tantrums

I think you said what I was trying to say better than me Emerson. I didn't want to sound like I was criticizing the Mystery Diagnosis show. I thought it was VERY well done. And one person is the format of the show. But you see what I meant. I had some family members see that, see the really serious issues Sammy had and say "oh but Carters not like THAT!". While others though - caught some of the similarities and cried with me I thought I knew TS before this past year. I was somewhat offended when the first neuro said that is what my son had. I thought I knew what it all entailed. I have since been studying night and day on it. My DH knew even less! His first response was that Carter isn't belting out swear words. So there IS a lot to be learned about TS. And it IS frightening how similar they are!

We have had all of the immune and antibody panels done. I'm amazed my son has any blood left!! There is no other infection - no mycoplasma, no lyme, no pneumococcal... His ASO titer came down slowly and steadily. I had the immuno throw a new one on there when she did the last allergy blood test - just to see since he has been getting worse again. It was low. We see Dr. T so we've had all of his bloodwork and then some from our immunologist and various other doctors along the way. He actually has weathered the abx VERY well. Surprising!! The only issue he had was vomitting from the Biaxin, but he did get used to it after a few days. Really shocked me since I can barely handle an ABX myself. Immuno wanted to do IVIG but insurance flat out said NO WAY NO HOW! They actually have PANDAS on their list for things they will NOT do it for. Of course, it is a known no-no for TS and since he has that DX as well, that didn't help the cause. PLUS failing the steroid "test". We got a case manager with the insurance company who says she is willing to do all she can to fight for IVIG but is being realistic and based on whats done so far, it won't happen. Also tried based on his subclass deficiency, but wouldn't fly. I emailed Cunningham again today and requested the test. She had answered me last month, but it was too soon after his steroids. I guess what I'm thinking is - if I do a REAL trial with no ABX and he really does go downhill, I'll know its pandas and not TS. If he continues to float along at the level he's at without them, then it's more likely TS.

I liked the way they showed a variety of symptoms in each of the children. What scared me, since we are still bouncing between the two diagnosis, is that so many of the parents said "it started with eye blinking at age 7". This is what the doctor at CHOP was telling me, what we are likely to be facing Very very scary and I also had trouble sleeping last night. I don't think it was a bad thing that they showed kids that were so severe. That's the way it goes. Not to sound like a pot stirrer here, but what about Mystery Diagnosis? Wouldn't Sammys case being shown be likely to lead others to think some of our kids can't have PANDAS if they aren't as severe as Sammy? He was surely a very severe case and the only one shown on that show.

My son is 7. He was fine, although looking back, he DID have some transient tics since age 2. Things I didn't reckognize as tics, lip licking, shirt sucking, etc... He got H1N1 last october. Shortly after that, he developed severe seperation anxiety, vocal and motor tics aplenty, rage attacks, OCD - mainly thoughts of death and poisons, and other issues. He was diagnosed quickly with PANDAS. First round of ABX helped nearly completely. He was good for nearly 2 months after stopping them. Then he went downhill again. This has basically been the pattern now for nearly a year. I have seen numerous doctors and have numerous diagnosis at this point. However, nearly all doctors have diagnosed pandas AND TS among other things - OCD, Intermittent Explosive and now Aspergers (which he did NOT have a year ago). I started Strattera for him about a month ago and he has responded minimally to it. I do see some improvement and it is only 10mg. We just agreed to increase it today. He is just about out of ABX and I'm considering not renewing and seeing what happens. He's been on them for months now and just recently, despite ABX, his tics are increasing anyway. I don't know how to know WHICH he has! I am going to do a cunningham blood test which may tell. We did a steroid burst and it made him SOOOOO much worse! That's one of the key things that leads me again in the direction of TS. My main question is though - does the onset sound plausible to you all here? Can TS develop so rapidly? I realize he is the right age. What type of doctor may be able to REALLY help me!? I've gone to neuros, rheumatology, immunologist and am on a LONG wait list for a developmental pediatrician.

Oh - just to add a little bit - It was NOT Dr. Elias that we saw at CHOP I felt adequately warned there and didn't waste my time. We saw the chief of rheumatology who despite not being able to really help, was WONDERFUL!

Brief summary again since I haven't been here much lately... DS is 7. He had H1N1 in October 2009 and then a couple of weeks later started with severe seperation anxiety, refusal to sleep, obsessive fears about death and poison, verbal and motor tics, rage attacks and severe hyperactivity. This all escalated over maybe a 2 week period in November/December. He was rather quickly diagnosed with PANDAS due to our wonderful family doctor and suggestions from people I knew. He was put on Amoxicillin and it worked - he was about 85% better - for a while... He was good for about a month - 6 weeks then it all crept back. First neuro we took him too dx'd Tourettes. He was going rapidly downhill at this point and became violent. Our family doctor put him back on amoxi and it didn't work. She tried Omnicef and it again, helped briefly. Did ASO and antiDnase and they were elevated. Went to Dr. T who agreed with PANDAS as did CHOP. CHOP doctor also says he has Tourettes however. Psychiatrist DX Tourettes, PANDAS, Aspergers (which he did NOT have a year ago) and Intermittent Explosive Disorder. CHOP said they don't know what to do and we should go to Yale. We had just finished a steroid burst coincidentally due to a shellfish allergy and the steroids made him MUCH worse so that gave more weight to the TS diagnosis. However, when he is on ABX, his tics are better. Also started strattera which helps the ADHD and rage attacks. We have 3 days left of Azithromiacin. He has tried Omnicef, Biaxin, Amoxicillin and Azithromiacin now. None have done much good. After several months of ABX with no break - his tics are only increasing - he is now having a pretty extreme arm movement which I've never seen before. I AM going to get the Cunningham test done. We had to wait due to the steroids unfortunately. I really can't tell now if this is PANDAS or TS. I'm getting frustrated with all the different opinions. I mean, the doctors we've seen have really all been WONDERFUL and try to help, but are more opinions going to help? Do I keep trudging on with more and more doctors and more opinions? Main question here at this point is - would you get more ABX? I know Augmentin is best, but he is allergic to it, so that is out. I am seriously thinking it may be best for us to try just NOT using any more for a while and see if it makes a difference. Is that the only way, besides hopefully the Cunningham test, to know if it's TS vs. PANDAS?

Its hard to remember some times. I worked in a group home for autistic men for years and now am a case worker for the state overseeing the group homes. I've been in the field of DD for nearly 20 years. So I tend to find myself using a lot of those skills that I learned through the years. one step directions are VERY important for these kids. You just cannot say "go to your room, change into your pjs, then go brush your teeth and pick a book to read before bed." Kids, like mine anyway, just can't process all of that. If mine makes it to his room before my 5th request, he'd forget why he was there So hard to tell when they even heard you though in the first place sometimes

My DS is 7. It's not really getting much better here since his original diagnosis. I'm also concerned that some of what started as or still is OCD/ADHD is just becoming behavior. Our therapist recommended wrap around services. Not sure if that is just a pennsylvania thing? Basically, we will have 16 hours a week in home behavioral support. I'm having a hard time getting the process started (I have to get medicaid for one thing despite having my own good insurance). Or anyone else with in home behavioral help? Just wondering how you feel about it? I am a social worker so I "get" the system and dont necessarily feel terrible about people in the house (if they can help - pack em in!!) but DH doesn't seem too happy. I feel it's very important for the entire family dynamic to be seen and dealt with here. Also - our weekly counseling was pretty useless. DS would go in, play with her toys and act like a sweetie. I need someone to see it in live action and tell me what to do.

This is one I can so totally relate to! I have Chiari Malformation so I get brain fog myself. At least that's one I can have a clue as to what my son is feeling. I have to STILL remind myself though - because his is so constant and all encompassing (mine is more fleeting - day to day). The best thing I have found is just saying calm and TRYING not to loose my cool when repeating things in a monotone voice for the 38th time. I have come to realize, he is still trying to process something I said 10 minutes ago sometimes and the new thoughts will overlap. Does that make sense? So if I told him to get ready for a shower for the first time 15 minutes ago and now I've changed the request (even to try and simplify it) to "take your shoes off" - he will EXPLODE because I'm confusing him and "lying" about what I wanted him to do

Uh oh! That sounds like what my dog has - LOL! Actually not funny since he requires surgery for it and it's NOT cheap - also needs to eat RX food only anyway, he's been fine the rest of the night, but I'm going to keep a close watch. I'll watch him pee next time too. Since I've worked with DD adults for nearly 20 years, I'm also used to checking for the "smell" of a UTI. I'll definitely push the water!

My DS7 has been in an absolutely VILE mood for the past three days or so. He is very "off" in saying things, so it's kindof hard to figure what is real and what's not. He just seems to pick a fight and will go off on tangents that don't mean anything - to us anyway. So he just asked me why his "weiner feels hot". I asked him if it hurt when he peed and he said yes. So thinking, could a UTI cause the increase in pandas symptoms? I had a doctor (when we went in the past for his frequent urination before I knew of pandas) tell me boys do not get UTIs. I don't believe that, but I know its more uncommon. He's already on Zithromiacin 250mg daily. How long would you wait to see if he continues to complain of this before going to the doctor. Of course it's friday night so that would also mean either ER or the urgent care. Is there any correlation between pandas and UTI's?

Hello all! I have been posting on the pandas forums for several months now, but am wondering if I need to be here instead? My son is 7. He had H1N1 in October and shortly after, he began to have vocal and motor tics, severe seperation anxiety, difficulties in school, OCD (mainly obsessive thoughts), will not sleep, etc... This escalated rapidly to extreme behavioral outbursts that became violent - directed at me. He was diagnosed with PANDAS by our family doctor. He did have a positive strep culture at the time. She gave us antibiotics and he improved quite a bit. He was on them for about 6 weeks. When they ended, he escalated again. Went to a neurologist who said it's not pandas, but tourettes and there is no treatment. Once he became aggressive again, my family doctor agreed to give long term abx. However, his culture at the time was negative. Subsequent blood work showed he has an immune subclass dificiency. We went to a pandas doctor and he is on long term ABX high dose. He also recently tried a steroid burst and it made him much worse. Went to CHOP this week and the doctor there feels he has Tourettes as he isn't responding to pandas protocol. HOwever, she questions which it is herself as he had 1. rapid onset and 2. does respond somewhat to abx, especially since his tics are very minimal with it. But of course, steroids would make TS worse... So I have many questions. Is it common for a child to have such a dramatic appearance of TS? I know he is the right age group for this, but so suddenly? He did have very minimal transient tics since age 2, but none of the behavioral issues. He did NOT have any signs of ADHD until October and it is extreme at this point. I know they can be comorbid but the time frame just seems so suspicious. What kind of doctor do I need to see? We've been to two neurologists, a rheumatologist and an immunologist. Going back to the immunologist tomorrow actually to ask her about the subclass deficiency and if that is playing any part in this. What I wonder is - if illness can increase TS symptoms, is being on abx just keeping him from getting ill which is why some of it has improved. We are also in counseling and I have agreed to a psychiatric evaluation at this point. I have stopped giving ABX since they aren't helping (and we tried 4 different ones). Any guidance is helpful!!

Wow! It must have been a really good thing for DH to come with us to the doctor for once! I told him about the cunningham test and he (who usually gets ticked off at spending that kind of money for things he questions) said "lets get it then!" Will be working on that asap

I had no idea the cunningham test could show me if it may be TS or pandas! That will definately be a route to take then! Not knowing which it is for sure is just the worst! And I can't take the bouncing back and forth Will watch closely the next couple of weeks to see if the steroids had any impact. His morning was off the charts and I was dreading the trip (90 minute each way) but he actually was quite good. He was ticcing all over her office which was interesting. I'm glad she saw it though. Funny how he does that at the doctors. I thought most kids were the opposite. He rarely tics anymore, but bring him to a doctor and he's one tic after another.

It really wasn't all bad. We saw Dr. Finkle, Chief of rheumatology. I liked her. She seemed very well informed. She feels he has Tourettes rather than PANDAS and honestly, I'm willing to accept that possibility. He isn't responding to pandas protocols. However, she also questions as I do, why does he get a little better on abx? I questioned if it is because he has a subclass deficiency. So if TS is aggravated by illness, is the abx preventing some illness propholactically and keeping some of it at bay? She says she doesn't know and refers me back to immunology. But I have to say - I've wondered myself over the past few months WHICH is this??? Basically that is the question Dr. Finkle shares although her general opinion is TS. She suggests we go to Yale! Or contact Dr. Swedo. I told her I was concerned since I have read that if it is pandas and you treat with TS meds, it can make it so much worse - and vice versa So basically - we took a day, went to CHOP and got nowhere. Much as everyone predicted Now I'm just once again, not sure which direction to go in. So DH and I are considering dropping all the ABX right now and letting our psychologist refer us to the psychiatrist and attempt some anti anxiety meds for him.

My DS7 had a bad reaction to shellfish during vacation and incidentally wound up on prednisone 30mg twice a day. I thought "okay so we're trying a prednisone burst" which we were going to do since I am now considering IVIG. He's on his third ABX and none seem to be effective. They help a little - I see hardly any tics and minimal rages at least, but he is still just a miserable unhappy child who has tantrums that last up to an hour over the littlest thing. He still has obsessive thoughts and seperation anxiety is actually increasing. We are on day 5 of the prednisone and I think he's worse!!! He's like what we referred to as "steroid boy" when he used to take it for chronic croup when he was little, which is what I was afraid of. So if he isn't responding well to prednisone, doesn't that mean the IVIG wouldn't be effective? We happen to have our appointment with Dr. Finkle today at CHOP. I'm so disheartened I don't even know why we are going at this point. What am I hoping for? I'm starting to think we're at the best point we're going to be and this is going to be our lives from now on He woke up SOAKED this morning, I mean his HAIR was wet from wetting the bed despite getting up twice in the night to pee. He was crying and miserable bc he had done it, yet refuses to shower as of yet. He says he is starving but refuses to eat unless I give him gluten (WTF??). He agreed to an egg, but it wasn't ROUND enough so he pitched a fit over it. He's now drawing his 7th or 8th birthday card for a friend whose birthday is in OCTOBER! And now I made him cry bc I asked if he was drawing his friends in jail and it was them in the trampoline. I can't deal with this!!!!!!!!!!!!

So we just got back from a 5 day trip to Maine, which honestly I was terrified of! Actually, aside from the expected misery during the long stretches in the car, it wasn't bad at all. DS7 did enjoy the change of pace and different scenery. There were issues with wanting to buy things every single place we went and not being able to decide what he wanted. But overall, MUCH better than I had thought it would go. And really, I should say, the ride home today (all 12 hours of it) were much better than I would have ever thought. Big issue though - DS discovered shellfish and LOVED it! However, it doesn't love him! He had a bad allergic reaction and we ended up in the ER in Boothbay last night. Upon returning home tonight, we ended up in our ER tonight. He has such bad hives that I'm really scared for him. His joints are all swollen. Last night it was his one foot and he couldn't walk well - tonight his hands. So this leads me to two questions... Do I have to question the fish oil supplements? I was going to call the nutritionist tomorrow to double check. I can't tell anything by the bottle. And... the ER doc tonight prescribed steroids (and also gave him an epi shot ). Dr. T had said we should try a steroid burst upon returning home from vacation to see how it effects him. What is the usual dose for a steroid burst and how long? I'm wondering if I should ask Dr. T to work off of this 5 day RX from the hospital rather than running this out and then starting again shortly.

Best of luck to you with all of it!!! Hang in there

He is currently laying on the floor outside the bathroom yelling that he has to poop. But he is afraid to go into the bathroom. There is not enough wine in the world!!!!!!!!!!! How do you get everyone checked? Do you just ask the family doctor to order it for everyone in the house?

Think I'm feeling like a zoo tiger. Caged and declawed. I'm sure I'll get it back. I get like this sometimes. I'm just so tired from lack of sleep and no energy to deal with anything. I'm sure I'll eventually get back up and at it and moving full force to beat down the panda Best of luck on that taper!!! And to everyone else!

Thanks everyone. Seriously - I'm at work and hardly doing anything. Just have NO energy at all in me. Luckily I have to go to a meeting soon. I'm better at field work. I enjoy my clients. CHOP in philly. Dr. Terri Finkle. Her resume is impressive. Hope that means something. Yesterday, we had counseling. Today we have the nutritionist. Next week the dentist since we need to do that more often. Then the visit to CHOP. I'm tired of the appointments, the drama, the fights...

I think my own feelings and actions wax and wane as much as DS's do. But these past few days, I'm just NOT doing well. Just a reminder since I'm not a consistent poster - DS just turned 7. He began in NOvember with tics, sep anxiety, rage attacks, etc... a couple of weeks after H1N1. Our ped and immunologist were wonderful in working with me and dxing pandas although both were admittedly at a loss as to what to do. Ped did rx long term ammox which helped tremendously. saw the neruo in february who was useless and said he "just" has tourettes. At that point, he was sliding downhill again. During the past month or so, he has just been on a downhill path seemingly no matter what we do! Have tried different abx (using Dr. T now as well), have gone gluten free, using supplements, started counseling. NONE of it seems to be doing any good. He is full force with the sep. anxiety, is having panic attacks. He is once again doing things we haven't seen since November - breathing deeply so that he can hear himself. He thinks he is going to stop breathing and die and needs constant reassurance that he will survive. He is frequently washing hands and panicking that he touched poisons. He will not sleep alone. He is physically attached to me every second we are home (thank GOD somehow he doesn't yet fight going to camp!), screams and yells if anything doesnt go his way. He is trying to break his bones, rip out his tongue and banging his head. I feel like I live in a group home. My job is to oversee group homes for autistic children. Then I feel like I'm going home to it at night. I am taking ativan now. Have discovered wine and am chainsmoking (outside only of course) like nobody's business. We are going on vacation on saturday and I don't want to go!!! I'm sure it will be ######! After vacation, we are seeing the rheumatologist at CHOP. Dr. T also said we can try the steroid burst after our vacation. He is immuno deficient so IVIG is a good possibility here and I am seriously considering it now. Thank you for being here. I hate sounding like a whiner. But it's just one of those days I think!

It's definitely a problem for my son. And yes, I do believe it is a common symptom

That is the jist of the message I was thinking of sending - not getting into a convo on FB about it. Her staff is just AWFUL! In fact, when I brought my son right when pandas started, I couldn't speak about it in front of him so I wrote a list of what had been going on and gave it to her nurse. Nurse looked at it and asked me "what have you been letting this child watch on TV??!!" Seriously, if this woman wasn't a fantastic, caring doctor, I'd not put up with them! It's also at least 6 months between appts no matter how soon SHE says she wants to see him again I'll try again to google for another email first though. It's really my last resort! I'd rather not cross that boundary.

I have been trying to get in touch with my immunologist. She is really fantastic. However, getting in touch with her is yet another story. I got all sorts of bloodwork results and am starting to seriously consider IVIG. However, I'd like her input. she asked me to let her know when I had these bloodwork results. I faxed the bloodwork to her office with a facesheet asking for her to contact me - gave email and cell phone. Called after several days to see if she got the message and was told the bloodwork is in fact in his file. But did she SEE it or my note???? Left message to ask her to call me. Nothing. I really value her opinion. Plus, I'd like to know if IVIG is something she can do and/or would recommend. I found her on facebook. Normally, I would NEVER contact a doctor that way, but I'm starting to loose patience. I was thinking a personal note with my email and apologizing for contacting her that way. I searched for another email for her and can't find anything. She mentioned having some patients email her. Their website has no contact info other than the phone number.