matis_mom

Hi Judy, I will try to answer some of your questions based on our own experience. Titers take some time to come down, but if you are seeing a positive trend, then it's probably just a matter of time. My son has been on abx for a year now and his titers are still not back to normal, but coming down overall, although with a recent ear infection they went back up again. But if all he has had recently are 10 days of amoxicillin, well, I think you might want to try a longer course of something stronger. For our son too tics and chorea are gone but OCD remains. He is still on high dose Augmentin. Did you ever try a steroid taper combined with continued hd antibiotics? As far as the family goes, my husband and I always tested negative, but had elevated ASO, so we are being treated for that. We have our first appointment with Dr. B next week, so I can't speak much about him, but I would think he might try a stronger antibiotic and steroids before recommending IVIG. Some kids see great improvement with the right antibiotic and steroids. Hope this helps! Isabel

No, she wasn't tested for mono. She hates needles with a passion. I can kind of go by what my son's bloodwork reveals... fifth's disease, HHV6, etc. My dh has had Lyme Disease and West Nile Virus (at the same time!), and my baby wound up at the ER (she had an unexplained high fever and swollen fontanel) with spinal tap and all. They found no infection, so they ruled it a virus (I have the feeling it was West Nile too). So I'm sure she has been exposed to pretty much anything and everything. I guess at this point it really doesn't matter what it was that tipped the scale. I'm just going to focus on getting ds through plasmapheresis, and get dd checked out by an llmd. If that doesn't pan out, we'll go see Dr. L.

Wow Pixiesmommy! It is so refreshing to hear how well your family is doing! I started ds on the GAPS diet (like Specific Carbohydrate Diet, but introduced very slowly). I have not seen any dramatic changes yet, but he does seem to have more energy. The interesting thing is that he is all on board with it, even though it's quiet tough (no sugar, no grains whatsoever, no potatoes). He's been on chicken, beef, eggs, stewed pears or apples, ripe bananas, broccoli, zucchini, or green beans for a week now. It's funny he gets all excited about what he can have next. He is actually asking for zucchini! We make "pasta" by slicing it with a peeler and frying in it butter. I am not doing the whole family right now because it would be too overwhelming for me, but I try as much as possible to cook healthy for everyone. Your post gives me a boost and the conviction it is worth trying, for everyone, especially since PANDAS seems to run in families, I'll do whatever I can to keep my other kids healthy.

Thanks DCmom! My husband is totally on board about Matias, but does not see it on dd. With her, there are no tics, no OCD, just worries, fears, low self-steem, a bit of depression I would say. But no join aches, no debilitating fatigue like Matias had, nothing physical to back it up. She does, however, have more of a history of tic bites, and she had strep back when Matias started going downhill (we ALL had it), and a few more times since then. Plus, a history of tick bites!

But if PANDAS is about the antibodies/titers and the inflammation they cause, then it seems that, at least in some cases, it doesn't matter whether there's an active infection or not, right? If merely being exposed can cause one's titers to rise, irrespective of infection, then the auto-immune response/inflammation is likely to continue to be an issue nonetheless, right? Oh yes, absolutely, we get reactions to simple exposure too, but I'm saying do not discard the possibility of an actual infection, which may require a change in antibiotics.

Hi Robin, I just read in an article posted in the Lyme forum that, according to this drs. experience, inflammation markers are usually normal in Lyme. So I would push it, and take him to a PANDAS specialist if you keep seeing red flags. I know, it stinks! I have a second child who just recently started with lost of fears and she even tells me she thinks she is going crazy. My dh does not see it. I am so overwhelmed with other stuff, I'm just putting it on the back burner, but as soon as things settle a little I will have her checked out by a Lyme specialist, since she does have a history of tic bites and her strep antibodies came back normal.

Hi SmartyJones! Remind me how old your son is? It could be just the age. I can totally relate to that situation, and I can tell you my older kids would realize it's quicker to cooperate, but the younger ones would do exactly what your son did. So, there might be some OCD or other issues involved, but I see this happen with my younger kids ALL the time. It's like they have to go throught it a million times before it clicks and they realize the fastest way to get to watch the show is to cooperate. And, it takes consistency. A friend of mine gave me this analogy, and it may not apply to you, but it definitely applied to me back then (and it still does when I'm tired!). They do this experiment with monkeys: monkey pushes button, gets no banana, monkey pushes button, gets no banana, monkey pushes button, gets no banana, (lets say 30 times, no banana) then the 31st time, he gets a banana. That one banana is enough to keep the monkey pressing that button another 100 times! So, please don't get me wrong, I am not making any assumptions here, but I thought I would offer that to illustrate how our little kids "monkey brains" work sometimes!

I was just telling our PANDAS doc that there should be a "PANDAS FAMILY SUPPORT SPECIALIST" to deal with the rest of the family! We've gotten the run-around too, and I've gotten the "oh you poor crazy woman" look so many times, I don't even care any more. I just want to be DONE with this business!!!

My titers came down (from 250 to 167) after 20 days on Biaxin, but now I have red throat and swollen tonsils. Does any one on your family have any signs/symptoms (I don't have symptoms, I feel fine, but then I look at my throat and can't deny what I see). So I'm being treated again, and I hope this works! I understand your frustration after putting the whole family through a month of heavy duty abxs! Who is your PANDAS ds doing, though? I think if he is stable you probably are ok, but if there is an increase in symptoms then yes, you probably need to back on antibiotics. I wish there was a way to now 100% whether or not anyone has it. We are hoping ds will have plasmapheresis soon, and after the year we've had, we are not taking any chances, everyone will be on antibiotics for a couple of weeks. Is there anyone else in the mix that could keep re-infecting you? Any dogs?

My son got an ear infection while on XR, it is not bullet proof, although I have to say the "fallout" from that wasn't too bad. They did have to add Rifampin for 10 days. I would say if your son is not showing an increase in symptoms, it's probably ok to assume there is no active infection?

I went back to the doctor today because last week I had a red throat and swollen tonsils, but the rapid was negative. This week it looks redder, although I don't have any pain. But, my shoulder started hurting like crazy yesterday for no apparent reason. So the doctor did a culture and started me on Biaxin (Augmentin did not work last time), and also tested me for Lyme (just regular lab). So I hope and pray if I do have it, it will come up NOW and I won't have to go back and forth and spend even more time driving to appointments. I have a 10 day prescription for Biaxin, and then the plan is to switch to doxycicline (or whatever it's called) if it comes back positive. I have to say even though I feel OK, I felt a lot better while I was on antibiotics last month for strep. We'll see...

Here is something... Psoriasis is a T-cell-mediated disease that can be triggered by infection with group A beta-haemolytic streptococci. It is proposed that psoriatic skin lesions are initiated by exotoxin-activated T cells, and persist because of specific T cells that react both with streptococcal M protein and a skin determinant, possibly a variant of keratin. As discussed here by Helgi Valdimarsson and colleagues, cytokines released by the superantigen (SAg)-stimulated T cells could induce or enhance the expression of the crossreactive autoantigen, leading to the rescue and activation of autoreactive T cells. In this way, the SAg-determined T-cell receptor V beta phenotype would be maintained by T cells in psoriatic lesions. http://www.ncbi.nlm.nih.gov/pubmed/7718088

Read Head, Psoriasis is also autoimmune AND related to strep! If you do a google search under "psoriasis autoimmune strep" you'll be surprised. I cannot find the article now, but I read about a study where they tested persons whose psoriasis was flaring, and large percentage of them tested positive for strep. Now I had never heard of this until a few months ago. We are trying to figure out why we keep getting strep here. My husband has psoriasis and every now and then his face looks all read and puffy and he looks ten years older! It hasn't happend again since I found this out, but I'll be sure to send him to the doc next time it happens. Wouldn't it be something if by trying to get help for your daughter you also find help for yourself! Amazing what mothers will do for their children, but sometimes neglect themselves. I've been to the doctor more often than ever before to try to figure out our strep situation. Hope you find some answers soon! Isabel

Can you just copy and paste the url?

Hi there, I agree with the others that is it at least worth a try. I would suggest you print some of the articles pinned at the top of the forum, and see if your primary care physician is willing to just give you a prescription and see what happens (alternatively, do you have any sympathetic MDs in the family?) Of course while you are there, insist on a strep test. That would be the quickest way to go about it, since you are not near any of the experts. But, I would just call and make an appointment with Dr. Latimer (301) 530-9200. With her and all the other specialist, the waiting can be a couple of months, so just schedule it now and you can always reschedule if you have to. Hopefully you will find someone local who will be helpful, maybe you could even try going through a rheumathologist or an immunologist.

Thanks all for the support! I do hope this is it for DS. I will keep you all posted, let this be another success story for our family, but also to give hope to those who are struggling right now trying to find the right treatment. fixit, I'll pm you.

Just got back from dr. L... She got on the phone with CIGNA right there and then, and got it approved, no problem! So we should be doing in at the end of the month. I am both excited and scared, haven't had time to sort my emotions... Even dr. L was shocked they so readily agreed with her. AAAAAHHHH!

Reading this article (I don't know if it's the same one you read), I am just sick to my stomach because my dh just started with thyroid problems (extremely high anti-thyroid antibodies, whatever they are called). The title of it is: Human Parvovirus B19 Infection - Autoimmune Disease Trigger http://www.suite101.com/content/human-parvovirus-b19-infection-a17818

OMG, very similar! She has 2 bags of silly bands she won't even open and so many more. She keeps the broken ones too. She hates to throw away her drink bottles or any boxes because she wants to use them for projects. She keeps her candy, bags of candy from halloween. She does not drink the last of her drinks or eat the last of her meal. If she were to lose part of her necklace like your dd, we would have to talk about it for a long time and she would cry and cry too. She can't seem to spend her money either. It has to be the most perfect thing to spend her money on so I think she is hoarding her money as well. She has a dust mite allergy too. I just have her sleep in my room with none of her stuff since her sister can't sleep alone. It's easier that way. Susan Wow - you guys are SO describing my son when he was younger.... He couldn't even leave an old soda can in the parking lot without wanting to bring it home and calling it his "friend".... and the allergy piece made it very difficult because he especially hoarded stuffed animals. I did 2 loads of stuffed animal laundry every week for a while! For his other (hypoallergenic) collection treasures (pokemon cards, marbles, matchbox cars, wrestling men, hockey figures, legos, transformers..etc...)I found it best to have special places for things - I used bins and I had several of those plastic 3-drawer storage things in his bedroom. I told him he had to put everything away at night. Once it was out of site, he would eventually forget about it and about every 6 months I would clean out the bin and remove the items he hadn't looked at in a while. I did not throw them away, though. They were labeled with a date and put in a special secret spot that I called "toy purgatory". They sat there in limbo waiting to see if he asked for them again. If I did not hear mention of them in the next few months, then I gave them away. There were only a few things that I gave away too quickly and, luckily, he never found toy purgatory! I will tell you that he is better now, but still has things that he gets stuck on. Right now it is those little finger skateboards. Now that he is older, though, he is able to part with things for money... so he has learned to buy and sell things on ebay. That has reduced his obsessions somewhat - I think because he recognizes that if he sells it he can buy it again if he wants it, so it does not seem so final. I like that toy purgatory idea! And oh the stuffed animals! The thing is they each have a name and they are all related into one big family, can't part with any. Maybe they can go on an extended vacation, or move to another continent And, I started bribing them... $1 for a box full of junk, it works!

Oh goodness! Your post gives me so much hope! You have an amazing determination, that is just awesome! I am also happy to see how your faith plays in the mix (that's on another thread, but I thought I'd bring it up). For my ds, I know God has a wonderful plan. I'm just not seeing it right now, I wish He'd let me in on this secret! But what encourages me is to see that with determination, you can overcome this. Yes, it's hard, but you can do it if you try hard enough. My son is 12, and of course he tries to get away with certain things, and it's such a fine line between "accomodating" and letting him get lazy! I will remember your post next time he tries to cut down on schoolwork! Thanks again for sharing, and I'll let the world know when he's back 100% for good (he was there after the first steroid burst, so I know he can get there given the right conditions!)

Oh man! That supplement is definitely worth a try! And I had been introduced to Brain Gym but never really gave it a good try, I'll look into it. As for allergies, he does not seem to have any enviromental ones (except for roaches, and I just saw one yesterday in our school room!), but we are waiting for results on food allergies. Maybe that's way there are days that are so completely off?

Thanks for sharing how it feels from the PANDAS point of view! I remember so clearly my son just sitting there in front of his Math and tears coming down his cheeks...so sad He just couldn't think. He wanted to, but the brain was just not responding. Homeschooling has been such a blessing in that sense. We can just change gears, go take a walk, or call it a day. It seems it just comes and goes, and it doesn't last that long (as in, it's not completely there 100% of the time for days on end). Another interesting thing we've been noticing with ds is that as compulsions decrease, obsessions become stronger. So it's like the battle is all in his head. We can't see tics or repetitive behaviors, but you can tell there is a battle going on "up there" It just makes me so sad for him to have to be dealing with this #@&^ at his age! He is so bright, imagine the things he could do if he didn't waste all that mental energy on "fog". If it is anxiety related, which I can totally see (i.e, he can't concentrate on his Math because he is worrying the pencil, which fell on the floor, might be contaminated), I think relaxation techniques (for us, "breathing counts" work pretty well) would help? Interested in what others have to say, I think even when we keep fighting and hoping for 100% recovery, we have to make the best of it until that glorious day!

That is awesome! And yes, I do sometimes read my old posts. Since I haven't been good at journaling symptoms, at least the forum is a way to back track and see where we've been, when we've had strep, etc, etc. It's my online journal

I'll be praying for your family! Just think of it as a good thing that your son is so bad right now, that way the doctor will not be able to simply dismiss this! So many times I go to the doctor with ds and report all the symptoms and he does not back me up at all! I feel like a complete idiot trying to make my case. At least you are not going to have that scenario! Hope the trip goes well, keep us posted.

We've had a similar experience at Labcorp. We've been there so many times we are on a first name basis with the technician. My husband took ds that day and offered to pay, but she didn't know how to "process" that, and she just did it, no charge. She was very nice, thanks Kelly Other than that, you could ask at your pediatrician's office. They do draws at our pediatrician's, and I think they would have helped if we asked. It's only 2 tubes, so it shouldn't be too much of a big deal. Good luck! Isabel