matis_mom

Or the missing link, as the case may be!

Wendy, I know exactly how you feel, I am so afraid to go down that path!

Ok, so I'm stressing about this Lyme thing... My son had 3 steroid tapers (first one was a month long, the others 3 weeks each), and did not really get sicker from them... does this kind of rule out Lyme? I was very stressed making the decision to go ahead with the first taper because the initial doc suspected Lyme (but all tests came back with zip, no bands positive, no bartonella, babesia, nothing), but once we went through with it I was so happy, it really broght him back. Thanks Lyme mom and all the others who are sharing about Lyme!

I light of all the Lyme talk lately, could people share info on good LLMDs? I know there are many other forums and websites specific to Lyme Disease, but you guys are my family here dealing with PANDAS, so I'd rather get it from you all. I would love to have a recommendation for someone in the Northern Virginia / Washington DC area. I have gotten a few recommendations but it seems they are all ridiculously expensive and have long waiting lists. I any case if I get the OK from dh, I will go ahead and get the Igenex testing done now to save time. Isabel

Will she swallow capsules? I find with my kids they would much rather swallow a capsule than taste this stuff. I got some empty veggie caps and I use them for oil of oregano or other natural remedies that come just in the liquid or powder form and taste disgusting.

Wow, thanks for posting, that sounds lot like my son too. We have not moved forward with IVIG or plasmapheresis yet. I definitely need to do the IGENEX test! Now if I could just convince my husband...

OK, you've convinced me My question is, after months on Augmentin XR, would the testing be accurate? Thanks for the post, I know you are doing it out of real concern for all of us!

Hi, I am sorry you are going through this! I would think something is definitely up to bring things back on. Get the whole family checked for strep, and take him in to the pediatrician to check him out. My son started an exacerbation while on Augmentin XR (no low dose stuff!), and when I got him checked he had an ear infection (yes, while on strong abxs) They had to add Rifampin for 10 days. So take him in to rule out him having a new infection, and also check the family (even if he doesn't get a infection, daily exposure can bring on pretty much the same reaction). Every single time my son's had an exacerbation it was either someone in the house with strep, or him having an infection (that only happen once, but we had 3 kids with strep and 2 with ear infections at the same time). If your pediatrician is willing to try, I would ask for a steroid taper. Meanwhile, you could give him ibuprofen to keep inflammation at bay. Keep us posted! Isabel

Browsing around I found this, I am posting it in case it may benefit someone, as the website says "open for enrollment" http://www.chp.edu/CHP/PANDAS Isabel

That's an interesting question I have often asked myself. Is he actually getting better, or is he just learning to deal with it better? Last visit with Dr. L she did a scale and it was very clear that the obsessions were stronger than the compulsions. That is, he still has the thoughts, but does not always act upon them. Which maybe means the obsessions are still there, but not as strong, so he can refrain from handwashing. He'll even bunch up all the things that would make him wash his hands, do them all one right after another, and THEN he'll wash. So it's hard to tell, maybe he's just dealing with it better. It's just not right for him to be spending so much mental energy on this But what am I saying! Either way it IS a step in the right direction. "Changing the ritual" is one of the tactics to deal with OCD. Simply by changing the ritual you are weakening the OCD grip. Yes, change is good! Isabel

I have no help to offer but just wanted to thank you for teaching RE! I did it one year and it was fun I would say don't stress too much about the curriculum, just being a loving example will do wonders! Prayers for a fruitful year! Isabel

I would have liked to checked more than one on question 11.

Hi there! I think you have a great attitude about the whole thing. I know it stinks right now but in the whole scheme of things, it's not going to be that big a deal when you look back 20 years from now. About schooling, some universities offer classes with online discussion, which of course is not as good as being there, but at least it provides some interaction. As far as a job, you could maybe try to get into something like medical transcription or something along those lines that you can do from home. I am sure you thought long and hard about this decision and I think it's prudent to give yourself a break and allow for healing. I'm already homeschooling my kids but they still have a lot of activities and I've been contemplating just grounding everyone for a while, but in our case it was my husband and I who had strep somewhere! In any case, my ds ramps up for a few days and then seems to settle back on his own when exposed to strep (well, sometimes we've done steroids to help things along). So it's a tough decision and you have to weigh the pros and cons. Are you on prophylactic antibiotics? Isabel

Hey! Maybe he just has a tic?

I just wanted to bring up this quote from the article posted by pixiesdaddy, it really struck home. All this time I did not get why everyone is insisting on checking for Lyme, now I do. Thanks pixiesdaddy! “Is Lyme an autoimmune disorder?” Gone untreated Lyme can strip away the T-cells, the immune system’s front line of defense against unwanted foreign invaders. When those T-cells are low, the B-cells try to do the job of the T-cells. B-cells can end up attacking the body itself as they are not designed to deal with foreign invaders. By way of brief example my husband spent some 30 years of his life in treatment and with surgeries associated with the diagnosis of Crohn’s disease. Crohn’s is referred to as an autoimmune disorder. The immune system seemingly turns on itself, and cause ulcerations of the digestive tract. Turns out he regained excellent health when he was finally diagnosed as having and received treatment for Lyme and Lyme related co-infections. As soon as those were treated and resolved all of the symptoms here-to-fore thought of as Crohn’s symptoms were gone. here is the link to the full article http://www.thelymelady.com/lyme-disease-is-it-contagious.htm

Wow...scary. I liked how simply she explains how Lyme can "cause" autoimmune problems... reconsidering Lyme testing as I type!!!

Man! I couldn't help myself and I had to reply. This is what I wrote: Oh my! Just because YOU don't know it's a disease, it doesn't mean it doesn't exist. Maybe if you took the time to read the extensive research, talk to and learn from the doctors who have been successfully treating this disorder, and get to meet some PANDAS kids, then you could talk. So please, stop saying "WE don't know if it's a real disorder." There many reputable doctors out there who DO KNOW: IT IS REAL. Change your line to: "I don't know and don't want to bother learning!" Does it sound like a mad PANDAS momma? Sorry to sidetrack the post, so happy for your good news!

Oh my! That stinks (literally), but at least it's something relatively easy to fix I think it's a lot easier when it's an outside factor than if there was something else wrong with the child. Plumbers can be expensive, but a lot cheaper than PANDAS specialists!!! As a hopeful note, when my sister was little there was a gas leak and by the time the neighbor discovered it everyone in the house had passed out. My sister actually had to be resucitated at the hospital. She went on the leave a very normal life, and is now a juvenile judge! I guess no permanent damage there! Keep us posted!

I just quickly wanted to mention that while browsing and trying to make the decision as to whether to vaccinate or not, I came upon an article that said polio only started being a problem after they started mass vaccination. In a study on children who contracted polio, they found that nearly all of them had been vaccinated (for something else) about a month or so before coming down with polio. Basically it said that the shots were what triggered the polio. I wish I could find that article again! But any way, my point is, if you are NOT going to do the rest of the shots, you probably don't need to worry about polio. It is a scary thing, and that is the one vaccine I was going to give my daughter, but now I've decided not to do that one either. On a side note, we wound up in the ER last week because baby had a fever and swollen fontanelle, so in the midst of that I was thinking maybe I should have done the menigococcal one... it turned out to be viral, but they had to do a spinal tap and all. It's never easy with kids!

My 10yo dd also showed some strange behaviors and I would say even a bit of regression (acting childlish) after the last bout of strep. I asked Dr. L and she said that it's normal to a certain extent and just watch her for now. She checks out fine, but I still some stuff that just seems "off" to me. But there really is not much I can do for her right now, since everything seems normal healthwise. So, I'm just trying to ignore it until I see more definite PANDAS stuff, but I sure hope I never do!

Do you always feel this way on antibiotics? I am also being treated as a carrier, and the first choice (Augmentin) made me feel horrible (actually brought the strep symptoms to surface), so they had to switch me to something else. Maybe it's the wrong abx for you? Also, are you taking probiotics? A good quality probiotic will make you feel a lot better and keep the yeast under control. And, if you are into natural stuff, you could try homeopathy. I am doing both right now, the antibiotics (Biaxin) and the homeopathic stuff. Something's got to work!

I think I'm having pediatrician envy! Where do you live? I'm just fantasyzing (spelling please?) you are close by and I can switch to that practice! I am having to spoon feed info to my pediatrician who totally missed the diagnosis, and still after almost a year I get skeptical looks every now and then...

I think you've hit the jackpot with your pediatrician! I wish mine had been that on-the-ball when my son started with this. I would follow his recommendation and do the antibiotic even if the culture was negative. He could just be reacting to exposure (have you checked the whole family?), or it could be that it's a false negative (it is possible), or maybe the strep is not in his throat (could be ears, sinuses, gut, anywhere really). I would just be carefull to treat for longer than ten days each time, rather than stopping, seeing it didn't clear, and then starting again. I think that is a resistant infection waiting to happen. Consider yourself very blessed that your pediatrician caught this and that your son is responding so well to antibiotics. I know resistance is a concern, but you need to keep in mind your son's immune system simply does not know how to handle strep. I have yet to hear of a child recovering without further treatment (although some do outgrow it at puberty, your son still has a long way to go). Thinking back on my son's medical history, he started with mild episodes years ago, and it just kept getting worse and worse. I don't mean to scare you, but just to get you to consider prophilactic antibiotics as a safer alternative than what many of use have had to put our kids through (repeated steroid treatments, IVIG, plasmapheresis, etc.)

Cool! I'll look into it. We've been doing separate cups for each child and individual toothpaste. I'm encouraged that they haven't caught it this time. I've been giving them a homeopathic remedy and I think it's working for keeping them from catching it.

I'm taking 500mg twice daily. I am so confused because ds has been doing really well on Augmentin XR, but somehow it did not work for me. The Dr. said maybe I am just not metabolizing it right? Anyway, we'll see how it works. How come you have 3 kids on one abx and one on another? I am wondering does it just depend on the strain or is it also dependent on the individual?