matis_mom

We did our son's draw after months of antibiotics (never did stop them at all), and his score came back at 168!

I will definitely try that... do you have a specific brand? I looked at the website and there are so many different brands, it's hard to make up my mind. Thanks!

I would be upset too! I don't get it, was it so much more work to just send in just in case? Now with the fever, the lymph nodes, etc, they better do something! I hope the appointment goes well. Even if the rapid/culture are negative, I would insist that they do ASO and Anti-DNASE titers. Keep us posted. Isabel

DS12 was very anxious last night, he keeps having these "thoughts" that for the longest time he has not been able to tell me what they are about. I could tell he wanted to tell me, but he was almost afraid of saying the word. We just sat there for an hour him trying to get it out, and I just trying to be patient. Finally I said, "Here, just write it down", thinking he would just right ONE word that would give me a clue. Well, he sat there for about 15 minutes and wrote a whole page about how he is afraid the devil will appear to him. He wrote other people are afraid of scary stuff or monsters or things that are not real, but the devil IS real, and I am afraid especially at night when I am alone. Sigh. The whole thing was quite eloquent and made total sense. It totally helped him calm down, and he ended up sleeping in the family room with my husband. I though I would share this as I found it an amazing tool for when they are so afraid they can't speak, yet need a way to let it out.

DS had an ear infection two weeks ago (3 siblings w/+strep rapid, 2 w/ear infections). He was already on Zithromax plus Augmentin. Ped added Rifampin for 10 days, which he finished Saturday. Last night he was very anxious (that's another post), and said his ear felt clogged... I am wondering if it really is an infection or just pressure as a result of allergies. He does not seem stuffy or anything, but neither am I and I have the same feeling in my ears. My doc insists it is not strep, just pressure due to allergies, and gave me Fluconase. Maybe I should try that on him, but I hesitate adding anything else to the picture. We are seeing Dr. L tomorrow so I guess I will wait till then. Any thoughts on strep in the ears? Or maybe it's staph after all? Or is it just allergies? Allergies are horrible here this spring. Isabel

Hi Michael, Sorry you had to "join the party!" Don't beat yourself up over the late diagnosis, hindsight is always 20/20. And yes, we all wish our doctors (or ourselves) had caught this earlier. BUT, there is hope! I keep thinking "back in the days" our children would have been diagnosed as who-knows-what, given psych. meds, and that would have been it, without much hope for improvement. Now we know what it is, what makes it better/worse, and have different treatment options. Be thankful you now have a diagnosis and can treat accordingly. As you will see from reading in this forum, there is no "one size fits all" treatment. This frustrated me to no end in the beginning, but now I have come to accept it and be thankful we have found doctors who have helped us tremendously. Hang in there and come back to the forum to rant, ask questions, whatever you need, there will always be someone here who can help.

Amber, It sounds like your doctor knows what he is doing, and hopefully the blood work will confirm the diagnosis. It takes some time for antibiotics to work, so don't get discourage if you don't see an immediate change (some people do, but I think for most it takes a while). Even if you don't see any improvement, it might just be that you need a different antibiotic or a stronger dose. While you wait for the test results, try to get a copy of her medical record and see if there were any infections at the time you started noticing something was up. Also, get yourself and your husband tested for strep. Be patient, nurture your marriage, and take care of that baby Isabel

Stephanie, I know what you mean, I haven't done it either... We also see eczema every now and then. Just keep in mind it is very important to keep the skin in good shape as chapped skin or cuts can be an open door to infection. We've been using Gold Bond lotion and it works great. What is the soap you use? Isabel

Fiveam, I would recommend you contact Dr. Zackrison in Fairfax, VA. She is the one who diagnosed my son (he had strep in his gut). It might take a couple of weeks to get in with them but it's well worth it. She is excellent at looking at the whole picture and trying to get at the root of the problem in terms of the physical aspects of it (but we felt she was not addressing the neurological aspect aggresively enough, so we are seeing Dr. Latimer as well). I don't have the number handy right now but PM me if need more info or want to talk (we are not too far from you, in Warrenton) As for the GI issues, I think getting him on good probiotics will definitely help, at least until you find a doctor who will listen.

Stephanie, My PANDAS ds definitely reacted when his sister had impetigo. It was all over her face and it cleared pretty quickly with the antibiotic cream (I think it was Muporicin or something like that?). Did the pediatrician give you any other options as to how to clear the impetigo? 5 months seems a very long time! Also, are you disinfecting the house properly? They could just be picking it back up. I know it's a pain, but either staph or strep can be hard to erradicate. The infectious disease specialist we saw suggested giving the kids baths with 1/4 cup bleach everyday for a couple of weeks, and then after that maybe twice a week. During the first week, make sure you launder all linens in the hot cycle, and take care of bathrooms, switches, doorknobs, etc. This is what they do for resistant staph infections. I am not saying you need to do this precisely, just suggesting oral antibiotics alone may not be enough. I have not done this yet, but I think I will once the weather gets a little nicer and their skin is not so dry. Last time we had an "outbreak" I even bleached all the stuffed animals! I have to say we did stay clear for a while... Also, have their tonsils looked at (if they still have them!) Isabel

We are still here too! Started seeing Dr. L in Nov. Saw great improvement on Augmentin plus steroids. We just need to figure out how to keep strep out of the house!!!

Yes, he does have allergies. I guess I would sort of expect a little uptick in behaviors, but nothing this sudden and/or this extreme. Does a sudden and extreme ramp-up in behaviors fit with the TS model? If so, then maybe that is at least part of what's going on here. However, we have him taking curcumin and quercitin, as well as taking a prescription nasal spray (Flonaze); he's not exhibiting any typical signs of being overwhelmed by allergies, though he did have a red eye a couple of days ago. It cleared up with a couple of doses of eye drops. Do you have anything else to recommend for the allergy picture? Thanks! This week we've been having trouble with ear infections, brought on by the allergies. Is he stuffy at all, any complain about the ears?

We are homeschooling, so I'm the school nurse! Well, I'm not a nurse, but can definitely rule out school in the "classroom" But then there's the world out there... And we are out and about a lot. If only I had know about four years ago about this darn PANDAS thing, I would have caught it a lot earlier... I still just cannot get over our old pediatrician totally missing it. He was an older gentleman and I had such respect for him. I am not saying he should have known about PANDAS, but at least have connected the tics and joint swelling to strep. Sigh.

Is PANDAS a result of undiagnosed/untreated/repeated strep infections plus a combination of the right genetic make up? Or is it just the strain? What exactly needs to happen? Can we prevent it in any way? I am just wondering is there anything I can do to keep my other children from getting there... We seem to be getting strep a whole lot this year, and I worry I'll start seeing symptoms on the others... DD9 was very emotional (crying over everything) yesterday... really out of control emotional/can't-help-myself kind of thing. At least I know when they have strep, thanks to our little canary. Has anyone tried homeopathics for the rest of the family? Just stressing out... Isabel

They don't know it, but their immune system does! My son was acting up a couple of nights in a row, no one had ANY symtoms of strep. Took them all in, 3 with strep throat, 2 with ear infections (possible strep?). Sad as it is, at least I'm thankful now I know and can do something about it. If it wasn't for my little canary, I never would have guessed and they all would have gone untreated and possibly end up with PANDAS as well. It is interesting they usually react BEFORE you see symptoms in the other children. I remember so clearly last fall we were at a Halloween party and my PANDAS ds was holding up the bathroom line because he was doing his OCD handwashing thing (which he hadn't done in a while), that was Saturday. Next day my daughter had a high fever and sore throat, confirmed strep on Monday! I am not saying run to the doctor at the first increase in symptoms, you may have to wait a little so the culture comes back +. But if you notice a definite change, you better believe it, there's strep going around. Like Peglem said, exposure wakes up the troops and calls in some more, but unfortunately, the troops are not very well trained

No tonsils or adenoids, they came out this summer. Never had problems with allergies before, but he is stuffy right now... I guess the pediatrician did not give it much of a second thought because last week I had three kids with strep throat, and two with ear infections (one with allergies, the other one without them). She did suggest doing some zyrtec as well, but I think I'm going to stick with a homeopathic remedy for that. In any case, I'll try the Rifampin and see what happens. Thanks all for your input and sympathy! Isabel

Did not think of that possibility... if it's viral, nothing we can do about it, right? But just in case I'll go ahead with the Rifampin. Maybe that will finally give him the upper hand on this thing. I am encouraged, though, that so far not many of the symptoms have come back. All we are seeing at this point is just reassurance questions related to contamination fears, but it's only at bedtime...

Well, last week we got everyone on abxs (a few strep throats, a couple of ear infections). Yesterday and today Ds PANDAS tells me his ears are hurting. I thought, how can this be, he is on Augmentin XR twice a day plus 250mg of Zithromax. But I thought I would check it out. Both ears infected! We are going to try Rifampin (sp?) and see what happens. At least now the pediatrician is totally getting the picture. And, looking on the bright side, his PANDAS symptoms are not that bad right now. I'm so sick of this! Isabel

I know I may sound like a broken record, but have you checked everyone in your household (including grown-ups!)???

Susan, I would not wait. Looking back at my son's records, I found he had 3 of the markers for RF in a period of a couple of months, and like you said, no one ever thinks it's rheumatic fever! That was back in 2006. I guess his PANDAS symptoms were not marked at that point. Does your daughter show any tics or chorea (this can be very subtle, my son had an eye-blinking thing that would come an go, along with joint swelling off and on). Then about a year ago he started with the stomach aches, fatigue, OCD, etc. Pediatrician was clueless. She did at some point want to do a CBC, but he had so freaked out when they did a blood draw to test for Lyme, she took the "wait and see" approach. My point is, the stakes are too high! A swab or a blood draw take only a few minutes. The sequaelae (sp?) of RF can last a lifetime! If your gut is telling you something is wrong, go back and insist. If your doctor won't listen, find another one who will. Get those titers done now, and the swab (although it will probably be negative), and see if you can get a comprehensive stool analysis to see what is going on in the gut. You might have to find a doctor who practices functional medicine, or a DAN! doctor, but I would not wait until May. In my experience, the neurologist is great for the neurological stuff (duh!), but they tend not to run a whole lot of tests, you'll save a lot of time if the ground-work is already done. Don't mean to freak you out, but I don't want you too look back on this and say "I should have..." Check out this link for RF http://wikidoc.org/index.php/Rheumatic_heart_disease

We feel is better to let others know so they can alert us if they have strep going around. So far, it has really been a blessing. Just last week two different moms called to tell me they had it in their houses. This week it hit us, but I was able to catch it a lot quicker because I was sort of waiting for it to hit home. It is a personal decision, but I think once people know what is going on, they are very understanding, and a lot more compassionate towards the child.

Looking at your post I would say while you wait to see Dr. Latimer, do all you can to get to the reason for the diahrrea. My son had strep in his gut. If you could do a comprehensive stool analysis, plus the usual bloodwork, that would probably be a big part of the puzzle. You can see by reading this forum any day that our children have different issues, and have found them out in different ways. Dr. Latimer is excellent, we see her too, but when we saw her for the first time, we already had a lot of labs we brought along, and I think that really helps. One way or the other, I would strongly encourage you to get the to the bottom of the GI issue, and definitely start some probiotics if your child is not already on them. All the best in your quest, and keep asking any questions you may have. There is always going to be someone in this forum whose been through it and can help you out!

Those are good questions, wish I had an answer! So far I'm negative, but I'm waiting for the culture. I'm also going to ask my doc to run titers for me (I wasn't going to get into it with the nurse practitioner).

Mary, I would trust your instincts. My son is that way. Even on Augmentin XR twice a day, he will react to exposure. Last summer when we found out about PANDAS, we decided not to sign him up for wrestling again, you know, too much close contact, being cooped up in a stinky gym, not what we needed at that point. I've seen the coach disinfect the mat before each class, but still, it's just a microbe factory to me. My point is even if the child with the strep problem is treated, unless the gym is being super careful about how the clean, strep could be just about anywhere: tha mat, the bar, any equipment they all touch. So, we are sticking to outdoor sports, and even then, if we know someone is sick, we try to avoid them. We've let all our acquaintances know we have a strep problem, so they let us know if they have it. Hope this helps, Isabel

I guess it depends on the technician... we went to our local LABCORP, explained what we needed, and she was a bit confused as to what to do/how to bill, but then she just did it for us. My husband was insisting on trying to figure out a way to pay, and she said "you've never been here " Maybe just go in with some home-made cookies?