matis_mom

Peglem, Wow, what are we up against here? It is so discouraging... with seven kids, how am I ever going to see the end of this??? The two daughters that tested positive had no symptoms whatsoever, now I'm really going to be paranoid, rats! Luckily, my PANDAS ds is away for the weekend. My husband was joking that maybe we should send him to spend a month in Arizona with his grandpa... Let me know how the new abxs work.

Make that 2... dd9 is also positive. They put them on Pen V Potasium? It was at CVS so that's the strongest they could prescribe. At least they didn't insist on Amox... I called the pediatrician to confirm, he said to go ahead and start, but that he thought it was a new infection (ie., he does not think that the Amox did not work). He said to try the Penicilin and then bring them in if they continue to have symptoms (well, neither one of them had any symptoms!), and we could try Keflex. So I'd appreciate any input from those of you who've had asymptomatic carriers.... Isabel

Hi all, Well, I guess I now have proof that Amoxicilin does not work for us! My dd7 had strep at the beginning of Nov. We caught it right away, and they gave her Amoxicilin for 10 days, which she took religiously. Following Buster's advice (thanks for the 'timeline') my husband took her in today (roughly a bit over 14 days after finishing the antibiotics) and she tested positive. They were going to give her Amoxicilin again, but luckily my husband called and I said to ask for Augmentin. They were questioning that but in the end agreed (this was just at the CVS minute clinic). My husband and other daughter are getting tested as well, since they were the only two that did not get sick or have any symptoms while we all got sick, better safe than sorry. I am so grateful to everyone in this forum! I never would have thought of testing to make sure the strep had been cleared... Just to think, this may be what keeps my dd7 from getting PANDAS herself!!! Thank you, thank you, thank you! Isabel

My son never had rages, but one of the red flags we picked up at the onset was that he would just snap (in a really out-of-character way) at his siblings if the was trying to concetrate and they were being loud/annoying. I never thought of the lights or the wireless connection, but since we are homeschooling it would be relatively simple to test out and see if there is any connection. I would think the perfume thing is probably more of an allergy. My daughter sometimes has the hardest time at church if we are sitting next to someone with a strong perfume, and found that lately I can't even wear perfume any more, it just makes my eyes itchy and I'm cranky the whole day. My PANDAS son is VERY sensitive to smells, in the sense that he can pick up and identify the slightest smell, but his always been like that, and it does not affect his behavior.

Faith, Sorry I never answered your question. The naturo suspects Lymes based on his systoms. I was reading through a list of Lymes symptoms and it is amazing how many of them coincide with PANDAS, especially if the child also has RF/RA (which my son does, lots of joint swelling and some joint pain). She also thinks because of the high strep, it could be the Lyme is just kind of latent right now. Lyme Disease is what she treats mostly, so maybe she is just seeing Lyme where there is none. But I have to give her credit because she picked up the strep/Pandas thing on the first visit just from taking ds history and doing an examination. Now we have further confirmation because we got our Cunningham results back (CamK 168), so I figure with such a clear and confirmed PANDAS diagnosis, we need to move ahead and address that. Yes, we could be unlucky enough to have Lyme too, but the antibiotics will be addressing both. In any case Dr. Latimer gave us the green light, and we started steroids, so far so good. About contacting her, I called Monday, spoke with the nurse. Sent an email on Tuesday. Called back Wednesday morning, referred to the email, the nurse pulled out the chart and passed it on to Dr. Latimer, and she emailed me by noon. I'll keep you all posted on how he does with the steroids. Thanks to all for the input and especially for the warning that we might see a flare up but if we stick with it we will see good results. He had dark circles under his eyes yesterday... I think I remember things being mentioned by other parents. It is just so helpful to know what to expect. Happy Thanksgiving! Isabel

My heart goes out to all of you who are dealing with the rages/bad attitude side of this problem. Do you know if your children have any yeast issues? I remember reading a post a while back about a lot of those symptoms improving once yeast was addressed. I may be wrong, but it's something to look into, especially if you've been on abx for a while. For some probiotics, kefir and a healthy diet its all it takes. My son was having urinary issues related to yeast, so we are having to keep him on Nystatin for now. If you search this forum for yeast / candida I think you'll find a threat with lots of good info on it... I have go make dinner now...

Could you all please post the contact information for Immunologist you have found helpful? It would be great if someone could start a thread on that. Isabel

They have no idea what's at stake for my daughter - we have not discussed anything with them - so unfortunately, I look like the bad guy right now. I think we are going to have to explain what's been going on. I am thankful the one cousin was positive today, but I think her brother is still coming as well as other cousins so I am not sure we are in the clear. Thanks for the support! . It's a personal decision, but once we knew what was going on, we were very open with all our family and friends. Once people know, it's much easier for them to understand the child's behavior, and your own obsession with not mixing with anyone who may have strep (or anything else!). Is it too late for a change of plans? Could someone else host so you guys can stay clear? I don't know how long you've been dealing with this, but for a lot of families it is so hard to clear everyone again... even if your PANDAS dd doesn't get it, someone else in your household could, and they you start all over again, not only trying to test/treat everyone, but also getting your daughter back from a possible exacerbation, not fun! Again, it's a personal decision you and your husband will have to make, but the stakes are pretty high. Maybe if the mom of the child that has strep could just get the brother tested that would give you some peace of mind. Hope it all works out! Isabel

That's a tough situation but are doing the right thing. Just be thankful that they confirmed strep before your daughter got exposed! Do the parents understand what's a stake for your daughter? I hope they do and don't judge you for protecting your daughter. Have a happy Thanksgiving! Isabel

Hats off to you for holding your ground like you did! I probably would have either quietly taken it and then have a meltdown in the car, or I would have totally lost it right there! From your second post I can see some red flags: his unwillingness to talk to other docs, the fact that YOU had to point out things he should have seen on your child's records, the fact he did not try to pursue the insurance but rather proposed doing it at his own facility under his own terms. To me that's a total conflict of interest. I wouldn't be going back to him either! That's what I liked about Dr. Latimer. She understands the problem, she is willing to do what needs to be done to get it covered by insurance, the treatment is done at a respectable hospital, and she is very willing to work with other doctors. When I mentioned that our pediatrician had totally missed this she said, "You can't blame her too much, this is all pretty new." She said she'd be happy to send the pediatrician a note so they could work together, which is great so if we need prescriptions filled or hit any bumps, they can help us out (a 5 minute drive and a $10 copay sounds good to me!). There are a couple of other younger doctors in that same practice who are familiar with Pandas (although I don't they are treating, at least they are familiar with prophylactic abxs and totally understood when I brought all the kids to get tested). Anyway, I am rambling on, my point is I am confident she puts the patient's best interest first, and that's the sign of a good doctor. I'd say at any rate, if you are going to spend $14K, you may as well fly somewhere to see a doctor who is knowledgeable about PANDAS, compasionate, and hopefully can get it covered by insurance! Hope you will find a way to get him treated soon!

So happy for you that you found a doctor who is willing to treat her! Zithromax has helped many PANDAS kids, hope it helps your daughter too! Isabel

They received ours Nov. 5, so you are probably looking at a good three weeks.

Thanks all for the replies and support. I heard back to Dr. Latimer, she is not concerned at all. She said it would be dangerous if there was an undetected infection that was not being treated, but since we are doing Augmentin there is no reason to worry. So, we just started today and he seems totally fine. I am at peace that we've made the right decision and getting ready to enjoy Thanksgiving with lots to be thankful for! God bless, Isabel

I think I will try it at dinner every day since lately almost every single night it takes him forever to go through his bathroom/bedtime routine. He keeps coming back with reasurrance questions, I'm kind of used to it by now, but sometimes it can be past 10pm before he finally settles down.

Oooh Kelly! Duh! I never thought of that... rats! Now I really am between a rock and a hard place. But I am so, so thankful you brought this up. He has been on antibiotics since July. But then again, the test that was run back then before antibiotics was negative. I just send both Dr. Latimer and Dr. Zackrison e-mails. Maybe all this means is that we just have to stay away from steroids, but it still leaves other options... Anyone else in this forum dealing with both? And yes please, I would like a recommendation for a LLMD. Isabel

Doug, Sorry you had to join us but welcome to the party! Further to Eamom's suggestions, I would say ask for a stool test (complete GI panel). My son did not have in his throat, but in his gut. Definitely start on antibiotics right away (if she's not on them already), and find a doctor with experience in PANDAS.

Wouldn't it be wonderful if they could do a telecast or something and all our pediatricians/immunologists/rheumathologists/etc (and, dare I say, confused husbands/relatives) could listen and see the light, and then everyone would be on the same page? My fantasies running away with me too... and while we are dreaming, they could publish something so that insurance would take that CamK number and cover all the IVIGs and PEXs we might ever need!

Thanks T.Mom, We have seen physical improvement on antibiotics, and some slow OCD improvement, but then he had an exacerbation when his sister had strep. We have just changed abx to high-dose Augmentin, and his anxiety/OCD seems to have gone UP a bit (maybe there is something else brewing in the house, I can't say it's just the change in abxs) We just got our CamK II results, it's 168, so it's definitely PANDAS, we don't need the steroid burst to confirm the diagnosis, although I would LOVE to see him 110% back. I am waiting for Dr. Latimer to call back and I'll let her make the call. She has copies of the Lyme test. I've heard sometimes she doesn't return calls right away, so I'll have to get on the phone tomorrow and chase down my answer. By then she will also have copies of the Cunningham test results, so she can factor that in as well. Maybe the safest option at this point is to give the Augmentin a few months, re-run the Lyme tests, and take it from there. Thanks for the support and guidance! Isabel

Just don't put them on the bottom rack with the utensils... I tried that once, had to get all new toothbrushes!

Same here, I guess before seeing the number in the back of my mind I held hope he was not "that bad," but now with a score of 168, there is no denying it. At least we know where we are standing and can move forward from here. Take courage and lets be thankful that research is being conducted and treatment is available. By the way, does anyone know what the end goal of the Cunningham research is? Are they just trying to have an accepted diagnostic tool, or are they looking into treatment too? Isabel

After another restless night, I was full of hope today, telling myself he'll just get better, it's not that bad. Just like my son, my anxiety creeps up after dark, so I e-mailed Kathy to ask if there was any chance we'd get results before the holiday, thinking I'd be lucky if I heard anything tomorrow. She e-mailed me right back, his score is 168. Just taking it in... Isabel

Falling Apart, I wonder was there anything at the house that threw her off. Are you guys all clear for strep/viruses? Hopefully this is just a bump along the road, hope things improve steadily! Isabel

I would do bleach/water too, just make sure you vent the house. Don't forget the doorknobs, light switches, refridgerator handles, etc. I sent my kids around with Clorox wipes to get those, and I did the bathrooms... I was going to do the car too, but we run out of steam. I did get a steam mop for the tile/laminate floors. I wonder does anyone know how long the strep bacteria survives on the different surfaces?

Tell me about it, I did not get any sleep last night! As far as abx, we have tried Amoxicillin, Cefuroxine, Vancomycin, and now we are trying Augmentin... so far no adverse reactions to any of them, thank goodness! Still that leaves Zithromax, Keflex, and I'm sure there's others... How long do you give a specific abx before asking for a change/increase in dosage? At this point I have accepted the trial-an-error route for finding the right one, I just wonder how long it takes to tell if it's doing the trick or not. Keep thinking about it and can't bring myself to try the steroids... the list of side effects goes on an on, even if he did not have Lymes. Also, he is 12 right now, and on the short side for his age. This is right the age when his brother had his growth spurt, I don't want to sabbotage that. Also, since his symptoms are not so severe, I feel God is giving us some time to think about this. On top of everything, the holidays are coming and I'm due in January, so I feel this is not the time to rock the boat. These last couple of days I've seen him a lot happier, still anxiety at night, but much more lively during the day... I can't tell if it's the antibiotic working better, or the yeast creeping back up, but it's good to see him laugh and fool around with his siblings more. Hopefully in a few more months we will have found the right antibiotic, and have a better idea of where we are standing re: Lymes. In the meantime, I might trying finding a good immunologist. Does anyone have a recommendation for someone in the Northern Virginia area? Thanks all for your sympathy! Isabel

They tested the blood. It was one of those tests not covered by insurance that need to be sent to a special lab, but I can't remember the name of the lab. I can look it up if you want to look into it.