bmom

My son reacts poorly to antihistamines. It seems whatever helps with the allergies, makes the tics increase!!!!

I just want to say Im sorry Myrose that you are going through this rough time. I am getting so frustrated too. Is spring a hard time for tics? It just seems like there has to be something that can be done. Our DAN docs app. isnt until Sep. I am hoping you can get an answer for your daughter soon. Have you made an app. with a dan doc?

Greyhound- You could possibly follow the diet somewhat without causing much inconvenience. It is low sugar to none, pass on as much yeast containing foods as possible, but if you dont eliminate totally that is probably ok, limit tomato paste, limit fruits and go with vegetables, meat (unless you are vegetarian), and nuts.

I have ordered the Candida Clear for my son. I was just wondering if Candida is not his problem would there be any problem with him taking it? Our DAN appointment is not until Sep. but I am trying to help him now. He is already on Bonnies, apple cidar vin., extra mag. taurate, clean diet, reduced gluten, no dairy, digestive enzymes, have done NAET for allergies, no screens for several weeks, no pools, trying to limit stress, air purifier, afraid of fish oil (me that is, not him in case he increases) he is possible PANDAS yet unsure as titers are falling in normal and he still is ticcing frequently on most days. Sooo, I thought maybe yeast. Would it hurt if that is not the answer?

Well, I feel like I keep chasing away tics only to have them change or return. Sorry for the down note, but I am frustrated. My son was doing an ear popping mouth opening tic which comes and goes. He is now doing an eye blinking tic. I started him on Nasonex because I thought the ear problem was allergy related now he is blinking so I have stopped it. Do you think the Nasonex would cause the blinking? Is taurine a good one to try for blinking?

That is great to hear NAN! My question for anyone out there that might know on the diet end is, My sons tics seem to change and there are some times when he has no tics at all. So, could this still be related to a food allergy? If it was a certain food, would they stay the same and be consistent? Has anyone had experience with diet helping tics that change and go away????

Could someone tell me how long the wax period went on with the chlorine exposure? My son went swimming then was in a wax mode for about 2 weeks after. Would that be chlorine related? He has gone swimming before with no problem, but this time he was in the middle of a tic episode so perhaps it added insult to injury where before he was not ticcing when he went swimming. Would this make a difference in a possible PANDAS kid?

That's great. Could you tell me if it is the Kids Calm or regular Calm?

CSP, What test did your son do? Is your sons doc. recommending Alpha Lipoic Acid? I believe this does help with the detox although it doesn't show he needs it. If it is any comfort, I believe it was Claire's son that showed Alpha Lipoic Acid was deficient and Cysteine and she said the supplements were a big help. Also the book "Victory over Tourette Syndrome" talks about Alpha Lipoic Acid as a good supplement. I have bought it, but not used it. Too many supplements, not enough info. I have finally decided that I need to have my son tested to see his specific needs. I am now trying to decide what doc. to guide me through. I am thinking Dr. Demio or Dr. Mullan (who uses Amy Yasko's protocal). I want to get it right the first time as I am not going to be able to pay out of pocket for multiple DAN docs. Any thoughts anyone? So much that we are talking about seems to fit in line with Amy Yasko's approach. Faith- How funny, I think those were the professions I wanted to be too.

CP, Could you please remind me, have you ever taken your son to a DAN, integrative, or alternative doc? I am considering this as my next step as I am beginning to get soooo frustrated in finding out what may be triggering things. I know that this might not be the magic answer, but I am at least hoping I can figure out something.

Hi Sue, I have been trying to figure this out a lot lately. I have noticed my son seems to be light sensitive and also seems to have dilated pupils a lot compared to my daughter. I read on a PANDAS website that children with PANDAS seem to have dilated eyes during an episode. I have been wondering if some children with Tourettes have dilated eyes often too. I havent figured out if my son is PANDAS or not. Anyway, I do think it is somehow tied to things. I took my son to an optomologist and he tested him and said he did have extra pressure in his eyes. We are doing more testing. I have gotten him glasses that change to dark in the sun and this does help with his sun sensitivity while playing outside. I am not sure if it helps with his tics. I have also bought him some special glasses that he can wear while reading and watching tv inside that are dark. I am looking into seeing if there are some type of contacts that help with light sensitivity. I have read on an epilepsy website that some seizures are tied to photosentsitivity and someone posted on there that she has special contacts that help a lot-amber colored. I have found some online, but they are discontinuing them this month. They are by NIKE and Bausch and Laumb. Anyway, I am not convinced that photosensitivity is my sons complete problem, yet maybe some. Perhaps your son has some photosensivity issues too. Have you done the no screens test on him before? No tv or computer etc. for 7-10 days to see if this helps his ticcing? Claire has posted tests that can help if this is one of his issues. We are on day 9 of no screens. I had seen a gradual decline and almost tic free yesterday, yet today he came home from school with what I think is a new tic. I cant figure it out and am frustrated. I asked him if he watched tv or did computers at school and he said no. UGHHH!!!!

I may be wrong, but it seems like the info. I have read on Amy Yasko's research talks a lot about some of the things that are discussed here. Is that true? If I were to look for a doctor, do you think it would be helpful to find someone who uses her approach? Does anyone know much about her research? I just remember reading about the pathways and the MTHFR gene mutation in her info.

I am getting tired of fumbling around on my own without guidance. I am thinking of taking my son to a DAN doctor, but I just dont know if I am at that point. I have not pinned down his problem, and I am worried about them trying to give him too much. Who has gone this route and do you think it is only beneficial?

Of course I am fighting to get a diagnosis and have gone to many doctors that have not heard of PANDAS and if so only want to treat it with blood pressure meds so who knows?

Yikes, thats is a tough one and I cant reply to it. But, I wondered, I know that some say tylenol is bad for most of our children. I believe most doctors prescribe it after adnoids or tonsils are removed. Is there something else they could use? Also, just a few foods that might work- popsicles, non dairy ice cream, hmm.. ive got nothing else. Does it have to be cold? Mashed potatoes?

I know that my son has light sensitivity. I also have noticed his pupils to be dilated at certain times and often when he is ticcing more. Basically dilated more than what I would be considered as normal and when he is going through tics even more so. Anyway, I have actually been thinking that his problem is either PANDAS or photosensitivity, or both. I was thinking and have searched if there were some sort of contacts that could help with this. You would think so. Early in the process I thought I had found something, yet I didn't write it down and I haven't found it since again. I know it would not be a permanent fix, but possibly some sort of help. He reacts to stores, screens and sometimes sunlight. How do you order the pyloria test? Caryn, do you plan on having your son stay gluten free forever? Did you go to DAN doctor or do the IGG on your own? We basically have been doing no screens for the last few weeks and I went to the school this week and told the teacher no more screens. Who knew there was soo much in the school system- she has them watch Bill Nye almost daily! Ugh! Anyway, we cant do this forever and if he is Pandas, I am wondering if going to a DAN doc. would be of help or not. We have scheduled Dr. Demio for Sep. Has any moms with PANDAS gone this route? I know Michelle did. Oh, and yes we did go to an optitrician who said he did have more pressure in his eye than normal. Anyone else experience this? We are testing monthly to see if it is glaucoma, yet he has not been able to do the glaucoma screening on my son as he is too sensitive to the light.

Thanks all. Zma my heart goes out to you. I have only dealt with this for a year and one son and it sure has put me into a tail spin. Anyway, could you tell me their plans for your sons? Are they on prophylactic antibiotics? Do the antibiotics help them? Kim, I do believe they are somehow related. I just haven't figured out if it would point more to a PANDAS situation or not. I spoke to our doctor about how we seem to have issues on both sides of the family. My husband has minor tics also had many sore throats, but she didn't think that he would be considered PANDAS due to the fact that his tics are daily and don't really vary. My side my grandma had rheumatic fever, and possibly a short bout of tics so maybe this could be PANDAS. She also has arthritus. So, I dont know. On my grandmas side their is one aunt with a sort of Parkinsons type disorder that has recently began. She also has blood clotting issues. So probably related to something. Unfortunately, as I wanted to blame my husband only!

Peglem, Could you tell me how her doctor diagnosed her with PANDAS? Was it titer levels or purely on reaction to antibiotics?

The tics have been back for a week and we are only 24 hours out of the Pen. If the pool triggered them again, how long does it take to get out of the system? My son has never done the finger playing, just a hand crunch. Perhaps it could be the same urge? I just want to find a direction, whether it be Pandas or not. I think my doctor was ruling it out somewhat because my husband has minor tics. Yet he had many sore throats as a child and my son has had a problem with strep his whole life. I will wait and see his reaction without antibiotics in the next 48 hours. Thanks.

Thanks I know you are right. Unfortunately I am having no patience at the moment, but will try. I am back to diet restrictions. He is on Bonnies. Today I added the Apple Cidar Vin. supplement. Will see if that helps.

Well, they started almost the same day as I had strep. They started with the hand clench then moved to the ears-opening mouth to pop, holding nose and blowing, blowing air out of nose (which he says helps to unplug), but also an eye blink with the whole thing sometimes. And yes he says his ears are plugged and hurt. And yes I have had 3 doctors look at them and no ear infection, but maybe water in them-cant see. Pediatrician prescribed ear drop antibiotics. no help so far. They are definately tics as they are exaggerated and occuring sooo frequently. Do you think that it is just a coincedence that they began when I had strep, but are due to ear problems? Or is it PANDAS and they are tics involving an ear problem, but due to the strep? It is the chicken vs. the egg situation. He is day one off of antibiotics after 3 weeks on. I think I will see how it goes and maybe do azith. in a little while to see if that makes them subside. I am now journaling everything to see a pattern and hoping one emerges. I am just tired of floundering along and not finding a cause or trigger. Thanks all who can interject.

The other problem is that his tics all involve his ears being plugged. opening mouth, holding nose and blowing to unplug ears, etc. except also the hand clench all of which started while I had strep. Soooo, the doctor just thinks he is reacting to an ear problem with tics. This would also go with the swimming. Yet it all started with my strep. Then got better on the antibiotics. So, I though ah, ha Pandas until the swimming incident. Then, back to constant ticcing so maybe it was an ear problem after all. Or PANDAS---ugh!!!!

Well, our story has been posted before and I wont go into to its entirety. The problem is that I still am trying to figure out which route to go. We went to Dr. Carol Mathews in Cal. last week. We told her of all of the events of the last year and she said it is not clear cut PANDAS. She wants to keep checking the titer levels. She believes that these should be elevated in order to fall into the category. My son was doing well on the Pen. V until last week and then he has been consistently ticcing while on it. He went to a swimming party last week and the next day the tics started back up full speed. He has not reacted to swimming before so I thought it would be ok. Anyway, I am sorry for the rambling, yet I am fumbling around with which direction to go. Dr. Mathews says she wants titers tested anytime there is an increase. I convinced her to also write in her report to try antibiotic even if the titers were not elevated or negative strep to see a pattern. Do you think this would help? I now have to convince my ped. The thing is, for the first 2 weeks while on Pen, he was virtually tic free. Then swimming party, now a week of non stop ticcing while on Pen. Now I am out of Pen. I am kind of waiting to see if he worsens while off. I have a prescription for azith I could possibly try. I made an app. with Dr. Demio (DAN doc) for Sep. I just feel frustrated, sad, and unknowing which he is falling into. Dr. Mathews said 98% of PANDAS do a finger piano playing thing. He does not although while in episode he always does a fist clench thing. He mainly has tics during an episode, yet I would say the first time he was somewhat different with behavior too. He is not clear cut PANDAS, yet if that is his problem, I dont want to let it go either. Thanks all for weighing in with opinions or info as I am back to my wits end and feeling so sad for him today.

Thank you for update. Please keep us posted as this is something I am considering. I am hoping your son continues to do well! Jasminsky, how is your daughter doing?

I am trying to find a doctor who will prescribe antibiotics as I feel that they truly have helped my son and that he is PANDAS. We are seeing a Dr. Mathews this week. I am hoping she will, yet I would like to have some Dr. in mind. Do you think Dr. K would?