Dedee and Ronnas

[P_Mom]

Hi Ladies,

I was wondering if the two of you could do me a big favor? WHEN YOU HAVE TIME, could you give me a quick run down on your boys with PANDAS? I mean, quickly let me know how everything started, and how they are today? Could you also include your course of treatments, diet, and what they currently take ( including supps.) and also how you deal with strep or flair-ups of symptoms? I know you two have been dealing with this for a good bit of time now, and I am a fairly new PANDAS MOM. I have tried to go through all your posts, but, I keep getting you two confused and have a hard time finding the info. I want. I would appreciate it sooooo much!!!!!!!! THANK YOU IN ADVANCE!!!!!!!

 

Kelly

[Dedee]

Kelly,

 

I am sorry it took me so long to respond. I have been away for Christmas and so busy I haven't had time to check the board. Hope you had a good Christmas as well. I will try to sum things up as best I can and I hope that I don't leave out anything important. At age 5, my son suddenly experienced an "explosive" overnight transformation with severe OCD symptoms including constant handwashing, fears of contamination, fear of harm to parents and loved ones, etc. This occured as he was finishing a round of antibiotics for a strep infection. We were not given a PANDAS diagnosis at that time. We did start him on an SSRI (Zoloft, at that time), so that he could function in school, which worked very well for him, and things went back to a relatively normal state. When he was 7 yrs old he got strep again, and he began to have some behavioral problems in school, more emotional, seperation anxiety, so we changed his SSRI around which helped a little, but we were still not given a PANDAS diagnosis and I was just in the dark as to what to do. He was maintaining fairly well, but I knew in my heart that he had so much more potential. He just struggled so much, and didn't seem happy like the other children. He always complained that he didn't have any friends. It always broke my heart. So anyway, when he was about 9, he started getting alot of ear infections for no real reason, very strange. He ended up getting tubes in his ears at 9 years of age. Very odd. Then at age 11, during the school year, he got strep throat three times, just one right after another. Well, you can imagine we were very concerned and when the third came back positive, and we had already talked to his pediatrician about taking his tonsils out since he had been infected three times since school had started. (We were still pondering the possibility) On the second day of his strep infection, while on antiobiotics, he woke that morning with violent, frequent, head jerking and eye rolling tics. My husband thought he was having some sort of seizure because they were so bad. My son had never had any sort of tic before. At that time he was started on Abilify 2.5mg, by a neurologist. This did help his tics, but it made him so sleepy that he could hardly stay awake in school. We also scheduled him to have his tonsils removed. While he was recovering from his tonsilectomy we stopped the abilify and he was on post-op antibiotics. At that time we noticed that he was completely free from tics. We were so excited thinking that having his tonisls removed had taken care of the tics. However, when the antibiotics were finished, the tics returned within about 48 hours. I thought that maybe it was a coincidence, so I called my pediatrician and spoke to her about my observation and asked if she would agree to put him back on and see what happened. She agreed and gave me a prescription. Of course, you can imagine the results, after 24 hours his tics were better and after 48 hours they were gone. This is when I decided that I needed to take matters into my own hands and do my own research. Much to my surprise, when I started doing research I found my PANDAS diagnosis. So, again I go back to my pediatrician with what I have found, and she says yes she has always thought that was what he has had, but there really isn't anything to do but treat the symptoms. (Thanks for telling me!) So we talk about the whole antibiotic issue and she said that she really isn't comfortable giving me long term antibiotic therapy for him without a specialist giving the OK. So, I think fair enough, I'll just take him to a specialist. (Yeah, right). Well, we go see a ID, who basically thinks that PANDAS is over rated and you should only take antibiotics is you have a positive culture. I left there mad. Then we went to a pediatric neurologist who said he could take them for a while then he needed to switch over to some anti-siezure medicine. We didn't go back. So then, I printed off the study from the NIMH on antibiotic therapy and PANDAS, I took that to my pediatrician and asked her to just give me enough antibiotics till I could get in to see Dr. Murphy. Thanks goodness she agreed. It took about 5 months to see Dr. Murphy from the time I called to get on the waiting list and we traveled about 8 hours. But I assure you it was worth every minute and every mile.

 

Basically Dr. Murphy validated that he needed the antibiotics based on the fact that he had been on and off of them several times by then with documentation that his symptoms would return each time that they were stopped. I mean you could almost time it to the hour of when his tics would return after stopping the antibiotics. It is almost scarry. Of course she reviewed his lab work, his titers and have alway remained extremely elevated, even up to a year after having a strep infection. Not unusual in a PANDAS child. She asked what he was taking and made the suggestion of adding the fish oil and increasing his probiotics. We even talked some about my other children and she suggested that I give them fish oil as well.

 

So the supplements he is currently taking are cal/mag, multi-vit, fish oil, probiotics, and amoxicillin 250mg twice daily. He has had strep once since starting the antibiotics about 15 months ago. That was a little over a week ago. He is doing very well. He did get a few tics from that for about two days, but really nothing that caused us much stress. We really only added some epsom salt baths and a little extra calcium/mag. I don't think anyone noticed but family, as they were very mild. I believe if he hadn't been treated so quickly or already on antibiotics it could have been so much worse.

 

My son is doing so well now as compared to how he was doing a couple of years ago. I am so thankful for the changes that the antibiotics have made not only in his tics but also in his behavior. He has made straight A's all year this year in school and has more friends than ever before. He is just so much happier. We have not really followed a specific diet. I started in the beginning but he was so resistant that he stopped eating and then he had his tonsils out, so we never really tried it agian. I know that so many people have great luck with that and I applaud their hard work and dedication.

 

I can't think of anything else to tell you. Hope this is helpful.

Have a great New Year!

 

Dedee

[michele]

Good questions Kelly. I was also wondering if he was able to remain on the Amox afterwards or if they have to use a stronger antibiotic daily. Omniseph has worked the best for us during PANDAS episodes. While on it my son has almost no symptoms definately no cracking tics. He still frequents the potty but it is much much better. Even his moods are milder. We have even let up on the strict gf diet. How do you convince the Dr.'s to keep him on this as a prophylaxis? Others here have had luck getting Dr.'s to give azith daily. I wonder if they had tapped out on the other antibiotics first. We have tried pen vk, augmentin but omniseph is the best thus far. We only have a few days left on it. In fact our ped didn't like giving a three week dose. Luckily she was willing to do it after Dr. Murphy suggested it. We need a Dr. to collaborate with our ped. She is out of her realm with this. She is willing to work with us but would like a Dr. to go to. Did anyone find Dr. Murphy willing to talk with their home based Dr.'s? I was considering emailing her about it.

 

Michele

Dedee,

I am so very grateful for the time you took to reply to my post!! Our stories are similiar as my 5 year old started with sudden, explosive onset of ocd/vocal tics this summer after strep. I want to do what is best NOW, and it helps soooo much to see what has helped other PANDAS Moms and their kids. I am so happy your son is doing well now, especially after having strep again, your story gives me much hope and some days I really need that because some things I hear and read are so scary. We have an appt. with a Doctor in Ohio on the 17th of Jan., and I am pretty sure he will prescribe a preventative antibiotic, which is what I am hoping for. My son, Ethan, is doing well now, even off antibiotics, and my goal is to keep the NASTY strep away so he stays that way!!

Two questions, what did you do, I mean what antibiotic did you give your son last week when he tested positive for strep? How long will you give him that until you go back to the Amox. twice daily?

THANK YOU!!!!!!!!!!!!!!!

Kelly

[Dedee]

To answer your question, we gave him Augmentin 875mg twice daily for ten days then went straight back to the Amoxicillin 250mg twice daily. As I said we really only hit a very mild bump in the road with this occurance and he still continues to do well. I hold my breath to see what the rest of the winter brings. Time will tell. My pediatrician doesn't mind doing this of course because Dr. Murphy has written the letter of recomendation stating that this is the best course of action for him. Now, I am not sure what will happen if things were to get worse or whatever. I suspect we would make a call and make another trip back to see Dr. Murphy to discuss the need to switch preventive antibiotics or what she might suggest at that point. But I try not to look for trouble where it doesn't exist. So far so good. Hope this is helpful and I hope you have good luck with your son in the new year.

 

Dedee