nicklemama

I agree I'd not change abx and add lamictal at the same time. One or the other. My son has been on lamictal since April for his anger/raging (before we knew about PANDAS). It did help but it did not completely control anger/raging. I will tell you it takes a while to build up to a therapeutic dose. You have to go "low and slow". You want to avoid an allergic reaction that is rare but serious.

Still lurking around w/ my PTSD radar on, lol! No major meltdowns. Got mad yesterday that he had to do homework before watching tv after school. The good news is, after making his anger known, he sat down in a chair quietly w/ his arms folded. A few minutes later, he got up and he read to me and then did the homework page from his reading. He asked quite a few "what if" questions this morning before school. Hadn't heard these in a while. I haven't seen any more eye blinks since. Overall, he's hanging in there. We are still plotting his behavior/symtom chart. I'm taking it to show the ped this afternoon. I am paranoid. I think its out of total fear that he will return to the worst in PANDAS behavior. Need the Cunningham results. Arrived at her lab on Nov 10. I think our ped will be more convinced and I know the neurologist will be. She's anxiously awaiting it. Have ped appt this afternoon to show her how DS is doing. She last saw him two days after biaxin started. I am going to flat out ask/tell her we need her on board and need her help. I am taking her my copy of Saving Sammy. As much as we love Dr T, he cannot be the primary go to. He's out of state for us. He's busy. He travels. He's in demand. He should be there for consulting and helping our pediatrician. Wish me luck! Cindy

Oh, gosh, so many things to think about. DS6 will be 7 next week. He is in first grade this year. I don't know how he managed to do so well in kindy. He was a top student and still is. 1st grade teacher sent me a message home after he'd been on biaxin two weeks to tell me how much his social skills had been improving and how much better he seemed to be (even though he's reading well above grade level and his math skills are above, as well). She did not know he'd started antibiotics or anything about his diagnosis of PANDAS. He had the regular FluMist, no H1N1. The original test for lyme was the Western Blot by a lab in Utah. I have no idea whether he'd be congenital for lyme. I've had no reason to believe anything was wrong w/ him until fall 09. I did not give birth to him. He was born in St Petersburg, Russia and adopted as a 6 month old infant. He began hitting milestones right away, always healthy, rarely sick, began to be ahead of his age group in gross and fine motor skills and cognitive skills at about 1 yr of age. We didn't realize it, but he is gifted. We found out last Dec when we had him evaluated by a child psychologist because of all these sudden behaviors he was exhibiting and we had no answers for. We were told he was gifted and had anxiety, common in gifted children. This also coincided w/ him getting better after his first episode. Most want to blame genetics (must have a crazy birthmom) or institutionalization. Never mind he was perfectly fine before the Flu Mist. Tampicc- I will keep in touch. Our sons do seem to have a lot of similarities. I just can't go back. Our lives were so awful when he was in full blown PANDAS. He is currently on Lamictal because his raging got so out of hand at home in the spring. We thought he had some mood disorder or something. One dr told us he had Aspergers. Those symptoms disappeared on biaxin. He's been so "normal". I know he doesn't want to go back to where he was. It was awful for him, as well. He's such a sweet and wonderful little boy. I know you all understand my fears of returning to where we've just been. We've got to figure out what is causing his PANDAS. Thank you for listening. I know everyone here has their own similar story to tell and, unfortunately, live. Cindy

We actually don't know exactly what is going on w/ him. He's never been tested by throat swab for strep or anything else when sick. He had bloodwork at the time he was diagnosed w/ PANDAS back in Oct 10. Everything was negative. Negative strep titers. Negative myco titers. Negative for lyme. The only thing he had out of whack is a very low ferritin level of 14, where the lowest range of normal at this lab was 22. He wasn't "sick" at the time of his tentative diagnosis, except for all the behaviors that had been going on since Mar 10 w/out remitting and were getting worse. His PANDAS diagnosis has come from the response to biaxin, which was quick. Within a couple of days, the anger, irritibility, rages were gone. It took about a week or so before the eye blinking went away. The ocd's have slowly remitted. He still has some but they aren't interferring. The last thing that has gone was the throat clearing tic. He has not been "sick" since a double ear infection in Feb that set this whole thing off again. I have mulled over in my mind if it is possible he has other infections like lyme or bartonella. I just don't know how or where he would have gotten them. Lyme disease is rare in SE MI. He's never been bitten by a tick that we are aware of. All this was set off in Oct 09 by the FluMist vax, followed by an illness of nasal and chest congestion and cough, along w/ a high fever that was treated as the flu, therefore, nothing but motrin was given. I was afraid this might happen. I'm going to give it a few more days and see if things level off. I do have one 10 day refill for biaxin left. It was supposed to be for an emergency. If things keep going downhill, I'll call Dr T's office and see where we go from here. I just hate calling and sounding like a crazy parent. How could he start going downhill so quickly when he was doing so well? I'm not getting help from anyone local. Only Dr T has listened and helped. Thank you everyone for your ideas and suggestions. I am willing to listen to anything. I cannot stand the thought of my son going back to where he just came from. Cindy

DS6 has been off biaxin for exactly one day. That’s two doses worth. His last dose was yesterday morning. This afternoon, he’s a little irritable. Dh took him skiing and he went down five runs, refused to do more and got a little upset. Just now, dh was taking the bottles and cans to the store to return. DS always helps dh. He decided he didn’t want to go, didn’t want dh to go, so he sat in front of the door to the garage to try and keep dh from going. I went in and asked him what he thought he was accomplishing by sitting in front of the door and he said he was sorry and got up. Then, I noticed eye blinks. He hasn’t had eye blinks since three days after we started biaxin 60 days ago. He hasn’t had any tics in more than a week now, maybe its been two weeks since the throat clearing stopped. Is it possible its from no biaxin or am I imagining something here? Is he getting ready to go right back to the old PANDAS behaviors? He still has some separation anxiety and some ocd's that are not interferring. His worst presenting behaviors was severe separation anxiety, which has never fully gone away but its manageable now and irritibility, anger, rages, which disappeared w/in a few days of biaxin. He has an appt w/ his pediatrician on Thurs afternoon. It was supposed to show her how well he’s doing and get her to prescribe the prophylactic azithromycin Dr T wants him to start taking twice a week. What do you all think of this? He's not "sick" and has not been sick, that we are aware, since Feb 10 when his PANDAS flared up again and went unabated until diagnosis in Oct. His original episode was in Oct 09 and it cleared up on its own in Dec 09. He went a whole year w/out diagnosis and treatment. Cindy

My DS6's experience w/ Celexa was a nightmare. This was before we knew about PANDAS.

My son was fully vaccinated. His records indicate he received the pneumococcal vaccines from Lederle, which has joined w/ Wyeth and makes Prevnar. He has not had the newer Prevnar 13. It did not stop him from ear infections. It did not stop him from getting PANDAS. His immune blood work that was ran shows NO immune problems. He is rarely sick. Unfortunately that doesn't keep you from PANDAS. He's never had a documented case of strep. His titers ASO and DNAse are normal. What got us here to PANDAS was some kind of infection following the FluMist vaccine last Oct 09. Cindy

My DS6 is doing great on biaxin. We don't know if he's got strep or myco. His titers are normal. He's never been cultured when sick. Biaxin turned his life around. He's been on biaxin for nearly two months now. We are getting ready to go on zith, prophalatictally twice a week and see what happens.

2000 iu's a day. Sunny Gummies. DS6 weighs 55lbs.

Darlene- We are a very outdoor oriented family. My DS6 could out hike everyone. He seemed to never tire and loved to be out walking. We went to Yellowstone in summer 09 w/ another family and he was a real trooper. Since PANDAS, he tires easily and frequently asks to be carried and complains his feet are hurting. He's undergoing abx treatment right now. He complains less frequently about his feet. It remains to be seen how he will recover the stamina to hike, bike, snow ski, soccer, etc... He declined to play soccer this fall. Cindy

OCD. We've only used biaxin. DS had a terrible reaction to amoxi when he was four (now I wonder if it was his first brush w/ PANDAS, caused irritibility and trantruming). Right now, what exactly is causing his PANDAS is unknown. ASO and DNAse normal. Waiting on Cunningham results. Never had a throat culture when sick. I believe that's why biaxin was chosen and it has been very effective. Raging, anger, anxiety, hyperactivity and all those ocd's has lessened a great deal. Enough so that we are currently leading normal lives but walking on eggshells waiting for the next exacerbation. I guess that's better than walking on eggshells waiting on the next big rage explosion:) Cindy

My DS6 has been complaining of the bottoms of his feet hurting for the past year. He started eye blinking tics in early Oct 10. We believe his first PANDAS episode started in Oct 09. It went untreated until Oct 10. When we started treatment nearly two months ago, the eye blinking was the first of his symptoms to go. He still tics some. Throat clearing mostly. TV and computer cause him to tic more. He's only complained of his feet hurting a few times since he started biaxin in Oct. My son has had all kinds of OCD's and fears but the worst part has been his behavior which nearly did our family in. He is so much better now. Cindy

Its so discouraging and I'm sorry you've had another door basically shut in your face. There will be a day of reckoning w/ these disbelievers. The only two professionals I have on our PANDAS side are my son's therapist, who is totally on board (but does us no good really since she's a LMSW and can't treat) and his psychiatrist. He is not going to treat for PANDAS but he was very encouraging to me at our last appt when I told him I thought DS had PANDAS. I guess its for the best. We'll continue w/ Dr T for now, but I really need the ped to get on board to help us locally and work w/ Dr T. The scary part for me is wondering who is going to treat all these children? Four experts can't possibly carry the caseload. It seems more and more people are getting the message and realizing it fits their child. Dr C has a backload of more than 100 tests to run. Cindy

My friend's son had molluscum. He had it for nearly a year. She took him repeatedly to the ped and to a dermatologist, who told her they would go away. They kept multiplying and she got tired of dealing w/ it. She ordered a naturopathic treatment online called Zymaderm. Its now widely available. She heard Walgreens carries it and lots of places online carry it now. In two weeks time putting Zymaderm on over 80 spots, he had less than 10. It took a couple of months to completely eliminate them. He'd have 5-10 at any one time. Caution, its iodine based, so if your child is allergic to iodine, don't use it.

There might be a correlation. My DS6 had his first major episode after the FluMist vax last Oct. He began his deterioration two days later. He recovered from it w/out treatment in about 6 wks. We did not realize he had PANDAS at that time. His next episode started in Mar 10. He never recovered from it until we consulted w/ Dr T in Oct. He's so much better now its unbelievable. However, we know what we are up against, he's still not 100% and know he will probably have future episodes too. Cindy

Welcome! I came here just two months ago looking for help. I am by no means the expert here. My son is 6 and has been on biaxin for two months now and he's made amazing improvements. Two months ago, he had motor and vocal tics, lots of ocd's, separation anxiety, fears, rages, many aspergerish like behaviors, In fact, a neuropsychologist who evaluated him a few weeks before I found this site told us our son was Asperger's and mood disordered. That kicked me into high gear because I was suspecting PANDAS but our son has never had a throat swab for strep when he's been sick and his titers for strep and mycoplasma are normal. Today, he has a very slight throat clearning tic. The rages, fears and many of the ocd's are gone. The ocd's left are not impacting his life. He does still get into our bed every night during the night and he has some separation anxiety still but not to the degree it was. I recommend you consider changing antibiotics, dosage and/or consult w/ one of the PANDAS experts. We sought the consult of one of the PANDAS experts, frankly because I could get no local doctor to even consider my son has PANDAS, let alone treat him. Cindy

I am planning to send a Christmas card (we do the photo cards w/ my DS in them) w/ a thank you note to Dr Cunningham's lab and to Dr T. It might be nice to send a picture so they have a face w/ a name. Cindy

I'm mixing Florastor Kids powder into applesauce. My DS6 eagerly takes it.

I loved reading this story. Thanks for sharing and good luck w/ the IVIG!

You might call a couple of the national labs in your area and inquire about coverage and getting the bloodwork done. You may be able to get it done w/ a script from Dr B. Check w/ Quest and a couple other of the big labs. I called and was told I could get the bloodwork done and covered, as long as I had a script. I have an HMO too. Fortunately, my DS's ped agreed to run all the labs. Also make sure the lab you take your child to has someone there who does pediatric blood draws. We are switching to a BCBS policy on Jan 1st so we don't need referrals and can get some coverage for out of state doctors.

You must have been talking to Dr T when I was trying to call and getting a busy signal this morning!!!!!!! LOL. I did talk to him after your consult. I am glad you got your consult w/ Dr T. I was in your shoes just about 40 days ago, when I emailed and left a voice mail message to Dr T, out of sheer desperation. He has turned my son's life around. Forty days ago, my DS was ticcing like crazy, throat clearing and eye blinking. He has/had many ocd's....counting, hoarding, repeating certain words, telling on himself, countless questions about God, talking about death, severe separation anxiety and more, unbelievably. The worst part for us was the anger, irritibility and rage. We lived through this for a year. For a year, I tried to get doctors to listen to me about how this came on so suddenly after a FluMist vax Oct 15, 2009. Our world turned upside down on Oct 17, 2009. That is the day he woke up sick and angry. We had no idea what was about to happen to him and us. The only doctor who has ever listened is Dr T. My DS has 20 more days on biaxin, for a total of 60 days, then we are going to Zithromax prophalactally and see how he does. He's about 80% back to "normal" and its only taken 40 days. We don't, at this time, know exactly what has infected our son. He's never had a throat culture or quick swab. His ASO and antiDNAse titers and mycoplasma titers came back normal, as did everything else Dr T ordered, except for ferritin, which was low. He was last sick w/ an illness in Feb 2010. We are waiting on the results of the Cunningham test. Cindy

My DS6 has been on biaxin 250 mg bid for 33 days. No problems. I am giving him Florastor probiotics each day. I do give it w/ food. Cindy

I found it at Costco, lol. Its Natrol brand of 5-HTP. The bottle says take one tablet w/ food up to 2x a day. Each tab is 100mg. It does not make me sleepy but it helps me have a really nice good deep sleep w/ no waking up in the middle of the night. The bottle says no wheat, corn, milk, egg, soy, glutens, artificial colors or flavors, added sugar or preservatives (for those who are eliminaing those ingredients).

I have tried it for myself to relieve the anxiety of dealing w/ our son. I didn't like the way it made me feel. Made me VERY sleepy and felt kind of jittery in a weird way. What I have found for myself in 5 HTP. It makes me feel relaxed and calm. Never have given either to our DS.

I'm right there w/ you. The severe separation anxiety was my son's worst presenting sign. Last fall, it was beyond awful. Its still lurking around. Went to my neighborhood Ladies Nite Out for dinner last night. Gave a hug and kiss. He followed to the garage, opened my car door, kissed again, went to the door and stood there to watch me leave and the most horrible look came across his face. Daddy tried to distract him. At bedtime, he became difficult, had a 5 min panic, but finally cooperated w/ his dad. He was asleep when I came home. At times, I, too, feel like getting in the car and driving away and never looking back. My son is 6, 5 when this all started. At this point, we are lucky that its not as severe. When I left last fall, he had a total meltdown and I would have to come home immediately so he could/would calm down. I had to lie to him to get him to go to school. He needed to know I was not leaving the school building, so I told him I would go to the library or office and help out and I would check on him occasionally but he would not see, since it was against school rules. That allowed him to go to school. Cindy