matis_mom

Happy father's day to all the dads who are not in the forum but... * let us mothers spend hours on the internet researching pandas * let us mothers spend hours chatting on this forum * go to work every day to provide their families with health insurance and fork out whatever is necessary to make their child better * go to doctors, get their blood drawn and get on antibiotics even though they are feeling perfectly fine, just for the sake of their child... And all those other things PANDAS dads do!

I understand CIGNA covers plasmapheresis but not IVIG, so you never know. May be worth another try with your insurance to see if they'll cover plasmapheresis.

Hey, for two bucks a test, if it's reliable you can't beat that! It's $10 a pop if I have to take them in to get swabbed. Thanks for the recommendation, I'm getting some today!

They gave my dh Pen VK 3xday... it's a pain to keep on schedule but I guess that's the most effective way to take it.

Anyone? Please?

Now the plot thickens... My husband's ASO: 270. They are calling in a prescription for him, I think penicillin... He has to go back and see the doc anyway because, at my insistence, they checked thyroid too and it's off (I knew it again! )

I just picked up the prescription... 10 days of Clindamycin. It better work! Most other people I've read about were given 30 days when trying to clear a carrier... I might have to go back and ask for more, but in the meantime, I'm going to do all the "alternative" stuff I can as well to make sure we clear him. It'd be interesting to see what his titers are now that I know he actually had strep the day they drew blood, and also see if my PANDAS ds settled back down now that his brother is on antibiotics.

I would add ibuprofen just to keep things at bay. Maybe it's just a small blip but you don't want it to get to the point where you need to do another steroid burst. Our PANDAS son has been showing an increase in OCD (it turns out his brother might be the carrier), and we've been doing Advil "as needed", it seems to be helping.

I was wondering if anyone has found an online link for the full episode. Thanks!

Can those of you who use the home strep-A test kits recommend brands? Amazon carries several brands with a wide range of prices. I don't want to spend more than I need to, but at the same time I don't want to get something that is not accurate. So please, please reply with brands and where to get them (if other than Amazon). We have several docs in the family, so the need for a license no. should not be a problem. Thanks

They just called from the pediatrician's office... DS14 came back positive on the culture. What I don't get is why they are calling today, when this was done over a week ago. PANDAS ds is showing a little bit of an up-kick in OCD, and the last few day some of the kids have been having what seems to be a 24-hr. stomach flu, but who knows any more! I did have them all tested last week, so I don't think they all have strep. It is interesting ds14 has never been + on the rapid, and even though they always do the two swabs and send one for culture, I wonder did they really send those out every time. DS14 is fit as a fiddle, has no symptoms right now. The nurse did mention they were going to treat him as a carrier and that it was going to be a bit different, so I am hopeful that they actually know what they are doing. We'll see tomorrow when we pick up the prescriptions. Still waiting on everyone's bloodwork. It is funny to be glad when you hear your son is sick (well, he's not really sick, just making others sick), but I am so glad we have found this! I also feel like saying "I knew it!" and was right to delay plasmapheresis. It also feels good to have something to show for all those doctors visits, and now the pediatrician seems to be taking it seriously. I pray this is the beginning of long lasting healing! Isabel

Wow! Last time the kids had strep my dear pediatrician did swab the baby (only 3 months old). She said, "they say babies don't get it, but I've seen babies get it!" Thanks for including the symptoms, I'll be watching out...

Oh I can relate! I kind of have the same situation with my MIL, but not about the PANDAS thing, thank God! I think you are right to choose to stay away. You've tried to include her, you have explained, and if she doesn't get it, you have better things to do with your energy than stressing out about what she might say. With my MIL, what has worked in the past is to write her an email explaining the situation and why we choose not to see her (yes, at times, we have had to cut all contact). Talking has never worked, as the conversation is always one-sided, and she is always twisting things and is way too proud to admit she was out of line. So, whenever you feel inclined, write a nice long letter explaining how you and your husband feel about her comments, etc. Try not to be judgemental, just explain what you are going through and how her attitude is not helping and that is why you choose for the time being to not be around her. Is she your brother's wife, or your husband's sister? In either case, it always works better to deal with your own blood relative (i.e, either you write to your brother, or your husband writes to his sister). We have had to put my MIL in "time out" more than once and now she knows where the line is. You have to stand up for yourself and your family. Better to do it now than to blow up one day in front of the children

Thanks for the update and best wishes for continued and long lasting healing!

DS12 has been on the generic for a couple of weeks and I have not noticed a difference so far. I do hope it turns out to be just as effective.

I do hope it's not strep! But if it is, how about switching to Augmentin? I don't remember if you guys have tried it before. DS12 got an ear infection while on Zithromax plus Augmentin, although it just happened to be a few days after we had stopped the Aug and started Zith... I saw things ramping up and added Aug back, but still, they had to add Rifampin for 10 days. I kept Aug + Rifampin and did not bother with the Zith, as in our case did not seem to help much. Keep us posted and I hope your pediatrician "gets it" and helps out!

Hi all, My m-i-l went to get her bloodwork done, but they said they couldn't run it because she did not have a diagnosis (she did have a dr's order her husband wrote for her). I run into the same when I took my other children in, but the tech just put the same dx as my PANDAS ds. What have you all been using as dx code when you go in to check other family members? (She was going to do strep titers and Mycoplasma IgG and IgM) Thanks! Isabel

Hi there! It is not easy... Before we knew what it was, we used to get very angry. Then we found out it was a medical problem, and our son could only help himself to a certain extent. We also realized a lot of the things we were doing were just feeding the OCD monster. I read a great book called "What to do when your child has OCD" and I learned a lot about it. Although the book was not specific for PANDAS, I found it very helpful. Here are some of the things I do with my son so we can all keep our cool... 1) Even if he is going through an exacerbation, I try not to answer reasurance questions ("Is it ok if I touched this? Is it ok if I did that?, etc.) 2) When in panic mode, we found "breathing counts" (breathe all the way in, hold it, breathe all the way out almost till you cough, count 1... and repeat until 10) are great for calming down. 3) When he has something troubling him and can't talk about it (but really wants to), we found pencil and paper work really well and getting it out on paper helps him relax. Like I said, it is not easy. We do "loose it" sometimes. But I think the best thing you guys can do as a family is to learn more about OCD and the things that make it better or worse. Everyone needs to understand this as well as they can. My son is only 12, but I have explained things to him and that way he knows that I am not being mean when I don't give in to OCD, I am just trying to help him. God bless, Isabel PS: For the bad times, ibuprofen seems to help.

Lynn, I am sorry I did not have the time to read all the responses but here is what I have to contribute... 1) My son had the tics of an on just like yours, apparently not related to anything 2) I believe pink-eye can be caused by strep. My son started exhibiting OCD when we were visiting my sister and her kids all had pink-eye. My son started washing hands every 5 minutes (to avoid contagion, I thought, but it was very ocdish) 3) Later after a bad case of flu (with maybe strep too?) he started going downhill. I can put all these things together in retrospect, but while you are going through it you do not know any better. But, coming from someone who's had the opportunity to look back and see the big picture, I am pretty confident your son is a PANDAS candidate. I also wanted to mention that my son, as far as I knew, did not have strep except for maybe once. Well, since we started this PANDAS journey we have discovered that in our family many of us simply do not show any symptoms of strep. I take them all in whenever my PANDAS ds is acting out, and we always have one (or more!) testing positive for strep. So, I would strongly encourage you to get everyone in the family tested for strep (even if they seem perfectly fine), and also run titers (bloodwork to look for antibodies). Good luck in your journey! Isabel

My had the eye-blinking as his very first symptom (I think), but we did not think anything of it at that time, as it came and went on its own. Only now looking back are we putting it all together. The OCD started only after a very bad flu (possibly with strep mixed in?), and now that we finally know what it is I can tell you yes, impetigo can cause all this. After diagnosis, my son has had several exacerbations, and one of them was clearly tied to his sister having impetigo. It was just as bad as when he was exposed to strep throat. So, I don't know about it being "what started all this crazy stuff", but it definitely can add to whatever strep load your son already had.

I went to get them all checked yesterday. Apparently because of some insurance issue the rapids are not available right now. So they only did cultures. Will those results be reliable enough??? I wish they had told me that when I made the appointment. Anyway, they all "look" ok, and I got scripts to do bloodwork on everyone. Funny thing is that the nurse wrote the orders (I don't know why they don't just have a standard form, they had to write all in one of those little rx tablets!), and she included ALL the labs they just did for my other daughter.... Lyme, Thyroid, the whole nine yards! I guess it doesn't hurt... so now I have to take them all to LabCorp...FUN! Isabel

This is very interesting... my doc was saying we did not think I had an active infection because my WBC was not elevated. My PANDAS son's CBC always looks normal. So maybe I should challenge that...

Hi there, I am not sure what it may be, as impetigo for us looked more like a rash (not a single, isolated pimple), but I think you are right in trying to see exactly what it is. If you have a good, open-minded pediatrician, they could culture it for you. Other than that, I suppose you could buy the rapid strep test kit (through Amazon), and try doing it at home. It could be staph or strep, I don't know if you can get a staph kit. Try do journal and document all this, as it may be very helpful in the future if you are trying to get a diagnosis/treatment for your son.

Thanks for the update! I have to try it on my son... Too much going on and I forgot to do anything about them. That's what makes this forum so awesome: people coming back with their success stories

PANDAS ds doing well, still some residual OCD/questions, but I would say he is "stable" All other kids clear. Going to get them all tested Monday and asking for titers too. dd10 still dealing with fears, scrupulosity, emotional, etc. It seems to come and go. Got her bloodwork done last week, still waiting on titers, but everything else normal. So I guess we are doing well, but I just hate that feeling that things could explode any moment, and I know I cannot take ds off Augmentin or things deteriorate pretty quickly. So who knows, maybe I do have something and maybe that's why he needs to stay on strong abxs or else...