MMC

Well, DS has refused to go to first acupuncture appt today, had to cancel it. He wasn't too keen on this type of therapy. We explained the needles are tiny and are hardly noticeable. Maybe we can talk him into it later. He is about fed up with all the doctor visits he has had to endure over the last 4.5 years...does not think anyone can help him at this point. And we have to drive to MD to see Dr L on Friday, so we didn't make him go today.

Nope, JoyBop, this is not normal teenager stuff. I wish that's all it was...we can handle that. Thanks for your thoughts, though.

Glad to hear the good report, Grace...prayers were answered. Amen, qannie47

In the evenings, DS15 is prone to “spacing out” lately. Almost like a petit mal, absence type seizure that lasts several hours until falling asleep. We’ve seen this about 6 times in the past 2 months, last night’s was a bad one. We’ve seen this some in past since having PANDAS, but infrequently. Here is the timeline from yesterday, which is a good example of what happens… Day (Saturday) starts normally He helped mow the grass for about an hour, no complaints or problems Just before dinner or shortly thereafter, he got really quiet Sat and played video game Would not respond appropriately to questions Would not do normal chores, such as taking out trash Last night, he walked around house bouncing ball, up and down the hall Displayed some aggression by rubbing ball on the floor hard, then ripped it up Will sometimes throw cushions off the couch Then, “collapsed” on the couch, and watched tv, although its more of a blank stare If asked, are you ok?, all he can do is shrug shoulders, is non-verbal at this point Eyes look dilated, although they are typically dilated Eventually goes to sleep on couch Responds ok when waked to go to bed Next morning, complains of fatigue Today, it took until lunch time to appear normal with some energy, and come out of it Did not remember any details He has said in the past that he knew something was not right when he had an episode He has not been sick lately, but has tested positive for dust mite allergy. Someone suggested we monitor his glucose level, so we got a monitor a few weeks ago. Sugar levels have been between 103 to 135, without fasting. It was 110 last night. This is normal from what I understand. He has had one eeg in the past, which was normal. We see Dr Latimer on Friday, first time since summer of 2012. Some of our frustration with all of this is the lack of a local specialist who understands PANDAS / PANS, as most of you can identify with. What do you guys think, is this PANDAS / PANS related? Or something different that could be causing this PANS type reaction? I searched the PANDAS forum for seizures and read a few posts in the past. Each day, he struggles mainly with tics and some OCD. I could give a timeline of treatment, but rough draft… plasmapheresis, T&A, plasmapheresis again. One HD IVIG in the past (with bad side effects). He has also had Lyme treatment (no positive Lyme test), for nine months, a couple of years ago…many combos of Abx. Is typically on Augmentin or Pen VK, his ASO titers are not high. We’ve tried other things as well, all kinds of testing, methylation regulation, etc. He is definitively PANS per Dr L, as his symptoms increase after any bug or virus. Unlike our daughter who is PANDAS only, just bad after strep. Any thoughts and comments appreciated.

This post peaked my interest. Acupuncture is something we have not tried and DS15 still needs help. I found an experienced, Chinese acupuncturist 3 mins down the street from my work (Raleigh, NC)...first appt is 9/16. $160 for initial visit, $70 for all other visits. My wife had acupuncture years ago and said it helped her, and so she is not hesitant to let DS try this treatment. It's worth a try and price is fairly low compared to other dr visits we've had. I will have to update in the future, hopefully with positive results, which we cannot seem to get no matter what.

I do believe in prayer and the Lord's grace, said one for you and your kids.

Good point 911RN! I thought I saw dollar signs in his eyes, haha. We may just watch and see how it goes since we have the bedding under control now...b/c we just had no idea in the past. He's only shown symptoms for about a month. Nothing else was positive on the test, only dust mites and dust. I think I have the same allergy. I just want to do all I can for him to keep his PANDAS/PANS symptoms to a minimum.

Thanks for the recommendations, everyone. We have washed bedding and put encasements on the mattress and bought a new pillow and pillow encasement. We cleaned his room and bedroom floor, which is hardwood, so this is a benefit. I guess we will try the shots, DS is not afraid of needles. I've heard it takes a long time for the immunotherapy to build up and work. I'm a little nervous about the shots effect on the immune system, but if it helps resist this allergy, this would be a good thing.

DS15 just completed allergy testing today because of allergy symptoms lately. Dust Mites / Dust is the only positive finding, it was a 4+. Previous allergy testing three years ago was all negative. Doctor is recommending allergy shots. Anyone else on here have a child with allergies and is getting allergy shots? If we get this allergy under control, could it help PANS symptoms to subside? Doctor also recommended dust mite proof bedding, so we are doing that starting today. DS still struggles with tics and OCD. He just started 9th grade last week.

It sounds like a tic that is aggravated by her walking motion. Our DS has certain tics when he is walking or standing. And his tics move all over the place... neck, face, abdomen, back, legs, feet, any muscle group can have a tic. We do not know how to resolve his tics.

I second what pr40 says...it can take years. After 4.5 years, DS15 is still trying to recover. He has never recovered from his tics, they just move around. His OCD is actually worse, but mild compared to others that I read about. Our DD17 has recovered 90%, but her symptoms were never as bad as DS's. So, I think it depends on each child, and the severity it hits them.

I am sorry to hear this...hope PEX helps. DS15 has reflux symptoms a lot lately, and yesterday he told me his stomach feels funny. He cannot eat much without feeling abnormal in the gut, even though he is hungry. I am thinking hiatal hernia. He has always had a severely pronounced chest / diaphragm tic (over 4 years now). I am thinking it has caused or aggravated a hernia...sees our family doc tomorrow morning. If he needs surgery, I don't know how he will ever recover b/c of his tic, that is about every 4 seconds. I hate this disorder too...never ending suffering for our kids.

Our DS15 cannot talk about PANDAS either. He will not read about others who have the illness, or attempt to gain any understanding of it. He says he just wants to be normal. Today is his 2nd CBT/HRT appointment. His main issue is tics, but OCD sure has flaired up in the last 6 months, so we sought out this treatment at Duke with Dr Gammons. I hope he cooperates enough to gain from it.

This is a valid question, considering most peds and mainstream neurologists will not prescribe long term prophylactic antibiotics. We have had two sources, Dr L and Dr C in NC. Dr C recently left his hospital practice and is setting up private practice. We hope to go to him for future antibiotics needs, just to have someone more local. The Rx dates are going to run out for both our PANDAS kids in a couple of months, so this is a concern.

Tics are our Ds's primary issue as well, although a good bit of OCD has surfaced in the last 6 months. He has been struggling with PANDAS for over 4 years now. I know he would be happy if his tics would resolve 95%! We would be ecstatic. I think its rare to see PANDAS symptoms resolve 100% in kids...although, some have seen this, I know. Heck, I had a PANDAS-like illness as a kid (SC), and my symptoms are not totally resolved...90 to 95% I would say. So, some of this mess can stick with you for a long time. Most docs would say 95% is great...and they really don't know how to accurately advise how to clear to 100%. They may suggest try this, try that, but they really don't know. The brain is far too complex, and our kids vary too widely in genetic predispositions, immune systems, etc. Our Dd's tics have resolved about 90% I would say, although she still has some OCD and ADD. She is 17, PANDAS started when she was 5. So, we hope to see the same for Ds. His PANDAS did not start until age 10, and he just turned 15.

Our doctor we use for proph antibiotics (Pen VK) is leaving his practice, not sure where he is going. The official letter from the large hospital group did not state if he was going into private practice, just that he was leaving the practice. Is anyone using a doctor in NC who prescribes proph antibiotics? I could go to Latimer, and may have to, but would prefer someone local that takes insurance. The previous doctor or his PA would give a yearly Pen VK script. It is hard to find a doctor who will do this. It has worked well for us in preventing strep, and our plan is to prescribe until age 20 or so for both DD and DS.

Our PANDAS kids actually digressed quite a bit with math, mainly due to ADD/ADHD type issues. I have heard many parents say their PANDAS child math skills went way down, and this is our observance with both of ours. DS14 has really struggled with math this year. A tutor has helped some, but he does not test well. He has his math EOG today actually. We hope he passes it. So, you are lucky that yours is excelling in this area.

Agreed, really good article, thanks for sharing the link EAMom. Especially the history lesson of Sydenham's Chorea and RF. I was diagnosed with SC when I was 7...so, no big surprise to us that we have two PANDAS kids...it is heart breaking, but makes sense. If only all the doctors, from family physicians to the big-named high and mighty specialists could make sense of it, or admit to it...that would me happy and allow all our kids to get quicker, more complete treatment. It will take time. But, time sure does move slow when your kid is being controlled by PANDAS instead of his/her old self.

Pandasphilly, I have read other posts from parents on the forum here that state they or their spouse had PANDAS - like symptoms during their pediatric years. I suspect it often is, but not always. I know for our family, it is. Perhaps, its a combination of genetics from both parents that comes into play. My sister had PANDAS symptoms as well, but much less severe than mine. Her children did not have PANDAS, but one did (does) have Crohn's, another autoimmune disorder. Our father had RA, an autoimmune disorder. PANDAS/PANS sure is more prevalent in children these days and this begs the question, why? Vaccine damage to immune systems? I hope the medical community can figure more of this out for the sake of our potential grandchildren.

Thank you for sharing, Chad. Your history sounds very similiar to mine. I am much older than you, 48. My symptoms started at age 7 after strep throat, high fever and hallucinations (only one episode). I developed PANDAS and chorea symptoms shortly after and was diagnosed with Sydenham's Chorea. There was no PANDAS diagnosis back in 1972. By age 15, I was clear of most of my symptoms. Like you, I now have minor tics and some slight OCD that no one would ever know about. I never had my tonsils removed. My "treatment" was monthly bicillin shots which was a prophylactic against strep...and later, oral Pen VK until age 21. I struggled with math, and barely made it thru college level, but I did with tutoring...ADD meds would have helped most likely. I now have two children with PANDAS, and one has the PANS part as well (DS14 with the worse symptoms). DD17 is doing very well...her main symptom is ADD, which is controlled by meds. DS14 is struggling. His PANDAS started shortly after one strep episode at the age of 10, and we are constantly trying to help him with various treatments. He just missed 10 days of school, went back today thankfully. Anyway...please be aware PANDAS has a genetic component that can be passed down to children. I would never tell anyone not to have children, but it is something to be aware of.

Thanks for those thoughts Hopeny, we may have to seek a psychiatrist. We are just concerned b/c he's never had many psych symptoms, but this open wound in his mouth and really caused some issues. He seems a little hyper at the moment, but makes sense when he talks...but still has some weird behavior.

Local ped prescribed .5mg Lorazepam (ativan) for anxiety, since mouth tic will not subside. We gave one pill early afternoon, and now DS14 is acting really strange. Would this med have a psychotic effect? Or opposite effect in PANDAS kids? What would you suggest for lessening of OCD symptoms? This mouth tic he has will not stop, he is biting the inside of his cheek...also has what looks like thrush on his tongue and Dr prescribed Clotrimazole 10mg lozenges...(I wanted diflucan, but did not get it). Also, dr prescribed Prozac 10mg and said he can start taking it now with the Lorazepam. We are just worried about all this new medication and what it will do, but this mouth tic has to stop. Dentist said the ulcer will not heal until he can stop biting it, will take 7 days. I think the open ulcer is allowing yeast in from the thrush!! We are in a very bad place, worse than ever. **Actually, my wife told me he was acting strange before taking the new meds today...so, we need to try and see if meds help, hopefully will. He is constantly asking for pain meds b/c his cheek hurts to bad...we hardly know what to do, but hope thrush/yeast will be rid and he can get better.

We saw Dr T for first time on 3/30. He reviewed labwork with us last week, saw DS14 had EBV (mono)... (recently b/c we had him tested twice last year and both were negative, last test was Nov 2012). Started him on Valtrex. Also started clindamycin, since he had never taken that before. He then got a lesion outside lower lip, that looks like herpes simplex...so valtrex should help this as well. On top of alll this, he lost his last baby tooth, a molar. So, this may have introduced bacteria, but he was on the abx. Since all this has started, he has developed the mouth tic again, like an OCD complusion to bite and suck the inside of his left cheek. He has had this before, and has now come back in full force. So, he has an open ulcer in his mouth. We are treating with salt water and peroxide rinses. He cannot attend school, hard to eat and drink, in lots of pain. We give him pain meds. Was just wondering if valtrex would CAUSE this, he has never had this anti-viral drug before. We are afraid he will have to be hospitalized...but, that might make things worse, trying to explain everything, etc.

We had a really bad experience with DS about a year ago when he had two permanent teeth extracted up top to make room and prep for braces. He had nitrous that time as well. It hit him hard that evening with uncontrollable tics. Missed school the next day. He previously had nitrous several times before, so it must have been the teeth extraction or a combination. He does have one MTHFR gene mutation, so we are leary of nitrous now. He was even on Augmentin at the time, but whatever got in his system, he couldn't handle it. It was bad. We never noticed a flair with losing baby teeth, but he was 10 when PANDAS started, so a lot of teeth were lost by then. And recently, I posted about his difficult time with braces...he kept them for only a week, had to get them removed because he couldn't tolerate the inflammation. It caused an increase in tics, with the worse being a bad mouth tic where he bit his cheek constantly causing an ulcer. He could barely eat or drink. Off came the braces...he can get them again when he is an adult as far as I am concerned...hoping by then, PANDAS symptoms will have resolved.

We had a T&A done last summer upon Dr Latimer's recommendation. We cannot tell that it helped, but are glad we did it before DS14 got older. It is done now and we don't have to worry about what might be hiding in the tonsils and adnoids. The tissue was cultured, no strep found (we were hoping it would be), but Haemophilus Influenzae was found. The ENT did not think that to be too unusual. There is no way to really culture this tissue, exept to take it out, as far as I know...so we are glad we did it.