Williams_Mom

Hi - my son recently had his 4th IVIG and while I should remember how things went after his last 3 rounds (one last year, one this past April, and one this past Aug), I just can't. His IVIG was last Mon and Tues (11/7-11/8) and he doesn't seem to be much better. I asked him today if he felt any better and he said no. I have noticed an uptick in his behaviors in the past couple of days (really struggling to get in/out of the car, having to go back to a spot and start over again when walking somewhere, etc). I did notice a few positive changes - he showered night before last - and that was probably the first time in 2 weeks. He also wrote a very short note to his grandfather (3 or 4 sentences) and he hasn't been able to write anything for weeks (he did start and scribble out a few times on the letter - but it was still a HUGE thing for him and me). I can tell that he is stressed that he isn't feeling better... :-( I know that it hasn't even been a week... I really should keep a journal. Thanks for any thoughts/experiences that you want to share. Sally

Thanks for the response! It is *so* nice to have folks that get it.... Ahh... the raging. I don't know what to do sometimes. Overwhelming for me (and for him, too, I imagine). Wow, since your DD was born? How old is she? As for my son socially, he is struggling. He used to have lots of friends and essentially has lost most of them, I think. It makes him (and me) so sad. The first IVIG was great. The improvement in a week was just amazing. I have my fingers crossed for the second one to go the same way (after we get it through insurance..) Again, thank you so much for your response. It means a lot! Sally

Thanks so much for your response. I am feeling a little bit better today but it was really nice to come here and see your response and know that someone *gets* it. In answer to your question, yes... he is on Omnicef 300 twice a day. I am not sure if it helps or not. I think that it does *some*, but not enough. Again, thanks so much! It means a lot!

I just need somewhere to share my...I don't know what to call it...sadness and frustration, maybe?... where folks know what I am going through... I just sent my 11 yo son off to middle school to take his state assessment exams (this is only part of the day, though). These exams are important in that they help determine his class placement next year and I think that the school gets certain kudos/dings depending on how the kids do on the exams (but I didn't tell my son either of these things). My son is a mess. He wouldn't eat breakfast because everything was dirty - I had ruined everything. I upset him because I came upstairs too quickly after he did (he was already down the hall and in the bathroom). I don't even know what I did (while his anxiety is hard to deal with, I can usually figure how to deal with it... meaning, things like...if I was my hands before I touch anything and don't let anything touch my shirt and serve him with no one else in the room, then he'll eat. As you all know, this type of thing changes day to day) He does not eat lunch at school (and won't take lunch either). He wouldn't wear a jacket or pants (he is wearing shorts and a t-shirt). It is 32 degrees and is supposed to go up to 42 today. He won't brush his teeth. I try not to let him see that it worries me. I know that he is miserable but he can't let him stay home from school again - he has missed too much already (there have been days where he just can't go). His testing from before PANDAS all indicates math brillance (a small bragging moment!) but he has a 56% in math right now - and that's been a struggle to achieve. It would be one thing if he wasn't an emotional mess and telling me that he "feels bad" frequently, but he is. It is exhausting for me to watch him go through this - I can only imagine what it is like to be inside his head. :-( We are in the process of scheduling another IVIG but the insurance company (as some of you have mentioned) is dragging it's feet. I just want to get it done and hopefully get him feeling better. Thanks for letting me whine... while friends and family see it, too (obviously) they don't live with it and don't fully understand (and they try to "fix" everything and sometimes, I just need someone to listen for a bit...) Thanks! Sally

My non-PANDAS kiddo has been taking Rilutek for his OCD for months now (8-10?) with great results. Obviously, I don't know how it would work for a PANDAS kiddo, but it's been great for my preemie/Tourettes/ADHD/OCD kiddo. Sally

Thanks - I think that I will take him tomorrow am. I will make sure to ask about the longer strep test. He is on Omnicef 300 2xday. Thanks so much for understanding my strep fear! :-)

My son, William, has been complaining of a sore throat for 5 or so days now (no one else in the house is sick or complaining). It doesn't look super red to me and he does have a bit of a stuffy nose - but I just have mom training, not doctor training). I am trying to decide if I should run him by the peds or not. After he started complaining, we received a letter home from the school last week regarding the multiple cases of confirmed strep in his school. He is on antibiotics but I still worrying.... What would you do? Go to the peds, pay the $10 co-pay and feel stupid if they say it's a cold? Or wait it out and hope, hope, hope that it isn't strep? No one in my circle of real life friends understands my fear of strep (but then again, they didn't live with my son prior to his IVIG and see how totally miserable he was....He is not 100% by any means, but he is much better. I'm scared to lose that...) Thanks for your thoughts/input! Sally

My son (11 yo) was supposed to have his well-kid shots early this Fall - as well as the flu shot/mist. I asked Dr. L about it (he had the H1N1 flu last Fall) and she said no to all of them. I am happy to hold off for now.

My 11 year old son had IVIG this past summer and the hardest past was getting a date that worked for the hospital. The doctor has ordered another IVIG and, this time around, our insurance company (Blue Cross/Blue Choice) is digging in it's heels and is doing everything that it can to avoid approving the IVIG. I have my fingers crossed that they will approve him soon. :-(

Here's our experience: We have been patients of Dr. L for many years (oldest DS has other issues that we see her for and now middle DS is a PANDAS patient). I know that her scheduling was a little crazy this summer and I imagine that she is still catching up (plus, I don't think that she is back in the office quite full time yet) due to her son's incredibly sad accident. I have always found the office staff (and Dr. L) to be very responsive and caring. I am happy to answer any questions that you might have. Sally

My son, William, had IVIG in the middle of July. His symptoms basically disappeared post IVIG (he did spend a week sleeping and feeling not so great but then was back to his pre-PANDAS self). We were soooo thrilled. We are now about 6 weeks or so post IVIG and his symptoms are coming back. Things are dirty again (his shirt that may have touched the carpet where his brother's underwear might have been...or the food that he was eating that hit his brother's hair <it didn't actually come within 1 foot from his brother>, his spit <this one is hard to deal with!>, that kind of thing....) He started a short course of prednisone today and he asked me at dinner how long it takes to start working. :-( My question is this... those folks that have done IVIG, what has been your experience post IVIG? Have you needed to do more than one IVIG? How soon have the symptoms come back? Thanks for any thoughts/experience you are willing to share! Sally

My son, William - age 11, had IVIG on 7/15 and 7/16. He got through it OK (massive headaches and nausea - handled with Benedryl and Motrin) and slept a lot the week afterwards (but then, that might have been the Benedryl..). I called the neurologist today because I had to adjust the time of his follow up appointment (it is this coming Wednesday) and the medical scheduler asked me how he was doing. I raved about how well he is doing and how thrilled he and I both are. Half an hour later, he started back up with some of the behaviors that he had before IVIG (that I hadn't seen since then - hand washing, coating everything with hand sanitizer, and being anxious about contamination. I am so sad... I thought that the behaviors were gone (he still had a few things to "work on" but he was sooooo much better). Has anyone else had a child that seemed much, much better right after IVIG and then had a backslide? Was it permanent or was a short-lived thing? FWIW, he is still on antibiotics but no prednisone. He has complained of a weird issue with his throat since before IVIG and it hasn't gone away - it is kind of like a big time over production of mucus (sorry if that is TMI) and he tells me every now and again that his throat hurts - which of course freaks me out. I would love any BTDT (or not) thoughts... Thanks! Sally

My son (almost 11) will be going back on Prednisone tonight. His symptoms are in high gear again (he keeps telling me that he is going crazy - and is very miserable). This will be his third time on Prednisone since Feb. Dr. Latimer had originally scheduled him for IVIG on the 21st, but that is on hold right now (obviously). My question is this.... I really can't remember how long it took to get some relief last time from the prednisone - any thoughts? He has a big baseball tournament this weekend and is hoping that he will be able to hold it together (he had to leave his 5th grade picnic today - something that he has looked forward to all year - 1.5 hours into the picnic. Heartbreaking to me...) Thanks for any thoughts.... Sally

Hi - I am new here and very happy to have found this forum! I have 3 boys - and my middle one (10 yo - almost 11) has been diagnosed as having PANDAS. He was diagnosed a couple of months ago and I don't know if I am expecting too much, too little or.... He is almost finished his second month-long round of prednisone. He is also taking Ceftin (I think - we tried Zithromax but the insurance company would only OK 6 pills at a time which meant that I was at the pharmacy constantly and paying co-pays constantly... ugh) His behavior has changed since he started the pred/ABx - he has stopped washing his hands every 6 minutes (I timed it) but his fear of contaimination is overwhelming... he declares things "ruined" because they may have touched something that might have touched something that might have touched something that might have touched his brother's (or someone else's) "wiener" (ugh - hate that word!) and/or chest. It really is that many "maybes" and it makes the rest of us crazy... we are keeping the hand sanitizer folks in business all by ourselves. He has taken to using hand sanitizer frequently instead of soap and water - even rubbing it on/in his mouth. He spits constantly (this is new and makes me crazy) - on the side of the car, on the carpets, everywhere because he might have touched something (or been in the area). He is very anxious.. He told the doctor that he felt "60% better" between pred. rounds but I *know* that that is not true and I think that he said it just because he doesn't want to be percieved as "weird" (even by the doc treating him!) Am I expecting too much that he should be better after the pred.? I don't think that he is much better (he is a little bit better) - just moved on to new things. Will he eventually be "cured"? Or will he live with this his whole life? Lastly, the doc had mentioned IVIG as an option, but said that she didn't think that we were going to have to go that way the last time we saw her. What, exactly, is IVIG? How does it work to help someone with PANDAS? If the 2nd round of pred. doesn't help (and should I wait awhile after he finshes it before feeling like it did/did not work?), what are our options? Lastly, if his day-to-day life is not completely impaired (for instance, he can go to school though he worries about his teacher putting his (the teacher's) wiener on him (my son)) or things that belong to my son, does that mean that his PANDAS is not that bad/severe? I just want my son back like he was.... Thanks for any thoughts/advice! I know that I should ask the doc some/all of these questions (and will when we see her in 2 weeks) but I also wanted to ask some BTDT folks. Sally