trggirl

Thanks!

I don't even know enough to comment on this, but those of you that are digging into studies, I think this one is a good paper to read. I keep thinking about the high CamK and the phosphorylation that is taking place as well as all the Calcium it is pulling. That has to be affecting things in a negative way. http://www.clinchem.org/cgi/content/full/53/6/999

I thought I read/heard somewhere that the kids with tics tend to have higher CaM kinase ll levels. I also heard that the kids with anorexia are more likely to need a repeat IVIG so I would suspect that those kids also have higher CaM kinase ll levels. I know that we had an extremely high Camk level and I would not consider us an extreme PANDAS case. Not in tics or OCD. I do think her ADHD is extreme though.

Michael, how do you feel it affects you? Does it make you more relaxed? Less racing mind? etc,

Thank you for the input! Dr. Latimer did order an immune panel. While I have not seen the results in person, Faith at Dr. Latimers told me they were normal. I am very interested in whether there is a C. diff or Pseudomonas component to this. It does seem that it is a connection with a few of us. EAMom, I am not sure what Dr. Latimer was thinking on the C. Diff. I did get the distinct impression that it was not a common thing. She come across as very concerned and worried about it. And again, she was very clear that she could not give antibiotics anymore. She also seemed perplexed at the high Camk without any high neuronal antibodies. If I remember correctly, she said that she had seen it a time or two, but again, it was not common. I will say on the high CamK, I would not classify my daughter as a severe debilitating case of PANDAS. Life is very hard because of her lack of focus and quirkiness, but we are surviving at the moment. It just makes it hard for her to get school work done and it hurts her socially and from a self-esteem aspect. And I suspect there are a lot more thoughts going on in her head than she lets on too. It's not completely obvious though. She just seems quirky. So that does make me wonder at what the CamK is doing in the brain. SF Mom, I have talked to Diana but not since all this occurred. That is a good idea to call her. Falling apart, my ped was against antibiotics from the start so I am just getting the "I told you so" look. It's hard to argue with that 3 week success though. In my opinion, it's a huge clue to what is going on.

Hi, I thought I would repost our journey since it is taking a few different turns. I welcome all input because at the moment, I am lost. My daughter started ticcing last year, 3 weeks after a strep infection. In hindsite though, she has always had issues. Some History: She had low-grade fever for the first 3-4 years of her life constantly. She had horrible, horrible reflux. We had to change her sheets 3 times a day because she would vomit significantly after every bottle or meal and at every nap. This continued through at least Kindergarten off and on. Prevacid did help it. She had 2-3 kidney infections. She had a full-blown measles rash after her MMR. When she was about 2 1/2 yo, she woke up in the middle of the night clutching her head and crying, "head-hurt, head-hurt". We jumped in the car and on the way to the hospital, she started vomiting. She ended up hospitalized for 3 days on fluids and antibiotics but they never figured out what was wrong with her. I remember around 3yo, she had some difficult times. Rages and anger. I just wrote it off as the terrible threes. It was not constant. Just every once in awhile. Maybe 3-4 times a year. In the past, we always just thought it was tiredness This continues even now. My daughter has always been hyper, talkative, and distracted but very sweet. If you sent her to do something, you always had to follow her around because she was on to something else. She is still like that to this day. Several people used the word precocious when she was younger. She has always struggled to sit at the dinner table. It's just hard for her. In October of 2008 she came down with strep. Three weeks later she started shoulder shrugging. She then started having hard times at school finishing her work and staying on task. She developed a vocal tic of saying "yes, yes, yes". This was in 1st grade. As the year progressed, we did some supplements and things got worse, then better and we had a good summer. Distractiveness was still there, but no tics. In October of 2009 she got strep again. I immediately noticed a new tic of raising her hands in the air. It started out like she was straightening her sleeves but by January, she was doing it many times in a minute. She was also sniffing over and over. From January to March, she struggled. She had age regression and constant talking which hurt her socially, she could not complete her work, and she had strong defiance off and on. We saw minor OCD things like repeating her words until they sounded right and doing things over and over until it felt right. She also said she had bad thoughts in her head. In hindsite, she was also confessing to all sorts of minor things. If I thought about it, I could probably write a list of minor things she was doing, but nothing like anorexia or refusing to leave the house. We got blood work done and she had high Absolute Lymphocytes, high Bilirubin, and her Cunningham test came back as 237. All her anti-neuronal antibodies were normal. We flew to see Dr. Latimer in March. She put her on Augmentin 400mg twice daily and we gave her 2 pearls (probiotics) daily. We started on a Sunday and the following week her grades went from 20's and 30's to A's and B's. It was amazing!! Tics decreased to almost nothing. She was just different. She talked to me on a more mature level and seemed to be thinking about what she said and did before acting. She was still a little slow at completing work but for the first time since October, she was getting her schoolwork done. At week 4, I could see some issues. She seemed a bit more difficult and she had a few "off" grades. At week 5, she started vomiting. She vomited at least 15 times and was running 104 fever. I took her to our pediatrician who diagnosed it as a virus. We went home and she seemed to improve. I started the Augmentin back and after 2 doses, she started vomiting again. I took her back to the pediatrician and called Dr. Latimer. They ran blood, urine and stool samples. She came back positive for Pseudomonas aeruginosa in her urine and Clostridium difficile in her stool. Dr. Latimer said it is too dangerous to give antibiotics now and asked if we had thought of IVIG. So this is where we are at now. Not sure where to go from here. Even if we did IVIG (which I am not completely comfortable), we could not follow with antibiotics. How effective would this be?? I know strep pushed us over the edge, but is strep really the whole cause of all this??? Could there be other bugs involved? Clostridium? Pseudomonas? Yeast? I do think it is strange that she got Clostridium after such a short time of being on antibiotics. I am also not comfortable proceeding knowing that her anti-neuronal levels are normal. Any thoughts on what is pushing that Cunningham so high and how to proceed?? Any more tests we can take to try to narrow things down? All opinions and comments are welcome. I am truly lost here.

We saw her. She will not give antibiotics.

Thanks Peg!

Peg, do you know what literature said 1.5g/Kg for PANDAS? I am only aware of the IVIG/Plasma exchange study that used 2g/Kg done over 2 days. That one must have slipped by me.

Hi, We had a similar experience with Neurology at Texas Children's in Houston although the people we met with were not particularly nice. They acted like I was crazy. They were aware of the studies, they just didn't buy off on them. They knew all the controversy surrounding them. It was a very frustrating experience. After 3 different doctors in the Houston area, we flew to see Dr. Latimer. Please keep us updated if you find doctors that are good in Houston and Texas. At the moment, I have given up.

Glad it went well and it's behind y'all Peg!

Melanie, that is awesome news!!!!

Another thanks! I'm glad to have this as I was just talking to my pediatrician about this issue.

im sure I will be dissappointed too no med has ever helped so what the heck what was the 1st bad thing you saw? Hes going to start it at night so if hes tired he will atleast sleep keep your fingers crossed melanie The first thing we saw was the nightmares and night fears. She was very tired the first couple of days so hopefully he will sleep well tonight.

I really hope it works out for you! I really wanted it to work for us. I was so disappointed.

how long into starting this did you see things sprial...? how long after you stopped did it take things to go back to baseline? Fixit, we started seeing things spiral within a week. She kept taking it because we wanted to see if she would adjust to it. It just got worse as time went on. We stopped it after around 3, maybe 4 weeks. I don't remember exactly. It took about 2 weeks to get back to baseline. I should also mention that we had low blood pressure issues the first week. We never raised the dose from the 1mg because her BP stayed low.

The tics got worse. It really was a very dramatic downward spiral. She became afraid of snakes in her bed and would not sleep in it. She had horrible nightmares. Her hands shook when she played the piano because she was afraid of making a mistake. Piano practicing would end in tears and meltdowns. She was coming home with 0's on her paper because she would not do them. I think these are things that are always there with her, but she is able to work through and conquor. After starting the Intuniv, it just sent her over the edge. And quite honestly, it really surprised me. I really thought Intuniv would be the one to help her. I put a lot of research into it before starting.

We tried it but did not get good results at all. She focusing got worse and she became scared of everything. It was a terrible experience.

I voted and it is on my facebook!

I'm so sorry. I am asking myself the same questions. I keep wishing we were 2 years ahead and had lots more studies and papers. Yet I'm so grateful that we even know about PANDAS now.

I just wanted to post and say hang in there.

Thanks for posting this! It will be interesting to see what happens.

Nevergiveup, I have not heard that Augmentin was better for tics. Do you know where Dr. Murphy got that information? Was it her own observations or a study? That would be good information to have.

Just bumping this up a bit. I have heard about this also and was hoping someone had more details.

Thank you for the update! I know you probably posted this already, but did you do the Cunningham test? I did find where you said your son's Lymphs were always high during bloodwork (as are my daughters). I probably did not go back far enough to find the Cunningham info.