StillHopeful

Hi - just wondering if anyone has any good supplements or remedies for vocal/motor tics. Right now we are treating for PANDAS and he started an antibiotic a few days ago. He is also taking epsom salt baths and 3 tsp of inositol a day. If you can suggest anything that can be swallowed that is small it would be helpful. If you could post brand name and amt I would appreciate it greatly. Thanks a lot. Ngold24

Hi - Just looking for some opinions based on anyone's experience. My DS10 (78lbs) has been perscribed 200 mg (liquid) Azithromycin. He takes it once a day and he has had 4 doses. I assume it is too early to tell... there doesn't seem to be much of a change. Maybe a slight improvment in phobia (insects/spiders). He seems more tired then usual and is still VERY moody, tics OFTEN(verbal & motor). He also takes clonidin for the tics (2 1/2 .1mg pills each day). Do you think he is getting enough Azith and when should I see an improvement? His doctor is his ped and will only let him stay on it for 14 days (maybe 21 if I push). In the meantime, a found a psychiatrist who says he will treat DS for PANDAS if the ped isn't going to continue. The psychiatrist gave me a perscription for Buspirone 10 mg (for anxiety & maybe will help with tics) which I haven't started yet because I wanted to see what the antibiotic would do first. Has anyone used Buspirone? He also wants me to increase the clonidin by 1/2 pill (also haven't done yet). On another note, we have a lot of "issues" in the car. My kid both have tics, ocd... and they make each other tic. Then they fight and it gets pretty ugly. Even if they are w/o their sib in the car my DS10 tics a lot more in the car (not sure why). Any suggestions (besides walking)? We are taking a cruise out of Batimore in August and have to drive 4+ hours to get there. Uggghhh! Plan on taking videos, video games, ear plugs (for me and them), head phones.... anything else?? Thank you in advance for any help! Ngold24

Thank you for all the tips!! We went back to the pharmacy (3rd time) and spoke to someone else. Turns out the flavoring was wrong for this particular brand (which they will not be reordering). They had to add additional flavorings (more than the usual types and amts). My DS tasted it in the store and said it was good. I also purchased the spray that makes pills slip down your throat more easily. My ds said it tasted good and he used it to take his clonidine. FYI, like that idea about the banana slices. He is also practising with tic tacs because I would like him to be able to swallow certain supplements that we have avoided due to the fact they are in a capsule or a pill. So, now we are on our way with the zyth and hopefully it will help. Sheila99 just wanted to add our probiotic is a cherry flavored chewable. It tastes good and it is small. It is Nature's Way Primadophilus in case you are interested.

Hi - Just wanted you to know that I appreciate all that everyone has been posting about their children in these forums. It is very helpful to see that others are having similar issues. I am also pretty new here and have been having a very tough time with my son since Mar 2011. He has had motor tics for a few yrs and we managed with clonidine. He also has sensory dysfunction. However in March everything got much worse (Coprolalia, Copropraxia, tourettic OCD -evening up, touching, sensory ...). I am sure I don't have to explain what a nightmare it has been. I finally talked my ped into giving him Zithromax 200mg /5 ml for 14 days. It is extremely bitter (I tried it) and my son won't take it. He is very difficult and at 10yrs old doesn't really get how imp it is to take it. Is it supposed to taste this awful? I am going to try to get him a pill but not sure if he can swallow it. If you have any other suggestions please let me know. We mixed it in icecream, smoothies, etc.. still really gross. How do you get your kids to take it? If the pill won't work I was going to see if I can get him Augmentin or Amox. Also a comment about the fish oils/omegas. I was told that the DHA can make them more agitated and that I should get something with low DHA and high EPA. Nordic Naturals makes an EPA 850 mg w/ only 200 mg DHA. My other son ( 13 yrs old) uses Omega Brite which also is high in EPA you have to get it online. My 10 yr old won't take it because he is a vegetarian and won't eat fish. I heard vit D was helpful? Anyone know the doseage and is it D or D3? My son also takes inositol for the OCD tics and it seems to calm him. It is a powder 1 tsp/3times per day mix in any cold beverage. You have to ease them into it over a week or so. Just thought I would pass that along. Thanks again! -- NGOLD24

Thanks Erin3. I am going to go to our ped. today to test for strep and see what he thinks about PANDAS and starting an antibiotic treatment. I think I know the answer. (not proven/won't perscribe). If so, I am going to call Boris and see if he treats with antibiotics. I am not interested in checking for allergies/diet as a first step because I think that my son needs antibiotics. Thanks again.

Hi -- I hope all goes well with your daughter. I read some of your posts and your daughter has some similar issues as my son (10 years old). He has a lot of anxiety too. He missed 20 days of school and was late 17 times in the last quarter. He symptoms came on abruptly in March 2011 (although something sim happened in Mar 2010 and then diminished) which is why I think it is PANDAS (plus he has had strep & high ASO). The doctors that he sees won't treat PANDAS so I may see if I can get an appt with Shulman. My son stays home, stays in bed, plays e-box, watches tv.. Car rides are full of anxiety, won't go to camp... He has sensory dysfuntion (tactile mostly) and often won't get dressed. He also has tourettes and ocd. The past few months have been hellish and I have to do something soon. Thank you for the information re Dr. Schulman. I am going to at least give her office a call. I don't know if my son will cooperate and go to the appt. We'll see. --NGOLD24

Hi -- We are considering seeing Dr. Schulman in Brooklyn and wondered how things went. I am pretty new to this forum so if you already posted updates please forgive me. Thank you very much. -- Ngold24

Thank you very much. I checked out the thread but not much listed for NY. Anyone heard of Dr. Stanley Boris (allergist & DAN dr) in Woodbury, NY?

Can anyone recommend a doctor in the NE who treats PANDAS with antibiotics? Any information would be very helpful. Thank you.