mamapanda

Thanks Nancy, he's 7. The behaviors popped up during the last "off" period of 5 days off. His pediatrician said the azith builds up in their system during the 5 days on and keeps them protected during the 5 day off period. Even still, at home he's not having his usual precursors for it. We know he's coming down with it because usually the night before it all starts, he has leg cramps that need massaging, a night terror, and sometimes wets his bed. The next morning he will wake up with a sore throat or just not feeling well and the tics and OCD will follow. None of that and he's doing fine at home, it's just at school that there are complaints. I wondered if he's not just realizing he can get away with murder, but that's not really his personality anyway. Hopefully I'll be able to see it for myself tomorrow.

My son is on a 2 month course of azithromycin - 5 days on, 5 days off. He's been on it for a little over 2 weeks. I *thought* he had been doing fairly well, but his teacher says he's misbehaving in class. His principal observed him today just jerking around, making noises, and looking like a mess. They all remember my sweet and happy kid and know this is not him and are concerned. At home, he's great - no night terrors, OCD thoughts, anxiety, tics, anything like that. But at school he's having issues. I'm going to his class tomorrow to observe him. His school is really good and they want to work with us to help him, and I know the distraction he causes to the other students is also a concern. Any thoughts or ideas would be appreciated. I feel so lost in all of this.

My son only had one instance of strep throat before he had his tonsils out. PANDAS developed less than a year later and he has strep constantly reoccuring. I wish we'd of left them in.

I'm guessing no one else has any experience with this.

Can you give more information on TSO?

Mama - It is great that you have at least SOME information from the folks doing the study and hopefully you will receive the list of antibiotic recommendations soon. Take that to your pediatrician when you ask for ABX. Also, if you made an appointment with a doctor who has seen other kids with PANDAS, take the ABX recommendations from the study with you. While your child may meet all the listed criteria for the IVIG study, the researchers would be negligent if they gave IVIG to a child who really did not need it at the present time. I think that is what they are saying. Please call them again for clarification and to get that antibiotic list. Thanks. I've emailed Rachel twice since she said that a researcher would be in contact with me (9 days ago). Still haven't heard from anyone. Just emailed her again. Taking my son to see a doctor on August 9th and I'd love their recommendations.

For my son, the initial episode was the worst. I know he has strep when they start coming back slowly. The tics, then the anxiety/OCD.. And then I get to the doctor.

So, did you actually get a hookworm infestation? I'm really curious about that.

Thank you everyone who has reached out to me with my last post. I feel so much better and I am now confident that I can get my son the help he needs. We are going next week to see a doctor about 3 hours from here who will prescribe prophylactic antibiotics. At this point, I believe this is what we need. Now, my next question is, is it possible that I have PANDAS too? My son having this and figuring out how to help him has stressed me a great deal. I *know* his behaviors are PANDAS related but sometimes I absolutely cannot deal with it. Last night was the breaking point. We were doing our bedtime routine, which involves me sitting on his bed with him and reading him a book, giving him a short back massage, and then cuddling. This is something we've been doing for several months. But lately I've been extremely irritated by it. He will be doing all of his movements, squirming around like he has ADHD, all of that, and I just cannot take it. We will fight and argue and I am so mean that I hate myself. I feel like I physically and mentally need to be away from him. My husband has to often come in and break up our fighting. But previous to that, we would all be in the living room just fine. It's when he and I are in close quarters to each other that I feel physically and mentally drained by him and it's like I can't stand him. I come out of his room and 5 minutes later I *feel* better, the cloud has lifted and then I feel awful because I know he's sick and can't help himself. I got to thinking about it and discussing it with my husband. He's perplexed how I get, out of nowhere, so irritable and angry with our son. And I realized the times and places I do it are during bedtime routine, and when we're in the car together. WE have some pretty nasty fights in the car. And I realize while he's sick, during the day, I will pretty much let him do what he wants rather than the normal stuff we do - go shopping, go swimming at the Y. I normally keep him off his computer but when he's sick I really don't. I'm starting to think it's because *I* am having a reaction to HIS strep! I feel completely irritated and out of sorts when close to him, not to mention I've developed a facial tic of my own (I squinch my nose). Does anyone else have these issues?? Am I just crazy?!

My son's pediatrician is the one who is saying she thinks he has tourrette's and it's not PANDAS because PANDAS is a one time thing. We are having no luck with her and I've called the other pediatricians here and none are familiar with it. His ENT took his tonsils out but I know he won't be any help. Someone pointed me to this study so I contacted them.

I posted to you exactly what she replied to my e-mail. There was no verbal conversation. She told me she would call me the Thursday afternoon after the panel meeting or the Friday morning. When I didn't hear from her on Friday evening, I emailed her. She replied on Sunday with what I posted.

He meets all of the inclusion criteria and none of the exclusion criteria. He was disallowed solely because he does well on antibiotics. They are using kids who have been fairly recently diagnosed and those kids often have good results with antibiotics so it doesn't seem like he's so special in that regards. But if they're worried about him improving with the abx versus the ivig I can understand that. But how can they be sure they're controlling for antibiotics for everyone?

Thanks dcmom, we live in South Dakota. And I understand about the study. It is a treatment study, however. Which makes it valuable to a lot of people, and their participants are people who want the treatment to help their kid and that is why they are signing up for the study. People don't just volunteer to put their healthy kid through IVIG purely for research. So it's not crazy for me to want my son to be a part of this study - I am like every other mother here. For the record, he met every one of their PUBLISHED guidelines. This stuff about the antibiotics is not published anywhere they advertised. I don't think I'm being unreasonable.

So he responds well, which I assume means his neuropsychiatric symptoms abate with antibiotics, correct? Despite this, the doctor you are seeing won't prescribe longer treatment dose--to at least try for a month? (Find another doctor.) ...and in the meantime someone is telling you that you cannot get your child to be part of the PANDAS study because he did have a GOOD reaction to antibiotics??? I am sorry, I am not questioning you, it is just that I am floored that the Ps IVIG study might be so narrowly defining the subject pool that they are taking ONLY children whose parents have NEVER seen a good reaction to antibiotics. Could that be right? I would think that almost all children, affected by PANDAS, would have had antibiotics given to them for a strep condition (or illness of some other type), at some point in time, as these are the same parents who are "finding" the PANDAS study! (emphasis on the S) --and if it is PANDAS then logically they ARE more likely to have had a good reaction to antibiotics. I am really sorry you are going through this--really. Keep pushing, until you find someone to treat him. (--I encourage you to call NIH to get further clarification.) T.Mom - YES his neuropsychiatric issues clear up with antibiotics. He will have MAYBE a few tics that don't clear up - this last round of clindamycin even cleared those up. His night terrors go away, his extreme anxiety and being scared of everything goes away, his OCD, EVERYTHING. But she says PANDAS is a one-time thing and if he's continuing to have issues after stopping the ABX, he has tourrette's and needs to be on meds. And his testing positive for strep is just because he's a strep carrier. This is the email I got from Rachel, the coordinator for the Yale study: Hi , I presented your son's case to the researchers on Thursday and they wanted to take a little more time to analyze the information. At this point, the consensus is that the best course of action for your son would be to go on another round of antibiotics. The idea is that sine he did benefit from the antibiotics, it would be best to try this again. The inclusion criteria for our study is extremely strict because we are replicating a study that was done in the 80s. Unfortunately, this means that many children who do have PANDAS are not offered the IVIG treatment. One of our researchers, Lily Katsovich, will be in touch with you to give you more details on the recommended course of antibiotics. Please feel free to contact me with any questions. Best, Rachel I haven't heard from this researcher. The email was sent on Sunday.

Yes, it sounds crazy, doesn't it? He does wonderfully on antibiotics. But his ped won't prescribe them anymore.. and when she did the longest dose she did was 14 days.

Thanks, Vickie. The only ENT clinic here is the one where the other doctor practices at . . not sure how well that would go. What has been everyone's experience with the infectious disease specialists?

Mama - did the doctor put your son on antibiotics before the surgery? I am just curious as some docs are now doing heavy antibiotics before surgery and / or IV antibiotics during surgery for some PANDAS kids to "sterilize" the tonsils and reduce the risk of disrupting the strep. Kim, he didn't. He barely spoke to us. I wish I hadn't of gotten his tonsils out, I had no idea how it would help his reoccuring infections (pre-strep).

Kim, I don't know if the Ped ENT in town would even see us, as we included him in our bankruptcy. My son spent 10 days in the hospital to the tune of somewhere between 60-80k when all was said and done. After having a job cut and a house that wouldn't sell, we had to give up. He took my sons tonsils out, though. Didn't care for him much, my son didn't even have swollen tonsils, he just kept getting sick. The guy said it couldn't hurt to take them out. Now I'm wondering because all this strep has started since he had them out. I agree with Vickie to try ENT for longer prescriptions... but in the end I think you need a PANDAS specialist. I replied to your PM. Thank you.

If you're serious about IVIG, you may want to look into having your son be part of the Yale IVIG Treatment Study currently going on.

Heard back from the girl running the IVIG study at Yale on Sunday. My son did not get in, because of how well he does on antibiotics. They thought we should continue with antibiotics treatment. Thanks a lot, his pediatrician doesn't agree. After stopping the last round of antibiotics, his anxiety and tics started returning. He has night terrors every night. His doctor thinks he's manipulating me. My kid is smart, but explain to me how a 7 year old fakes night terrors? He doesn't even know he has them, much less know how to time then to an hour and 5 minutes after he falls asleep every night. FFS. Last two days, he'd been complaining of a sore throat. We know where this is going. He's been irritable and ticking away. This morning his throat is burning. Take him to the fast care in a grocery store here, because a strep test at his doctor will run me $140, but at the fast care place its $50. It comes back positive. They prescribe an abx which I don't get filled. I called his doctor and let them know the results (the fast care is theirs, so they can look in the system and see the results). 3 hours later a nurse calls me back and says, oh come on guys you know where this is going - says my son is a strep carrier and we need to see infectious disease specialist. And to give him the 10 day abx prescribed at the fast care place. I don't know what to do anymore. The nearest doctor on the PANDAS treatment list is 3 hours away and I haven't been able to confirm that he actually treats it or is "familiar" with it in the same way our useless pediatrician is. Help.

And its 5:30 PM their time, and no call. I guess he didn't get in

No word, yet. I don't think its Lymes solely because he came down with this during the COLD winter months. It started in March when temps were still in the teens. The previous 5 months had seen temperatures up to 40 below. I wouldn't think he could of been bitten by a tic when the only times he went out, he was covered head to toe in snow gear. I have been on edge about hearing back from them since yesterday morning. Why do they torture us like this? It was decided yesterday whether or not he was accepted....

Was supposed to hear back today, but didn't. sigh

Thanks everyone. Waiting to hear if he got accepted into the study - the panel met at 1 to review his case. I hope we hear soon. Has anyone hear had their child on prophylactic antibiotics and had any issues with antibiotic resistance?

momaine, we lived in Northern Maine before moving here to the midwest. He's never had a tick bite that I've noticed, though. And no, they haven't tested for lymes.