lboll

Wow, thank you both so much for the information. I really appreciate the time you took to help me out. I don't think it would be possible to somehow freeze his blood draw here. Unfortunately, it's very difficult to find people willing to the "think outside the box". However, I will contact the Cunningham people and get their thoughts on it. Fixit: What is Taurine? I haven't heard of it before. My son is on 2 other meds which help with his behaviors: one is Guanfacine which is a blood pressure medication (it lowers it and helps calm him down). The other is Trazadone which helps him sleep at night. I wonder if these would interfere with the test results. Thanks again,

Hello, we are heading back to the states in June and I would like to get the CaM Kinase test for our son, age 10. From what I've been reading we should do this during an excerbation of symptoms. However, we only have a short window of time (2 months) when we'll be there. So I have two questions: 1. Would it be worth getting this test done if he's not showing symptoms? 2. If it's okay to get one without symptoms, how do we go about having this done? Are regular pediatricians able to order this test? Or, is this only done through Dr. Cunningham? Thanks for answering.

Hi, My son gets the dilated wild look in his eyes when he's having a rough period. Once he starts yelling and running around, the first thing we do is check his eyes and they're always dilated. I'm so sorry your second son is going through this. Once I realized that this was what my son had, I realized that my daughter has it at times as well- she doesn't get the dilated eyes, but she gets the tics and OCD behaviors. It broke my heart when I realized they both have it. So, I know what you're going through. It's not fun! I don't know how to post pics except that you could provide a link to another site like a blog or something. I am so sorry. I know the feeling of having your second son fall into the h### of pandas. It is so horrible and overwhelming, especially when they exacerbate at the same time. Non-functional. Well, all I can say is that with my second son at least we knew what to do second time around and we didn't waste years looking for a dx and a doc. At least everything was lined up... Best of luck and keep us updated! Stephanie

Hi there, Hang in there. I do know how you're feeling. My hubby is wonderful and so supportive. The unfortunate part is that he's supportive as long as I do the research. He won't read it. He still is convinced my son needs to test positive for strep in order to have PANDAS. I keep telling him that's not the case, but he doesn't get it, or won't get it, not sure which. But as you said, the good outweighs the bad. So hang in there. Know that you have support!!! Take care,

Hi Fixit, Please don't feel badly. Like I said above, when you're feeling low, you feel like the world is out to get you. I should have assumed best intentions rather than the worst. So, I'm the one who needs to apologize. Thank you for your response, and maybe we'll meet in an ostrich hole someday. ( :

Thanks. Well, we really enjoy living overseas, so it's not too terrible living half a world away. But, at times like these it's pretty stressful. I think I can wait til Saturday. I just wish I didn't have to, especially because I know that the antibiotics can help him. I've tried putting liquid meds in sprite, but he won't drink it because it changes the texture. But I haven't thought about trying it in a milkshake. Good idea. As far as respite...at this point there's no one we can have watch him because his behaviors are so out of control. but once we get them under control, then he's very easy to watch. So we just have to hold out for a few more days... Thanks so much for your concern! We'll be okay. Wow! I have so much respect for you. I am frequently feeling all alone and so far from my PANDAS doc (7 hours away). I cannot imagine half a world away. It sounds like you have been down this path many times. You have less than a week left until the doc gets back on Saturday. You know you can hold it together and keep your son safe until that time... and keeping him safe is the main goal until the doc gets back. It sounds like your son will not take any pills for meds. Do you ever use liquid versions (maybe mixed in a milkshake or something like that)? Even just childrens motrin until the doc gets back. Is there a pharmacy that can give you liquid augmentin - the baby version? I am sure you have thought of all this and if you do not want to reply I understand. I am just curious as to what you have tried and how you handle this usually. Is there anyone that you can call in for some respite? Someone from the school you started? Maybe another parent or a teacher? It would be good if you could get a break for a few hours of sleep.

' Thank you, Fixit. But I'm a little afraid to put up postings now. I thought this could be a place where we could voice our trials and be hard and not judged. Maybe I'm taking the wrong thing out of your posting. I certainly understand your advocating for the child...but it's hard to feel judged all the time as a parent. If you could take a walk down the street with my son and me, you would see what I mean. The stares, the looks of disgust...it's painful. And, I know my son sees them, but as you said, he's stuck. As a mom I want the people to be staring at me and giving me the dirty looks instead (though many do that as well). But constantly being judged is so hard. Iboll...I can't speak for exactly what fixit means, but I thought she meant that she understands how you feel. This is a place where you can give voice to your difficulties without being judged, so don't be afraid to post. When you said this: I flashed back to probably the worst times in our lives as my 7yo 40lb daughter was so outrageously out of control us big folks seriously considered that institutionalization was imminent. Its so heartbreaking- I can't think about it, even now w/o getting teary. And that's when we decided to use psych meds- we were stuck between a rock and a hard place (did not have an inkling about PANDAS yet) and chose the hard place, because maybe we could make it a little softer. And your right it sounds horrific...it IS horrific! I'm so sorry you're in that place right now. I wish I could tell you that we found a psych med that helped- Lord, we tried so many...a few have helped a little, but I feel guilty using the valium, feel guiltier knowing it could help her and not using it. Sorry I didn't answer you sooner to sympathize- it still hurts to think about it, so I try not to. Hello again, First off, I'm sorry to FixIt!. You know how it is...you feel so low that you feel like the world is out to get you. Anyway, I do know what you mean. Although we had never considered institutionalization, there are times where I think that I won't be able to handle my son when he gets much heavier. He can become somewhat violent at times...when he's bigger, will I be able to protect myself. We have our son on Trazadone which has helped him sleep, but hasn't helped his behaviors at all. And, he's not sleeping now, so I'm guessing it's not doing anything. ARGHHHHHH!!!!!! What to do? As I was typing this, my son came and screamed in my face, then grabbed it and pushed his face into mine. I thought he was going to bite me. Thankfully he didn't. Phew...dodged another bullet.

' Thank you, Fixit. But I'm a little afraid to put up postings now. I thought this could be a place where we could voice our trials and be hard and not judged. Maybe I'm taking the wrong thing out of your posting. I certainly understand your advocating for the child...but it's hard to feel judged all the time as a parent. If you could take a walk down the street with my son and me, you would see what I mean. The stares, the looks of disgust...it's painful. And, I know my son sees them, but as you said, he's stuck. As a mom I want the people to be staring at me and giving me the dirty looks instead (though many do that as well). But constantly being judged is so hard.

Yes, I agree with you 100% We have lived with his pain for about 8 years now. He is truly trapped and with all the interventions we've tried, he is still trapped. The PANDAS treatment is the only thing that we've found that can break him out of this trap. Please don't get me wrong. We love our son and have tirelessly worked to help him. My husband and I are huge advocates for him. I have changed my career and opened a school for children with special needs here in China. Our son is an inspiration. We are just feeling overwhelmed by it all at the moment.

Hi Stephanie, What does that mean that your kids have had a brush with autism? Are their gut problems so bad that they have autistic like symptoms? Just curious. I'm sure you've tried gluten free diet. We did the same, but it didn't work for our son. Sadly... I've read about cruises for autistic families. I wonder if that includes PANDAS kids and families! Respite!!!!

Hi everyone, I appreciate all your thoughts and kindness. Vickie, we have tried the usual antibiotics. The Amoxicillin had no results at all. My son won't swallow pills and if you crush up Augmentin it tastes horrific, so he wouldn't try that. So we were left with the injections. Last night we tried giving him some chewable Ibuprofen. He screamed and protested, but we got one down him. Unfortunately, his dose is 2 1/2 tablet. Any ideas on that? We are the ones living in China, so no other doctor here really understands what we're doing. The doctor we're working with is helping us because we are also working long distance with Dr. T. My son is so out of control that my normally incredibly patient husband said last night, "If the next set of antibiotics doesn't work, I think we should drug him so he's a zombie or give him away." I know that sounds horrific, but that's where we're at right now. It would never happen of course, but it just goes to show how normally very sane people can just be "tired".

Hi all, It's been so long since I've posted anything. We tried our first steroid burst and round of antibiotics with my son (10 and autistic). It worked! In fact, my husband had said, "If this works, I'll bring you coffee in bed for life." Ha! I'm enjoying my coffee. When I say it worked, I simply mean that he stopped urinating every minute, stopped taking 8 showers a day, and just seemed overall, a much happier little boy. In the last week though, his behavior has shot down again. He is now obsessing with putting all his clean underwear in the wash machine. He can't tell us why as he's autistic and not very verbal. He is urinating every minute or so, and is just running from one spot in the house to the other. He is also having sleeping difficulties (waking each morning at 3:00 a.m. and runs full steam ahead from then on). Our doctor is on vacation until Saturday, so we can't get in to get him the antibiotics he needs (he responds best to Ceftriaxone given via injection- after several trials of others). 7 days of shots is not fun, but it helps so much. Anyway, I just needed to vent. So tired...so tired. I know you all know how I'm feeling. Thanks for 'listening'.

Hi, this is really interesting. When I first took my son, diagnosed with autism, in to see a doctor about a possible PANDAS link, he said, "Well, this is kind of fringe thinking. However, it was fringe thinking many years ago when a doctor suggested that the HPylori virus may cause ulcers. So, I'm willing to give this a try." I emailed this to Beth Maloney, and she said, "Look at the dedication in my book". I did, and her book is dedicated to this very same doctor who came up with the HPylori link. I'm so thankful some doctors are willing to keep pushing... When will the medical establishment learn from their own tragic mistakes of the past? When will they temper their arrogance with some well-earned humility? I know there are plenty of good guys like Dr. Marshall on the front lines of PANDAS - Dr. T, Dr. K, Dr. L, Dr. Cunningham, Dr. Leckman, etc. - who are fighting the good fight despite implacable opposition. But it's disheartening to see that this same pattern of narrow-minded denial seems to play out again and again while innocent patients (like our children) suffer. Sigh....

I have heard that Molluscum is a virus and will it eventually leave the system. My daughter had about 40 warts on the backs of her legs. It took several months for them all to disappear. Luckily she was only 3, so there was no problem with self esteem. My PANDAS ds did have it, but so did his brother who is healthy as can be They each started with just a few and pretty soon the had more than 20 warts each! The pediatrician recommended that freeze-off stuff. We tried that and they totally freaked out with the first wart, so we were not going to try that on 20 of them! A friend recommended duct tape. We did it for a week (there is something in it that irritates the wart enough to cause the body to fight off the virus) and sort of forgot about it (the tape kept coming off!). But then the following week, they were all gone, just like that! You can google it and get specific instructions, for $3 worth of duct tape, you can have an effective and painless treatment! (Just try it on one first, a friend of mine did it an her child turned out to be allergic to the tape, yikes!)

Hi, My non-Pandas daughter had molluscum. I had no idea it was a sign of a weakened immune system. She was taking a swimming class and I had heard that it spreads like wildfire in those situations. My son, who I believe has PANDAS has never had it. However, I can identify with the urination. We have just gone through the entire battery of tests for his bladder issues. At one point they thought he was having kidney failure, but he wasn't. He goes every 2 minutes- most of the time nothing comes out. Did that ever go away for your daughter?

I can't thank you all enough for your responses to this. This is the very first time I've had this happen with my son, so it is quite scary. It's good to hear that it's common, although I know the hardships you're all enduring. I'm fascinated by the reference one of you made regarding MS and another with Parkinsons. I see a lifetime of research ahead of me.

My daughter also has autism, and the urine thing has come to be a sure sign that a PANDAS episode is imminent. She has had episodes where she just pulls down her pants and pees on things or just on the floor. She went through a few months where she was afraid to go down the hallway where the bathroom is located....But these pee anomalies always go away as she gets better. He may test positive in a few days, or you may be checking in the wrong place. If not on abx already, I think its worth a try to see if it helps (but your doctor probably doesn't respect my opinion!). Thank you for replying, At the time the urinating got terrible he was on Zithromax, but only 250 mg. every other day. My doctor was afraid to try a higher dose. We took him off the antibiotics as the doctor was fearful it was causing the problem. However, that wasn't the case as he is still doing it and he's been off the Zith for a week. I've got an email in to Dr. T for a consult. I think it's time to stop messing around with this and get a doctor who really knows what's going on. Thanks again.

Dear all, I've read a few postings throughout my short PANDAS journey on frequent urination. Over the past 2 months, I've noticed that he has been urinating more and more often. Over our vacation last week, the urination was out of control. My son (10) was urinating so often that he started going directly into his underwear and foregoing the toilet all together. He would walk, stop, grunt, and then urinate very small amounts at a time. We had him tested for infection; none showed up. So what now? My son is autistic so we can't just say, "Hold it". He doesn't understand that. Thanks for any and all suggestions.

I can feel your happiness and hopefulness jumping off the screen! I'm so happy for you. Good luck, and I hope it all works for your son.

My son is impossible when it comes to taking meds. When he is sick with a fever he refuses all food and drink. So when all of his tics cease and his behavior is calm, I know it's due to the fever and not the meds. But that's just my personal experience.

Here is a podcast regarding fevers and the cessation of symptoms in autism http://www.autismpodcast.org/?p=102

Thank you for the CBT idea. We had worked on that a few years ago, but more in the ways of dealing with worries and stress. Now, we will need to focus on the OCD tendencies.

Vickie, My daughter gets strep about 2 times a year. Her tonsils are HUGE and seem like a breeding ground for bacteria. Her latest issue was an infection of some sort (though I never had the doctor test her for strep, which in hindsight wasn't smart). She had laryngitis and she was about to perform in a big play at school. Well, the doctor told her not to talk to save her voice. Well, she took that seriously and it got to the point where she was so paranoid about speaking that she quit all together and we weren't sure if she'd actually perform in the play. She kept saying, "I don't want to lose my voice for life". "I don't want to have to get surgery". My doctor is now on vacation and I won't be able to get another doctor (here in China) to understand, so I'll have to wait until he gets back to work with us on her. So for we're on Zith for my son, but I think the dosage is too low. We are going to consult with a PANDAS doctor by phone in the next 2 weeks, so I will make sure to mention all of this then.

That is interesting-- Both children with Pandas have had exacerbations of Panda symptoms when exposed to or having "caught" an illness--I wonder what it is with your son that is triggering this non-standard Pandas response, very interesting. I'm sorry. I should clarify. I mean that his symptoms dissipate when he has a high fever. Perhaps at this point, he's just too sick to have the tics, etc. But I notice that is is during these high fevers that he smiles the most and is very communicative with me. My son is autistic and I believe PANDAS is the cause of many of his tics, but have had no formal diagnosis. So perhaps he does not have PANDAS at all, and the fever just brings down the symptoms of autism. It's all so confusing!

Yes, that would happen here as well. No help with homework. Her teacher moved her desk and put up a folder so my daughter would not think she was cheating, but that made it worse. My daughter said she was somehow able to see everyone's paper in the whole class in that new spot in the room. Sigh. I still see her getting her tics on and off. Sometimes it's a long blink, while other times it's that shrugging of the shoulders. If I see her getting the tics, do I get her tested for strep? I guess that would be my indication that somethings going on there.