momcap

My teeth hurt when I had mono. I was really, really sick though.

Oh yes, I am hoping it is PANDAS, and not PANDAS plus Lyme, or PANDAS plus some other nasty bug. We have a consult with Dr. T on Tuesday and I'm hoping we will start the correct treatment for PANDAS. (He's been on and off a range of different antibiotics since August.)I'm not sure what that correct treatment is though. Is it antibiotics - high dose, low dose, which one(s)? Steroids? IVIG? PEX? I wish more people stayed around on the forums to share their success stories. It seems the people still on here are mostly the ones still looking for answers and still struggling through treatment options. Is it possible to have a post pinned at the top of success stories so we can see how many get better and how they got there?

We got DS(7)'s CamK score on monday - 176. I am no longer saying "maybe PANDAS". High ASO + high CamK + one out of control little boy = definitely PANDAS. I'm just hoping it's not PANDAS + ???. We have come such a long way since early August (when he was getting the diagnosis of bipolar added to his alphabet soup) and someone mentioned that I should look at strep. Wow. I should be feeling great. But then I got his report card today. 'Needs improvement' and 'progressing with difficulty' in all areas except science. This is a kid who could easily pull off As without breaking a sweat, but he refuses to do any work and spends his day disrupting his class. His teacher states, "behaviour continues to interfere with his learning". I had documentation for a full time aide a year ago, but no, they suggested all he needed was a part-time aide in the mornings, who he shares with another student. I foolishly agreed, convincing myself that I shouldn't push for more help than he needs because he might lose confidence. But the truth is, I'm not even sure a full time aide would make a difference. Now instead of celebrating how far we've come, I'm sitting here devastated. I'm trying to figure out how on earth I will manage to learn all of the special ed laws overnight so that in addition to acting as his mother and doctor I will also be able to act as lawyer/educational advocate. I am completely overwhelmed. Somebody tell me I can do this too, cause right now I'm just feeling sorry for myself. Thank you all for all the amazing advice and help so far. You've kept me going and got me this far. We would be in a very sad and dark place without this forum and I have to keep reminding myself how far we've come. One day at a time...

I was thinking about this thread this afternoon. The bright kids have bright parents who were able to figure out the PANDAS diagnosis often with little or no medical help - sometimes even with medical interference. These parents are online searching for answers and options. Meanwhile I can't help but think there must be children of all levels of intelligence with PANDAS whose parents are accepting the advice of their doctors (as I did for almost 4 years). So these kids are being misdiagnosed and mislabeled and filed away into the world of mental illness and no one stops to question why. It scares me and makes me angry. That was our situation for 4 years, and as much as I would love to take credit for figuring this out on my own, it all came down to a suggestion from a friend to look at strep. But I'll still take the credit for being able to act on that suggestion with non-stop research and tenacity when it came to convincing doctors. Just thinking out loud...

I haven't had my kids tested but I am certain all 3 would be gifted if we tested them. I'm wondering if they all have PANDAS. DS7 for sure, but the other 2 have milder symptoms. I have a genius IQ (I hate saying that), as do both my siblings. I'm also pretty sure I had PANDAS and outgrew it in my early 20s.

I questioned Aspergers in my son and the specialist could neither diagnose it, nor rule it out (gee thanks for the help). He is becoming less and less Aspie-like as he ages. I no longer think he is on the spectrum, although in his last exacerbation he was spinning and hand flapping (never saw hand flapping from him before). Who knows? If he is on the spectrum he would be VERY mild and much less so than a year ago.

No motor tics here, but he does have vocal tics daily at school, and I've heard them twice at home when he's really wound up. The vocal tics started last year and we've been dealing with severe anxiety, OCD, mood lability, etc for 4 years.

I should have made a list, but I didn't. I remember I put in the NIHM director's post, 2 of Cunningham's papers, 2 papers on IVIG in Canada listing PANDAS as an acceptable reason for IVIG, an article on PANDAS from Autism Today, a study on prophylactic antibiotic use for rheumatic fever, and I know there were others because it was about half an inch thick and I had to mail it as a "parcel". I think I also included the FAQs and info for doctors from the PANDAS resource network website. I went through all the papers and highlighted and flagged the points I wanted him to get because I was pretty sure he wouldn't take the time to actually read all of it.

I took DS7 to the pedi today, dreading the appointment. He hasn't been returning my calls since we argued about PANDAS treatment and I mailed him a stack of studies. I had booked this appointment months ago as a regular check up, so I was fearing the worst. As I walked into the office pedi turns to his new intern and says, "Mother is articulate and VERY informed" while rolling his eyes. I was stunned. What on earth could I possibly say after that? I mean, without the eye roll it could very well have been a compliment, but... Fast forward to the end of the appointment, pedi pulls out his prescription pad and says, "What do you want, penicillin, amoxicillin, zithromax?..." Then proceeds to write me a 6 month supply. I asked him then what. He says, "6 months, a year, 2 years, whatever it takes to get him better". He agreed to run all the tests Dr. T asked for. He even asked me to have Dr. T fax him or call him with recommendations so that he can learn from him. Boy oh boy did I have this doctor pegged wrong. I went in prepared to argue, plead, cry, beg, and I didn't have to do anything. I'm doing the happy dance right now!

My son does a strange whistle-y sound that I'm sure is a vocal tic. I've heard it described as "hooting, screeching, screaming," etc. by his teacher and principal. I have only heard it twice at home. It is so loud it is painful.

I was holding my breath while I watched that clip. This is my son!!!! We moved and he went berzerk. We assumed it was emotional. We got a psychiatrist. We thought it would get better. It got worse. He wanted all the lights on. He wouldn't sleep in his bed. He became incredibly defiant. OMGoodness - this is MY son!!! And here we are almost 4 years later... Does anyone know if that program is available for purchase? I would really like to see the entire episode.

Sleep deprivation is the worst. I hope you get a good night's sleep soon! Poor Allie waking up with a fever. That's usually how it goes for us too - behaviour goes haywire and then sure enough he ends up with a fever. Good luck on Monday! I'm glad your doc is working so hard to help her.

Oh ya, my ds does the carb cravings too and I can't believe what he packs down. Right now his throat hurts so badly that he isn't able to eat. I wonder if he'll jump into carbs when he feels better. Do you worry about the carbs (gluten) being inflammatory? I've been wondering about going gluten-free but trying to figure out how on earth I can do it.

I do have a list from Dr. T on his official script with all of his contact info!

You guys are wonderful!!! Thank you for reading my whining post and helping me feel better. Today is going much better than last night. DS(5) and DS(4) are back to normal and out for the afternoon with Daddy. DS(7) is not doing well, but it is so much easier to manage when we're one-on-one. Kimballot - thanks for the suggestions! I agree that we need a thread on crisis management. Motrin is my lifeline right now. Well, that and this forum!

We sent ours in September 22nd and haven't heard back yet. Sounds like they're busy.

My DS who is now 7 started with the anxiety just before turning 3. We dismissed it because we were planning a move so naturally he would suddenly have separation anxiety (previously outgoing and very social). When he turned 3 we moved and he went berzerk - raging, hurting himself, hurting others. It was very frightening. Again we contributed it to the move and spent the next 4 years in the psych system before hearing about PANDAS. Now we have high ASO (512), and a positive response to antibiotics and are 99% sure this is what we are dealing with, although I still have my moments of doubt. He started out exactly like your ds - tantrums, hyper, aggressive, knee pain. That knee pain has always made me question every psych diagnosis. No motor tics though, which I guess is where the doubt creeps it. I grew up on the border of michigan (sault ste marie, Ontario), and spent a lot of time in the upper penninsula. Welcome to the forum! I'm so glad you found us while your ds is still so young.

DS(7)-probably PANDAS-screamed all evening because his throat hurts. The screaming made it hurt more which made him even more angry, so he screamed some more. I took him to the E.R. but they said his throat looks fine. Nevermind that he has a fever. Nevermind that he had high titers (512) in August and positive throat culture in September (his throat looked fine then too). At least they did a culture, but it took 4 people to hold him down and the threat of doing a swab through his nose before he gave up and opened his mouth. What a night. And now we wait several days for the culture...The strep seems to be moving from his sinuses to his throat and back again. Everytime he gets an antibiotic it just moves to a new place. 5 antibiotics in 2 months and he's still spiking fevers. Yesterday he was spinning so I was pretty sure we were dealing with strep again/still. But who knows? DS(5) spent the evening sobbing because his arm hurts. He didn't do anything to it, it just hurts. DS(4) complained all evening about his knee hurting. What on earth is wrong with my children???! I'm saving up to do the lyme tests on all of us. By the time DH came home I was a basketcase listening to 1 kid screaming, 1 kid sobbing, and 1 kid complaining. DS(7) is aggressive, angry, irritable, defiant and his sensory processing disorder is in overdrive. He went to school in snow this morning wearing shorts. Strangly his OCD is absent. And he's never had motor tics (vocal tics, yes). Is this really PANDAS? I wish the cunninghams that we sent a month ago would come back faster! DS(5) is a strep carrier. I have asked 4 different doctors to treat him. No one will even consider it. I get that they don't treat carriers in normal cases, but if they took one look at our family history and current strep issues, what doctor would deny that this problem needs to addressed? Do they not care, are they scared to get in trouble? Why on earth won't they do something? I've asked every doctor I have access to. I've even started begging E.R. docs. I'm out of ideas to get help for DS(5). I'm going to buy some OLE tomorrow. But will that be strong enough to tackle carrier status? For those who pray, please remember us on Monday as I have to try to convince DS(7)'s pedi to order 10 blood tests suggested by Dr. T. I don't have a good relationship with this pedi after being so pushy about PANDAS, so it might be a long shot. I'm really worried. I know my stress level is not helping our situation. One day at a time...

My ds(7) is also afraid to be in any room alone and particularly hates bathrooms. This summer he was asking me to come in the bathroom with him, before finally refusing to go in there at all. He started peeing outside until he became convinced that there were bugs outside waiting to get him. This summer was pretty rough, and he cultured positive for strep in Sept. He also won't sleep alone, so we let him sleep in a double bed with his 4 year old brother. It's not ideal (especially when one of them gets sick) but it gets us through for now. The anxiety stuff is really debilitating! We tried inositol, but didn't have as much luck. It's really hard to know what to do isn't it? I believe it is critical to find a doctor who is very familiar with all of this. We're waiting on Cunninghams and doing a phone consult with Dr. T next month. I hope to have a good sense of direction after that. Right now I'm just waiting...and praying.

We just started under Dr. T's care. I emailed him and he replied 1/2 hour later! Then I called and he spoke with me for almost an hour! He gave us a list of blood tests and we are scheduled for a formal phone consult when the blood tests are completed. I am VERY happy with our experience so far. His contact info is on the website that KaraM posted. Good luck!

Thank you for the info. I'm going to get myself tested.

I have to confess I know very little about Lyme. I found out about PANDAS in August and it's been a wild ride since then. I am soooo happy to be finding answers, but with the answers come more and more questions. Even from the very little I have read about Lyme I am somewhat suspicious that both my ds7 and myself could have it (no known tick bites, but lots of strange symptoms). Does anyone have stats on passing Lyme to your unborn child. If a mother has Lyme do all of her children get it? Also, I have heard conflicting info about IGENEX. Some say it's the best of the best, some say it's experimental and gives false positives. I don't know what to make of that, but it definitely gives me pause. I'm guessing that everyone here will be in the IGENEX camp, but can anyone help me feel more confident about shelling out all that money? Is it really reliable? What is the alternative? Thanks for your help!

Sorry, I have no advice, but our stories are very similar. And wow, this is scaring me. But maybe it's a good eye opener. My probably-PANDAS son is 7, and I'm pretty sure my 5 year old son is a carrier. He's had 2 positive throat cultures with no symptoms at all. We also sent PANDAS son to his Grandparents for 2 weeks and sure enough he was better until he returned home. Of course being completely spoiled and having no demands made of him must have helped, but even his physical symptoms went away (no pains, no sensory issues). He's had 5 antibiotic scripts (penicillin x2, amoxicillin, zithro x2) since mid-August and still cultured positive again. So is he also a carrier, or is this particular infection difficult to treat, or is he getting reinfected from ds5? Since they are both positive on throat cultures I want their tonsils out. Our doctor doesn't want to do anything for ds5 because he's asymptomatic. What a nightmare. One day at a time... I think I'll look into the OLE.

I want to echo what Nancy also said - that the Zoloft can be activating. It could even be causing the suicidal thoughts and behaviours. I was given Prozac as a young teen to combat anxiety and depression. It gave me the worst feeling of my life; an out-of-control super-anxious agitation that I can not even explain. It's the worst feeling I could imagine and I never ever ever want to feel that way again. Just a thought...

Cassi, I hesitate to offer any advice, as every situation is so very different. But I can share from our experience. I am not 100% certain that my ds has PANDAS. Back in January when he was BERZERK, we did an ASO which came back normal (27) despite being treated for a strep throat infection. When he was ramping up this summer I asked for another ASO which came back at 512. We also had a positive throat culture in September. It would certainly appear that he has PANDAS with high ASO, history of strep (including scarlet fever), dramatic response to penicillin, etc. I am still waiting on Cunninghams before I make up my mind, and may never be sure. He is currently being assessed for bipolar disorder, and a part of me wishes it to be PANDAS so it won't be bipolar (how screwed up is that to wish PANDAS on my ds??). We started him on .25mg of risperidone in February after his major rage episode in January. We worked up to .75mg after 2 weeks. Our pedi told us that is a very low dose and most kids his age/size take 2-3 mg. After 4 days on .25mg he started sleeping through the night. It did help initially with his insomnia and aggression. After about a month his insomnia returned. By mid-summer he was in exacerbation and being aggressive and not sleeping. Who knows if the risperidone was helping, maybe he would have been worse without it? IDK. Then he started having chest pains, which I read is a common side effect, so with our pedi's permission we weaned him off it. He is still having chest pains, so I have no idea what is causing what. I can't answer your question about what to do or try. Only you can decide that. If you can keep dd safe then trying anything and everything has to be better than a hospitilization (in my mind anyway). But if there is any doubt as to her safety, then I would not hesitate in making the decision to admit. That's just my opinion. If my son ever has a violent rage like he had in January I will be headed to the hospital with him.