Betty04

This is a very difficult decision and I think there is not a right or wrong answer, just depends on your child's history. We are not getting the swine flu shot or the regular flu shot. My son had an explosive onset of tics after the routine flu shot 2 years ago before his 3rd birthday. He does have immune deficiencies so you could argue it is important for him to get the shot? Its impossible to know how he might react to the shot, we are basing our decision on a bad reaction 2 years ago and we have not vaccinated him since. However, he may have an exaccerbation of tics by catching the swine flu. So you might think we would be ahead of the game to vaccinate and at least avoid getting sick? I empathize with everyone's agony over this decision!

Just thought I would add my latest experience. My son had been on daily Azithromycin which initially helped. Then after being on it for a couple of weeks his tics significantly worsened. We were transitioning across country at the time so I assumed it was the stress of moving. Now I am not so sure? This September, he was on 500mg weekly Azith when strep was in his class. His tics worsened, we upped the dose to daily 250mg and it really did not help. After 2 weeks on Augmentin 500mg daily (he is only 40lbs), he is significantly better. It was a bit of a saw tooth recovery though because he got a virus right after starting the Augmentin and then a bad cold on day 9. However he has maintained his improvement despite illness so we are keeping him on daily Augmentin while we figure out the next step. Hope that helps give you some hope that maybe Augmentin would be helpful for you. However I do agree with others that it can take time and with all the illness out there it is very hard, if not impossible, to know whats what!

The saw tooth recovery seems so hard to tease apart from reacting to exposures and illness... especially this time of year! I hope things subside quickly for your son and thank you for your response.

Thanks for your response EAMom. Yes my son is on Augmentin 250mg twice daily... the max dose. My son only has tics no OCD. In this latest episode, he started to appear more PANDAS by having separation anxiety and hysterical crying at school drop off... never had this happen before? I need to re-read Sweedo study because I know the results appear to be more favorable for tics with PEX but I think the sample may have been biased in favor of those results over IVIG (I think I remember the tic severity between IVIG and PEX pre treatment groups were very different?). We need to really do our homework with IVIG because my son has low IgA. We consulted with Dr Gupta at Irvine who told us as long as he has some IgA it was not a problem, but that has not been the general opinion of other doctors we have asked. I also need to get my son's full lab results from Cunningham. I only received the CaMKinase today because they were being nice to rush those results for me. I question if PEX would be appropriate because in the past he has never had elevated titers... not even a positive strep test. I have always just guessed that the strep was in his sinuses? But maybe PEX would be helpful for other antibodies? Thanks again for your feedback!

Hi, I have not posted in a while but have been following the forum. Our rollercoaster ride with my son's tics have continued and after sharing an update with Diana she suggested I have a CaM Kinase level done. Well we got the results this morning and he is at 142. The labs were taken while on 250mg daily of Azithromycin that has seemed to stop being effective. If you read my previous post you will see that my son is young (now almost 5 years old) and not a typical PANDAS story (if there is one!). We have been unsuccessful with diet restrictions anmd supplements but antibiotics have always seemed the most helpful. My son's tics first appeared as blinking in the car at 20 months after a sinus/ear infection that lasted several weeks. I had the same infection for which my ENT was ready to send me to the hospital so it was a "super bug!" My son's tics exploded after a flu shot before his 3rd birthday. He responded to clindamycin and we prophalatically removed his tonsils. The tics returned 2 months after removal and that is when we went to a DAN doc for diet and supplements. My DAN doc has thought my son has a PANDAS component and I will be forwarding her the results of his CaM Kinase. Do other's on this board think my son fits the PANDAS profile. He was doing okay this summer (nobody but me would notice any tics), fine the first week of school, and then strep hit his class. He starting blinking constantly and some other motor tics. The Azithromycin he was on weekly 500mg was increased to 250mg daily. It seemed to help some and when we went back to weekly he got worse again. We started a trial of Augmentin 500 daily and he had a dramatic improvement after the first dose but then backslide after catching some virus from school. He began to improvement again on day 8 of the 10 day course, but now has a bad cold. However he is still doing better (50-60%) better on the Augmentin despite being sick. Today is day 10 of his Augmentin and I am afraid to stop it. I will discuss this with my DAN doc of whether to consider keeping him on Augmentin for a longer trial, considering steriods, and I think we need to revisit IVIG as my son does have overall low IGG, and subclasses 1 and 3 are low too. I just wanted to share my story to see what others think of the 142 number with his history and maybe help someone like us who has been on the fence about PANDAS. I have to say Dr Cunningham's lab is amazing. Kathy worked on my son's numbers over the weekend just because she knew how much I wanted them! Thanks!

Kathy, I have asked very similar questions regarding my son. He improved to almost 100% on azith, then we moved. During the moving he had no dietary changes and remained on all his supplements. However things worsened and all I can guess is that while the stress of moving may have played a role, environmental allergens definately triggered his tics and continue to do so. Sorry I don't have any helpful advice, but just wanted to add that I have always wondered how the tics could have improved so dramatically on azith only to worsen on azith when only his environment changed? Only other thought I have is to make sure you are using probiotics with the azith. I hope things settle down soon!

Just wanted to say I hear you and thanks for your post... it helps to be reminded you're not alone!

Hi, I am considering trying L-Carnitine for my son's vocal since many posts have stated success. I wanted to understand why it is helpful for tics and why it may be more helpful for vocal and not motor tics? Anyone have an understanding of the possible mechanism? Thanks!

Myrose, Just wanted to let you know my experience with Nasonex in case you ever use it for you daughter. I had poster about using Nasonex several months back and if I am recalling correctly most reported not having any negative increase in tics. However my son definately has an increase when I use the nasal steroids. It is temporary and definately subsides. It is the best option we have when he gets a cold since he never drains his sinuses and runs the risk of an infection. I noticed the increase on more than one occasion and my DAN doc relates it to dysbois or yeast caused by the steroid. BTW he does take daily probiotics and this still occurs. Just thought I'd share... hope all goes well with the Topamax taper!

I see no change. So at least it did not seem to have any negative effects that I can see. I decided to put it on hold for now and let my son enjoy the summer instead of seeing yet another doctor! But I was thinking ahead that I may need to address his allergies a more traditional route. Hope all is well with you.

Just curious, has anyone experience an increase in tics related to allergy shots. My son will soon be old enough to receive them for environmental allergies and I was wondering if anyone had a negative experience? Thanks!

Thanks for your response. You actually alerted me to the connection between B6 and salicylates. I have taken him off the B6 (on 30mg of P-5-P, which I think is high for his age). I had him off it entirely since beginning the Feingold diet in February and put him back on it 2 weeks ago. I think there is a time lag sometimes where some initially see a benefit and then have an increase in tics. If his tics go back down I will assume B6 did play a role as this would be the 2nd time we had that pattern. Of course, if I start another supplement I may not know what was the cause of any change???? He has been off the B6 for 2 days, no improvement, maybe even slightly worse? Thanks again for your help!

Hi, I am thinking of starting my son on L-Carnitine due to his vocal tic re-emerging and a worsening of eye tics. He had been doing much better on the Feingold stage 1 diet in which we reduced salicylates. I am not sure why things have worsened... maybe environmental allergies, though he has no apparent allergy symptoms, just know that environmental allergies have been bothering many in Northern CA where we now live. In reading others posts on what supplements has helped vocal tics, I notice L-Carnitine frequently appears and so I want to give it a try. Can anyone recommend the dose for a 4 year old, 35 lbs? Also I googled L-Carnitine and Salicylates and there is some complicated rat studies that suggest there may be a connection... anyone know more about this? Thanks for the help!

Thanks Tracey, I will read over your posts. Just curious, did you ever try magnesium and B6 or epsom salts baths? I imagine you did since they are the standard supplements. I am asking because my son has never seemed to benefit from these supplements and now that he is off them and doing better I question whether they were making him worse? Just trying to see if there is a connection/relationship between salicylate sensitivity and magnesium/B vitamins? I know from Caryn's post that too high B6 can have a negative impact on salicylate sensitivity but was wondering about magnesium and other B's? Thanks again for your feedback!

Tracey, Thanks for sharing your experience of how eliminating gluten and casein increased the amount of salicylates and thus increased tics. It makes me feel I am not crazy for seeing this connection and gives me hope that maybe we can use a low salicylate diet and add back in some other restricted foods. Would you mind sharing what supplements you have/had your son on that you think may not have been helpul? When my sons' tics worsened I took him off almost all his supplements. I had started the Feingold diet at the same time but he did improve without the supplements? I have tried many, including B6, P-5-P, and various forms of magnesium. My son does not seem to benefit from any but I feel they might be beneficial if I can figure out some other missing piece? Also my son is never calmed by an Epsom salt bath which I thought should be helpful, especially if you are salicylate sensitive. Any input feedbak is always greatly appreciated as I try to piece together this incredible mystery! Thanks again for sharing!

This is probably the best place I have ever seen info constucted in one place (pathways of intolerance) You will probably need to read it several times to really grasp all of the implications http://overcomingcandida.com/autism_pst_vi...ns_minerals.htm I would also at least scan this page. If you apply some of what you learn from the PST article, you can start piecing together more of the info contained here. Yasko genetics page http://74.125.95.132/search?q=cache:0gVAX8...w.vsan.org/rok- Wow! Thanks Kim! I am going to print these out and read them carefully. My son has not tried No-Phenol. Do you know if there are any potential negative side effects it may cause? The enzyme he is taking is from his bioset practioner. I plan to discuss the use of enzymes with his DAN doc. I did look up No Phenol and it said the primary ingredient is Xylanase and this is in his current enzyme, but it may be more helpful to have it in a higher dose? Thanks again!

Patty, Yes we are continuing with the bioset. I can't say I am a believer in the treatments but I have not seen any negative side effects. My son's improvements started before the bioset began. I am basically trying to see it through because I trust my DAN doc opinions and she felt it might be beneficial? Hope things are well with you... are you still continuing with bioset?

Momaw, Your daughter sounds similar to my 4 year old son. He has been on a GF, CF, soy and nut free diet for one year. His tics worsened significantly during a cross country move. While his diet was consistent, the stress and change in environmental allergies probably all contributed. I had him on multiple supplements, probiotics and daily azith with no help. Six weeks ago I eliminated corn and also started following the Feingold program to reduce salicylates. He had a dramatic reduction in his tics (approx 80%) which I saw happen over the first 2 weeks on this new diet. I too am hoping to find out how to better help his body tolerate salicylates as we also are on a very limited diet and have eliminated many healthy foods. I plan to follow up with my DAN doc to get her advice on how to help build on these improvements but hope someone may have any additional insights into the salicylates and phenols. Thanks.

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Thanks for the positive feedback. I am just nervous that the enzymes will worsen things. I was not sure if they are beneficial for most or if some actually had a worsening of symptoms?

Pat, We only went for the initial evaluation for bioset last week. He had a very long list of food sensitivities. I certainly will keep you posted on how things progress. Our next appointment is 3/5. Thanks for your help! I hope things are well on your end.

Just wondering others experiences with digestive enzymes. Can they have a negative effect? I have taken my son for BioSET and part of the protocol is using digestive enzymes. I am afraid to try them as things are somewhat calmer than they have been. Thanks for any feedback.

Myrose, My 4 year old son has been taking daily 250mg Azithryomin since October with only a positive effect of decreasing his tics. He does take daily probiotics - Klaire Labs Therbiotic detox and S. Boulardi. BTW he is only 32lbs. HTH