dee45

what was your cam kinase level? Deanna

Hello, I quickly read your post so I hope I did not skip anything It sounds like you did have a strept test done ? is that right? If not than that is something you have to do. Is he still on antibiotics? I know how frustrating this but hang in there you are doing the right things. I am just curious about the strept component. Deanna

Anthony's level 145 tics vary mild to moderate. Deanna

Hi, WELCOME!! you have found the right place for help. I agree with all the previous posts. You need to get that strept . keep us posted. Dea

Thanks Michele--glad things are going well for you! Deanna

Thanks Michele--glad things are going well for you! Deanna

Thanks for the encouragment. I will keep you posted. I mentioned to Dr. Latimer on my visit that I could not get a hold of her via phone messages or emails she assured me things would be better. well she prooved that tonight she answered my email with in 45 minutes that is awesome!!! Deanna

Hi again, just sent Dr. Latimer and email and she just emailed back she said the Augmentin is more effective give it some time so I guess thats what i will do. I really get to despise these ups and downs. thanks Faith for the response. Deanna

Hi Faith, his head tic is his predominat tic yes he was having them here and there before the switch but there is a definate increase going on now. I don't know if the 2 are equivelant I think the Augmentin is stronger> Deanna

Hi, need some help. We saw Dr. Latimer on the 30th of October that same week Anthony had a fever the first 3 days. She switched him form Pen-v-k to Augentin which we started 4 days ago He seems to be having increase in his head tics. I should also mention the H1N1 flu mist was given at his school last week he did not get it though but was probably exposed. so my question should I go back to pen-v-k or give the Agmentin more time I am so confused. any feed back would be greatly appreciated. Deanna

Hi faith, he is not a candidate for anything invasive IVIG/PEX. Anthony weighs 68.5 pounds. Yes he was on Topamax when we first saw her but wasn't even on a therapeutic dose so she adjusted that. She feels the Topamax is a great drug that does control the tics and said she had met with a Doctor recently at a conference and was going to start using it more. It has really no side effects at least none that we have noticed. She wants to keep him on this and the Augmentin. Deanna

Hi Faith, Dr. Latimer actually said Anthony fit the PANDAS criteria. One dose of the steroid he was very agitated the best way for me to describe it is that he looked like he was coming out of his skin. He stated by that evening "I feel like I'm in a box" so I called her and she said to stop. Maybe if he wasn't starting school in 2 days I would have given it a little more time. I brought this up when we saw her on last week and she said some kids/people just can't take steroids. I asked her as well because we can't take them if things would get worse and she said no. She switched or antibotic and he is on Topamax which she says helps the tics. She does not beleive at this point he is a candidate, he has tics but they wax and wane. We are swithing to Augmentin this weekend 500mg twice a day. Hope you have a good weekend. Deanna

Hi Faith, Anthony sounds so similar to your son his tics are mostly head and neck tics some eye rolling minor OCD tyoe things His cam-kinase was 145 and we did try the steroids for one day but with bad results. Dr. L swithced us from pen-v-k to Augmentin what antibiotic did she prescribe for you?? Deanna

Hello, did not switch Anthony yet. I don't think that the switch could cause such a flair up but this whole thing is so confusing what triggers and what doesn't. Keep us posted. good luck Deanna

Hi, I wonder why she did not address that. shoot her another email tonight and follow up with a phone call in the am, I would not be surprised if she had you just stop or taper the dose. Like I said in previous post she told me on Friday some kids do have bad reactions to steroids just like Anthony did. let me know how things go. Deanna

Char, hang in there, I know how you are feeling but hopefully you can get him in tomorrow. I would call Dr. Latimer in the am and ask about the steroids. Did you state in your email to her if you could just stop them?? what day are you on? Deanna

Buster, I would love to be included with Anthony's results. just tell me what you need. thanks what a great idea. Deanna

Hi Char, when ANthony had such a bad reaction to just one dose I called and she did call me right back. I know its Sunday but try today she should be on call. If you are that upset than it is an emergency and you should not give calling her a second thought. keep us posted. Hugs to Canada. Deanna

Hi Char, Anthony did not tolerate steroids we only made it through one day!! He was the worst that I had seen him in 2 years. I told this to Dr. Latimer on Friday because Anthonys cam kinase score is 145 and I know that the the course of treatment appears to be antibiotics, steroids, IVIG/PEx. she stated some kids just can't tolerate steroids she did not want to try them again with Anthony but did switch his antibiotic from pen-v-k to augmentin. You can not give Motrin/ibuprofen with steroids Benadryl I beleive is ok. I hope things get better Char. Hang in there. Deanna

Hello, I read your posts and alot sounds similar to what has taken place with our son Anthony. I felt after tons of research and reading that he fit the PANDAS category but it took me a year and a half to finally find a doctor who would eventaully validate this. so read everything don't leave any stone unturned. you have found a great site with tons of info and awesome people who are always willing to help. best of luck . Deanna

I have read that some kids do have increase tics on taurine. Deanna

Hi Faith, this our second time seeing her we saw her in August. Anthony has had head tics and eye rolling tics of that nature. cam-kinase score 146. he is 10 and weighs 68.5 pounds and she wrote a script for Augmentin 500mg twice a day. Deanna

Hi, I also wanted to everyone that Dr. Latimer swithced Anthony from pen-v-k to augumentin. She says that augmentin is probably the most effective drug and has been using it more. she says it gets to the strept that may be hiding out in the gut or in the anal area as well. Anthony is also on Topamax she did not prescribe that but went to a conference and said she will be prescribing it more. those with elevated cam-kinase scores also have elevated glutamine levels they go hand in hand . the reason topamax works so well is that it decreases this in the brain which then causes less tics. hope I am explaining this right. hope everyone has good weekend. Deanna

Hello, we saw Dr. Latimer today I did ask her about her thoughts on the flu shot. She seemed at first like she did not know what to say. she began by saying that children are dieing from the H1NI flu however they(meaning neurologist) saw alot of ill effects after the vaccine was given in the 70's. She said her children were not getting the vaccine. So I guess that means not to get it. I felt like she was giving me info but did not want to committ either way. Deanna

Hi, when we saw Dr. Latimer in August she said was totally against any flu shot seasonal or H1N1 we see her tomorrow I will let you know what she says. Deanna