Priscilla

I have my DS7 booked for tonsillectomy and I'm terrified of the anesthetic. He had a cavity filled and went bonkers for HOURS after the gas. He was shrieking until 1 a.m. and developed a fever. My youngest had tubes put in when he was 2 and he woke up screaming and fighting. It shook the nurse up and she rushed to find a doctor. He was inconsolable for almost 2 hours. I don't think he has PANDAS, but I wonder if all 3 have lyme.??? I spent the last year on a juvenile bipolar forum before hearing about PANDAS. It is VERY common for juvenile bipolar kids to have terrible reactions to anesthetic. and you gotta wonder how many juvenile bipolar diagnosis really are PANDAS- my dd surely would have fit bipolar as at least one diagnosis. Along with OCD, tourettes, ADD, ADHD, SID...... the list goes on.....

this sounds alot like my dd- we just had one monday night in the car (what fun that was) that left my face, neck and arms full of scratches- for some reason it was all about my face on this one- Seriously, I look like I got attacked by a pack of rabid raccoons. Just have to tell everyone, its a long story, don't ask. My dd recently started cussing at me during these, this is hard, calling me a F&*#ing B%&ch- my little girl that used to say "stupid" is a bad word and would never call anybody that. For some reason this is the part that really bothered me, it shows how this terrible illness is not only robbing her childhood, but her innocence- UGGGGH- sigh...

YES- My dd broke her 2 front teeth at 2 yrs and went under anesthesia in the ER to remove the fragments. When we got home, she was kind of convusling with a temp of 104. I didn't want anymore trauma for the day so I held her and sponged her down and she came out of it by morning. So then we were worried about malignant hyperthermia because my moms sister and half brother have a muscle disorder called myotonic dystrophy. When she had her tonsils out at 3 yrs, we made special arrangements with the anesthesiologist to use gas that he would use if she was high risk for malignant hyperthermia. She did much better, but did actually fever to about 100-101 and shook, but only for a little while (maybe 30 min). I am interested to hear if anyone else has an experience.

VERY true for us. My dd 8 has always been fine and little ahead in some subjects. Noticed the decline in math last year just before severe exacerbation and PANDAS diagnosis. This year is still a bit of a struggle, mostly c+ but a D+ in math- she tries so hard, seems she just forgets it so quickly. Did get an A in science (she just loves it so much) Homework is a nightmare. We used to get so frustrated. I have changed our approach and it has helped some. First, I give her a 30 minute break when she gets home, she can do whatever (play, eat, watch tv) she cherishes this time. Then we work on homework. If she is getting really frustrated, I give her another break, maybe 10 min, maybe 30, depends on stress level. While this can be very time consuming, it does help us get it done, and with a little less stress. Forgot to mention, if you are like me, I work, so I am not there to help with homework everyday. Last year she was so independent with her homework, this year it seems I have to walk her through it, especially math. She gets a packet, I have her do the things she can do independently on the days I work, then the night before it is due, I help her with math and we check over the rest. She gets a weekly homework packet so it gives us a little more freedom in getting it done. May have to work a little differently if you have nightly assignments, but the breaks have really helped.

Having hope and most importantly faith will get you through this. We have morphed into a new "NORMAL", my dd is much better, not 100%, but I don't think there really is a 100% anymore, this is part of who she is, and gaining some acceptance of that is allowing us to move forward and pull the most good out of the situation. It has brought dh and I closer together, my dd is learning to overcome adversity and find strength from deep within. It is funny, when my dd was 2 she fell at preschool and broke her 2 front teeth, shattered and needed to be picked out in ER operating room. As we sat in the waiting room, by dear but very vain husband was a mess freaking out about the loss. Not to sound crazy, but I knew right then and there, that this trauma was shaping her, and making her our "Hayden". Now that she is 8, we looked back so endearingly at our toothless little one- for about 5 years, she had no 2 front teeth, straggly hair, spunky attitude-my "perfect" little rugrat. I again feel like I am getting a glimpse into something that is molding her, going to define "Hayden" in many ways. I am actually excited to see how this pans out. Keep trucking, take it day by day. Don't let 1 bad moment ruin a whole day- I have really learned to live by this. Best to you.

Did he have H1N1 vax? My dd started after an illness diagnosed as H1N1. I have also read about encephalitis post the H1N1 vax. My dd did have elevated strep titers, with no signs of strep- but she has just relapsed without strep. Alot of these children would be considered PITAND. Seems my dd gets alot of the nonspecific viral illnesses, and these always are what sets her off.

my dd8 started on this, started to notice a big difference after about 10 days. Unfortunately, after about 2 mos (and trying to wean 2 x) it lost effectiveness. It may have been from us trying to wean though. I did see a post from a mom that said when they were nearing the end of the bottle, symptoms would ramp (other moms said it too)I think the stability is not so good, and you have to get it refilled every 10 days, makes is kind of a hard one to stay on really long term. We changed t Augmentin XR, but my dd is older.

I really appreciate this post, and I hope I didn't upset you about the vax post. My sarcasm wasn't directed at you, but our vaccination program and medical community that pushes it on us, which ironically I work for as a nurse. You have confirmed what I believe about having my dd live as normal a life as possible, that is why I tried to take her off all meds (had to restart abx this week though) I have kept her mainstream in school, and I try to help her find humor in her quirks (sometimes it works, sometimes it doesn't, maybe you could enlighten me there, is it is more harm than good) I think your advice to the teens is priceless, and it seems for my dd the more she is out from under the microscope, out playing with her friends, at school, the better she does- of course she lets it out at home, but that's ok, as long as she can find SOME happy time. Maybe she hears me talking on the phone to family about it (even though I try not to when she is around) and this makes home a sick place. Anyway, I am glad you have been so successful- gives us hope. I hope a time will come that you feel more comfortable with your family, I pray all the time that this won't completely tear apart my relationship with my dd as she grows. So I wish you well on your journey, and again, I am sorry if something I posted upset you, but you are right, get off here, go out there and LIVE!!!!!! Lord knows you deserve it

I would just like to put my 2 cents in. I did vax my dd with everything recommended born 2002. My gut told me to slow things down when she was getting 5 shots every visit. So then I started to space them out. No one knows what specifically causes PANDAS, but if you had PANDAS, your child may then be predisposed. No vaccine instantly protects you from anything, it triggers your own immune system to create B memory cells that will then be readily available if you are exposed to that same strain again. Considering the mechanism of what we know about PANDAS, I think it would be a crapshoot to give any vaccines, ESPECIALLY one that is going to mount a strep antibody response. My dd had the first vax 2002, has no known immune deficiency (She is actually overactive, PANDAS with increased antibodies) and she had a few ear infections and several bouts of pneumonia. In reviewing her records, the ear infections came right after the vaccine. So, if your child is PANDAS prone, the stimulation of antibodies can be dangerous and even if the child is immunodeficient (which would mean they would not mount the antibody response) then what would be the point of giving the vax? Another problem I have come to have with vaccines is what they expect from the immune system. In what world will a BABY be exposed to 13 DIFFERENT types of strep ALL AT ONCE- It is ridiculous to think that our bodies would be equipped to handle that, it is not even found in nature that way. Then you add on all the other infectious strains varicella, polio, whooping cough, flu, hepatitis.....No wonder our kids immune systems are tweeked!!!! How can we expect their immature little immune systems to handle all that at once, we are setting them up for failure. If I had it to do over again, I would be MUCH more conservative about vaccinating. Not to mention, if you look hard enough, alot of the vax manufacturers have been cited for production issues- even scarier-- Sorry this one gets me going, this is just my opinion

Seems sinus issues can be the culprit for alot of these kids, and it is strange the sinus area is where my dd reports her head pain after IVIG- The ivig nurse stated most people feel it in the back of the head. Makes me think it is doing some work in the sinuses. I don't know that CT would show any more than MRI (MRI is usually the more in depth) but I am not sure. Is she currently seeing a neurologist- maybe further investigation into the "sparks" could be helpful. It is obvious she has hyperactive neuro activity though (any many PANDAS kids do). How long has she been on ZITH? During my dd severe episode in April, it took at least 10 days for the omnicef to start working. It lost effectiveness though, she couldn't take zith (hurt stomach too much), then to Augmentin which took several weeks to show effects but seem to do a pretty good job (better with XR 1000mg than the 875mg) You may need to switch abx, but give it a little time before jumping. Has she had the full Lyme, Myco panel?? I haven't had it yet, but I am going for it this month. It is worth it for peace of mind, and if she has had this her whole life, some moms are reporting congenital lyme. There seems to be several different infections that can cause this, and we don't know yet how many could be passed in utero.

Yes, absolutely, when dd was in most severe exacerbation last April ,I had NO IDEA what was going on with her, but I kept telling my dh that her pupils were dilated, and what she was going through kind of seemed seizure like because she would be fine, then get a look of terror in her eyes, her pupils would dilate, she would be raging and crying at the same time but she wouldn't let me near her, then it would pass, and after a few minutes she would be normal again. Very scary stuff.

sorry we don't have the same symptoms, but some wierd ones nonetheless, we can't say certain words "back, chin, jaw, and the new one today is gram" really sets her off too, hitting, blood curdling screams, runs to the bathroom. She must have severe inflammation, the question is, what it causing it? Have you tried steroids? If not, it may help to just get it under control, even if only a little, may get her and you some relief. About the vibrating thing, since she is in such torment with what it going on in her mind, maybe it is something that makes her feel good, and distracts her. I don't mean to be graphic either, but it may be the only form of pleasure she gets with all the other things going on. I don't know if you could find something a little less disturbing (for you) to help soothe her. Hot, bath, (maybe you could take her to pick out lotions, aromatherapy stuff...) massage. I am just throwing suggestions. I know when my dd is in exacerbation, anything I try to soothe her just pisses her off more. I think I had asked if she has had an MRI, that was negative right. How about testing for celiac disease (since it can correlate with food) I know alot of these kids have had allergy testing too. So may roads I know.. I will pray for your daughter and your family. Does she EVER have good moments? if so try to hone in on what she has eaten for several hours prior (maybe keep a journal), and what activities has she been in engages in recently.. may help you to do things to increase the frequency of the good moments. I know my reaction to my dd in her rages has changed and it can help a little. I just shut up, walk away (I know it is so hard when they follow you and hit you) but I just kind of go zombie like until she comes out of it, or changes to wanting affection instead of being angry. All rationality is out the window, so remember what you think you SHOULD do (punish, correct, explain, react) just has no effect here. All my prayers to you.

I saw some online, that was the only place. Quickvue strep A test. I think you could actually purchase it from sears online. Just google quickvue strep test retailers.

we are actually lucky enough to live in Southern California, and we surf regularly- we get lots of sunshine:) Dec just seems to be the month when she picks up whatever is going around. I know I am crazy for having her off abx, but it actually feels good that I was able to pull them out, she hasn't been on them for 2 months, so I am hoping they help.

Thank you, I really value your input, exactly what I was looking for. I am keeping the appt with the lyme doc on the 27th. Like you said, I can take it one step at a time. I did ask him about getting a full work up for lyme/tick borne diseae/myco/and immune panel. The awesome thing is he takes our insurance:) So really no reason not to go for a workup and consult at least. I do still want to get a strep test since she has been sick since Thanksgiving and she had elvated strep titers at the start of this ride. Thanks again

I think I may be trippin out a little, first step, rule out strep- she has been sick - DUH! Taking her in for a test tomorrow

I just wanted to duplicate this in the lyme forum if possible

I would like to post this on Lyme forum too, can anyone tell me how

So here I am with my greatest fear, posting that we are back on abx. My dd 8 has been doing ok without abx since oct 2. Still had tics, mild ocd, very occasional rage quickly controlled... all very manageable with a very pleasant little girl in between So here it is, December, our sick month (every year since birth) She actually had 2 days of fever the weekend after Thanksgiving and has been fighting a cold (mostly cough/congestion) but holding ok. To the orthodontist monday, then on the way home it started. The meltdown for reasons I am not completely aware of, and I can't dare ask without shrieking screams to "shut up", along with a few smacks and punches. Then the crying. The torment of whatever is going on in her head, but she can't or won't share. So the rest of the evening, very touchy.. anxious about what words would come out of my mouth, really on edge. She has such hypersensitivity to things around the mouth, head jaw. So whether it was something with the orthodontist appt (my suspicion), or a delayed reaction to the cold, its back.... This morning started with anger and crying. So hard to see when its been gone for months. By far the worst symptom, just shear torment (you can see she is fighting her mind) So I restarted my stash of Augmentin this am. We are post 4 ivig (to which I credit our success over the last few months) Unlike many, we didn't do a slew of testing before ivig. It was sudden, approved, and she seemed to be textbook PANDAS (I guess when it finally makes it to a textbook:) Elevated titers, almost EVERY diagnostic criteria. So I have been thinking about the Lyme thing. Never really made too much sense for us, but Mycoplasma would, the ivig should help with that though. So desperately, I made and appt with a LLMD (maybe ILAD??) Dr in my area. I am for some reason very hesitant on this though. It seems many are testing positive for this, and being treated. I am trying to find out how many of us are getting true success with this. There is so much contraversy surrounding lyme treatment (not that there isn't for PANDAS , but it seems even more so for lymes. I can't find anything that assures the testing is truly reliable. False negatives are one thing, but false positives are scary, especially with the aggressiveness of treatment. I feel I am in pergatory and just would like to hear some thoughts. I am going to try and figure out how to post this on the lyme forum too. Thoughts are appreciated.

Maybe you could arrange for him to spend that time with one of his friends, maybe going to movies, mall....

have you tried a topical lotrimin? Hard to say if in groin, but dd had pretty bad fungal rash on her legs, just a few days of lotrimin and it cleared. It may be worth a try, and shouldn't hurt anything. Available over the counter at the drug store.

sorry computer acting up

Funny I read this this morning and skipped it because my dd 8 has had braced since June with no major problems. We have been holding ok (not perfect, but good) for over 2 mos with no meds. Today, orthodontist appt, braces tightened, then major breakdown on way home, a little touchy all night. We will watch for now, gave some motrin for the pain, we will see what happens. It does make me think about something I was reading about cranial sacral therapy and children with autism having rigiditiy of the maxilla (upper jaw bone) the jaw is a sensitive area for my dd. Hard for her to even hear the word jaw, or chin AND she has had severe teeth grinding for several years, always dismissed by the dentist as stress. She also had a traumatic fall at 2 yrs which she broke her 2 front teeth out. Naturopath thought that may be very significant, but I have to say we haven't followed through with the cranial sacral therapy, makes me think though.

Funny I read this this morning and skipped it because my dd 8 has had braced since June with no major problems. We have been holding ok (not perfect, but good) for over 2 mos with no meds. Today, orthodontist appt, braces tightened, then major breakdown on way home, a little touchy all night. We will watch for now, gave some motrin for the pain, we will see what happens. It does make me think about something I was reading about cranial sacral therapy and children with autism having rigiditiy of the maxilla (upper jaw bone) the jaw is a sensitive area for my dd. Hard for her to even hear the word jaw, or chin AND she has had severe teeth grinding for several years, always dismissed by the dentist as stress. She also had a traumatic fall at 2 yrs which she broke her 2 front teeth out. Naturopath thought that may be very significant, but I have to say we haven't followed through with the cranial sacral therapy, makes me think though.

I think it is VERY important to use caution when taking vitamins. While there is many studies on certain vitamins and their necessary functions in the human body, the problem is they are found in foods that act synergystically with other vitamins/minerals/components. It can be dangerous to take vitamins that are isolated, and you probably aren't getting the intented benefit. Whole foods are your best source for necessary vitamins, I have found a whole food childrens vitamin available at Sprouts for children called vitamin code (by garden of life) Also, a good read on vitamins is a short but good book called "Back to the Basics of Human Health" by Mary Frost