pixiesmommy

We do raw dairy- it is processed differently in the body, so that may be helpful for you to know also. We do a lot of local goat dairy as well, but we do try to keep ALL dairy to a minimum. our food blog- www.chickiepea.wordpress.com

To make a long story short: Pixie is switched to 250mg/Zithromax for 7 days, then I think we will do the 250mg/every other day dose. Dr did not want to test for m. pneumoniae but said the treatment is zith anyway, so that should knock it out if she has it. For me- changed me to Cipro and refilled my epi-pen prescription in case I'm allergic So I will try that this weekend when DH is here to rush me to the ER on the chance that I *am* allergic. Ugh.

I'm on my second course of Azith (I have one more day) and the rest of the family has finished two courses of Cefdinir and Pixie has been on the prophylactic Keflex (changed from Augmentin) for about a week. We all still have mild sore throats and nothing seems to have changed. I think I actually have a sinus infection now. We go back to the family dr tomorrow to see where we go from here. In possible related news, Pixie had a huge meltdown tonight, but we think it was sensory. She washed during her bath with my MIL's soap and got out of the tub red and itchy. She's having these big skin-related reactions to soaps lately that are new. She freaked out for awhile, then calmed down, then freaked again and had a non-verbal period where she kicked her legs before bed. DH finally got her calmed down by giving her some water and letting her chew gum, but she refused to put on a shirt to sleep in. I'm curious what the morning will bring and hope it was just a passing sensory overload rather than a true exacerbation.

We typed an overview with some key bulletpoints of what behaviors she had exhibited and then checked the ones she still had, then gave him what things we did have. I don't think he is going to refuse to see you or treat you if you don't have a binder of meticulous records. He's very understanding about the chaos that PANDAS children bring to the household. Don't panic, just put some thoughts/symptoms on paper so he can reference it at the appointment and then do the best you can with the other things. If in doubt, call his receptionist.

Pixie is 9 and sleeps 11 hours/night and sometimes more. She is still fatigued. The Nutritional Response Therapist we are seeing thinks it is because she is in fight or flight all the time (or "switched") which can be typical of Lyme too. Autoimmune things run in my family (my mother has Lupus and no one can agree on what my problem is!) and we both slept days and nights away as teenagers. We also both had a VERY hard time with mono as teenagers too. I don't know how it all relates, but there are some pieces of the puzzle that are common and then not enough pieces to quite make a picture, you know? I think something about the hormones of being a teen and the additional stress of school, peers, etc. probably wears you out to fatigue more easily anyway, but not saying that PANDAS, etc doesn't also fit into it. Hugs, Manda

Thank you for this. So true.

oops! it's fixed now

She was on once a day (morning) and that is all he believes is needed for protection. I don't think we have a personal theory BUT I know she was doing a lot better while on twice/day Augmentin (Dr K did allow that in the past for a month or so at a time on and off when other family members had colds, etc. but not as a constant dose.) It makes a huge difference in her behavior/ability to cope, etc. I'm a little nervous about the switching of abx, since I am allergic to everything. (I was on abx from about age 11 to 20 for chronic acute sinusitis.) Keflex was the first first abx I had a reaction to, and my mom is allergic to it as well. I can't do anything but sit back and try it though.

So to recap- Pixie started complaining of leg pain and was lethargic the last week of Feb, two weeks after having spent an afternoon with a friend who had "just recovered completely from stomach flu" according to the mom. I think the friend had strep. I actually was paranoid at the time, but it's a very good friend that Pixie only gets to see twice a year or so, and well, you know.... you can't keep them in a bubble, right?? Erg. So Pixie was the canary. Once I heard leg pain, we took her in to get swabbed. She was faintly positive on the rapid, and I and her lil sis went the next day. We were both positive, so the dr prescribed us all abx. Pixie got 10 days of Cefdinir with no supplemental prophylactic Augmentin, and DH and lil sis also got Cefdinir. I am allergic, so I got z-pack. The dr (and dr K) want us all to be re-cultured a month from onset, so we'll go in at the end of next week probably and get that taken care of. Symptoms as we were still on the treatment abx: -leg pain -muscle and joint pain all over -lethargy -dark circles under eyes -quicker to "melt down" and lose interest/patience or just not respond (emotional lability) -a little more resistant to hygiene issues, and discontinuation of wiping/flushing after urinating (only a few times) -eye tics (one day) -bed wetting (once) We are still seeing some pain/lethargy and a little bit of emotional lability. A tiny bit of OCD seems to be creeping in and out as well. We saw Dr K today and his main concern was that she managed to get break-through strep even on the Augmentin. It is his abx of choice, and his questions were if she missed a dose or had stomach upset (to the point she would have lost the protection of the abx) and she had neither. Thus, he is changing her to Keflex. That was pretty much the sum total of the meeting with him today, although he did give us some other info that isn't relevant to Pixie, but to PANDAS in general. -He is working with someone at Columbia U (I think- he talks fast!) who is the world's leading expert on strep, to try and figure out if PANDAS kids are reacting to a resistant strain, esp. with the breakthrough strep while on abx -He will be at the Autism One conference, which we knew about via this board of course -He will be meeting with 4 other drs (or maybe 4 including him- can't remember) in Washington DC in July at the Tourette's conference to lay ground diagnostic criteria for diagnosing PANDAS, which SHOULD mean that IVIG is going to be covered by insurance, as it will be more accepted because of this work (let's all hope!!) Having said all that, I'm going to bet that we aren't completely cleared of strep. I just have a feeling. But we'll soon find out! Sorry to those who have asked/posted and I haven't responded to. We're also putting our home on the market, so you can imagine what things are like here with a 2 yr old, a PANDAS dd, and a house that has to be show-perfect all the time, PLUS all of our food restrictions and constant cooking. I'm a little Okay, more than a little! HAHA! Oh, ETA- He was surprised that she was not on a 14 day dose of treatment abx, so he didn't feel like the strep had completely been treated either, but we might get a false negative, so we are doing 14 days of Augmentin twice/day and THEN starting the Keflex, just to be on the safe side.

will s/o so I don't hijack the thread

Oh I wish I had known you were meeting with him today; maybe we could have met. We were there at 10:30am ourselves for a follow-up since Pixie's had strep post-IVIG. The word he used for Pixie is "recovered!" I was shocked that he was using even THAT word for her already! I'm in Elgin, but we will be relocating in the next year (closer to Chicago) and as long as our recovery lasts, I am absolutely willing to help. I have a connection to a large downtown law firm that might like to have their name associated with fundraising too, which could be beneficial. I will PM you with my contact info also. -Manda

We've had strep for 7 days now and are all on abx (I think this was day 6 for Pixie) and she seems to be going into slight exacerbation. We wondered if we were imagining things, but last night she wet the bed, so apparently it is real. We emailed Dr K again this evening and are waiting to hear back from him. Strep is still going around (rampantly!!) in all the schools in our area, so I'm sure she's getting heavy exposure. We're holding our breath, but will keep you updated.

I would do a phone or email consult first.

Thanks SF Mom. I was actually just thinking I wonder if my "fibro" issues are actually me reacting to strep. In fact DH and I were talking about how the kids always start acting up when I am feeling my lowest. I think this may be the answer. I'm not sure how to convince a dr I need a month of azith. Did Dr K treat you as well? We have asked him to treat us as a precaution in the past and he would not. Unfortunately we can't afford to run titers on anyone right now, even a follow-up on Pixie, since the Cunningham study has lost funding.

We are 6 months post-IVIG now and have seen worlds of difference. I will post more and vote in the poll after we are finished with this bout of strep (our first post-IVIG) since I am not yet sure what this will bring on.

Not sure about allergy to clindamycin. He would probably extend my z-pack, but I am conflicted about that because of other reasons too. I think we will probably try to wait it out unless there is a blip on the radar, and do the one course then re-test in a month.

Rapid positive- Pixie's was barel visible, yr old's barely visible, and mine was so light I could not even see it, but the dr tilted it a certain way and I could BARELY make it out in that angle.

We simply follow the abx directions given to us from Dr K. I don't see how this should be altered, but it's also my (maybe incorrect) understanding that you can still get strep no matter what proph. abx you are on, the strep doesn't keep you from GETTING it, it just keeps you from the DAMAGE of it. Am I not understanding that correctly? We were told to give her the 500mg in the morning to best protect her during the day. Pixie is obviously our little strep detector, because her little sister and I went for strep tests today and guess what? Both positive. The doctor thinks mine may be lurking in sinuses instead of throat since I have my tonsils out and tend to have sinus probs. He also agree with me that I could very well be a carrier since I have frequent strep and have a history of it. The prob with this is that he says there are conflicting studies about possibility of eradicating strep in a carrier, AND the added fact that I am anaphylactic to nearly every abx out there. He put me on a z-pack and the rest of the family on cefdinir. He was iffy if the z-pack would get rid of mine, but wants us all back in 4 weeks to re-test anyway. Pixie complained of legs hurting and that was the big red flag that made me think she had strep, NOT the cold symptoms she has. She and I both have constant sore throat and intermittent sniffles, so that didn't call out to me as much as the leg pain. I don't think we have seen leg pain at ALL since IVIG back in September!!! Another thing is, now I'm wondering if I am also a detector, because my "Fibro" or whatever symptoms flared last week with swollen joints and the whole 9 yards. Hmmmmmm..... Anyway, it all hit her like a ton of bricks yesterday and then on the way home from the positive strep tests, the 2 yr old started screaming for water and to nurse because her throat hurt, and then she was totally down for the count once we got home. I got home and Pixiesdaddy (who didn't get tested but is getting treated anyway) was all red around the eyes and not feeling well. Two hours later, it hits me like a ton of bricks as I'm loading the dishwasher, with sore throat and chills. Here we thought maybe her cold just clued us in and she was at the tail end of strep, but I think now it was the other way around. She happened to have those symptoms aside from everything else and we are just BEGINNING our bout of strep for the family. Ugh!!!!

To teach a child to swallow a pill- start with something small (candy, choc chip or mini choc chip, etc) and give them something CRUNCHY and dry to eat- like crackers or potato chips, etc. and a glass of water. Have the child chew up the food until they are ready to swallow, then put the pill in the back of the mouth and swallow that bite (along with pill) with a big gulp of water. The chewed food will "soften" the feeling of it going down the throat, as well as help with reflexively wanting to swallow. For CAPSULES- you can do the same, OR if you want something a little more interesting for the science-y type kids: Put the capsule in the mouth and take a sip of water. Tilt the head FORWARD and the capsule will FLOAT up to the top of the mouthful of water (which will, leaning forward, be the back of the mouth near the throat) and swallow while leaning forward. ---- On a personal note, we were doing the liquid Augmentin and it tastes horrible unless they use a lot of additives, which can affect the brain, and we didn't want to do. We hid the liquid in smoothies for awhile, but then Pixie preferred the pills, which are white, so that was also preferable since there are no added colors and chemicals to worry about. There are also compounding pharmacies that will not add the chemicals, etc. For supplements, I have heard of putting them in small popsicles that you make at home. The coldness helps you taste the things less, plus it is like a special treat for some kids to have special popsicles a lot. Hope this helps!

Pixie's is immediate- within the hour, but residual effects for up to 3 weeks.

Done And posted to my FB page as well.

Yes, totally, EXCEPT she was put into quite a remission with IVIG ( within 6 weeks she was pretty much done with the "turning of the pages" and has not had a single tic since nor violent outburst beyond those 6 weeks, although we still do have separation anxiety.) We are also doing lots of other therapy with her including cranial sacral/chiro work, increased exercise, Nutrition Response Therapy, traditional talk therapy (though less frequently now, but was once/week) and major diet changes (removal of gluten and white sugar, decreased salicylates in a modified Feingold diet, increase in proteins), etc. We also did have SOME (but not all) periods where she could NOT remember the outburst and she did have occasions of what you may call cognitive disfunction- she would wake up and be non-verbal one day, wake up the next and not know how to zip a zipper, the next not know how to put on a shirt, etc etc. It seemed to be a different symptom of "forgetting" each day. She had extensive neuro-psych testing done and all was normal and well into the gifted range with no markers for Asperger's, etc. This was done while in mild exacerbation. EEGs have been many and all normal, but never an EEG during a rage (though some during exacerbation.) We have had EEGs ranging from a few minutes to 48 hours. MRI prior to onset of neuro symptoms, but during high fever after 1 week + (and strep) and all was normal at that point, according to the dr. CT normal (taken during first neuro exacerbation.) The worst tic we saw was a screaming tic that lasted about 3 solid hours, as far as vocal tics. She does have voice changes even without the associated rage accompanying, though it can and often does (did) coincide. Has never put holes in walls, but almost always directed at me (mom) with biting, hair pulling, kicking, throwing objects, trying to trip me, punch/slap/push me.

A friend (in real life) just told me to put my questions and problems out to the universe and feel confident that they would be answered if I truly believed they would be. You can say this sounds like a bunch of hooey (but what have I got to lose!?) but we did that today, DH and I and reflected on how puberty affects PANDAS kids and what else we could do, etc etc. and then I log on here tonight (which I rarely get to do anymore anyway) for whatever reason, and here is this beautiful gift of an answer waiting for me. It brought tears to my eyes. I am glad you survived. I am glad you are here to tell us that it IS possible and that things CAN be okay. I can't thank you enough for sharing this with us.

Thank you. That is a lot of information to digest. The yeast thing has been baffling me, obviously, since there are so many approaches that I guess I just need to find one and stick with that instead of floundering through it on my own.

My ped when I was little would diagnose a lot of things based on smell. My grandmother can smell and distinguish strep, flu, and sinus infections. She once told my mom I was going to get pneumonia if she didn't get me to a dr, and she was right on the money too- they said I had 'walking pneumonia' and I was hospitalized. My DH can smell on my breath when I am getting a sinus infection before I feel any symptoms whatsoever. So all of this to say, yes, I think it's very possible! And it sounds like you have a good dr if he is following instincts as well as what happens in a test tube! Yay!