Betty04

Thanks. I just converted my son's weight to kgs so I will know what to expect with the dose. We'll double check the numbers, I actually would not have thought to do that. Then again I just had knee surgery a couple weeks ago and had to write in Yes with a black marker on the knee I wanted surgery on... so obviously mistakes happen!

Thanks everyone for the information! Obviously anxiety is running high the day before the IVIG and need lots of reassurance!

Does anyone know if there is an outcome difference between Gamunex and Gammaguard? I am not sure which one we will be receiving but wanted to be sure that they are equally effective? Thanks!

Thanks for the support. We are in Northern CA but we still keep our CT doctor. She is amazing and has directed his care to lead us to IVIG. Its just ironic that Dr B was in my backyard before we moved! It may be just my bias but east coast medicine is better than CA!

Hi, I have posted recently that my son's tics have continued to worsen on an increased dose of 500mg Augmentin twice daily (he is only 37lbs, so that is a high dose). On Sunday we switched him to Azithromycin 500mg daily. The tics immediately stopped worsening and there has been some improvement. My doctor says that antibiotic resistance is common. How have others determined whether to switch antibiotics or try steroids? I can say that I did not expect Azithromycin to help because it failed to make a difference in the fall during our last worsening, that is how we started taking Augmentin. Even though an antibiotic failed to work in the past for a child may not mean it will not work in a current episode because maybe the strep strain that caused the current exposure is different this time? I am just wondering because we seem to need to switch antibiotics every 6 months because they stop working? Regardless it is obvious we need to do more, so with my breath held we are going forward with IVIG tomorrow and Saturday. I just wanted to pose this question as I am not sure it has been fully explored as to determine when a switch in antibiotics makes sense vs a steroid burst. Any thoughts?

Thanks for all the great information. I do have my son on increased probiotics and Omegas (we have been working with a DAN doc for over 2 years so we have always done supplements). He does not really have allergy symptoms right now but he definately has environmental allergies. I have been using a sinus rinse twice daily for him and I think that helps, plus filters throughout the house. However since he has not been in school he has been playing outside alot. He seems to still be getting worse (now he has more exaggerated neck/arm movements!). I am thinking of trying some Benedryl later to see if that makes a difference? His pupils are huge today!

Vickie, Thanks for your help. I did try one dose of Ibuprofen and it did not help... do you have to give a couple doses for a response? I really don't think he has strep but is just reacting to it. We took Azith in the past for a couple of months and it did not control his symptoms. I am just confused that if his antibodies are up, is it time more than the increased Augmentin dose that will make the difference? Thanks for your response.

My 37lbs, 5 year old has been on Augmentin 250mg twice daily since October 2009. He was doing well until a possible school strep exposure over 2 weeks ago. Once his symptoms started increasing I doubled his Augmentin to 500mg twice daily. After a week on the increased dose, his symptoms significantly worsened. I regret that I sent him back to school but there were officially no reports of strep and his class size was small due to spring break. Well a week ago last Friday there was a reported strep in another preschool class. His symptoms began worsening over the weekend but were significantly worse after school on Monday. I have kept him on the increased dose and home from school all week. He has not improved at all? We are scheduled for IVIG in June, was waiting until the end of school year since he was doing well on Augmentin. Now that things are worse we are trying to do it sooner, but may not overcome some obstacles in scheduling. So its 2 weeks on the doubled Augmentin dose with worsening of symptoms. Would you reduce the dose back down to 250mg twice daily. I am fearful of this high dose for too long? Its just so discouraging

Thanks Vickie. I kept him home today since I was too anxious to let him go. The school told me that strep was reported in another class on Friday and the weekend was when things started worsening, and yesterday they significantly increased after being at school. So I think I'll keep him home this week and call on Monday to see where the strep reports are at. Though I am still frustrated that most don't report since its preschool. What am I going to do once he gets to kindergarten and has to fight off the entire elementart school's germs!

I know I may sound like a broken record, but have you checked everyone in your household (including grown-ups!)??? You are not sounding like a broken record. My husband and I are both negative on strep tests and cultures. The dog was on Augmentin for 10 days for an eye infection so I think she would have been cleared if she had strep. I want to get mine and my husband's titers done but don't have a doctor willing to write a script- my son's doctor says he can only order bloodwork for him. We dont have primary care doctors since we moved a year ago. Anyone know how to get titers? My DAN doc also said no because we are not the patient. Maybe I can find a primary care doctor for a check up and convince them to run my titers? Frustrating because I see this has been an issue in some families homes!

He is only 37lbs so I am not sure about going higher? Well the motrin did not seem to make a difference. I gave him a dose after lunch to see. He is going to a SF Giants game tonight with his dad so maybe that will help mix things up. At least it gives me an excuse to keep him home tomorrow after a late night. But with the increase in symptoms and no reported strep at school, I don't know what to make of this increase? It definately got worse after being at school today, so if I keep him home, when do I send him back? And would he get worse from an exposure at school in such a short time period? Sorry, just venting, there are no right answers!

He is only 37lbs so I am not sure about going higher?

Hi, Just wondering if I should be doing more for my son. A quick summary, is that for the past 6 months he has been doing well on Augmentin 250mg twice daily. Over a week ago, a child had tonsillitis in his class and he began to have an increase in eye blinking and neck movements. I immediately double his Augmentin dose to 500mg twice daily. He has been on the increased dose for 10 days and his symptoms are worsening. I did take him out of school for a couple of days but let him go last week since it was spring break and his class size was small. I figured today was the day I should be keeping him home when everyone returns with new germs from vacations! Anyway should I try some children's motrin? I was afraid to over-burden his tummy with more drugs. He is on high dose probiotics and tolerates the increase in Augmenting very well but did not want to push it. Any advice would be appreciated! Thanks.

Thanks Wendy. I called the school this morning and no strep has been reported. I struggled with whether to keep him home this morning. I started crying from the pressure of the decision since I needed to go to physical therapy as I just had knee surgery but couldn't relax about potentially sending him into more exposures. So he is home and now I'll have to struggle with when to send him back! Thanks again for your support!

Hi, My 5 year old son (37 pounds) is on Augmentin 250mg twice daily. His tics have increased in the past 2 days. He is in preschool and there have been no strep notices, but parents are not good about reporting. A mom of a child in his class told me today that her daughter had a fever for 5 days of 102. No other symptoms, just would not eat or drink much. I asked if she was tested for strep and she said it was negative. The pediatrician gave her antibiotics and she is now back at school and well. My guess is she did have strep and just had a false negative on a rapid strep. My son is a better strep test than the rapid:) Now I am wondering if strep is in his class? I plan to increase his Augmentin to 500mg twice daily. How long have others increased prophalytic antibiotics when there is an exposure with increase in symptoms. I am thinking 10 days as that would be the length of a treatment dose, but would appreciate others input and experience. TIA, Betty

Joan, We used to live in Connecticut when my son first had PANDAS symptoms. He responded very positively while on Clindamycin. We switched him to prophalytic Azith and he relapsed shortly after. We did not realize the change in antibiotics could have been the cause because we were moving at the time and thought it related to other factors. However I now think it is likely that Azith was not the best to control his symptoms as he is doing well now on Augmentin. We did not restart Clindamycin because he is young, does not swallow pills, and Clindamycin is horrible tasting in a liquid... but it was very effective in controlling his PANDAS symptoms. HTH!

Faith- I feel like I am at a similar place to you. My son's CaM Kinase is 142. He is almost 5 years old and his tics started as young as 20 months. So not the typical age of onset for Tourettes. I am consulting with my DAN doctor next week, have to resch a phone consult with Dr K and have a phone consult set up with Dr Latimer next week. My son has responded positively to Augmentin and after 6 weeks is better but not back to his baseline. So we are wondering, should we add steroids? We also may consider IVIG. But most conservatively I was wondering should we just increase the Augmentin to a higher dose and see if that helps? It seems some on this board have tried IVIG and steroids and it is the high dose of Augmentin that is helping? But of course every child is different. So my point is maybe you can get Dr Latimer to increase his Augmentin first as I think it is reasonable to be concerned about the negative effects of steroids. I always have this nagging thought that maybe its not PANDAS and its Tourettes... but he does respond well to anitbiotics and it seems your son may be too. He just may need more time and a higher dose as I think you said he has had tics for the past 7 years. Just some of my rambling thoughts I wanted to share... whatever thats worth

Buster- Just curious... have you considered a higher dose of Azithromycin or high dose Augmentin to see if you get further improvements? Hope things continue to improve!

Just wanted to add that my son's ENT was the kind of doctor to think out of the box. He was open to the PANDAS diagnosis and removed my sons tonsils. He told me he removed several tonsils for kids who had "unexplained" chronic fevers and after the removal, no fevers... something to think about?

Thanks that is extremely helpful. No more confusion and I can sleep tonight... Thanks!

Thanks for the response. I think I will try to get in touch with Dr Cunningham to get her thoughts on my son's results. I would imagine they are still learning about the relationship between symptoms and antibody results?

Hi, I just received the remaining lab results today from Cunningham's lab. My son's CaM Kinase is 142. So that puts him in the PANDAS category on that test but I think all the other results we received are negative? So does this mean he does not have PANDAS. Or are the numbers low because he is young, 5 years old? Or is it because we never had a positive strep test just positive results from antibiotics. Thanks for any feedback! Here are the results that were emailed today: Anti-neuronal Antibody Titers Anti-Lysoganglioside 2 hours patient 80 positive control >1280 negative control 160 normal range 80-320 normal mean 147 Anti-Tubulin 2 hrs patient 250 positive control 16000 negative control 250 normal range 250-1000 normal mean 609 Anti-Dopamine 1 2 hours patient 1000 positive control 8000 negative control 1000 normal range 500-2000 normal mean 1056 Anti-Dopamine 2 2 hours patient 1000 positive control 16000 negative control 2000 normal range 2000-16000 normal mean 6000

yes, we only got 5 pills. The insurance co. was so happy to quote from Dr. Kurlan. What i really want is ivig. Just don't know how to get it yet. We are not in an exaserbation and we are not immune deficient. Kathy We weren't in a big exacerbation/crisis either when our immunologist agreed to do the IVIG. But, we were still having symptoms (and milder exacerbations) despite being on 250mg/day Azith. The Cuningham blood results were the real clincher for us, in getting IVIG done locally. (Dr. K would have done it without.) EAMOM We live in the SF area... do you mind sharing who your immunologist is? We are still looking into IVIG and have a phone consult with Dr K, but I would prefer to do the actual IVIG local. Thank you.

Sorry to hear you are having such a difficult time. I think we all can empathize and I hope you get your well deserved, HUGE break soon!