gets a little freaked out about it. Thank you for your post! I will look into the child calm. If there is anything that ends up helping us in school I will let you know. I'm not sure if they have it where you live, but I was made aware in Georgia they have "teams" that will get together with you and a few special teachers and come up with a plan to help my son get through classtime. If they have to sit with him to help him focus or take him to the library to do testing/tutoring they will. My son is like yours. He is a little sponge. He was in K last year, but went to 1st grade reading and math. Strange thing is he has trouble cutting on a straight line and still can not understand how to tie his shoes. Thank you again! How interesting you used the word freaked out. I asked my son why he repeatedly bends back his fingers and he said because he is freaked out! Whatever that means to a five year old. Andrew drives us nuts with the repeating phrases too. My eleven year old will cover his mouth and beg him to stop talking. Does your son stretch his fingers or bend at the knees? I find this odd but it must give him a relaxed feeling. Andrew is very emotional too. Today he has cried alot over little things. He is complaining of a headache. I've had him on time out twice because he has been mean and refused to listen. How does your son do with the diet? Andrew craves sweets. I try to eliminate dies and colors. We try to stay away from candy. He has no allergies that we know of. My mother-in-law took him Wed. and bought him alot of candy and junk food. Took him to a movie and bought him a Webkinz. He has been off the wall for two days. My husband refuses to explain it to his family. They won't even accept the ADHD. Does giving into these obsessions just make them worse. He tries to collect all of things. He just can't stop thinking and talking about it either. It goes beyond a usual interest. He finds it hard to drive by the stores that sell them without stopping to look or getting the Happy meals to collect the toys. It is nice to share with someone else.Thanks for listening. Michele It seems like our children are the same! My son just started cracking his fingers on his head. I'm not sure if it is a tic or what. He will hit his hand on the side of his head and says he is "stretching his fingers". We deal with collecting too! If he gets one race car he needs every number, webkinz.com announces the new ones coming out and he must have them all, and he got a Simpson toy this week and he has begged everytime he plays with it to go back and get more from Burger King. I also have an older son who likes to interrupt when he talks. He thinks it is funny to make him start a sentence over. There has to be something more we can do. I have not limited his diet yet. We went June and July without any major symptoms. I was hoping the diagnosis was wrong and he was back to normal. As for giving in to what they want, when this first started we took him to a psychologist and she told him everytime he felt like doing something (ex: touching the hot stove) he needed to stop himself and tell us that he wanted to do it. We give him a coin and when he gets five he can have a toy of his choice for his collections. She said this would teach him to fight the OCD urges. So far it has worked. He had an issue with needing to lick things. He would come up to us 100 times a day telling us things he wanted to lick. Thank goodness that has gone! My husband thinks I baby him and that is why he is so emotional. Who has ever seen a 6 year old laying on the ground in a crying fit not being able to calm himself for 30 minutes? So, I understand about your family thinking there is nothing wrong. They are not around enough to hear him repeat something funny he has seen on tv over and over again all week long! As for the headache I would call your neurologist just incase. When my son was at his worst it was a headache and tummy ache that would not go away that made the doctors listen to me when I said something was wrong. It could be strep again. Especially with his behavior changes. My son's MRI showed some swelling, but after all the high doses of antibiotics in the beginning it is normal now.

My son is six and has PANDAS also. However he gets symptoms when exposed to viral things too. For example last week myself, my daughter and my mom all had laryngitis and sore throats. It was better in a few days and he never got it but he started finger cracking again. We have him on Penicillin V prophylaxis twice a day tablets only because the liquid is red 40. He did not get sick but started acting more ADHD and emotional. Also he started having the urgency to urinate. He gets some mild OCD like repeating things (right now it is WEbkinz collection) and talking nonstop. I am yet to find a Dr. who will diagnose PITANDS. They say the research/documentation is limited on it. Also the Dr. wanted penicillin because the majority of research for PANDAS lists Penicillin as the best medicine and again he goes by documentation. I also give Andrew a drop of Calm Child two-three times a day. It seems to settle his hyperness for a while. I also think he is nervous. He will also begin school soon too. I think he will have some seperation anxiety. He did not like preschool and clung to me on the days. He is so smart like a little sponge but I wonder how he will do with the sitting and following along. Plus his fine motor is behind like writing his name and numbers. I tried the Epsom baths and they helped settle him at bedtime. Also the Cod oils and probiotics and a good vitamin seem to be helping some. Hope this helps others. I guess we are going through a similar situation. You know what I hear the most from people is that he is just a boy and I am used to girls. Other people don't see it which I guess is good for him. They probably just see it as poor discipline. I wonder what the school will think. Can someone post any good school articles? Thanks, Michele I didn't know the repeating and talking nonstop was also from the PANDAS! He has been driving us nuts. If there is any little sound when he is talking he has to repeat the whole sentence. It will take him saying the sentence 5 times until he can get it out. I had a meeting with his teacher before school started and was VERY happy to hear her 10 year old son has asperger's. Not happy for her, but happy that she understands the hypersensitivity, emotional issues, and OCD we are dealing with. She also refused medications for her son. I was afraid the school would try and push that on us when his symptoms flared. Are the PCN pills very large? We have had trouble getting him to swallow pills. We are practicing with M&M's, he gets a little freaked out about it. Thank you for your post! I will look into the child calm. If there is anything that ends up helping us in school I will let you know. I'm not sure if they have it where you live, but I was made aware in Georgia they have "teams" that will get together with you and a few special teachers and come up with a plan to help my son get through classtime. If they have to sit with him to help him focus or take him to the library to do testing/tutoring they will. My son is like yours. He is a little sponge. He was in K last year, but went to 1st grade reading and math. Strange thing is he has trouble cutting on a straight line and still can not understand how to tie his shoes. Thank you again!

Thank you Dedee! Are they giving your son antibiotic on a regular basis? I was hoping keeping the medication in his system would keep the strep away! I guess not. He has an injection tomorrow and I will have his throat swabbed.

My Ped discussed antibiotics with the Neurologist and the Cardiologist(first diagnosis was syndenhams chorea) and the three thought the Bicillian was best. After reading posts on here I asked again about changing the antibiotic and the Ped said that the injection worked best for targeting strep. We have another visit in a couple of weeks and I will tell her again. Can you tell me how the azithromycin should be given? Is it everyday? Thank you for the OCD vitamin ideas. I'm heading to the store tonight!

Thank you CP! My son is 6. I have a meeting with his teacher set up for Monday. I'm hoping she will be understanding, but also firm to keep him on track.

Let me first say thank you to everyone who has helped us get to the point we are at. I came to this forum 4 months ago in tears looking for answers that I was not getting from the 6 doctors we had been sent to. I won't repeat our entire story, you can click on my name to read. I have a 6 year old son who has PANDAS. I was lucky to get the diagnosis. He gets a Bicillian Injection every three weeks to help keep the strep away, I put him on Omega 3, and a multivit. After finding this site I learned about Cal Lac which was great! His vocal/physical tics are pretty much gone. His OCD, hypersensitivity, and behavior outbursts went away! Until this week... It would have to be the week before school and here comes the crying fits, the need to touch everything he passes, and the confusion. I have been prepared with articles on information to give to the teacher, but now that he is in a "relapse" what do I do?? We are blessed that the tics have not returned! The Neurologist keeps pushing Clonadine(BP med) on us. She says it will "calm" the OCD and help him in school. From what I read it will put him asleep! I'm hoping some one knows of a natural way I can help him. We just need something that will have a calming effect and help him to be able to sit and concentrate in class. Everything I read said PANDAS will come and go. We had such a great month. A little part of me thought this would just go away. One more question I have. He has become afraid of being anywhere but home. We took him to a Dairy Farm and as soon as we got there he kept asking when it was time to leave. Same with a park, an inflaitable gym, and let me tell you an amusment park(BIG MISTAKE). All these places he begged to go. It's we get there he gets really nervous. My husband thinks we should push him to get out and do new things. Are we making things worse by putting him in situations that cause stress? Again, I want to thank all of you! We need to have a big family reunion somewhere just so I can hug all of you!

WOW! This explains my son so well! With school starting soon, I think this would be a great tool in helping the teachers understand what is going on with our children. Our world has been turned upside down and with out all the advice and knowledge from this sight we would have not made it!

Hi! I have found a great brand at Eckerd Drug Stores. It is called Mega Smarts for kid's. It is a chewable that is flavored with orange. The EPA is 20% higher than the DHA which I read was better on a forum. My 6 year old didn't like chewing them because the oil stayed in his mouth so I squirt them in vanilla yogurt and he loves it. Hope this might help!

Hi Michele! I hope I might be able to finally help someone, after all the help I have gotten! My 6 year old was diasnosed with PANDAS in March. He is on a PCN injection called Bicillin LA. It is given every three to four weeks. The ID doc told us it only targets the strep virus so it was good as a long term use antibiotic and wouldn't hurt the good bacteria. I am still giving him a probiotic just incase! My son was having the same self control and emotional issues about two weeks ago. The only help the behavioral specialist could give us was the "positive reward system" We reward the good behavior with a poker chip and when he has five of them he get's a treat. I understand this is a medical issue so she can only help us learn to deal with his behavior not treat it. I can tell you we have been using a product called Min-Chex(you can google it) for about 8 days and my son is back to his normal(before the strep) self! Tics are maybe once a day, OCD gone, and only 1 a day melt down a night when he is really tired. I have taken a lot of information from this sight and have started my son on Omega 3 along with his multivitamin. I understand how you are feeling. This has been the hardest three months of our lives. With Pandas I know the behavior comes and goes, but this has been the first time since it all started that my son seems happy. We are all here for you!

His ASO in March when this all started was 297 and the DNASE was >1460. They have not tested again. How often should I have this tested? My Ped told me that the injection we are using Bicillian LA is a PCN that only targets the strep and won't hurt the good antibodies. He also gags everytime we have tried pills. We are practicing with swallowing M&M's, but he still is having a hard time. I am on a waiting list for Dr. Murphy. To be short about the diagnosis of PANDAS: He was first diagnosed with Sydenham's Chorea by his Ped. The Neurologist disagreed and said PANDAS. I just had my other son tested due to many Strep infections and his ASO was 174 and is DNASE was 960. They are having him see ID. I just wonder if I should start him on PCN also. He did have a neck and arm tic last August that the Ped said was just nerves. It went away after a couple of months and we didn't think anything of it until now. I just had them look back and he had positive strep culture 16 days before I took him in for the tic. Thank you for all the great support. I do not feel so alone anymore!

I have a neighbor who is a chiropractor and owns a wellness center. He told me to use Min-Chex to help with my son. He said it will help with the tics and calming the OCD. Has anyone tried this? I read up on it and it sounds good.

After seeing a pediatric neurologists for 4 years for my five year old son PANDAS I have finally gotten a prescription for penicillin v liquid twice a day for 3 months. He finally was tested by an immunologist for titers and strep bloodwork and tested borderline elevated. I feel happy they are trying something as his emotional state and hyperness has gotten worse recently. I am getting nervous about kindergarten and his behaviors. Has anyone had success with penicillin long term? The Dr. did not seem kowlegable on azith. At least it is a starting ground. Michele Wow! My Ped told me my son had to have the PCN injections until he could swallow pills. I can't wait to ask about the liqid PCN. Thank you for that info! If you go to Google and type in PANDAS NIMH click on the first website and then click on recent publications the first publication that comes up is all about azith vs pcn you can bring to your doctor. I'm going next week and talk to mine about it. I'm also worried about school next year. Do we start the year off telling the teachers and draw attention to my child from the start?

Thank you Kim!! So many more posts I haven't read!!

Cheri, Thank you for the great information! Your post says Dr. Murphy is in Georiga? Is that correct? I could not find an office other than in Florida. I have read I think all the posts and feel so much better. I am going to try the fish oil, vitamins, and diet changes. I also can't wait unitl Monday to try and get my son an appointment with Dr. Murphy. Can you please tell me what the dosing is for Zithromax? Do they take it daily? I was wondering if he still has strep growing somewhere because the way his OCD/behavior comes back close to his next injection time. Do you think I should push getting more blood work? We did the Titer back in March when all this first started. He was put on Augmentin for 10 days and then the strep was still there. They gave him the PCN injection and then two weeks later he spiked a fever and the strep was again positive. They gave him another PCN injection and so far the throat culture has been negative. We have passed the point of being scared and now we are trying to find out what the right treatment is to help control and maybe even get rid of this! Thank you again!

Faith, Thank you for your post! Our story is so long I didn't want to bore everyone. The short version: My son was diagnosed with Syndenham's Chorea by our Ped and then sent to a Neuro and Cardiologist. Luckly no valve damage and the Cardiologist started him on the PCN injections. It wasn't until all the OCD/behavior issues started that I had to get my son's medical records to bring to all the new doctor's appointments that I saw that the Neurologist had the PANDAS diagnosis on his chart and not the Syndenham's Chorea. When I questioned it he said he believed the tics where not Chorea, but from the strep infection. He also doesn't think he needs antibiotic. I have not told this to my Ped in fear they will stop giving it to him. We are doing the injections because my son has not mastered swallowing a pill and when I asked about a liquid my Ped told me that was not an option becasue he needed a long lasting PCN. As for your your question about how bad the OCD and behavior is.. It comes and goes daily. He can wake up one moring and we will think GREAT this might be over. The next day he has a vocal tic with not a very nice word, opening doors(including car doors) three times, having to lick anything he touches, crying/screaming spells lasting 20-30 minutes, and just this week nightmares have started. We live in Georgia, and our Neuro works out of the Children's Hospital here, but had no one he knew of to refer us to that worked with PANDAS patients. It's just frustrating going from specialist to specialist and they have no answers other than "Let me do some reading on PANDAS and get back with you". I guess my main questions are 1. Will this last forever? 2. Who should we see to manage his care? 3. Tonsils out or not? 4. How do we help him with his OCD/behavior once school starts? I'm at home with him so I can keep up the positive reinforment we were told to try, but will the teachers be able and willing to help? Thank you again for replying to me. I am greatful for any advice!