Kbossman1

LOL....I've read about alot of husbands on this forum that "don't get it" or "don't understand" and I'm so thankful that my dh is the opposite. He completely understands PANDAS.... now I'm the one that does all the research, but I try my best to explain to him what I've learned. When we joined a study for children with OCD at Duke University last year, he went each and every week with me and dd7 and he learned a lot! He is wonderful! Well, I've gotten pretty good at demanding the dr's to do bloodwork.....so here we go

Hi, I posted a few weeks ago about my non-pandas dd6 having an anxiety attack that landed us in the ER. I was worried because, yes...she had a strep infection about 1 month prior to the attack. Well, we've been through influenza b, croup, influenza a, and now strep again. Now, last week ds3 had strep ( I had no idea) and then he developed a rash...so I took him to the urgent care fearing strep....and sure enough it was. The next day, my PANDAS dd7 "had a rough day". Amazingly after ds3 was on abx for 24hrs, PANDAS dd7 went back to being ok. She's been doing great since we started Kelflex 2 months ago, probably 95% better. Well, of course dd6 started to say that her throat hurt on thursday. I took her in, strep test was negative, but dr said he would put her on abx anyways since sibling had strep. This child has had strep twice when amox. didn't work, which is what the dr prescribed, but I felt that I was lucky that he would prescribe anything considering her test was negative, so I didn't want to rock the boat and ask for something else. We started the amox..... and no change. She is still complaining. I call the dr yesterday and they say to give it until wednesday, and if not better by then, bring her back. Last night poor non-pandas dd6 had a breakdown Crying, sobbing, telling us she never wanted to go to school again b/c she didn't want to leave me.....and crying that she had this weird feeling that we didn't love her anymore. This is so out of character for her....to me it lets me know that we definately need to have some bloodwork done and investigate. What I'm asking you guys is this: what do you think? and I would love to hear from parents on the forum that have more than 1 child with pandas. Unfortunatley this is exactly how my PANDAS dd7 started...not wanting to go to school b/c she didn't want to leave me. My fear is that the dr that is helping us is going to think that I'm nuts when I come in telling him that now another child has it too. Between the 4 children, I have been there 7 times in 3 weeks.....I'm starting to feel like he thinks I'm nuts Please send me your suggestions, thoughts, opinions, advice.... Thanks!

Now I have to say....that one is my favorite!!! Where is the dunce cap for this guy???? Wow!

I've got a good one.....FORMER drs office, one of the pediatricians was looking at dd7's chart and realized we had recently had a ton of bloodwork done, so she asked me why. I told her that I believed that dd had Pandas.....did she know anything about it. She said yes, but the kids who have pandas don't have behavioral problems, once the strep is gone, they are fine. WOW....good thing we looked for another dr!

I've been wondering if there is some new strain of strep bacteria that doesn't show up on these stupid rapid tests myself. All 4 of my kids get it all the time. Literally my pandas dd7 had 19 positive tests in a period of 36 months....and the last 9 were after her tonsils were removed. Strangely enough after always testing positive, she has been testing negative since September. It's the weirdest thing!! Every now and then the other 3 have had a positive test or two, but they've been negative so much since September that it left me wondering what the heck is going on?? I started to wonder if there had been some mutant strain of strep, or if the dr's all started buying some cheap generic test.....still don't know, but it is interesting that you've had the same problem. AND I KNOW THEY HAVE HAD STREP....BUT THE TEST SAYS NO. Finally we found a new pediatrician that will prescribe abx for their symptoms, the breath, and based on what their throat looks like, and not just that silly rapid test. Anyone else experienced the same? Hope you feel better soon Emerson!

OH! So sorry for you too! I had it along with my other daughter, but it was pretty mild for me. Then dd4 got it over the weekend....now dd7. Good luck with staying calm...AND with getting better fast!

That is interesting! We were told from the ped last week when non pandas dd6 had it that it was flu type b....which is more mild I belive compared to A and H1N1, so I can hold on to that I guess! Pandas dd is on tamiflu, started it tonight, and she's already on a hefty dose of Kelflex twice a day....been doing that for a month. I usually give her motrin alot anyways, so I'm also keeping that in her right now...and a probiotic daily. She seems to be taking it well so far....I guess we'll see what the future holds after it runs it's nasty course.

I posted last week, "Did this really just happen to us?" after taking non pandas dd6 to the E.R. for a panic attack. She had strep in december and had to take 2 abx to get rid of it. Well, the day after this panic attack I took her back to the ped. and she tested positive for the flu. Could it be that she will be pandas b/c she had strep 4 weeks ago...and now had the anxiety? Don't know....could it be the flu? Don't know. The dr was great and did put her on abx after I mentioned the panic attack ( our new FABULOUS pandas doc.) and I haven't noticed any other strange behavior..plus she is finally feeling better now. ROUND 2...so far pandas dd7 has been ok....until today. She came home from school complaining of stomach ache, then headache, then fever of 101.6, and now she's clinging to me and feeling terrible. I say I'm holding my breath....because this was my fear. I did make a decision not to do the flu shot this year b/c of pandas....but now I'm wondering how many parents out there have experienced the flu with their pandas child....and did it put them back into exacerbation? We've been doing SO WELL!!!!!! Guess we have no choice but to find out for ourselves over the next few days....but wanted to see what you guys have experienced too. Thanks!

So glad that you decided to post....I'll have to see if I can find that book. Thanks for the tip!

Non pandas dd age 6 had strep. 10 days of amox. she still had strep. 10 days of omnicef and we seemed to be ok for 2 weeks. This tuesday....fever back, she says her throat and her tummy hurt. I couldn't take her to the ped. because they were closed because of the big ice storm here in NC. Took her to urgent care.....strep negative, but her throat is red, so with her history he put her on Zithromax. Today....fever free and appeared to be just fine. No complaining all day. All of the sudden tonight at dinner she says she is cold, and won't eat. Then by 8pm she is laying on the floor crying. When I try to comfort her she says her head hurts and she feels like she can't breathe. No fever....she starts to breathe rapidly. I lay down with her, trying to get her to calm down. She's crying and says her chest hurts. Before I know it she is scaring the heck out of me, and we're racing to the er. She is breathing SO fast....she says she can't breathe.....breathing so hard she can't talk. ****I'm thinking maybe it's an allergic reaction to the zithromax. We get to er....they take us straight back. She looks awful, red cheeks, red eyes....she's worn out from breathing so hard. She finally calms down before we see a dr....and falls asleep. I'm sitting in the room, almost knowing what has happened....but too scared to think about it. Sure enough.....some dr is saying the words "panic attack" to me 10 minutes later. They think she had a panic attack. OMG Maybe I'm just paranoid.....or has anyone else's child started this way. 2 hrs later, she wants to go home because she's tired. We're home now....she's in bed, but I can't sleep. Wow

Well, I may not have to be the "mean" person afterall.....the mom called this morning to say that now the child is running a fever. Sounds like she will be going back to the dr....and for our sake...I really hope they figure it out, and put her on abx. At least I feel better knowing that dd will not be exposed "for now"....Thanks for the advice, I know what I "have" to do, but it's helps to hear other people agree. Hope we can survive this thing and still have a few friends left when it's all over....

Don't want to make this too long, but here goes; I have a neighbor who also happens to be a very good friend. I've been keeping her daughter ( 7yrs old, same age as my pandas dd) since she was 15 months old. Currently I watch her after school everyday. Several times during our pandas journey....I have told her parents to have her tested for strep b/c my children had it and so did some other kids that I watch. Once I called them to say... "look, I have 7 kids in my house, and my 4 plus the other 2 (sibblings) have all tested positive this week, I know your child doesn't have symptoms, but please take her in".....then she tested positive. They don't understand pandas....I think they must think that I'm crazy because they rarely take their children to the doctor and I'm there every other day. So dd (pandas) was doing SO well after Christmas....and all of the sudden this week we started to backslide. I was thinking maybe she is being exposed to strep, either someone at home or at school....why was our improvement going the other direction so quickly? This Monday morning it hit me....it was this child. They were out of town the day we started the Kelflex....and during the 2 weeks when we had made so much improvement. Then they returned on Saturday the 1st, and dd started backsliding on Sunday evening....after having a sleep over at their house on Saturday. (first sleep over in a LONG time too) So....I'm thinking this all to myself Monday morning and then that afternoon this child's mom calls to ask me how all of my kids are doing b/c her dd has a headache and then threw up at school. I tell her we're fine, but headache and vomiting could be sign of strep if she doesn't have any other symptoms....she says she will have the dr test her. Mom calls me to say that the dr says definately a throat infection....but her strep test was negative, so they didn't give her any antibiotics....they want to wait to see if the culture grows. So here I am...thinking WOW...I found the reason that we stopped progressing....it was exposure, and it seems to be confirmed to me now....but what do I do if this child isn't on abx to get rid of it. BTW, I have to tell you that we haven't been around this child in 2 days....and the pandas symptoms are improving already....I'm pretty sure this is what was going on. What would you do....do I call the mom and tell her that I'm not going to keep her dd after school until they put her on abx? Do I experiment, see what happens? I already hesitate to tell this friend much about pandas b/c she looks at me like I'm crazy......which already bothers me, so I'm pretty sure it will make her angry....should I care??? Sorry, and I know that there are other members out there with much bigger problems than this.....but I thought this would be the best place, for the best advice....thanks!

Thanks for the responses so far, all I've been able to find online is information about strep and kawasaki disease. Even what I've read about strep makes it sound like it's a side effect after the infection.....but nothing says how long it would last. I'm thiking it may have something to do with the immune system....but can't find what I'm looking for yet. Even if she got it after strep, which she has had A LOT, you would think that it would stop eventually after the infection was gone.

For years my dd (pandas) age 7 has had skin peeling just on the ends of her fingertips and on her toes. A couple of pediatricians had said that it looked like athlets foot, fungus? We've tried several different creams, even prescription creams....with no change. I'm just now realizing that this could be related to strep....or autoimmune issues. I haven't had any luck finding information online, so I thought I would post this to see what the other parents out there already know. Thanks!

So well put.....I've been trying to convince my mother, my father, my husband, and my mother-in-law ( all family lives within 15 miles of us ) for a long time. My mother still even though she says that she belives/ understands...she STILL tells me all of the time..."well, that's just normal" "some kids just do those things, it's just her age". Meanwhile, I'll have you know that I have a degree in Early Childhood Education, I've owned a family home daycare for years, been a teacher assistant, worked at the YMCA....you get it....I've been around children of all ages my entire life, and I KNOW that this is not normal! Not to the degree that I SEE because I LIVE HERE!!!! URGH!!!! Something that did help.....is when I recorded the Saving Sammy episode of mystery diagnosis on my dvr and made my family members watch it the next time that they were here. They could really relate to the part where Sammy would wear the same clothes everyday....because that's how this whole thing started was with sensory issues and separation anxiety. After seeing that show they seemed to understand a little more....at least dh did. And I've pretty much had to bite my tongue around friends b/c they will never understand if they dont' live it.....and I hope that they never have to.

Y-boc scores are a measurement scale for OCD. Here is a site to read more. This ones for adults. http://www.stlocd.org/handouts/YBOC-Symptom-Checklist.pdf. A good therapist should be able to take a yboc to measure severity and impairment. 18 point swings are a clear indication of something way beyond wax and wane. Wow, I never heard of the points swing, but dd age 7 was Y-boc 29 when we first starting seeing our psychologist, and a few months later was Y-boc 9. Guess that's the swing huh? It's amazing how much more I know this year, than we did last year....thank god!

Hi, your dd sounds alot, and I mean A LOT like my dd age 7. Sensory issues, ocd, hitting, name calling, spitting, can't make decisions, but somehow holds it all together at school.....but seperation anxiety is huge so it's hard to get her to school......etc.... It's taken us a really long time to get to this point, but we finally found a local doc that called it pandas and put her on kelflex twice a day.....huge improvements! We tried Omnicef for 2 months and didn't get any results....if there were any results they were very minimal. Within 4 days of Kelflex.....huge results. Keep trying, it sounds like your on the right path.

Yep, twice a day.....for a total of 1250mg/day. The office is ABC pediatrics in Dunn, NC. It's dr. Deckert. **** So far, dd7 has slept in her bed all night the past 3 nights in a row.....which is a big deal, and she hasn't told me that she doesn't feel good in 3 days......also a big deal. Counting our blessings right now, first the medicine, then Christmas, then a foot of snow! What a way to end this year huh? Thanks everyone!

Merry Christmas to all of the parents on this forum! Thank you as always for all of your support. Great news......I finally found a doctor here in NC that will treat PANDAS. I read about him thru finding another mom online. On facebook actually. So get this: 1. The doctor is only 25 minutes from my house 2. The got me in the next day......now I had to cry to make that happen, but it worked and we were actually squeezed in the next day. 3. The doctor read over dd 7's history w/ strep, her diagnoses of OCD summary from Duke, and her recent bloodwork, and looked at me is disbelief that it had taken us so long to find a doctor that understood. He actually shook the paper with her bloodwork results on it, and said very loudly "This is elevated!!!!" "This is PANDAS" He couldn't believe how many doctors that we've been through trying to find one to help. 4. He put her on a 1250mg Kelflex/day and told us to come back in one month and evaluate how the meds are working. *****IT was the BEST Christmas present in the world! Hopefully she can now work on getting better and feeling better......I'll keep you posted on the changes that we see with Kelflex. MERRY CHRISTMAS EVERYONE!!!!!!!!!!!!!!!!!!!!!!

She also has the clothing issues, have to stretch all armpits of shirts, etc. How do kids "get used to" clothes bothering them? I can give a suggetion for this....we worked on CBT with a great dr at Duke this year for 6 months and came a long way with the clothing issues. Underwear hurt, socks hurt, shirts and pants have to start and stop at a certain place on her arms and legs, and what helped the most was making a thermometer from 0 up to 10 at 10 being the red zone, or the worst. When she got upset about her clothing, we would calm her down by telling her we understood, and asking where her thermometer was.....it was usually a 10. Then we would help her make a chart for where the thermometer was at 2 mins later, then 10 mins later, then 20 mins later....and usually we would all watch this "thermometer" come down to a 3 or 4. She would then start to forget or get used to the clothing and keep it on for longer periods of time. Baby steps here......first we worked on underwear.....then moved to something else when underwear got better, etc... It took a few times for her to understand that we wanted her to keep the item on for a few mins, and then discuss how she felt, but we still use this tool today......and boy have we come a long way! Hope it helps. We also have What to do when your brain gets stuck, and she loves it!

Well, we've done it before....and now this pediatrician has been kicked to the curb! Good news is that I located a mom ( on facebook, with the pandas support ribbon) and as I was reading some of her postings I realized that she lives in the city about 20 mins from me. She mentioned her son taking Kelflex for PANDAS and that he had been on it since August. I sent her a message and asked who her pediatrician is, and she wrote me back. EVEN better news is that she had no idea about what PANDAS is and this dr is the one who diagnosed her son and put him on the abx. We talked for along time, and both of our kids are a lot alike with symptoms and behavior. Needless to say, I called this office first thing this morning and they said that he could see us Jan 3rd. I explained to the woman who answered that as nice as that was, my daughter is not feeling good and I REALLY want her seen before Christmas if there is any way that they could squeeze her in. The dr's nurse called me back after explaining the situation to him and told us to be there at 12:45 tomorrow!!!!!!! So, I wanted to send a little cheerful update to all who commented with helpful suggestions.....and keep everyone's hopes up for Christmas!

Thanks to all for the replies....I knew I wouldn't be alone with this smell stuff. I've been telling every dr for 2 years now that I can smell when they have it.....literally. My kids have all been so young, and still are so young, that we are together mostly all day everyday....and with kisses and hugs from loving 3 and 4 year olds, and my 6 and 7 year olds....when they are right in my face talking to me....I know. Thanks to meeting another mom and this forum that lives near us, we have the information of her pediatrician who is trying to learn more about pandas and work with them, and he's only about 45 mins away, so I'm going to call and see if I can get in to see him this week. I'll probably take all 4. My ds3 now has a fever....he did act ok today, but I knew when he laid down next to me on the couch a little while ago that he felt warm. I will call the dr's first thing in the morning to make sure that someone looks at their cultures....and if that doesn't show up, we're off to some type of urgent care of minute clinic. Other than that.....I re-scheduled our apt. w/ Dr. B for feb....but we'll never make it that long. I'm going to call there first thing monday and get the soonest available....if I have to get another job or borrow the money....we'll be on our way soon! Thanks for the advice! It's always a little clearer to listen and suggest for someone else, and when I don't know what to do....someone else can suggest exactly what to do.

Hi Suzan, I'm the one that said that... We actually went to see a dr. at Duke, a pediatrician that is... and when I asked her about dd7's test results; IgM band 23 was present, everything else negative....she said that it must be a false positive b/c lyme doesn't exist in NC! Yep, you didn't dream it.....and I drove an hour away from my home in Clayton NC to here this. And, our daughter had a tick on her neck in April 2010, I removed the tick as soon as I saw it. 3 days later she had a red bump around the area of the tick bite. She has what I beleive is pandas due to strep, but could also be lyme, anxiety, ocd, complains of things hurting all the time.....feet hurt somtimes. She always doesn't feel good, etc....... Just saw your post and wanted to chime in....it was me!

Just wanted to update, and tell the story as I'm sure that most of the parents on this forum can totally relate. We have started seeing a new pediatrician. He gave me false hope that he was going to help, and even said that he would treat dd7 with abx. for 3 months, and we would go from there. He said this b/c I was very upset that due to weather all the way up the east coast, and lack of funds on my part, but mostly weather.....that we had to postpone our apt. to see Dr. B. He made me feel hopefull when he said that he would do abx. for 3 months. He put dd7 on amox. 250 2xday. I lost alittle hope with the choice of amox. but we are willing to try anything. No results, and meanwhile dd6 nonpandas has strep. So dd6 is on 1100mg of amox. a day, and she starts to get alittle better, but then begins complaining that she still has a sore throat. She finished the abx. this past tues, and by thurs the fever was back, and the same odor coming from her little throat was there, she was miserable. What's odd about this strep is that usually non of my kids run a fever or get this sick w/ strep. This child has had strep 10 times with no symptoms other then the odor that I can smell. I've been telling my docs forever that I can smell when they have strep....they don't believe me, but usually the tests show that I'm right. BTW, do any of you experience this same odor from your child's throat? Well when I took dd6 back to the new doc this thurs...w/out me even saying anything he looks at me and says..."I can actually smell the infection in there" and I say wow! Me too.....she was pretty bad off. I then explain to doc that dd4 and ds3 also have this smell, ds3 worst of all. He says I could bring him in to be checked. I ask him to change the abx. for dd7 pandas child b/c it's been almost 2 wks, we see no improvements whatsoever and I believe she may have a sinus infection due to bloody mucus in her nose, and she's complaining that she doesn't feel good. He tells me that he's not willing to change the abx. and we should keep it going a little longer. So, let me get this straight.....dd6 on 1100mg amox. does no good against strep, and when I tell you that pandas dd7 isn't having any improvement on 500mg amox. and you know that she's living with another child who has been strep pos. for 12 days now.....and you don't see the need to do something else??!!!! I swear that I live in the twilight zone...completely alone sometimes....until I get on this forum anyway. So....next day ( friday/ yesterday) I take in dd7 pands, dd4, and ds3 back into him and say test them for strep. BTW dd7 pandas gets up yesterday crying, red cheeks, sounds like she has marbles in her throat, can hardly talk, won't eat.....crying that her throat hurts....and oh yeah, she's got the funky odor exactly like dd6 the day before. So we all go in......dd7 test is negative ( she has no tonsils and I wonder about the strep swab when there's no tonsils to actually swab?? sometimes she's pos... and sometimes not) dd4 is positive for strep ( now that's 2 kids in our house) ds3 is negative. So the dr. puts dd4 on abx. and leaves my other 2 children to just suffer. I don't get it? My mother is with me so she even says to him.......if the other 2 children have this smell, which you said was the smell of infection....and they are complaining that their throat hurts and they live with 2 kids that do have strep.....what are the odds that they don't or won't have strep? He says "I don't know the answer to that." So, finally after asking him nicely for about 20 mins to change the meds....and listening to all of his excuses that he won't, we get the ol' "well, we will culture this, and I will call you on Monday and we'll go from there..." I've learned this is code for get out of my office now b/c I'm tired of talking to you. So, sadly for us b/c we've been dealing w/ pandas exacerbation since September when strep reared it's ugly head for the first time after school started....there is no fix yet. Dd7 complains that she doesn't feel good EVERY day, she has unexplained rages, crying spells, sensory issues are back full force, it's like pulling teeth to get her to school everyday, I cry after I drop her off at least 2 out of 5 days of the week, and here we go with things getting worse: Last night when we get home from my motherinlaws, she stands outside the house and refuses to come in. She says that she heard a loud noise inside and crying....and she's scared to go inside. I reassure her that everything is fine, and we have to go in.....and I get her inside. While I'm tucking her in she says to me "I'm scared" and I say why? What are you scared of? "Everything" she says......so sad. She is losing her childhood and we've been sent away from 6 drs so far, that have take my $, but just don't care. OK, sorry for the long post, but thankyou for listening. I feel a little better now. Have any parents here noticed the smell that I'm talking about? Oh yeah, one more thing. I ask the dr about her having a sinus infection....and we even ask him to just to 10 days of another abx. then we can go back to this bull*&^% dose of amox. and he tells me that he doesn't see a sinus infection....REally?!!! the coughing, the complaining, the bloody mucus, sore throat, red checks, and bad smell coming from her throat.....you dont' see that?!!!! UGH! So....just to let you all know, we are going to meet yet another new pediatrician this week......until then I guess.