bmom

I just got a letter from my daughters preschool that they are going to kick her out if she doesn't get current on her shots. Can you please tell me if there is a way around a preschool and if you believe that your childs tics began from a shot, which shot? Could you tell me what shot it was that you think began it all? Was it multiple in one day or just a single?

I have thought that too as IVIG can actually cure allergies. So, even if tics were not based on strep, but allergies, could it help as well? It is the digestive process I am looking into. The things I am finding is that it can help with digestion, but this is not for sure yet.

Just some info. to add to the pot. My husband has mild tics. When my son had a dramatic onset, I somewhat ruled out PANDAS for whatever reason because of my husbands situation and because we had seen a few minor tics in my son before. Anyway, I spent about a year trying to nail down if my son had PANDAS or Tourettes. I have had his titers tested many times always in the normal range. We check every month or so and they are going down from his second episode of what I believe to now be PANDAS. They were normal, yet declining anyway. So perhaps what Buster explained fit my son. He responded to antibiotics at first. His pediatrician would only prescribe a 10 day dose here and there and he always seemed better. Well when we finally found a doc. to prescribe propholactly, they aren't working as well. (6 months after episode). Although they seem to reduce quite a bit, the symptoms still wax and wane following even a small cold. We had our second phone consult with doctor K and I posed the question as to whether my husband was PANDAS as an adult. He said did he have fears? We think so although his mom has passed away. He is claustorphobic now so yes, probably. That is a good indication. We have decided we will probably go with IVIG and I asked Dr. K "What if it is Tourettes and not PANDAS?" He said he is not so sure they are separate things. So, maybe we have different triggers (some shots, some illness like strep throat), but perhaps it is not completely separate?

Just to let you know, there is a doctor right there in Chicago that seems very knowledgeable in the PANDAS. It might be worth it to meet with him. It is Dr. Kovecevic. Website is www.webpediatrics.com.

Yes, as I was reading your post, I was thinking- if only my son's pediatrician was like yours, maybe I wouldn't have had to go through fighting for antibiotics etc. Be thankful for the pediatrician for not only being so smart, but thorough!!!!

What a great friend you are! First, I would check into the possibility of PANDAS. It sounds like a classic case really. Do not rule it out even if he does not come back with blood test elevated or negative culture. Please take a look at cases on www.webpediatrics.com. This doctor seems to have more knowledge than most and will do a phone consult for $300. It may give you direction. (or your friend).

Tetrabenazine has just recently been posted about with good results. I dont know what category it falls under, but it is now FDA approved. Thanks for us who like to be informed and keep our options open!

Sorry no one has helped on this. I hope they do, yet I am not sure many have gone through IVIG yet. I can tell you I have spoken with some and a fever and some vomiting seems to be normal, but not bad. Please keep us updated as we are considering this route.

Thank you all for your replies and guy 123 for a few laughs- which seem to not happen much around here lately. My son was on Amox. for 3 months. It did seem to help and we were finally down to no tics until he got just a simple 3 day cold. Now we are on week three of this silly coughing tic- ugh. We switched to Azithromycin 2 weeks ago- not sure if it is helping. My daughter was on Amox. after removal of tonsils. I dont know what to think of the pee thing. It just worries me as my son has done this before and I sure dont want to have to go through these things with her!!!! We have another phone consult with Dr. K this week. I guess I will run it by him.

My son I believe to be PANDAS. There have been 3 times that he has had this need to urinate frequently (every 3 seconds or so). The first time was in the day and he was back and forth. I took him into the doc and he was positive for strep. It stopped when he started antibiotics. The second time he was on antibiotics to see if it could alleviate tics. During this time he came down with a sore throat, fever, etc. I started giving him Motrin for fever. He was negative for strep and still on antibiotics. During this time, one night right as he was going to bed, he started doing the urinary thing again. It was only one night. Then, when he had his tonsils out, on antibiotics and Motrin for the pain, not sick, he did it again before bed one night. I started to wonder if it was the Motrin causing it as he has been on antibiotics before and since and not done it. Anyway, now I am worried about my daughter. She has done this before bed a few times. Hers does not last hours like my sons. There have been times when she would go 3 times in a row and then settled before bed. It was one right after another. Last week she had her tonsils out due to trying to be cautious as I do not want to have to go through the PANDAS thing again. The ENT said her tonsils were large and looked infected. She had them out last week and placed on antibiotics. The culture came out that they had Staph in them. Twice this week before bed, she has had to pee a few times before settling. She says it tickles. She will pee 2-3 times and then go to sleep. This was while she was on antibiotics so I dont think it is a bladder infection. I am praying it is not PANDAS. Could it be something else. When your kids go through the frequent urination, is it only at bed time? Do they feel a tickle or no? My son said when he had this, it is like the peepee shivers. Any thoughts? My daughter doesn't seem to exhibit other symptoms like my son does (tics). but she is only 4. She has not been on Motrin and it has been several days since she took the pain meds. Has anyones children done this before bed and it not be anything -Pandas,etc?

I do find this conversation very interesting as I have flipped it inside my head many times trying to find the direction in which to take my sons treatment. If I had all the money in the world, I guess I would have all the testing done. I have looked into the Alcat which I believe runs a little over $800. I am still thinking it over. I have done the elimination diet with no success. My son seems to fall into the PANDAS section more although to be honest, he also seems to have signs of everything from Pyloria, food intolerance, to light sensitivity. Anyway, I once spoke to a doctor who said these kids get hit with an infection or virus or vacination which then sets things into motion and disturbs the digestive process. So, I have always thought which comes first? Kind of the chicken vs. egg scenario. We have had more success with antibiotics so I am taking that route for now and considering food intolerance testing and also milling around IVIG. I am wondering if IVIG would take care of all of these issues- food, infectons, etc. It is expensive, and controversial I understand all of that. Anyway, I am also trying to figure out how to keep my daughter safe from all of this. So, it is great to have these discussions and I find it wonderful that moms are very passionate on this. I just wish the docs could figure out how all these pieces fit together. I know it has to be related. If you look at Autism: the MMR possibly sets things into motion and then the diet helps. So again, there is a trigger. Thanks to all the moms that take the time to post what has helped.

Eamom, Have you always given probiotics with the antibiotics or never or started later? Thanks.

EAMom, Can you tell me if one round of the Azithromycin cleared your daughter of the carrier state or did it take more than the 5 day course?

He is on 600 mg a day. He is allergic to many pollens and trees. He also just started football so this could cause his allergy reaction. I just feel better if I can get him on probiotics. I am so nervous to rock the boat though. I emptied some of my mailbox Kelly. Did Dr. K say which probiotics to use? Thanks.

I am going to the vitamin store today. Any ideas on great probiotics? I think I will look for S. Bouldi (spelling ????) only.

I was just wondering what you PANDAS moms do about probiotics? Are your kids fine on them? I thought before that my son did not do well on them, but he is on daily antibiotics so I am afraid to not give them to him. I am going to try them again, but I was wondering what you do if your child reacts. He is on daily Amox. Would Amox be one that causes yeast or is it mild? He has been having major allergy problems and I was wondering if that was because he was getting yeast and if I should start the probiotics again. Thanks all.

Eamom- Did you have either of your children's tonsils and adnoids removed? We had my sons (PANDAS) removed. My daughter has been swabbed neg., but upon seeing an ENT, he said her tonsils are large and possibly harboring strep. We are looking at removing hers as well. (She is only 4 so I am debating, but want to be thorough).

Thanks for the details. Did your daughter improve on the Amox. at all? My son has been on it for 6 weeks and although his symptoms have improved, he still has anxiety, separation anxiety, and tics. I am thinking of switching. I am not sure if I should wait it out and see if it resolves or go stronger.

I hate to be repetive, but is it really as easy as requesting a form to decline vaccines? Do you all claim religious reasons? I just heard my sons school district is demanding chicken pox vaccine this year within the first 2 weeks. No thanks- I believe we are good!!!!

I just had to say that I am so glad that you found something that is working. How strange it is that the tests came back abnormal and then normal. It seems like there was definately some sort of intervention that made the doc. try this specific drug. I have often been feeling like you with taking everything away from my son. I am now headed down the PANDAS route and hoping that we will find success there. My poor son has not watched tv or done videos for months and believe me, if that solved the problem 100% I would continue. It seemed to help, but no cure. Anyway, I started thinking that quality of life is suffering and considering going the med route instead. I then began to pursue the PANDAS more again and I am hoping this will be our "topamax". I think what we have seen on this board is that everyone wants what is best for their child. That may be different for each person. Good luck and thanks for taking the time to post. For me, every piece of info. is important. I keep notes on what worked whether that be meds, supplements, etc. And each success makes me happy.

To me he did not. I forgot to ask and we took up most of the hour discussing my sons history. I know to the other mom I discussed, he said Vit. C, Vit. B, Fish Oil, probiotics, and a few more. I think E. Anyway, I dont know if the IVIG makes you nervous, but he is very thorough and discusses these too. I was very unsure of them, but it doesnt sound as bad as I thought. He says that it retrains the immune system and repairs nerve damage. Some times the antibiotics do not control the syptoms enough.

The phone consult was helpful in many ways for me. I was still trying to decide if my son was PANDAS. I had one doctor saying no, but she was basing this on titers only. Dr. K confirmed my suspicion that it was PANDAS. As far as treatment, he can not prescribe with the phone consult. I expressed my concern about not being able to find a doctor here that would prescribe and he said "Find one!" Of course he could prescribe if we went to Chicago, but he never even mentioned or pushed that. I was the one who brought that up. For us, it was his vast knowledge of titers, behaviors of PANDAS kids, etc. that has seemed to be right on. My son has seemed to follow what he said would happen in his experience. Since being on antibiotics, the tics have mostly teetered off, but the separation anxiety seems to be hanging on longer. I have also found him to be very good about returning emails promptly. We only had the one phone consult, but I have emailed him many questions and he promptly responds even though we are not even probably technically a patient of his. His answers are always formed in' "in my experience" type format. Yet, they always seem to be right on with what happens with my son. We are considering going to Chicago as he just seems so knowledgeable and "in my experience" (ha, ha) a wonderful doctor. I know of another mom who also did the phone consult with him and found it very valuable even though she had spoken with various other doctors. I guess I dont know if he would give you any new info. Michelle as I know you have also taken your son to some of the best. For me, starting the PANDAS road, he was great!!!

Just wanted to chime in that I also believe Dr. K to be a great doctor when dealing with PANDAS. We were able to do a phone consult for $300. He does not push IVIG. He told me a step by step plan to help my son with IVIG being the last resort. He never encouraged me to use him for the IVIG either. He seems to be the most knowledgable doctors that I have found for PANDAS and he has seen many PANDAS children.

Do you know why she is not eating? Is it because her stomach hurts? I am asking because you have referred to PANDAS- which is strep related tics. In some PANDAS children, anorexia has been noted as well. You can look on www.webpediatrics.com which talks about PANDAS some and mentions the anorexia connection. I have talked to a person who is involved in a PANDAS case where the child would not eat. I believe in that situation, the child had a fear of choking. It did not come out until later that it was the problem. I have read a few other cases where in PANDAS the children developed anorexia nervosa as well. Since the titers are high, and your doctor must have some knowledge as he at least knew to run the blood test, would he be willing to do a prescription for azithromycin? The girls case that I referred to went through many medications and was admitted to the hospital because she would not eat as well. On day 5 of the azithromycin, she started eating. It did take 5 weeks on it before her tics went away, but at least she was eating. She did a long preventative dose. She went through Pen V and Amox. and none helped. Day 5 of Azithro. and she was much better. I would look at the PANDAS connection first as she has both the anorexia symptoms, high titers, and tics. If it is that she is not eating because her stomach really hurts, maybe digestive enzymes would help. Or look at food allergy testing. Is she old enough that you could really talk to her about why she is not eating? Would she tell you the truth if it was a fear of choking or psychological? That might help which direction to go. Just some ideas which I hope it helps.

I am in contact with a mom whose son has PANDAS and is considering IVIG. I am trying to find out more info for her and me too. Please post or send me a message with info if you have it. We are looking for doctors in any area with experience in this for PANDAS and also stories of success or non success. Thanks.