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?

My son is also one that over eats as well. He says he always feels hungry. He has gained 25 pounds this year. I do feel it is more than just the usual growing spurt as many friends have commented on how much he eats and he will eat until over full. I wonder if there is something off in their system.

Thank you, thank you, thank you all with a big shout out to Kelly and Vickie.

Thank you all for your hard work and dedication. Kelly and Vicky thanks for everything!

Tics are probably moderate at this point. While on Biaxin, they we closer to moderate more severe as there were more going on. They are changing weekly and he seems to have two going on right now. They change in severity daily and sometimes hourly. We have found a neurologist in town that said she would do IVIG according to Dr. K's protocol. We meet with her tomorrow to follow up with what she wants to do after talking with Dr. K. Thanks for the good thoughts.

Just wondering if anyone's insurance had denied coverage for IVIG, but okay'd for PEX? Our insurance denied IVIG a year and a half ago due to "experimental" for PANDAS. Do you think it would be the same for PEX?

I hope all goes well. I believe your son was primarily tics and OCD was minor? Is that correct? Post pex did the tics return during exasperations or what symptoms returned? Thanks!

Unfortunately nothing good to report yet. We have finished it and today is day 6(one day past the last steroid pill). It sounds like many have had a delayed response. Hoping that is our case. Please send us positive thoughts.

Mary, glad to hear things are pretty good. Do you think the Topamax is keeping things under contol? Are there any side effects that he has from the medicine and do you do sprinkle caps or pills?

We are 18 months past IVIG. Things were better past the IVIG, but not smooth sailing as I had hoped. My son had just turned 10 when he got the IVIG. Tics seem to be the hardest one to be successful with. Since the IVIG, my son had strep and H1n1 and a few other things that made healing more difficult. Teeth also seem to cause him problems(loosing and cleanings). His last problem was set off by losing two teeth and an ear infection back to back. Usually we would just up Augmentin and things would settle. We had changed antibiotics though a few months prior and even though he is back on the Augmentin, he seems to be still having trouble. Dr. K says there are some kids that need IVIG 2 (usually around 9-15 months post and usually older kids with tics). We seem to in some ways fit that pattern. Most of the other Pandas doctors don't really see ivig as a cure. More of a treatment. A lot of the illnesses that use IVIG also use it more of a treatment than cure. Hard to say. We are weighing our options at this point. I am feeling that it is worth it to give ivig another shot if needed. My thoughts are that I do not want him to have permanent damage and feel it is the best chance to avoid that and heal. These are difficult choices to make for our children. A few doctors that we have spoken to have said to start trying tic medications instead. I am not sure what the best choice is. For the long run, I am leaning towards another shot at ivig.

All though we have been down this Pandas road for quite awhile and tried many treatments including IVIG, we have never until recently done a steroid burst. We are in day 3 of a 5 day burst. The good news: no worse tics as I had feared, the bad news: not any better yet. For those with tics, what was your time frame for improvement? Is a five day even enough for improvement? Thanks!

Would steroid burst make yeast worse? Thanks!