matis_mom

Such a fine line between keeping them safe and not driving them crazy(er)! We've sprayed the yard, and have cut back a lot of vegetation. I try to keep them out of the woods, but it's just so tempting... I plan on giving them each a pair of lightweight pants to put over their regular clothes when they go in the woods. You can spray permethrin on clothes and supposedly it lasts 2 weeks. That way they can put on their "permethrin pants" when they go into the woods, and I won't drive myself crazy with the laundry thing (I don't think I could keep it up on a daily basis). I also like them to wear rubber boots, seems less likely that a tick would attach to rubber? I don't know, but we are not moving any time soon, and we can't leave in constant fear. I've been a lot more diligent about bathing all little people each night and checking them all for ticks, so far so good thank God! Next on my list is to get dh white painter overalls for when he goes mowing (14 acres, lots of trees!) He already got a double-whammy as soon as we moved here: West Nile and Lyme together! We don't see many mosquitoes (courtesy of the bats, I guess), I wonder if ticks carry West Nile too?

Not much to offer here but just yesterday I was thinking: "If only I could fast forward and see them well again, some day in the future, then I could come back to today and say, "This is all going to pass, you are going to be ok"...and I could endure this a lot better. But, just like you, I don't know when this will end, and I feel like this has become our new normal... I don't want them to live like this forever! But I know, I know they will get well. I just wish someone could tell me exactly when that glorious day will be!

My PANDAS ds was on Cipro for a bit after the tonsillectomy per our then LLMD. He did fine on it, but it was only given for 5 days (sorry, I don't remember the dosage). They put him on Nystatin at the same time (I guess there is a big potential for yeast overgrowth?) Last month my 7yo would not clear strep on Cefprozil, so they gave him Cipro, and I too was quite concerned. What I read said it's not even approved for children unless they've been exposed to Anthrax! Yikes! As it was, my 7yo turned out to be allergic to it (broke out in a rash from head to toe), so we only did 3 days for him. That being said, talk to your doctor. I'm sure we would not prescribe it if he did not think it was safe. I took it for a 2 weeks for pseudomonas (culture came back as resistant to many abxs but susceptible to Cipro), so I guess this stuff is powerful and will get whatever other abxs can't.

My heart goes out to you and your family. I would be totally losing with the doctor for not prescribing another round. But, (like my dh likes to say, and it totally irks me) "it is what it is." You are out of abxs... I would try some herbals (Samento and the like), homeopathy, or even essential oils (like Oil of Oregano or Thieves Oil), anything you can do to stop the downward spiral. Maybe add some ibuprofen to keep inflammation in check? And maybe think of a plan B for your other kids if things get really scary. I still cannot get over your doc prescribing psych drugs!!! Maybe others can chime in but for the most part, from what I've read in the forum, psych meds don't really help.

Very much the same feeling here... I think we need to LOOK AT THE TITLE OF THE POST: "What made you think Lyme?" Well, I think most of us "Lyme Moms" were just trying to answer that question from our own experience I think this whole debate, although very educational, totally side-tracked the original question.

Interesting thread and all the responses very educational... I'll throw in my 2 cents. We initially saw and LLMD (on the recommendation of another family whose child was having similar issues to our ds). They said, on the first appointment and without any labs: PANDAS with underlying LYME. So we started treatment but did not see any marked improvement as far as PANDAS symptoms go. Labs confirmed strep, all negative on Lyme and co-infections. So after a few months, we switched to a PANDAS doc, tried steroids (which I was so afraid of, just because of the potential Lyme), and our son did beautifully. At the end of that first taper, he was back 100%. But, IT DID NOT LAST. We had re-exposures, and tried steroids again, but he never was back as in the first try. So we started considering plasmapheresis. My mommy gut told me we needed to make sure there wasn't anything "lurking" before we went ahead, I just wasn't convinced my son was "infection free", plus other family members kept getting strep. And, I wanted a second opinion before proceeding. So off to Connecticut we went to see Dr. Bouboulis. As part of his initial labs, he asked for a Lyme western blot, and after over a year on full-strength antibiotics, ds had 4 bands positive (5 needed according to CDC, but give me a break!). So, here we are pursuing Lyme treatment. I would suggest you read more about Lyme, why tests are not always accurate, what the symptoms are, what it does to your immune system. Also educate yourself about co-infections, especially Bartonella, since the symptoms overlap significantly with PANDAS. I think unless you read a lot from different sources (to appreciate the great divide on the Lyme controversy), you will probably think, "these people are nuts, it's all a big conspiracy" That's kind of what I thought of our initial LLMD, who was convinced ds had lyme and co-infections and kept testing for it. Unfortunately, I was not educated enough and would not believe it unless I saw it in black and white on a test result sheet. Well, I hope this helps. It's just our story but I think if I had heard someone's story before, maybe I would have stuck with the original course of treatment and NOT done steroids, which might actually have done more harm than good in the long run. Of course, hindsight is always 20-20. You have my hindsight, but every case is different, so you'll have to read and read and try to make the best decision for your child. I'd like to add we live in a Lyme-endemic area, on 14-acres with woods, my husband got Lyme Disease and West Nile virus as soon as we moved in, and there are just so many Lyme cases in our community. But unfortunately, when we moved in 3 year ago, I did not know what I was facing. How I wish I'd known then what I know now!

I shudder to think... We live in 14-acres with woods (I think we all got Lyme as soon as we moved in... the grass was taller than the kids!!!) We've cleared a lot, and I just contacted a forester to see about clearing some more. I'm definitely getting rid of all cedars, and there always seem to be ticks around them. But I don't moving would help, it's everywhere! We have some friends that live in a pretty populated, not woodsy neighborhood, and they all got Lyme too! Isabel

Thanks Jodie! I'd like to hear suggestions on how to detox, I am really getting confused (and financially drained) with supplements. It feels there is not enough time in the day to take all the meds and supplements and detox and live a life! I am feeling more and more piling on the abxs is not the answer, but at the same time I'm looking at the possibility of dd8 having strep again, so this would not be the time to switch anything... I am really disheartened this week... Maybe it's because I myself started Doxycyline on Saturday??? Hey! Maybe I'm the one herxing and driving everyone batty!

Ditto!

Goodness gracious! I'm not going to go into detail but in short, abxs don't seem to be cutting it anymore in our household either. Are we growing our own brand of antibiotic-resistant bugs??? I was thinking maybe we can do another poll on treatment failures? One interesting thing is I asked my pediatrician if they could test sensitivities for strep (instead of putting the child through round after round of abxs), and she said they don't do that for strep because they KNOW it is susceptible to penicillin (yet she herself admitted she has been seeing failures). Was she just blabbing??? Can one get a culture with sensitivities for STREP??? Or is it that maybe there is MORE THAN STREP in there?

Well, I don't know what to tell you... DS is on all of the above (Augmentin, Doxy (just switched to Minocycline because of the sun exposure thing), Zithromax), and still experiencing what seems like a PANDAS flare. We are waiting for the insurance to clear the Bicillin shots. As much as they hurt, they do seem to do something oral antibiotics cannot do. Doing them at home seems less traumatic than at the docs office, and the cream helps. They are dreading the weekly thing, but our doc wants to see if this gets them over the hump. I've seen my daughter start going down-hill and a Bicillin shot stopped it. I know it's hard, my kids hate it but they are very cooperative and non-violent (although my oldest goes nearly into a panic attack, I would not try it without my husband to help). I wonder how they'll look at us when this is all said and done, for all we've put them through...

Thank you for the reply... It makes sense then to see a worsening of the mental symptoms along with the heel pain? I will take it as a herx and hold my breath. We did test for EMFs and everything looked good, but maybe I need to check again... he moved into the room with his older brother and I have to see where they have plugged things. At our house, all outlets are good if nothing is plugged in. But I bet they have the radio or something plugged right behind that headboard!!!

So you cleared yours with your own constitutional? Well, like I said, as long as they are both doing well, it would make sense to just pull the plug and see what happens. And then again you don't want to give up this beautiful recovery you are seeing so far... It is SO HARD TO MAKE DECISIONS!

OK, so... HOW LONG will we be at this? My kids are 6 months into Lyme/Bartonella treatment and I'm not seeing great results, I'm growing impatient!!! This last weeks, PANDAS ds has been doing a lot worse. We had two kids with Scarlet Fever at the beginning of March. I got them checked and they are clear (or maybe I should take them back in again???). How can you tell a herx from a PANDAS flare? Right now DS13 is really struggling with obsessions and intrusive thoughts. The knee pain that he usually experiences at the beginning of a PANDAS episodes has not been mentioned, but now his heel hurts. His warts are out of control. I don't know what to do any more!!!

This is so very interesting. The good thing is, your kids are doing BETTER right now, so I would say you can try and see. From my own experience, after trying Augmentin (possitive rapid after a week on it), Biaxin (negative but tonsils still red and swollen), and Cefuroxime (on month, no much improvement), I got my tonsils out. I insisted on a culture and there was strep AND pseudomonas in there. Pseudomonas is resistant to nearly every antibiotic out there, so they had to give me Cipro for that. Anyway, all I am saying is maybe your son is not clearing the strep because there might be some other bug in there. Can you ask for an "upper respiratory" culture, to broaden the spectrum? That being said, I would NOT try Cipro on a 3-yo. I made the mistake of letting them prescribe it for my 7-yo, and he broke out in a rash from head to toe. Follow your mommy gut. Are you taking the strep nosode yourself?

Wow Stephanie! I am so happy for you!!! I have been thinking about homeopathy for a while now, but we've been to so many different docs/alternative practitioners... how does one find a good classical homeopath? I do believe this is the way to go, especially for our family in the long run, since we all seem to have one issue or the other. My husband is at the point where we are spending so much on copays and seeing so little results with convetional docs, he's said "we'll give it until December and then just go alternative". That's actually a good thing! Well, if you could either post here or pm me with some leads, I would very much appreciate it. Isabel

All I can offer are prayers. I cannot imagine having to deal with PANDAS and an uncooperative husband (or ex-husband?). God keep you all well.

Well, this has happened to us too, and we did not see a full blown episode because thankfully, we caught it (it was an ear infection while on Augmentin). So I think antibiotics do help, even if you do get an infection, it does not cause the horrible symptoms it would otherwise. Right after New Years we all got the stomach flu. The kids were miserable and unable to keep anything down, so they did not get antibiotics for a couple of days, and boy was it an eye opener... sometimes you don't realize what they do until you stop! Hope the girls hold up ok! Isabel

We have allergies in the picture too, but the lungs checked out clear. I just don't know what to do anymore. I can't watch another child go down the PANDAS hill. If his mood and the cough don't clear in a couple more days, I'll have to take him back in and insist they run some bloodwork

My 7yo has had a persistent dry cough for over a week, and he is just not feeling well, and his temperament is quite affected. Pandas ds13 is acting out. Could it be that the 7yo has walking pneumonia? I took him in Saturday and they said his lungs where clear. I know something's up, but I really am afraid if I go there playing the paranoid mother I may loose whatever little credibility I have left at the peds, and then I'll get no help. What are the clinical signs of m. pneumonia? Would they hear anything in the lungs? Do they do x-rays? How is it diagnosed?

Thanks for the reply. LLMD said is is very safe to supplement with OTC lithium, 5 to 10mg daily, so we'll go ahead and do that, plus up some other minerals that were low. I've been reading a lot and it seems for what my kids have (no lead or mercury, thank God!), increasing calcium/magnesium plus adding vitamin C, malic acid, etc, should be very helpful. The LLMD also recommended a specific supplement but going by the description I found online does not seem to make any sense, so I'll have to check back with the office before I shell out yet more $$$ in supplements

My understanding is that heavy metals start building up in the body, the brain, and lastly they build up in the hair, so if you find them in the hair, it's a pretty good indication that you have build up in the body and brain. But don't quote me on that!

Unfortunatelly I think a lot of MDs will just put the "wacko" label right on your forehead once you mention Lyme. Sad, but true. I would hold off unless something comes up and you think she needs to be informed.

Did you see any improvement once you addressed that? I don't know what to believe any more!

In the never-ending quest to get the kids back to 100% normal, we went ahead and did the hair testing. Aluminum is high, and so is copper. Now we sort of new about the copper thing and just changed the water treatment system in the house, but I could not see where the Aluminum would be coming from. We don't "do" any the things that are listed as possible sources. So I googled some more, and one site said to avoid Bentonite... Anyone know any more about this??? Incidentally, their lithium is low, and both high Aluminum and low lithium are risk factors for Alzheimer's