bmom

I have noticed my husband do some tics that I only see while he is driving. I dont think he is changing it himself, but it just changes while driving.

Thanks MyRose. This was the blog I was referring to that moms posted success. There are 2 number 18's. Keep going down the replies until the numbers start over again and it is #18 and #20 that talk about Dr. Sims.

I am trying to reason this out as well. In a lot of ways, it makes sense and yet in other ways it doesn't. Is it possible that food and allergies and strep could cause infammation in the brain and nerves around the jaw and cause tics? The allignment of the jaw relieves pressure on these nerves and tics stop? That's all I can come up with. My husband has minor tics. His jaw does pop while eating like he may have TMJ. My son has PANDAS which IVIG seems to have mainly cured. I don't know where this would fit in or if it even does! I did read some successes from parents on another board with Dr. Sims though so who knows. Parents that see him please post results.

I called the office as I just like to keep up on everything regarding tics. The receptionist said it is not hard to get in for an appointment (about a week) and the total cost for appointment and appliance would be about $3,000. They would give forms that can be turned in for reimbursement for insurance, but I am not sure if insurance would cover it.

Michelle, I have been where you are at- trying to convince doctors, seeking treatment from doctors who supposedly knew something of PANDAS. I feel I wasted precious time and that my son became tired of going to these doctors who did nothing and could tell me no more than I already knew. If I had to do it all over again, I would go directly to the doctors talked about in here that have actually made a difference. Hopefully Dr. Latimer will be that one for you.

I meant kids jerk a little while sleeping. Dreams...etc.

I started my son on a new probiotic and was scared that it may bring on tics. I was watching him sleep last night and saw some jerking- I was scared that he would be ticcing today because of it. Nothing today. They just seem to do a lot of moving and jerking in sleep I guess-good luck.

Putting my prayers in for you guys!!!

We have upped my son from the 250 mg to 500 mg of Augmentin daily. The pharmacist gave us the 500 mg pills. My question is would you break it in half and do 250 mg every 12 hours or would you do one pill in the morning? I do a probiotic daily and kefir which we do in the afternoon to not interfere with the anitibiotic, but the most important to us is to keep the antibiotic effective in the system. What do you think? We give it around 9 am and he is usually in bed by 9:30 pm so I dont know if that would be needed in the evening.

He is doing pretty well. I am going to email Dr. K about the Augmentin. When we all got strep, he also got strep on the 250 mg. Things settled down with a round of full dose Azith. I emailed doc K and he about upping him to 500 mg. due to this and weight. He said yes. I have delayed and he is still on 250 mg. I was going to up it in the summer. Now I am wondering if I should as I dont want to if it is not needed. Maybe I will up it until 1 year post IVIG which is in 6 months. I dont want him to catch strep, but I want him on lowest dose. Thoughts? All in all, he is doing well. He still has some night time anxiety. Very mild tics here and there, but not always, and light sensitivity (some, not nearly as bad). Thanks for asking. (I also cried when I read your story).

Just wondering if anyone knew if Dr. Latimer uses strep antibody levels as a requirement for the PANDAS diagnoses and treatment?

I have spoken with many doctors that do IVIG routinely for other disorders. They do not believe that it is that dangerous. For my son, tonsil removal was much worse! I wonder what the risks for that is and yet it is done all the time. IVIG has been a god send for us and we are finally putting our family and life back together. I also spoke with Swedo's assistant prior to IVIG. She did say it was reserved for extreme cases, but when I asked why? She did not have a response nor did she when I asked what the risks are now. So is it the price out of pocket? I do and would take it seriously, but for some it is an option - maybe not a full cure in all cases (ours included so far) but at least a clear improvement.

Dr. K also refers to it as a form of encephalitis. It blows my mind how it is so interconnected to already proven illnesses and yet doctors don't believe. I have spent hours going over the encephalitis stuff and it makes complete sense!

Thanks Caryn! I will be waiting for the summary. I am glad they are selling the talks. Have to say I am a little jealous! I would have loved to gone and meet Sheila as well! Please let us know how to purchase the videos.

Just wanted to add. When I read of treatments for encephalitas (PANDAS is a form of this) it talked of antibiotics for some, IVIG for others, and if this did not work, steroids and IVIG for more severe cases. So that would make sense.

PMOM, How much are your sons 250 or 500 mg? Dr. K probably does know better. They had not ok'd it with Dr. K when I went in. They said they would get ahold of him, but until then I could just do 2 daily. I did not as I am waiting for school to be out. I will specifically ask for the 500 mg when I go in. Thanks!

Good question. Thanks. This is something I have been thinking about lately as well. My son is on 250 mg. of Augmentin one time daily. He is doing well, but did get strep on this. I emailed Dr. K and asked him because of that and his age (10) and weight (85 Lbs) if the dose should be higher. He said yes and ok'd 500 mg. The pharmacy just doubled the # of pills. I did read somewhere that one should not do 2 pills of 250 mg. because of the amount of potassium that is in them, but instead should be given a 500 mg pills (this was not referring to PANDAS, but in general). It said that the clavulanate potassium should remain the same and the augmentin dose should just be higher which is supposively what is in the 500 mg. dose. So any advice on this would be helpful. I am going to email Dr. K and ask him what to do as well. I have not started the higher dose as he is doing well and I just want to wait until summer. I do think I will start it though as I do not want him to get strep again. The half life makes sence though although makes it a little more difficult to time the probiotics- at least 2 hours after antibiotics.

My son did not and has not taken steroids. I was somewhat worried about them as his main symptoms were tics. I also thought I would have him go through with the IVIG no matter the result so I never requested them.

Great to hear. We have just finished our 6 months post IVIG and continue to do well also. I dont think we ever had any major "turning of the pages", but possibly some minor ones FYI. I am praying that it is a long term cure for all of those that have chosen to have their child go this route.

Dee, Just wondering if your son is using sprinkle caps or the other? Thanks.

Michelle, Well I am not Kelly, but I think you meant me. We are 6 months post IVIG. My son is 10. He had just turned 10 when we got the IVIG. I think that is important because he did have an immediate response, but I do think it took a little while to see the more complete effects. He does not really wax and wane like before. We will see a blip for a day here or there. Perhaps this is turning back the pages. He hasn't had a fever since post IVIG and not a bad cold either so hard to say what would happen. He did start having urination problems that progressively were getting worse. He was not sick that I could tell. Dr. K said get him strep tested and sure enough he was positive as was the whole family (no sick symptoms). After a few days with Zith and Augmentin, this died down and we are back to baseline. Baseline is the ticcing once in awhile for a day or two, but the tics are much less then pre IVIG. Night time separation still has hung on, but seems to be getting better. Urination problems are gone. Ticcing is 90% better and sometimes more. (This was his main symptom prior to IVIG).

The tourettes vs. PANDAS problem was the worst part of this whole thing for me. I spent a year trying to figure it out. I thought if I knew the diagnosis, I could find the path for my son. With each doctor, there was a different diagnosis. I got tourettes from some and PANDAS from others. My son only had tics at first. He did progress into urination problems. I never really noticed handwriting issues although his handwriting has always been bad. We never tried the steroids as I was nervous that it could make things worse. I finally decided to take a leap of faith even though I wasn't 100% sure of the PANDAS. We did IVIG last November and it has been the right path for my son. Things are not symptom free, but still way worth it. They are both immune issues and vaccinations effect both. My thought is that IVIG would not hurt even if it was Tourettes in my sons case. It has in fact helped his allergies as well. Good luck as I know I just wanted to make the right choice for my son and I still hope everyday that I did.

Chris W.- I was just wondering how much your son weighs? I think my son who is ten is on 250 mg Augmentin a day. I will have to look. Thanks.

Just thought I woud respond. My sons symptoms began as mainly and only tics. It then progressed into some separation anxiety and urination issues over time. We are five months post IVIG and although it has been some bumps along the way and not quite 100% the IVIG has been well worth it.

That is wonderful to hear. We are 5 months post IVIG with Dr. K for tics as the main symptom, yet also some night time separation anxiety and frequent urination issues. My son is much better. It hasn't been 100% symptom free, but he also had an ear infection and was diagnosed with strep 3 1/2 months post IVIG. All in all, things are better. He is 10 so it is possibly taking longer too. Dr. K has had more success with augmentin and prefers that. He has talked about switching my son if the Augmentin continues to not keep the strep away. Thanks for posting!!