bmom

This month marks our four year's of PANDAS in our lives. I remember when I would go on the tic board (there was no PANDAS board then) and read everyones old posts and wonder where did the families go? Are they cured? Did they give up? I even would instant message some and ask. Well, I also remembering making some promises to god that I would keep checking in for everyone elses curiosity. My son is a PANDAS ticcer. Just when I thought things were under control last year, a year after his IVIG, last spring/summer was his worst year yet! I believe it to be a combo of things: allergies which always makes him worse, lost soooo many teeth last spring (a big problem for him) and he was 11 which is also a key time. We did a steriod burst, upped to high dose antibiotics and moved on the IVIG #2. Things settled down with bumps and the last 2 months have been pretty good. He is not tic free but pretty well. I also added a few new supplements to his regimine for screen sensitivity and this has been great as he is able to handle more time and does well with them now. I am trying to come on here much less and hardly post as it does bring back such traumatic times for me of reading all night. My son is 12 and turns 13 in 7 months. I am praying he is going to grow of it all soon and we can live our lives in a normal way! I am moving into a less panicky stage when I see things and trying to grow our lives in other ways. Through it all, he has remained a happy, friendly, straight A student, involved in sports and other activities. He has many friends and loves school. For that, I am very thankful. I am also thankful to all that posted and helped. I hope that everyone finds success for their children and we can get the answers we need.

It is has been real hard since May. I believe he is PANDAS, but I dont know what else to do at this point. My heart is breaking. I feel so bad for him. He just came in an hour ago from playing outside and said he got in a fight with one of his friends for calling him twitch. His tics have been bad for the last five months. We did a steroid burst, have been on Saving Sammy dose of Augmentin, and did IVIG. He deserves some peace and I am praying for that to happen. It has been a long 3.5 years. We have yet to try medication, but I am hoping with all my heart that it can give us a break. I dont know what else to do.....

We also have been considering this route lately. We have been through almost all treatments including 2 IVIG's, high dose antibiotics, allergy treatment, food elimination, supplements, allergy elimination, vitamin testing. My head hurts just thinking about it. At what age do the tics slow down? We seem to be at the height, but my son is 2 months away from 12. I thought we would be on the downward slope by now! We have been checking into Topamax. Does it have to be sprinkle cap? Has anyone had pill form and done well?

For those of you that have had turning back the pages post IVIG with tics, what does that look like? This is my sons 2nd IVIG. With his first, I would not say there was a clear turning back pages. It was more a gradual improvement. He had his second IVIG almost 3 weeks ago. The last few days, he has had multiple tics going. He is on Saving Sammy dose Augmentin so I dont think I can really up that. I do not know if this is turning back pages or a bad situation. He was doing pretty well prior to IVIG when he started the Augmentin, but he had such a bad few months prior that we were already scheduled for IVIG and moved forward. I guess I thought turning of the pages would be more of a blip of an old tic and then gone, not move in to stay!!! What are everyones thoughts??

Thank you Worried Dad. I was going to send you a personal message about this, but couldn't figure out how so I appreciate your response. We are only one week in and have already seen progress. Before when I have upped the Augmentin, tics would go away within a day. This time it is taking longer, but he has been in a exasperation longer with several tics. It has confirmed my belief that high dose Augmentin is the key to his healing. When he was on it for two months, things were great, but the doctor took him off. Now I just have to find a doc that will keep prescribing it HIGH dose for LONGER term. Are any of the key docs. ok with this? I am apprehensive about Dr. K as he fought me on this and took him off.

Could anyone who has their child on Augmentin XR or has in the past, weigh in on the time frame of symptom reduction especially tics. Thanks!

Dr. K did take my son off all antibiotics at the one year mark. It did not work for him and we are doing IVIG number 2 soon. We did get him on antibiotics after the one year, but it was zithro which did not work as well as the Augmentin for my son and he has gotten worse. He is currently back on Augmentin, but we have not gotten him as good as before. If things are well at the one year mark, I would not back off!

I am with you on this. Feel overwhelmed and exhausted with tics and sleep issues. These are my sons main issues for the last 3 1/2 years. We are heading for IVIG number 2 pretty soon. Hoping to get some relief. Is there a tic medication out there that works for tics for PANDAS? We have a prescription for Tenex but have not tried it as we are waiting for IVIG. What about Topamax? Anyone had success? We have always gone the PANDAS route, but my son is so tired of it all and we are considering working with the meds. Anyone have success?

Is Dr. Harris also helping PANDAS kids that do not have Lyme or only Lyme? SF Mom: have you done the lyme testing or are you doing it with Dr. Harris? Please let me know how things go in August. I am considering making the drive to see him. Just not sure as I have driven and flown my son to so many doctors, that I am now very choosy in who I take him to. Maybe I will get the testing done first and see where to go from there. Is it hard to get a lab to draw for it? Is the test expensive?

Did he have a tooth recently fall out? That could be part of the problem. It seems to be a big problem around here. My son had 2 teeth fall out a couple of months ago and have had a huge increase in tics and night time anxiety. We are still trying to get things back to stable.

My question is, who are the doctors willing to prescribe these doses long periods? Dr. K did not for our son. He did prescribe for 2 months the 875 mg twice daily which was great. My son was doing well. Then after 2 months he took him off of everything. Now my son after about 5 months has had the worst problems yet. His local doctor prescribed Augmentin at 500 mg twice a day, but things are still pretty bumpy and we are looking at doing IVIG #2 here locally. I would also like to do the higher Augmentin again, but out of luck on doctors that will prescribe that high of dose, long term. It has been a year and a half since we saw Dr. K so he will not prescribe anything.

We are looking at doing IVIG at Choram in Nevada. We met with the neurologist on Monday. I gave her Chorams info which is right around the corner from her office. She has agreed to do the IVIG. She is deciding between Choram or the local hospital. I have spoken with our local Choram on the phone a few times. They sound great. They do require an in state doctor to prescribe the IVIG. We will likely do the IVIG at one of the places next week (Hopefully next week!).

It would be great if we could get them all pinned up top!!!

What is his plan to get him to 95%. How does he think this can happen?