MJMama

Some good points. I "used to know" not to give the probiotic with the rx but since we were only doing the rx in the am and the probiotic in the pm, I guess I forgot about it. She is getting them within half an hour of each other in the evening so I will switch that up to make sure she's getting the full impact of both. Thanks for the refresher! Regarding the blood draw, we did try and give her a special incentive and she really really did want the treat (going to build a bear) so it was extra sad to watch her not be able to do it, at the end she was just sobbing and sobbing....I like the idea of incremental rewards though since she seems to actually get the most upset with the elastic thing they put on her arm...then it just goes down from there. Last time I was like "OK I can SEE her blood pumping through her arm...do you really need to put the elastic on there?!" But it's their procedure. She has been complaining about taking the medicine especially 2x per day and we are trying to explain that if she can do the blood work then maybe we can find a medicine that will work better for her....she listens but I can tell she's not sold yet. I'll try and put together some step by step incentives. I feel good about that...Thanks!! We'll see how she does today and I guess if she needs a 2 hour nap each afternoon I'll just let her nap.... Thanks to all for your input! Kathy

Our DD 6 years old has been on Zith 1x a day for the past year. This time of year is her very worst time....she has been doing well on the 1x a day and when she'd have a flare up we'd go to 2x per day and things would be fine again. But, now this same time of year she is really having a rough time even with the 2x per day dose. We say Dr. T last July but since the initial blood work we just cannot get blood drawn again. She goes absolutely crazy and it's physically impossible for us to hold her down long enough for a draw. We've tried 3x for over an hour each time. I feel like another trip to see Dr. T is in order and we are lucky that he is fairly close to where we live, but then I'm thinking what is he going to be able to do without updated blood work? Yesterday and today I pick her up after school at 3 and she is sobbing, out of control, saying we love her sister more, etc. I giver her the second dose of Zith and a snack and probiotic and she sleeps for about 2 hours. When she wakes up, she is fine and says she is sorry for how she behaved....This is after sleeping from 8pm to 6:30 am.....I was at the Dr for a physical for our other daughter so I had the Dr. check all of our throats and we're all fine.... We're getting to the point of thinking of having her sedated so that we can get the blood work but she did not react to the general anesthesia she had last year for some dental work so I'm worried about how she will react. Oye! Spring is my favorite season but it's slowing losing it's joy!!! Any suggestions regarding the blood work or if Dr. T might be able to do anything without it? Thanks to all for your help! Kathy

Yup, you're right....fungal. We've been using the cream but she continues to have accidents every day. I don't know what else to do. We've tried incentives to stay dry and she can go 2 days at the most (only on a weekend when we reminder her to go to the bathroom every hour). Other days she will resist going saying "I don't have to go" and then pee 20 minutes later. And it's not a little bit, it's an entire bathroom visit worth I think, soaking her clothes.....Aye, this all started with the onset of her second PANDAS outbreak in June but she's on daily antibiotics and everything else (the tic, huge tantrums) are all controlled by it but not this. I'm not sure but it seems to be getting worse...... Always a new challenge!!!

Hi there! Our DD(6) is doing pretty well with a daily dose of Azithromycin and some behavioral therapy but about 6 weeks ago she seemed to have a yeast infection and the Dr. gave her an rx of Diflucan. A week or so after that she developed a rash on her inner thighs and groin area. It's not raised at all, red in places but not red in others, no definite pattern. She is having a lot of wetting accidents so initially we thought it was just from her being in wet clothes. We have really been working with her to at least change immediately when she does have an accident but the rash (along with a strong odor the past few days) is still there. Has anyone seen this either as a symptom of Pandas or as a reaction to the meds? I go crazy trying to find similar rashes so I figured I'd see if anyone else had something similar. There are absolutely no raised spots and it seems to come and go on a daily basis. When it is not super red, it almost looks like a brown outline on her lower thigh with the skin within it looking normal. I have another appointment for her on Monday but I was just wondering if anyone had any suggestions on what it is and if anything topical worked for you. She is very adverse to having anything put on it, says it "stings". Thanks all!

Hi Everyone! Our DD is 5 has been diagnosed by Dr. T with PANDAS. She was on abx for most of July, August and the beginning of September. She has one unique characteristic which is that she is suffering from severe fatigue in addition to the facial tic and behavioral problems. We have had her blood drawn 2 times already and the first one was a nightmare, she raged and raced around the room BUT we got it done. The second one was actually better, she screamed and cried but it only took 30 minutes versus the 1 1/2 hours the first time. Last week we went to do another round so that we can test for Mono and some other things as well as to monitor the ASO titers....well, it was an epic fail! She was so ready for it, really wanted what we were bribing her with but then she just flipped out...she wanted to do it I think but was so scared....after over an hour we had to just leave and she was so sad that she didn't get the special treat... this just bites what these kids have to go through....Now we can't even mention it or she will start to cry but we need to get it done. She had a stuffed animal, the people were so nice, I don't know....does anyone have any suggestions? Thanks! Kathy

Thanks guys! I really don't know what I would do without these forums. Our pediatrician initially said, "oh they do that sometimes when they're not feeling well" about the tic (near constant facial grimace) and the sudden to the day change in behavior! I love 'em but they had never even heard of PANDAS! DD has tested negative for mycoplasma and lyme but I don't think she's been tested for staph or other stuff. She has SUCH a hard time with the blood draws but I guess it's what we need to do to get her better! I am starting to think that it's not just plain strep since she is SO unbelievably tired, she's sleeping right now. She sleeps from 8pm to 7am with no problem but I picked her up from daycare today at 2:45 and she yawned all the way home so I had her take a nap. It will not prevent her from going to sleep at 8 even though she is napping from 3:30 to 5:15. If we let her skip the nap when she's tired, she will with certainty have a huge meltdown/rage. It seems to happen whenever she gets too tired or hungry. These days she is eating a TON too, way more than usual. She is a tiny little thing but lately is eating more than I do at a meal....Ham, mashed potatoes, mixed veggies, bread w/ butter...for example. She's not a sweets girl so we don't usually do desserts but she will sometimes top that off with a piece of fruit and then have a glass of soy milk before bed. These are good sized servings too.....now I'm starting to wonder if I should cut back on the portions, oh I don't know, she's probably just having a growth spurt but now I'm analyzing everything! We will consult with Dr. T this week. I think he's doing a great job for these kiddos but we've had a hard time getting in touch with him and I'm also a little afraid of having to do more bloodwork.... Thanks again for your support and oh man I need to hear about kids that get better....even if it takes a while I can deal with that but in the thick of it it's easy to think that we'll never have our sweet little one back!

Hi everyone! I appreciate the input when I posted recently regarding the rages that our DD (5 years old) was having. I think it's almost time to come to terms with the fact that the Augmentin is not working. She can go almost a day where the behavior is back to normal and the facial tic is mild or non existent but then it's right back to square one....yesterday she raged for 45 minutes because I wouldn't let her wear her new dressy shoes out in the mud after the hurricane (yes, I know I'm SO mean!) We talk about it afterwards and I think she is telling the truth when she says she doesn't know why she gets so upset and violent... We're half way through her 3rd 10 day rx of Augmentin, before that she was on 10 days of Azith and before that 10 days of Amox. We also give her Advil and culturelle probiotic. Have most of you seen a significant improvement if there was going to be one on the antibiotics before this long? Is there anything else we can try - homeopathic or OTC that might make it work better? Dr. T had said the next step might be steroids but I'm not sure how long she would need to be on the Augmentin before they move on to something else. She starts kindy tomorrow (was supposed to be today but Irene had to drop by) and since she gets so incredibly tired I'm really worried about how she's going to do...hoping for the best but preparing for the worst. Thanks! Kathy

Hi everyone! DD was tested for Lyme and it came back negative and she also tested negative for any allergies. Sometimes it seems like the good days are harder on me than the bad ones...it's just heartbreaking to see her "back to normal" for a day and then BLAMMO! She's doing the tic and raging over the way I put a plate down or moved something.....I write everything down to see if I can find a correlation between the timing of her medicine, what she ate, what we did. Every time she has a good day I end up allowing myself to think that she's getting better but then it goes right back to square one. I have to pick up her 3rd 10 rx of Augmentin today. Have you folks all used the generic for Augmentin? I am grasping at straws thinking that maybe if I ask for the brand name it will help more....she starts kindy on Monday so I guess this is how she's going to start....We were so hoping to get at least the tic cleared up before she started school so that kids won't make fun of her...Sigh..This is our last refil from Dr. T's script, I'm curious what the next step is if this last one doesn't work... Take Care!! Kathy

Trggirl, yes we find that everything, the tics, the behavior the emotional rollercoaster and all so much worse when she's tired.....it's just that sleep doesn't seem to do it for her....even with a nap she just can't handle the evenings....Sigh

Thanks for the input! I actually have the accountable kids chart things that we used to use when she was younger that say all of the tasks that need to be done, I should drag that back out. It just doesn't feel right to let everything slide plus our 3 year old is now trying to get away with the same stuff so I guess even though it will most likely end up in a rage we have to decide on what the basics are and stick with them. Every once in a while she has a good day or night and I get so psyched thinking the she's finally getting better but then it's right back to square one. She's starting kindergarten in less than 2 weeks and I so hope we can get the tics under control. I really don't see a lot of folks mention severe fatigue.....last night we had a baby sitter who she loves and while the sitter was putting our younger daughter to sleep (an hour before DD1's normal bedtime) DD1 said she was going to bed, didn't want stories (uncharacteristic) and slept through the night....I'm afraid kindy is going to exhaust her! We have been doing the Advil but only 2x per day during the week as she's in daycare. On the weekend we give it to her 3x but don't really see much of a difference. If I really saw a difference I'd drive over to daycare during my lunchtime and give her a dose but I don't know if it really helps. Thanks again for your input, hopefully we'll all get our kiddos well soon!

Hi everyone! Our DD1 is 5 and has gotten what Dr. T in New Jersey thinks is a "text book" case of PANDAS. I think she had it 2 years ago at 3 but it was only the facial tic at the time and we just thought she needed glasses (which she did). Then it went away for 2 years only to come back with a vengeance in June of this year. She again has the facial tic, started having day time accidents and the behavior, OMG! The behavior is so out of control.....we have a younger daughter who is 3 that I am constantly worried about. DD1 pushes her, hits her and is generally unfriendly to her but of course as a 3 year old DD2 is always right in her face! What a terrific combination! We try so hard to not take the rages personally (yesterday hubby was called "you ugly man" and the other week I was "you ugly old girl"...we're a match made in heaven! LOL!), but it's so hard to stay compassionate when she is just so angry and out of control most of the time. I've started letting things go like brushing her teeth at night just so that she doesn't rage. She seems to be tired all the time and the more tired she gets the worse her symptoms become. I don't feel good about letting her get away with things that used to be part of our normal routine and that are important but it's just horrible if we ask her to go to the bathroom or brush her teeth or really anything that she doesn't want to do at the moment. I guess I'm curious how others deal with discipline with these kiddos and also if others have kids who are super tired all the time. Our DD routinely falls asleep on the way home from daycare at 4 or 5 pm...she goes to bed at 8 and sleeps through to 7, no nap. After she has one of her rages she will very often say I'm so tired and she'll say she's sorry and go lay down for a while. It's just heartbreaking to see what this does to the whole family..... Any suggestions would be greatly appreciated! She is currently starting her second 10 days of Augmentin (she did 10 days of Azith and 10 days of Amox previous weeks), Ibuprofen 2x per day and a probiotic 1 to 2x per day.... Thanks and hang in there everyone!!!