matis_mom

I think it's to kind of jump-start the treatment, it kind of makes the fog clear. The advantage of shots (or IV) is that your GI tract doesn't have to suffer through it!

Yes, he did give him a bicillin shot, which was a bit hard becuase ds had trouble just being still, but afterwards ds said it did make him feel better.

You go girl! May I ask are you taking the same BRAND as the kids? Or do you have a different one to recommend for adults? Also, do you know if I cand do BOTH for myself? They've tried Augmentin, Biaxin, and now Cefuroxime. It really seems like nothing will bring my tonsils down (except a tonsillectomy?). So I'm thinking maybe if I add OLE I'll have better luck? But, I want to make sure I don't "ruin" the antibiotic. Thanks for sharing! Isabel

So, finally got to see Dr. Beals. Very down-to-earth, straight forward guy. Luckily we had tons of labs with us so it was very productive. He said, yes, with 4 bands positive on the Labcorp test, we need to treat for Lyme, and the protocol should take care of the strep too. Since ds is doing well on Augmentin XR, he kept him on that and added Doxycycline. He did not overwhelm us with a million supplements or asking us to run more out-of-pocket tests. I asked him point blank in resources are limited would he spend on testing or treatment and he said, "treatment". So, here we are. I thought it was going to be totally overwhelming and over the top, but no. Just continue with what is working and add something else to the mix. I can deal with that! As for supplements he said just a good, high-potency multivitamin (left in a hurry and forgot to get them, so I'll have to call about that), probiotics, and fish oils. That's it. I know he is very qualified and could give us laundry-list if we were up to it, but I like that he met us where we are at. We've been through enough the last year, and are financially, emotionally, and physically exhausted. So next visit we might get a little more sophisticated, but for now I feel at peace that we are dealing with the Lyme monster!

Well, I have to say this is a symptom of OCD, but my oldest, who does not have PANDAS did go through a phase where he was "confessing" to me all the time, and apologizing over and over, and also plagued by intrusive thoughts. It seemed like it took forever, but then it slowly went away. Seven is an age when they start developing their conscience, and I think it's not uncommon, but probably just being made worse by PANDAS. Just try not to give it too much attention. The more you try to talk them through it, the worse it seems to get. I have found (taking my dh's advice) it's better to just give them a quick response and then get them moving, do something else, fun, etc.

I just asked the same question when I sent in my second kit (for dd10). I said his brother has now dx with Lyme, and I suspect dd has it too, but they both show very clear increase in symptoms when exposed to strep, so my question was simply how does Lyme Disease play in the mix. I'll post when I hear back.

I don't know, but I think in our kids case, exercise is good only as long as it makes then feel good. Getting stressed out is NOT good. Also, given my ds's health issues, the doctor said yes he can exercise, but not to the point of exhaustion. He plays travel soccer because he loves it, but if his knee is hurting or he's feeling wiped-out, I have him stay home. I really don't see point in pushing them.

She calls antibiotics "snake oil"? Goodness gracious! And how does it cost a lot of money? If you have a good doctor, the right treatment costs less that pschiatric drugs! Oh well, at least she gave you a prescription! You really need to find someone who understands.

I think what you are experiencing is totally normal, especially when you start homeschooling. I've been homeschooling for 9 years now, and still have problems with people singing to themselves and getting others side-tracked. Just be creative as to how you use your time and don't try to do things with both kids at once, not yet anyway. You can start with the younger one, while the older one reads in his room (or somewhere other than where you are), then you can give the 6yo something to work on while you work with your 8yo. Then maybe you can all go for a walk, then have a snack, and then repeat, half hour each. For the 6yo especially, keep it short and simple. Like 15 to 20 tops per subject. If he can't focus, have him run up and down the stairs, get a glass of water, crawl around, etc. I don't have much time right now but pm me if you have more specific questions.

They treated our carrier with Clindamycin (but he is 14!) so it might depend on the age, but generally speaking I think amox is kind of lame?

We are VERY happy with Cigna so far. But I do think depends on each indidual employer what kind of benefits you get. PM me if you want more info.

Hi there! We also had one treated as carrier, and in general none of my kids show symptoms. So if you see your PANDAS dd ramping up, check everyone in the family. It has always been the case for us when PANDAS ds starts going downhill, we find someone has strep without symptoms. Also, see you are in Maryland (right?) I would check everyone for Lyme Disease via a Western Blot. We all kept getting strep and now it turns out a number of us (including PANDAS ds) have Lyme, and I do think this is the reason we kept getting sick.

Ok, so I hear a lot about herxing, but I have no clue what it looks like. Could someone post some examples? I've not been feeling too good lately, and yesterday I was throwing up and had to stay in bed all day, actually sleeping most of the time, had no energy at all. Could that be herxing?

That's what I wanted to hear! I am so hopeful if I get all my kids properly treated for Lyme, PANDAS will be a vague memory! What does herxing look like? I just want to be prepared.

Hi there, You'd be surprised, we took ds to a naturopath and even though he is very anti-antibiotics, in ds's case he said if they are keeping him stable, then just stay on them. We run a food sensitivity testing through him (it was about $200 out of pocket) and I'm glad we did because it turns out he is allergic to wheat and milk, even though he never had a "reaction" to them. Even before we got the results we had put him on a very restrictive diet and he did very well on it. About the yeast, it feeds on sugar, so anything you can do to avoid sugar will help tremendously. I would recommend you look up the GAPS diet, and/or the Specific Carbohydrate diet. The premise of these is that you eat in such a way that you starve out all the bad bacteria/yeast. So basically no sugar, no potatoes, no grains. It's a bit hard, but you get used to it.

I know renovations can put any family on edge! Can you go away somewhere for a few days? About Allie, it stinks to have to wait til Tuesday. I would go back Monday and say "DO SOMETHING!" Other than that, I don't have much to offer, except prayers and cyber hugs!

Ok, so those of you whose children have been diagnosed with Lymes: Do you think once you take care of the Lyme and coinfections the PANDAS will resolve, or Do you think Lyme is simply one of the possible for triggers, and even after you erradicate Lyme, you could still have the autoimmune part to deal with? I don't know. For some reason I feel like once we take care of the Lyme (and this may take long indeed), PANDAS will resolve on it's own, but I don't really have any scientific reason for this. What do you all think? How are those who are deep into Lyme treatment doing in respect to their PANDAS-like symptoms?

Very, very happy for you and praying things keep improving and stay that way!

I was going to suggest the same. It's always good to write down what you want to say to the doctor anyway.

Thanks! I'll look into that. I'm on a roll with the pediatrician, but I doubt she'll prescribe that. I might try the local ENT.

I checked out the links and surfed around a little. Very interesting! A CT scan is equivalent to 100s of regular x-rays. Also, some technicians might not "bother" adjusting the intensity for a child? Goodness! If I do go for it, I'll be sure to watch out for that! Here are two additional links http://www.cancer.gov/cancertopics/causes/radiation/radiation-risks-pediatric-CT http://www.cincinnatichildrens.org/svc/alpha/r/radiology/radiation-cat-scans.htm

even a 1/4 cup of bleach in a tub would be enough to trigger some major neuro reactions in a susceptible person. I cannot do laundry with it or use it in household cleaners and my son quit (his choice) chlorine pools years ago. We even have special filters on faucets if you could witness how my son reacts to chlorine, even a TINY amount, you would possibly understand why this is a caution that needs to be voiced. And a search on the TS forum would show you that there are many other kids with similar sensitivity to it. For some kids, the reaction can be very dramatic and not just an increase in mild tics. just because a doctor is an expert on one thing, does not mean they necessarily have all the info on other things...that is understandable. And as I stated in my first post, no one is doubting that this would help to control strep and staph ...just that the trade off may be intense too! I would still urge parents to be very careful about using any bleach in bath water without first being sure it isn't going to trigger skin reactions (my son gets hives from it) and possibloe neurological reactions, including increased tics. The white vinegar sounds a good alternative Hmmm... vinegar... I remember my mom rinsing our hair out with vinegar to make it shinier I've been meaning to switch to vinegar for housecleaning, thanks for reminding me! It seems like a much safer alternative, even if we all end up smelling like salad! Also, someone had posted about using a hydrogen peroxide solution with a netty pot for sinuses?

Shoot! I didn't realize that. Maybe if a lot of people request it, they'll have it available sooner...

We were doing the raw milk thing for a while. We discontinued after a while b/c my daughter had unexplained tummy aches that did go away once we stopped the raw milk. I heard later through friends that they had found pseudomonas in the raw milk. I don't think anyone got seriously sick from it, but definitely not something I want to add to our "mix"! Glad it was caught and is being treated Gone are the days when we thought it was best to leave all those little complaints alone! Good thing you took him in.

I really wanted to see this and show it to my dh, but really could not justify the expense of buying it. I just checked it out and it's available through Netflix. Not your "date" kind of a movie, but we'll cuddle up with some popcorn and freak ourselves out! I guess it could be considered a "thriller"?