keeptrying

I have been there - literally on the bathroom floor begging for God to help. Thank you for your information. Can you tell me how long it took for you to notice the change in motor tics when starting the patch? Are you med free now? Was it just to help through the hard times?

My dd is 9 and has motor and vocal tics for almost 5 years now. I have been posting on the pandas forum a lot but decided that this forum would be beneficial for this particular question. I am not sure if my dd has pandas or lyme or mycoplasma or what. I have tried endless alternative therapies, diet eliminations, supplements, homeopathy, accupressure, applied kinesiology, muscle testing for allergies, food allergy testing (all neg), going organic, keeping a clean diet, clean house, non toxic everything...need I go on? Anyway, we are currently trying zithromax for the possibility of strep induced pandas. She had a positive strep test 4 yrs ago, was treated, then tics came out 7 months later so hard to tell. Neg aso titer at that time too. My dd's tics are off the charts now. Is it because school started 4 weeks ago, is it because she is getting at the "peak age for symptoms" as our pediatrician has said? I do not know but feel like she can not go another minute like this in public. I am wanting to call the neuro and find some meds. Is this a bad idea? Please tell me. I have heard that the catapres patch does not have many side effects. I would appreciate ANY advice on what works and what to stay away from. I am scared to death and want to make the right decision. I really need some help..

We use good belly juice. Has 20 billion cfu per drink. Also, powerdophilus by Country Life has a good reputation ( we do not use them though because some powder form probiotics cause my dd to tic more). I am not sure I give enough after reading some of this. Do you worry about die off with these high amounts? I do, so I keep it smaller but consistent.

THANK YOU, I never thought about the omega's added to our eggs and waffles..I just wrote saying that my dd can do supplements but can eat salmom - HOWEVER never thought about these other things. duh. A light bulb might have just gone off. Thank you again.

Emerson, I am new to the forum and I have read some of the posts that you have commented on. It was so nice to hear from someone that is actually dealing with these issues personally. I have a 9 yr old and I am worried as she gets older and if this does not get under control that her life will be impacted in such a way that I may no longer be able to help. I hope your experience with this is better than I fear. You seem older than your years and I imagine can handle this and then some. Sounds like you have had a diagnosis for sometime, now lyme. How are you treating your lyme and what got you to test for it? I am trying to decide whether or not to have my dd tested. Any advice for us parents? Forgive me if you have already done this, as I said, I am new. I was told that I had P.A.N.D.A.S. for the first time about three or four years ago, although my symptoms have been around for about eleven. They really reared their ugly heads a little less then five years ago though, less than a year post-tick bite. I don't have DIAGNOSIS for Lyme, I have a positive Lyme AB Screen. That actually caused a little conflict on the forum, hahah. I really just chose to be tested for it because I had seen so many moms talk about it on the forum. In all honesty I didn't even know that Lyme was tick related until the doctor that tested me for it asked about my history with ticks. I don't think that there would be any harm in testing her. I'm at the age where needles just don't faze me after the years but I can imagine a nine year old not being so receptive. After a while we P.A.N.D.A.S. kids learn that they're here to help though, haha. No need for forgiveness! I joined this forum to help. I love getting to talk to new parents. I can't really say "Well, this is what you should do.." but if you ever have a specific question don't hesitate to send a PM! Helping others makes me happy. It feels like getting closer to helping myself. The only thing I really have to say is.. BE PROACTIVE! Besides that, welcome to the forum/family! tried to pm you but it would not accept it... Hi Emerson, thanks for responding to my post so quickly. I wanted to ask you do you only have tics or are there other symptoms that you experience? My daughter has only motor and on occasion vocal tics. She had some slight OCD type behaviors when she was very young but not anymore. You mention that your symptoms "reared their ugly little heads" around age 10 (?). Was that when they were at their peak in severity? I am asking because my dd's tics are the highest they have ever been to date and she is not far from that age. I understand that tics can peak around 10-11 then start to subside after. Has that happened for you? Also, with puberty, did your symptoms get better or worse (sorry if that is too personal..)? I guess I just want to know what might be ahead of us. I am still not sure if this is pandas, lyme or TS. By the way, you seem like a very mature special young person. I hope your parents are proud of you.

Emerson, I am new to the forum and I have read some of the posts that you have commented on. It was so nice to hear from someone that is actually dealing with these issues personally. I have a 9 yr old and I am worried as she gets older and if this does not get under control that her life will be impacted in such a way that I may no longer be able to help. I hope your experience with this is better than I fear. You seem older than your years and I imagine can handle this and then some. Sounds like you have had a diagnosis for sometime, now lyme. How are you treating your lyme and what got you to test for it? I am trying to decide whether or not to have my dd tested. Any advice for us parents? Forgive me if you have already done this, as I said, I am new.

Do you have the name of the doctor/s that are working on this at the Mayo clinic? I am asking because I was just looking at their website and review the docs their that are studying movement disorders.

I have found that omega supplements do not go over well with my child. I can not prove that they cause her tics to increase but it is just a hunch on my part. She can eat salmon with no problem but I stay away from supplements. I know how beneficial they are but am too scared to try again. I would say stop them for 3 days and if symptoms go down you will have your answer.

I am in the process of finding out what tests I should do. I have been giving charcoal tabs but not sure it is helping. I give one a day - what were you told to do? I wonder why zithromax is best if trying to avoid yeast? I thought all abx caused probs. I will keep her on probiotics to be safe. I guess it is possible that the probiotics could be causing die off which would then confuse the situation. Does your child experience tics? As I said, my dd has tics and I worry because those seem to be hard to go. I am going to give it maybe another week. I really need to see something if I am going to continue. Do you have a pandas diagnosis? We do not which is why I am scared about this treatment. Good luck with the tests.

I completely agree. They will be showing extreme cases no doubt and that is not the way it is for all ts/tics kids. I hope this one is different.

apparently it has antifungal properties in addition to the others. It is strong and I was made aware of possible die off from that too.

Holly, I am noticing we are both on day 9 of zithro. I do not have anything to add other than I am anxiously waiting too. I started a new topic today about whether or not to give up on zith and go to another drug. I got some good responses that you might want to read - if you haven't already. I am thinking we need to give it time. I sometimes think my dd's tic are increasing but then not. I am fearful that this is a die off but from what I do not know. Are you doing anything other than the zithro, like probiotics or yeast control. Wondering if it could be some reaction to any of those if you are. Stay in touch. Good luck.

you are already on it...try to hold for 30 days...it may not be the right one...but you don't want to think you should have stayed longer....and even if you go off..you may want to revisit zith for various reasons.... could be herxing if myco p or other infection(lymes, other) pleeaseee....watch the yeast..from one tic mom to another.... and as dc said...you may need more than abx...or maybe just a switch ...we needed the taper.. (we are lapseing as of yesterday..could be yeast or allergies)(i am sure it's one of these or maybe the combo.)trying to reel in before to far gone.. what do you do for the yeast? And how would I know it was the problem and not die off from some other bacteria? Our doc gave curcumin but I read most use nystatin or diflucan. What do you mean by taper? Do you mean slowly cut down on the abx? I was told we could just stop. Our doc said if it is die off then it could last 2-3 weeks - does that even if you do not treat it it will go away? I am afraid I may not recognize it as yeast then not go at it the right way.

do you mind me asking what more than antibiotics were needed? I am open to suggestions!

It seems like some days her tics are worse then others they are the same. My dh does not think they are any worse so maybe it is just me. I might be looking for something that is not there. Was your dd ever on zithro? Sounds like Omnicef is working for you. Did you find one better than the other for your child? This exacerbation has been almost 3 months now and school starting is not helping. I am desperate for this to help - but I am also trying not to make a mistake in the process. Thanks

My dd is on 500 mg once a day. I have heard that it might be too soon but so many have seen improvement quickly that I can't help wondering if it is working or not. Her symptoms are strictly tics - mostly motor and some mild vocals on occasion. She does have anxiety at times but that too is mild.

My dd9 has been on zithromax for 9 days now. This is a trial as I have posted before. We have no tests yet proving pandas. She has tics only which I am understanding can take time to go IF abx can help. The doc said give it 2 weeks. Others have help to shed light that it could take a long time. The doc has all of sudden said we could switch to omnicef - now is that because he wants to quiet my nerves by trying something else or that he truly thought we should have seen something by now? Do I give up on zithro this soon? I feel like I just can not make the right decision. I read that zithro seems to work for a lot of people, have not read a lot about omnicef which worries me. THere are times I think that the abx is causing an increase but too hard to tell because her tics are so high right now anyway. We are doing probiotics and curcumin (not a therapeutic dose yet - going slow). Could this be herx? I am just wondering if I am doing more harm than good. Any thoughts???

We had insignificant improvement within two weeks. We knew it was working, though, because prior to treatment, she was getting worse by the day. That progression thankfully stopped with azithromycin. We gave it several more weeks but still not a huge improvement until the doctor doubled her dose (it was very high). Then after 6 to 7 days we saw the big improvements begin. would you mind sharing what dose you started with and then what dose you got up to where you started to see the improvements? You say that the progression stopped with zithro then it was sometime before there was improvement? Did you see anything along the way in terms of getting better or was there just the improvement once the dose was doubled? My dd is on 500mg and she weights 68lbs - I am not sure we could go higher. IF we did, I guess I would need to see something which sounds like what happened for you.

I posted earlier about wondering when zith would work for us too. Today is day 8 and still nothing. My dd has tics only and they are not moving. I am going to post a new thread about other meds to try and see if it is time to move on or stay the course. Have any of your docs given you an idea on when you should see anything. Mine said by 2 weeks. Well 1 week down and I am nervous.

Just wanted to add after we found a pharmacy that would give us the dye free zithro, they did say that this one does have some additives and preservatives in it. The Pharmacist more or less said pick your poison. I chose the additives. If we got a pure form - our insurance would not cover and it is very $$$. I am so glad to have this thread going around so those of us that have not thought to look at our meds will now - especially me.

I am new to posting and new to the Panda's journey but believe we all need to share our experiences rather new or old. I have heard Dr. Steihm in UCLA Medical Center has much experience with Panda's and infectious disease. Dr. Thomas Lin in Irvine Ca - he is a DAN doctor/pediatrician that has been treating Panda's for 2 years now. We have just started with Dr. Lin and like him. I do not have much else to share since our journey is just beginning but I do know these docs can and have helped. Also, you will soon read about Dr.K on this forum - he is in IL but consults with people all over the country. We had a phone consult with him and he was great. Many fly out to him for treatment because of his expertise. Does not hurt to have phone conversations with whom ever will talk to you and LISTEN. Good luck.

any suggestions on right types of probiotics? My dd drinks good belly juice.

I asked about it and was told we would have to get it from a compounding pharm. and that we would probably have to pay in full. It is close to 500$ from what I was told. Even the small amount in the pill can cause probs? found a pharmacy that carries the dye free zithro in our area - with only an hour to spare before closing - my husband raced down there and was able to pick up only 2 because our insurance was not going to cover it since we just filled the original rx 5 days ago. The pharmacy was great and suggested we buy just 2 to get us through until Tuesday when the insurance could be reached and we could plead our case for coverage. Crazy! The abx costs 479$. They were close to 27$ a pill. SO we have to pray they cover this for us because it will be a very expensive road to go down. HOWEVER I am grateful to have gotten the dye free. Amazing that they have to put that stuff in a pill. It is swallowed so what is the point?

Thanks for this. My dd is 9 and is 68 lbs. Our zithro is 500mg 1 x day. As I said, we are on day 5 and have seen nothing. I have read a lot about tics being the last to go if at all. My dd does not have any other real issues outside of the vocal and motor tics. Glad to know you think the abx may not hurt even if not pandas. I have tried ibuprofen 200mg a couple of times and never saw any relief from it. Some say, motrin is better. I wonder why since they are both the same ingredient - right? If motrin is better for some reason then I will try that too. Right now, we need all the help we can get. sorry meant to ask how your child is doing? Are you still on abx to control symptoms? Sounds like you have gotten the tics under control - I am so glad for you. Do you feel you need to go to ivig for final resolution or were abx enough?

Thanks for this. My dd is 9 and is 68 lbs. Our zithro is 500mg 1 x day. As I said, we are on day 5 and have seen nothing. I have read a lot about tics being the last to go if at all. My dd does not have any other real issues outside of the vocal and motor tics. Glad to know you think the abx may not hurt even if not pandas. I have tried ibuprofen 200mg a couple of times and never saw any relief from it. Some say, motrin is better. I wonder why since they are both the same ingredient - right? If motrin is better for some reason then I will try that too. Right now, we need all the help we can get.