Priscilla

Thank you. The rage is definitely and issue for us. Zith was horrible, just really upset her stomach. We are now on Augmentin, switching to xr today. I am intrigued because I have always thought there wasn't an active strep infection (elevated ASO though). Her naturopath seems to think there is no active infection, but was very concerned about gastrointestinal system. HMMMM! makes me think. Thanks so much

oops sorry, just noticed you are treating for OCD. Was this dx through a stool sample??

Could you elaborate on the clostridia causing tics.... Is there any link to the OCD aspect?? Any resources to look further into this ?? thanks

Yes, consult a PANDAS dr ASAP- neg strep culture DOES NOT rule out PANDAS, NEITHER DOES non elevated strep antibody titers. PANDAS is a clinical diagnosis. PITAND and PANDAS go hand in hand, there is evidence that this reaction can be caused by other infections, virus... As I believe is the case w/ us. The recent throat issue is a concern for strep though, but again, this is a clinical diagnosis. There is research testing at OK university for a lab called Cam Kinase II. You may search the web to see if you could send blood in for this test (kits are obtained from the university, it is called a Cunningham's test. It may give you some back up in the diagnosis. If you can't find a PANDAS dr, find a pediatrician willing to rx antibiotics. Typically used are Augmentin, azithromycin, penicillin, and my daughter intially responded well to Omnicef. The family may still pursue the other consults, but it is worth ruling PANDAS out with research and antibiotic therapy. It is so important to arm yourself with information, and don't back down if you feel this is really what is happening to this child. It can be very tough to find Drs willing to acknowledge PANDAS here, I hope you have success in the UK. You can check thepandasresourcenetwork.com or pandasnetwork.org or Web pediatrics has a page on PANDAS/ PITAND. It wouldn't hurt to print info, and highlight matching symptions to take to Dr consults. This forum is a GREAT resource for information and support. The family will NEED support from other families dealing with this. It can be very traumatic, we grieve the loss of our "true child". There are success stories to keep us focused on the brigther side as well. Please keep us updated.

1 week after IVIG 1 was HORRIBLE for us. we had stopped abx a few days before,but restarted because it was so bad. May just be "turning of the pages". We still have 2 more ivig tx and I am going to keep her on abx for them, then try a VERY SLOW wean off. Best wishes

I am not sure about the C test that far after IVIG, but Dr C told me not to do the test because IVIG would effect it- not sure for how long. My Dr said that in his experience, kids were needing at least 3 IVIG to get best results. So he ordered 4 for us. Not sure if that helps at all, but best of luck to you.

I would certainly try to find a dr in the area to have him seen for PANDAS. Symptoms don't always come on abrublty right after the infection. My daughter was sick in dec 09, took a course of antibiotics at that time, then slowly went downhill until April when she SUDDENLY became very severe, with panic attacks, ocd, meltdowns, tics, motor and vocal, jumping instead of walking.... I have seen videos of children losing the necessary motor skills to walk. I have even seen a clip about a girl that was wheelchair bound for weeks. He should be tried on antibiotics (used for PANDAS), My daughter didn't see improvement for 10 days (normal course would be done by then) then she was perfect, only to return when they were stopped. This has been ongoing since april, and still on abx, not fully controlled. It is not a quick fix, but wasting time going down the wrong path could cost him. Like I said, this seems HIGHLY suspicious for PANDAS/ PITAND. If you can't find a dr in your area, some of them will do phone consults. Best wishes to you!

I would say yes, just because my dd8 had initial strep infection (<1yr) that I believe started this years ago, but I believe she has had many other exacerbations d/t viral type illnesses, and that is where the PITAND comes in. Influenza seems to be the worst trigger for her. I think once the immune glitch has started, it can be triggered by other illness. My dd had elevated ASO after a viral type flu with absolutely no signs of strep. I am thinking maybe these rogue strep antibodies could be triggered without even any strep antigen present, just another illness to set off the immune response. That is my theory, it would make a lot of sense for our history. Hope it gets better for you.

Absolutely not! I am a RN, personally I think the h1n1 scare was to bump up pharmaceutical profits. My daughter has received the flu TWICE within 48 hours of a flu shot, I don't care what they say- too much to be a coincidence to me. One of the shots led to a POSITIVE influenze test the week after, tonsils swelled, never went down, and had to removed d/t obstructive sleep apnea. Thats a whole other story, they kept telling me that her tonsils weren't that enlarged. she COULDN't breathe!!! I spent 9 mos waking her up every night and repositioning her to be able to breathe better. Finally, she fell asleep in dr office, and he heard, then immediately said "they need to come out" DUH,I've been saying it for 9MOS!!! She gained 4 lbs and grew an inch within a month of having them removed. Sorry I am venting now, but I know 1st hand how these vax are pushed upon people, especially in the hospital, HELLO, they are sick, why vax them now- even in CRITICAL CARE! Sorry again, this one reallllllly bugs me. I will also tell you that a pretty large %% of the doctors also refuse to get these flu shots. OH, and 1 more important thing, my daughter had hin1 in Dec 2009, that was the trigger for the most severe exacerbation yet (led to PANDAS/PITAND diagnosis) still not under control. I would advise against exposing our children to ANY vaccines at this point (my personal opinion)

Thanks for your reply. We have been fortunate enough to have IVIG covered by our insurance, just completed 2nd infusion on Aug 28. I would just like follow the study, very interested in the results. I suspect my dd has been suffering from this for a long time. Acute exacerbation in April still not under control. I think it was building since last dec though. Just trying to be patient and give time for IVIG to work.

I may be a little late on this one, but I just watched a video YOU TUBE and Dr Susan Schulman stated that there is new a study underway for IVIG treating PANDAS, I think 30 children are to be studied. I just want to see if anyone knows about this. Where is it being done? can we follow the study?

Well it sounds like you are talking about my dd 8, starting 3rd grade too. I absolutely KNOW that stress is very hard on them. The less my dd is rushed, the better she is. We have stopped all extra curricular activities and I have to say, just that, has decreased my stress, so she is positively affected. I spend so much time wanting to give her all these opportunities I didn't have, swimming, dance, gymnastics... That I wasn't focusing on what is really important, our time together. I truly believe that God has plan for my dd, and she will be well one day. My lesson in all of this suffering is to slow down and enjoy our time together, not rushing around, but doing things on our time. I understand the school and homework thing, and I am afraid too. My plan of attack is to be present as much as possible and help to make her homework fun (will be harder than it sounds, and I work full time too) but in the end, the blueprint for our precious little ones is already written, we need just love and support to make them the best they can be, if they aren't scholars, so be it, they may just suprise us without a perfect education. God knows they will have strength and courage beyond their years! I wish you all the best. God bless.

If you do decide to stop abx I would recommend a very slow wean (over several months) along w/ probiotics to give her system time to adjust appropriately. My father had told me about something he read about stopping the abx and a sort of rebounding of bacteria (good and bad) that can overwhelm the system. It makes perfect sense to me. When we get to that point, a VERY SLOW wean will be my plan. I am also giving the fish oil in case it is the anti-inflammatory effects of the abx giving the most benefit. Best of luck to you!

I just posted about this b/c starting 1 wk post IVIG we were in the ER for sedation it was so bad. We are in our 4th wk post, she is starting to even out but we get another tomorrow. The rage is still there but not as frequent, and I am seeing my daughter again in between (haven't seen that in months) I have found that staying calm and neutral during the rage helps it pass ALOT quicker. I basically have to ignore her for a few minutes unitl it passes. This has been HUGE in helping us all to deal with it. It is soooo hard b/c she kicks, hits, punches, scratches me. I try not to talk to her and walk away until she calms down. She yells alot of horrible things, but she is actually starting to open up and express her feelings in some very small increments during this. Hold on, be patient. I know it will get better for you!

Hi, EAMOM, I am in Southern Ca. My husband and I are not + for strep. I feel like this is a PITAND situation because the only known strep she had was when she was not quite 1 year old. Since that strep infection, she has had mild waxing and waning symptoms (started around 18mos) of OCD, TICS, defiance. In retrospect, alot of our beviour, OCD problems happened after any kind of illness (usually respiratory, that is why I lean towards mycoplasma, she also had croup and asthma as a baby). The latest illness that I believed caused the severe episode (in which we knew something was REALLY wrong) was H1N1, this past Dec. Although her titers for ASO were elevated in April with no symptoms of strep. I am wondering if the initial strep assuault causes these misguided antibodies (ASO) to release even when there is not a specific strep infection, but another virus, infection.... To the other mom, It was actually influenza at 3yrs old that caused her tonsils to swell and never go down (strep neg at that time, influenza +) There may have been something hiding in there but we actually removed them because of severe obstructive sleep apnea.

I believe the MRI study (w/ DR Swedo) showed increase in the size of the basal ganglia of children with PANDAS which was thought to be caused by inflammation (due to the antibodies attacking this area). There is even some thought that it may be the anti-inflammatory properties of the abx that are beneficial. I have started my dd 8 on fish oil and I am trying to feed her inflammation reducing foods. Still on abx though. Buster's site PANDAS Network may have more information on the studies. I am tempted to try the motrin but I am afraid of the effects on the liver if given too frequently. I do believe this is an inflammatory issue myself.

I feel we have alot of the same issues. My dd 8 also had H1N1 DEC 2009 that was the trigger that became severe (progressive,then drastic start of April 2009) Also had elevated strep ab but no symptoms of a recent infection just prior. Had strep <1 yr,and transient tics/OCD/sensory (mild)since. It is best to rule out other co-infections (lyme, mycoplasma) before just accepting tourettes. How long did you try abx. We have had the problem of trying to wean, then symptoms come back, and I believe she is building resistance. We are also on 3rd abx, and tics have improved, but rage is out of control. Still some atypical OCD. I have heard that each time you wean/ switch it takes longer for abx to take effect (???) We have also done IVIG and will be doing 2nd dose this week. It is slow, but we will watch and hope for improvement. Some children do well on psych meds,some worse. I wish you all the best.

She wasn't tested before because she is so textbook for PANDAS. Has hx strep, elevated titers, almost ALL diagnostic criteria. We are still pretty fresh after IVIG. I was confident in doing it. I think we just need more time. She has another dose this weekend. This may be the "turning of the pages" We have decided to respond differently to the rage, and it is helping to prevent it from escatlating as far. Parenting is hard enough, then throwing this in the mix really steals your confidence on how to parent. But we are working hard on patience and it is helping us all get through it. I hope things go well for you!

Hallelujah! Hope it keeps moving forward for you

Thank you all for your replies, glad to know we are not alone. I wish the best to all of you! I am going to try to get the mycoplasma test. She had several bouts of pneumonia as a baby/ toddler. Seems that the mycoplasma + kids are exhibiting the rage????

I think it goes to Dr Cunningham's research specifically. Thank you for the link Vicki, I ordered one. They look really nice.

Anyone have the info for the PANDAS necklace? The one with the green crystal

I asked about this before but I want to see if anyone else has had this experience, or any info. My dd 8 had IVIG #1 on 7/31. We had what we though was a mild improvement within a few days, then 1 week to the day things took a turn for the worse. We are on abx also but the rage is out of control. She is soooo angry. I can't believe the things she says to us. We picked her up to go school shopping and out to eat today, without any warning in the car she started screaming how she hates us, wants to kill us, we are so mean, stupid... she wants to punch us in the face. She also follows thru with the physical hitting,,kicking... We are trying so hard, staying patient, trying to be supportive... I am rambling, as you all know, it's bad. I think I have heard Lyme can cause this worsening, it doesn't make much sense to us for lyme, mycoplasma makes a little more sense but I wouldn't count anything out at this point. I am thinking about getting the lyme and mycoplasma tests but how accurate would they be after ivig?? and on abx???? Then I hear so much about the different tests, can anyone suggest the most accurate, I would hate to have to start treking down another path and change course of treatment, subject my dd to unneccessary meds/tx/labs if we can't even rely on the tests. I am just searching for some input, so many of you have so much good info. Thank the good Lord above for this forum and all of you. Could you imagine not having this resource, each other???

Very interesting, thanks for posting this. My dd 8 has always has a large vocab. She does the MOM...MOM....MOM thing too. drives me crazy, she says it 3 times before I even have a chance to answer. I have noticed in the past, that she would take some time to respond to me, and the thought that she was having trouble processing did cross my mind. Now her rage is out of control, to the point that I have thought of hospitalization for intensive therapy (a week or so). She doesn't want to talk about anything, even punched me in the stomach when we left the therapist office last week. Maybe this is where some of the frustration is coming from. She cries alot and doesn't tell me what is wrong, she seems to get angry because I don't know.I am not sure what to do at this point, but having this in mind may help. Thanks again.

I read a post that said Buster has a checkist to help track daily progress/ regression. Can anyone direct me to it? and thanks for making that Buster.