bmom

Hi Doug, I wish you the best of luck with the IVIG. I can tell you that we gave my son a ton of water, pre, during and post. Day one was fine- no vomiting or headache. Day 2: fine until the end of IVIG and that evening. He got progressively worse and by evening was vomiting and crying loudly. He was yelling at me "Are you trying to kill me or something?!!!" I thought we would be kicked out of the motel! By the next morning, he was fine. I do have to say, that my son does not do pain very well and can be dramatic at times. But, all in all, it was only a few hours of this and was still very worth it. Nothing worse than severe flu. I think the headache can be associated with the inflammation in the brain going down and my be somewhat necessary. No one told me about the slight fever though that he had. I called Dr. K in the morning and he said this was normal too. I dont want to scare you. T and A removal was a night mare for my son too. He hates pain and sickness. Good luck!

Worn out Mom, I have been in the same position where you are. Some doctors saying it isn't PANDAS, some saying it is, and one saying it is Tourettes and PANDAS. It is frustrating and I figured that I would have to go the distance on the PANDAS issue. We had the same response to antibiotics. At first he would respond to it well within 5 days and then worsen after 5 days of discontinue. Then antibiotics stopped working. Even after doing a round of Zithromax long term he wasn't responding to it. I think that maybe he had been hit too many times and yo-yo'd. We did IVIG and he was better. Also, high dose Augmentin helped him. The Cunningham test finally became available and we tested him. Turns out we were right and he tested in the PANDAS range. I am glad we followed the path! Good luck. I wish there was only one path, but unfortunately there are a lot of stops and turns along the way!

Michael, can you tell me the dosage you take of ALA and NAC? Are they spread out or given on one dose? When you say the help, what symptoms-tics?

If a child tests positive on Cam Kinase, but are showing very little signs of PANDAS, do you treat it and if so how?

Dr. K says he is concerned of my son becoming antibiotic resistant or of C Dif. He says his protocol is 1 year of antibiotics post IVIG and has not seen any reason to go longer. This is contradicting what he said 1 year ago during IVIG. He said usually he does 1 year, but some parents prefer longer as they are nervous and he did not see why we couldn't go longer. Now he says no. My sons last positive strep was last Feb. about a year ago now.

ugh....That is my fear and my son even got strep on 500 mg Augmentin daily. I would love to just have some sort of peace of mind.

Hang in there. I remember the post IVIG time. I was very nervous. It was high anxiety time for me-soo many hopes!

Thank you those who asked how he was doing. He actually seems to be doing really great! I would love to just leave things alone, but the thought of not having him protected against strep scares me as he does tend to get strep at least once a year or more! We are 14 days with no antibiotics and things are really good, which totally surprised me as I thought the antibiotics kept things under control. I think the 875 mg twice a day of Augmentin for the last 2 months really helped and maybe finally cleared him. I am trying to get into place a low dose antibiotic for awhile (years). Dr. K has been insistent on not doing this. I have emailed Dr. T and Dr. L for a phone consult-no response on either. I would like a second opinion and of course, my problem has always been finding someone to prescribe (pediatrician is a jerk about it) and I am trying to find a new one. I have a doctor at Stanford we saw once that I might take him back to and see what she can do. Hope all are doing well and I am so thankful for the last 2 1/2 months that my son has been doing well and hope things continue. I am always checking the website although I dont post as much anymore. Kinda burned out by the last 3 years! I do appreciate all the valuable info. that everyone provides and I am constantly amazed at the smart and dedicated people on this website. It is really incredible how we have all advanced over the last 3 years. Great job parents! :-)

At what age are doctors planning on taking your children off of preventative antibiotics? Dr. K took my son off at 1 year post ivig, he is 11. What are other dr. recommending? What do they consider preventative dose?

Caryn, I have always wondered if this is a problem for my son who has PANDAS, but light sensitivity is a biggie for him. I just had him tested on the Spectracell 5000 vitamin profile which came back fine for zinc (although I supplement him with 50 mg prior to the test). It did show he was low in gluthione, B12, and several antioxidents (NAC, alpha lipioc acid). Is 50 mg of zinc toxic? I have cut it down to 25 mg after reading this post. Do you think the test results would indicate pyloria is a problem for him? I should have him tested, but do not want to take him off of supplements in order to do so at this point. He takes a B complex and 25 mg of zinc and his light sensitivity has been much better since he started the zinc.

Our whole family tested positive at one time too. We all had no symptoms, yet tested positive on the rapid. Even my son who was on preventative antibiotics at the time. I could understand if just my children and either me or my husband (blood relatives). But considering that my husband and I are not blood relatives, that leads me to think it is the strain as wel.

I am wondering what to do now. Brief history: my son has likely had Pandas since around 3. He is 11 now. At 8.5 he had an episode that sent me on the Pandas path. I couldn't figure out if he was Pandas for awhile, but I am sure and a little over a year ago, he had Ivig at 10 years old. He was put on 500 mg Aug daily. This seemed to help for awhile. He contacted strep 4 months post ivig even while on aug. We upped it for awhile and then back to 500 and all was ok-not 100 percent but fine. 5 months after that he lost 2 teeth and that brought out more symptoms. The next few months were saw toothed until dr. K said to up it to 1000 mg daily. Things were still up and down. He got h1n1 in Oct which again got us back into problems. We were close to 1 year post ivig at that time and I was thinking it was really not working at that time. Dr k thought we should up his aug to 875 twice daily to see if that helped. For 2 months, we finally got some relief on that and he seemed really good although not 100- still pretty good. Prescription was done for the 875 twice daily. I called dr k yesterday to see what to do. I told him how great my son was doing on it. He said he wants to take him off antibiotics and see how he does since he had Ivig more than a year ago now. Not even a preventative! That scares me for 2 reasons 1. I am thinking dose is keeping things calm that even 1000mg could not do and 2. He got strep on preventative and now he wants him on nothing. What do you guys think. Do you think it makes sence to see how he does and go from there? I guess I am worried he will have trouble again.

Adam, could you give a brief history of your tics? Worst age, improvement age etc? Do you take any mess for it now?

Hi PMom, We have been on high dose Augmentin for approx. 3 weeks now. Titers were very low and always have been. Hard to say as my son's symptoms have been on a roller coaster for the last couple of months, but I believe we are seeing good results.

My son has a play coming up where he is the lead. I am proud of him, but also scared that he may start ticcing due to anxiety and the flashing lights. I normally give him 200 mg. of Advil daily, but would like to up it that day. He has a morning and afternoon performance. He weighs almost 100 lbs and is 11. What amount can I give him in the morning and at lunch? Would 400 mg. at 8 am and 400 mg at 12 am be ok? EAMom or Buster? Thoughts anyone?

My son has never been on the small side. Although he is not heavy, he is tall and strong. Last year we had his T and A and IVIG in a short time frame to each other. Since then, he has probably gained 20 lbs. People have made comments on how he has grown. I do not know if it is a growth spurt or one of the procedures. I actually thought is was perhaps the IVIG, but I do not know. I do know he is ALWAYS hungry ,but he was like that before last year.

Sorry Suzan. I can not tell you how long I played these games with doctors before we went to Dr. K. I am very grateful for him. I was tired of trying to convince doctors of things. Finally Dr. K told me it was PANDAS, not me telling them. It was definately worth the flight to see him and I wish I did not waste that first year running around to other doctors!

I just received my son's cam kinase 11 score. It is 150. Those of you that have had the test done, could you post the score and symptom severity of your child? Thanks. 150- sons symptoms run from mild to moderate

Thanks

Sorry guys, I know this has been posted lately, but now that I am looking for it, I can not find it in the post! Can I get Cunningham test email and phone info.

My sons PANDAS symptoms started 3 -4 days before the sickness hit. So, hopefully you are in the clear!

OK, as you probably noticed- I over analyze EVERYTHING! People hate to shop for clothes with me!

This is definately my question of the year: "For the kids that are tics mainly with PANDAS, what treatment is the best option?????" We did IVIG, and that helped some, but at almost one year post, it does not seem to be a cure. Of course my son is older, 10 at IVIG. Who would know the answer to this? Dr. Latimer?

EAmom, Did you just let things ride out both times or do steroids?

Thanks for the quick response. He is doing ok. When he got the flu a few weeks ago, things flared again. The settled for about a week and now he is blinking again. I dont know why. He is usually on 500 mg of Augmentin, but is currently on 1000 mg. I have had him tested several times for strep this month and is negative on rapid and culture. He does not seem sick right now, but perhaps is having allergies. Dr. K says lets hope it is just a bump in the road and to wait and see. That is my plan, but I always like to have a back up plan!