pixiesmommy

Looks like we may be taken on by an infectious disease dr here as well as the LLMD. He's waiting for our history from Dr K and our family Dr before he will make an appt with us, but I'm definitely going to bring up Lyme as well as try to pick his brain for who may be our strep carrier.

Popping- I have bone spurs and pop/have pain like crazy and chiropractic helps me. I don't know if your insurance would cover it, but it helps me to go every week for about 3 weeks if I have just started going (I have taken breaks before and regretted it!) and then every 3-4 weeks. The lunch- I'm so proud of you for packing your lunch!!! Okay, now for the bad news and nit-picky stuff... that was A LOT of sugar. It may have been the wheat in the almonds (they often dust them with things so they don't stick together. I have good luck buying from a bulk bin, if your store has one...) BUT you probably get sleepy from the sugar crash too. A cheese stick- sugar from the dairy a fruit cup- sugar from the fruit some almonds- good protein!! (leaving aside the possible cross-contamination here!) some cherry tomatoes- not bad, some sugar but minimal one little EnjoyLife gluten-free chocolate chip cookie- sugar!!! If you want to be alert after you eat, you need to feed your BRAIN. You want LOADS of protein and LOADS of fat. I know, fat??? YES!!! Sugar is going to do so many bad things to your body right now. You are wearing out your adrenal glands by eating it and all of your organs are getting just exhausted. If you have a *little* with protein, you slow that effect down a lot and can process it better. Here are some ideas (I think I asked before, are you veg? I'm assuming so, so these should work anyway...) -Nuts are great for quick protein but you want to make sure you aren't stuffing yourself with lots of Omega 6's and no Omega 3's. Omega 3's are ANTI-inflammatory and 6's are INFLAMMATORY. You definitely want more 3's!! Try for seeds too- flax, pumpkin, sunflower. Walnuts have some 3's too, so those are good. Beans/lentils: Lentils cook up pretty quickly and you can spice them however you want (make sure your spices are GF!) Eggs- someone mentioned this already, but especially if they are free-range, then you are getting lots of good 3's here Dairy- ehhhhh... grass-fed is best, but expensive and hard to come by unless you happen to have a really cool farmer's market- just ask questions. Raw/grass-fed is best, but again, harder to come by and illegal in some states. Use it minimally because it does have a lot of sugar. Plain yogurt is best because it has some of the sugars "digested" by the culturing. I know, I know.. this is complicated!! At least try for organic and don't eat loads of dairy is the main point! Go easy on the fruits and heavy on the leafy greans! Fats: These are ones that are NOT going to raise your cholesterol or make you gain weight, etc. They are saturated fats from nature, as nature intended. This is all politically incorrect nutrition -Organic Extra Virgin Coconut oil is the easiest one and for the money goes the furthest, IMO. We eat it with a spoon here, put it into smoothies, or grind up some nuts with it, etc. It's pretty melty, so beware! But you can do something like stir some into applesauce or whatever for a quick dose of fat to feed your brain. (I buy mine online at vitacost.com) -Grass-fed butter -Extra virgin olive oil (but not for cooking, just cold!) -Flax oil Those are a few. You absolutely want some fat in your lunch along with the protein! Here is an example of what I would pack for Pixie for lunch, just to give you an idea: Lunch 1: -filtered water to drink -lentils w/chili powder seasoning, drizzled heavily with olive oil -a few rice chips/crackers and raw broccoli w/hummus for dipping -one or two apple slices w/nut butter *starch from the rice and the apple are plenty of sugar Lunch 2: -organic coconut water (this might be hard to find but good for hydration!!) -handful of plain pecans or walnuts -a few cubes of cheese -carrot sticks -skewer of lima beans *this one is more sugar-heavy- starch from limas, sugar from carrots and cheese I hope this helps! I tried not to be TOO overwhelming. It's like a boot-camp, really HAHA! Too bad you aren't closer so I could cook for you. Maybe if you do some prep like chopping up raw veggies one night, sorting out nuts into baggies another night, etc. then it would not be so hard to grab something. I know this is much easier said that done though. ((((hugs)))))

Bumping this up again for newbies. Pixie hasn't been to your site in awhile. I will remind her this weekend

Thank you! This is what I was wanting to know. Also thank you to everyone who responded privately.

I absolutely get it, and I will tell you why. First of all, I am no math whiz, but I can memorize things (and so can Pixie) that will make your eyes spin. I was great with doing Shakespeare in high-school and placed in a lot of competitions just for the sheer ability to memorize (too bad I could not also simultaneously inject the proper emotion.) Also making me very popular (I struggled with mono in HS and was barely ever present and couldn't lift a textbook- wayyy fun!) So, like you, I could memorize things but not actually put them into application a lot of times. For me, it was geometry and not algebra. I think I have some dysgraphia that was never diagnosed, actually. I knew all the theorems, etc, but unfortunately it was algebra that I had to pass to graduate, and not geometry!! I failed algebra 3 times and then 2 more times in community college, but had 2 perfect A+ years of geometry. People thought I had given up, but that was NOT the case. There are things I just can't wrap my head around no matter how I try, and man is that frustrating! because you know on some level they are simple, but you just can't beat it into your brain!! With Pixie, we started seeing this as early as first grade. She would come home with the regular 2+2 problems and then there would be a challenge sheet with word problems or more advanced math, sometimes even multiplication... and she would get the easy problems (the REQUIRED ones for a grade) totally wrong and struggle with them to the point of tears, but then sit by herself and breeze through the challenge problems. She STILL does this. I actually had a teacher tell me that she was going to count OFF if she did the challenge problems because she was wanting to punish her for using her energy on those instead of the demonstrative ones for a grade. Of course, this is also the teacher that told me to spank her because she was having visual disturbances (that the teacher didn't believe) and that she kicked her son out and made him live in the garage one summer. But, I digress... I think the thing about pacing when you got dumped sounds like a reasonable response, actually! Maybe it is because it sounds like something I would do, but it sounds like something ANYONE might do if they were really upset. I think maybe you are more "normal" than you give yourself credit for. ((hugs)) Thank you for sharing this. Manda

I have some Olive Leaf that I have taken for me. Not sure if it is strong enough- it's a liquid for Barlean's and I do feel better when I remember to take it (must get better at remembering supplements for MYSELF!) I have not tried the oil of oregano. Xylitol.... sigh... we do the Zellies gum for Pixie daily- it is part of her routine, but I have a real problem with the fact that it is a corn derivative, for oh so many reasons. First of all, I think that corn actually causes a flare in my symptoms. Secondly, there is the whole monoculture crop/GMO thing that I hate to contribute to. So, as far as the crystals, I am really torn. We do have some and I do use them on occasion. I can't stomach making it an everyday thing though... at least not at this point. Pimples- have those!!! I was just talking about how weird it is. They are tiny tiny little whiteheads and only in the mornings. They are painful too, like cystic acne is, but barely able to be seen. I will keep an eye on this now that you mentioned it and see if it is related. I very rarely get it, so I would not be shocked if it is related somehow. Definitely a lot to take in!

Has anyone had IGENEX lyme testing and had it turn out negative? I ask because we have had Western Blot and they were negative (though it has been several years now.) Just curious. I am going to see a Lyme specialist for myself and Pixie in a couple of weeks (starting with me) and they do the IGENEX. Thanks! Manda

We all have perfect throats- no redness, no swelling. Without Pixie as our canary, I would never suspect a thing was wrong. FWIW, when they DO put me on abx, they always do Azith, because I am allergic to almost everything else, and I always feel FANTASTIC while on the abx. I don't have joint pain or swelling, have more energy, etc etc. Then they take me off of them and I crash and burn.

I *want* to say yes, but I actually have no idea. That was her explanation. Buuuuut... I have knee pain this time (like Pixie) and major swelling of my joints and hands, especially on waking. I suppose that could just be my reaction since my immune system kicked in, but I don't think I have that great of an immune system, considering I get every little thing that gets passed around. Next up: Infectious diseases dr Lyme dr and our NRT is talking to her teacher/mentor to see if there is anything they can do/figure out on their end of things I also bought a jar of manuka honey!

Aww, thank you! Well, the 72 hr culture tests came back- they didn't do Dan's since he was pos on rapid---- ALL NEGATIVE. They referred us out to an infectious disease doctor. The nurse's explanation for my ASO titers being high was that my body was making it's own immunity to the infection from Dan, and said that does not mean I am a carrier. I feel like I am spinning in the same circles over and over.... and none of it makes any sense.

For boiling eggs- you need older eggs, so if you are trying to boil ones from the farmer's market, they are probably "too fresh"- believe it or not! Here is a link to our lunchbox ideas for you: http://chickiepea.wordpress.com/2010/08/23/lunchbox-packing-time/ Here is a link to some containers for salad dressing: http://www.reuseit.com/store/humangear-gotoob-mini-reusable-container-p-2259.html Are you vegetarian too? Sorry, I can't remember.

We give an adult Florastor capsule in the morning w/her abx, and then a Pearl probiotic at night. She drinks smoothies w/homemade raw-milk kefir and raw-milk yogurt when I make it (I try to alternate every -other-week.) I was told by a chiro that I trust that we should be alternating the kinds of probiotics too, so I need to get some different strains to add in, I think.

This really did come only with time for us. There were times when we just held her down and did it, if it was really bad. Sometimes music or counting would help... like it would distract her AND it would feel like there was an end in sight to the dreaded activity. These are some things that sometimes worked: -Standing with her to do the activity (getting in shower with her, standing and brushing teeth with her, etc.) -Going to a salon and getting it done there instead (have no idea why- maybe because she was sure the water would not get in her eyes) -Having her lay on the kitchen counter and play "salon" at home. Roll towel for under neck to cushion it and tilt head back into sink to wash. -Various toothbrushes - electric, flashing, small, large, soft, hard, etc. Even baby rubbery ones. Various toothpastes or none at all. There are ayurvedic ones and homeopathic ones that don't have all the chemicals too. There is also tooth soap which could be fun. Some tooth soaps/pastes foam more than others, etc. -Rewards, though sometimes this set us up for disaster because she could NOT do the task but would get upset that she coudl not have the reward -PECS (you can google this if you don't know of them) they are little pictures/icons used for nonverbal people to show emotions or to show what happens next in the day like on a chart or you can velcro them on a vest, etc. I think it helped her feel in control if she could choose when to put the tooth-brushing and shower (by using the PECS) in her days. -Playing music or singing, or parent/sibling doing something funny/silly, etc while she cooperates with hygiene. I would often sing stupid made-up songs or make weird faces in the mirror, or even draw on the mirror with soap or lipstick or whatever while she brushed teeth if she would do it. Whatever works!!! Hope some of this helps. I agree with getting an OT. I have heard that Easter Seals can help with finding doctors and they offer free therapy too, but I have no personal experience with them.

I have a Lyme specialist appointment in 2 weeks for me. We apparently only have 1 lyme dr in the state, so there is something of a wait. I know she definitely reacts to strep, and while I am not ruling out Lyme without investigation, I'm not putting all my eggs in the Lyme basket just yet either, so to speak But thank you for mentioning that it can also be related. I do have some pain in the soles of my own feet and now I know to bring this up at that appointment as well.

I did a post on lunchbox items on the blog. I know we have more food restrictions than you and we eat meat, but I think a lot of them would still apply. Do you like salads? A salad would be pretty easy to prep at the beginning of the week and portion out.

This has probably been covered somewhere already, but so many of us mention it, I wondered what kind of response I would get. For Pixie, leg pain ALWAYS means strep. I wish I had known this earlier, but even when it was bad enough to warrant a doctor's visit (and I thought her behavior was bad because she was in pain-- pre-PANDAS dx, of course), they just dismissed it as growing pains or wanting attention. Who else gets leg pain with positive strep?

I will try to post more later, but seeing a PANDAS specialist is probably the only way to get IVIG if no other doctors are taking you seriously. We had a very dire situation with my daughter and no one would take us seriously until we found Dr.K.

My daughter likely had strep for the first time at about 9 days old, and was not sudden onset. She started ticcing at around age 6.5-7 yrs and then raging soon thereafter and we managed to get our FIRST diagnoses of Tourette's, OCD, and ADD all at once at this time. I had tried to get her diagnosed with things previously (her entire life) but to no avail. About 1-1.5 years after the really bad rages began, we found this board and a few months later found Dr. K. We were diagnosed using a steroid burst and observation and then we went straight for the IVIG because her tics and rages were out of control. The tics were pretty much eliminated within the first week post-IVIG, but I am told that they are usually the LAST to go. She still has minor eye-blink and finger-flick from time to time, but the huge muscle head-toss/shoulder-shrug and bark-cough thing are gone. She has been on prophylactic abx for a year and will continue through Dec, but we are also currently pursuing Lyme to rule that out. I would see one of the big PANDAS drs and try to get IVIG or PEX. According to some on the board and Dr K (in Chicago) PEX is usually better for tics and IVIG for the behavioral symptoms of PANDAS.

Thanks for that info. I had seen those stats, but had forgotten. Pixie never had elevated ASO titers either. I guess we are still just waiting and watching. Dan is on Augmentin for 14 days, but we have done that time and again. I'm anxious to get to the Lyme appointment and hope that will be a huge step in the right direction for the entire family. She did have a few behavioral things today, but nothing major and I'm hoping it's just exhaustion and not really a "reaction." In other news, if anyone is interested in seeing, I finally (a year later!) uploaded the pics I took from our IVIG and put them into a slide-show. I had blogged a few days ago about our one year IVIG anniversary, but had forgotten about the photos and just added them tonight. They are very blurry, but you can get the general feel/gist of it. It was a really happy and peaceful two days for us. Pixie was able to understand that this was meant to help her and she had been begging us for help, so we were all hopeful and relieved that we were finally getting treated. You can see/read it here: http://chickiepea.wordpress.com/2010/09/11/one-year-ago-today/

We had a pretty dramatic decrease in symptoms and have enjoyed a one-year remission from the major symptoms (though have still gotten repeated strep and deal with mostly exhaustion.) We did IVIG w/Dr K in Chicago and did the high 2-day dose and prophylactic abx afterward (and will continue at least until the end of this year.) My best advice is to take your own meds with you when you go- dye free benadryl and motrin, as they may not have these at the IVIG center. You can ask ahead of time if it is okay to dose him before you get there. Keeping him hydrated well in advance (at least a week) of the IVIG and thereafter is helpful with the side effects. We actually did end up with the aseptic meningitis but it was easily treated in the ER with IV fluids under the direction of Dr K via phone conference with the ER docs. It can cause immediate upset tummy as well, so you probably want to take some wipes, a change of clothing, and a bowl or pail with you while riding in the car (my daughter had some nausea during IVIG but did not vomit- they decreased the flow and she was fine.) We had vomiting late at night after the second dose, but the car ride did make her queasy. There is a whole kit you can order online via Baxter that has a pretend IVIG with a little teddy bear, etc. We visited a bookstore beforehand and stocked up on a few simple sticker books and things so we could more easily pass the time. The center we used had DVD players too, which was nice. My daughter napped through most of it. The hardest part was getting the IV in (because of fear) but then it was a breeze. The second day was much easier because she knew what to expect. You can search my name here and see our history and read the blog (in my signature) for more info on our one-year update post-IVIG if you like. I'm happy to answer any questions too.

I have so much to say to this that it may take me several posts to get it all out, as it is getting late here. First of all, I don't think there is a simple solution to PANDAS or Tourette's. The "benefit" of having a PANDAS diagnosis in a case like this (Jaylen's, as you describe, since I did not see the show-- we are TV-free...) is that if it IS PANDAS and abx or IVIG/PEX can help, then that is something of a "cure" or "treatment" that you may not otherwise have had access to, had you only had the Tourette's diagnosis. Having said that (and hopefully still making sense...), let me tell you a little bit about my story. I am certainly NOT pro-PANDAS (as in pushing it down your throat!) so try to hear me out. My daughter was a very healthy little girl. She didn't ever catch colds, etc in pre-school or even flu when family around her would be suffering. She was also completely vaxed (though full term, so not excessively vaxed.) She had her first fever at about 9 days old or so. I took her in to the dr and they told me it was a virus and not to worry. From that point on, she had sleep disturbances (at that age it translates to: never slept.) We would take shifts with her (my mom and I- I was a single parent at the time) and my mom is a nurse. She said she had never seen anything like it. It was like a switch was flipped, but we attributed it to colic, etc- because how do you know a child's personality has changed at that young of an age? But it certainly seemed like it! She nursed until 3.5 years when she self-weaned. I tried to do things a "better" way and gave her soy milk instead of cow, etc. I tried to be very diligent in how I treated her health, and she seemed to be healthy. We would get flu and she would not get it. At preschool at ages 3 and 4, she would not get strep or flu, or hand/foot/mouth, etc. as it went around. Never so much as a sniffle hardly. She would get a tummy upset about once a year maybe. But weirdly enough, she would get FEVER for sometimes days on end and I got to where I could track them. March and September. The September one was the first to stand out because it always coincided with her birthday. I knew the other was in spring, but I had not specifically ever tracked that one until she started school, and then it coincided with spring break and was easier to remember. I know now that those are times when strep is most rampant. She had a few cultures as she was getting fevers more frequently, around ages 4-5, but with NO other symptoms. I finally begged my pediatrician to refer us to an allergist. The allergist was baffled and referred us to an ENT, saying that she thought maybe the tonsils were harboring allergens. We removed her tonsils at age 5.5 and the ENT came storming out into the waiting room and accosted me for "not ever treating this child for strep! She had the most pitted, infected and scarred tonsils I have ever seen!" She had tested REPEATEDLY negative for strep- never come up positive once!- when they tested her for it in the ped office. They hardly ever tested because she had no sore throat and it was never red. We got a short period of relief after the tonsils were removed that June. In September, instead of a long fever, she raged and started biting. I had changed our diet so that it was dye-free at this point because I thought the dyes were affecting her aggression. She got some relief, but it would wax and wane. She started sniffing and I thought that allergies must still be at the root of it after all (this was at age 6 to 6.5) At around age 7 she started eye-blinking and would have some periods of bed-wetting that I thought were UTIs. Then about a week after the bed-wetting episodes, she would have a fever again and my new ped would test for strep and it would come up positive but only after she let it sit and culture overnight. The bed-wetting would wax and wane, but the sniffing and eye-blinking never did. She was prescribed allergy meds for the sniffing and eye-drops for the blinking, but it only worsened. By age 8, we knew the blinking was a tic. By 8.5, she developed a constant finger-flicking motion as well as kept the other tics. Sometimes she would have a day where the sniffing would disappear, but it was rare. She was diagnosed with Tourette's at this point (and her aggression had increased and she was put into an outpatient psych program for 11 days.) We ruled out seizures with 3 neurologists. We had Asperger's testing done with a ped neuro-psychologist. We finally went on meds, not for the tics but for her depression, which was diagnosed as co-morbid to the Tourette's (along with ADD and SPD.) The meds did nothing to help. We changed meds (from Zoloft to Abilify) and the tics increased to the point of basically writhing. She had a head-toss/sniff/cough combo, a huge shoulder shrug, would hold her arms out strangely and sometimes flap her hands, finger-flicking on both hands, odd mouth movements, and of course the eye-blink (and now an eye-rub since it bothered her.) She has rarely had a positive strep test unless it is a culture- and even then, it is hard to catch her with strep. She reacts with some knee pain now but usually just fever and ramping up of tics and some behavioral issues. She rarely has a sore throat or gets sick in that way. Her ASOs and Anti-Dnase B titers, mycoplasma, and Lyme tests (done with an infectious disease dr) all came back totally normal. (We still have to do the Igenex to rule out Lyme, but the standard testing was totally normal on all counts. According to medical science, this is a healthy child who "just" has Tourette's. A year ago, in Sept of 09 when she was 9 yrs old, we finally decided that it MIGHT be PANDAS, though we were unsure. It looked like it was going to be something psychiatric in conjunction with Tourette's, but we had nothing to lose since she was at the point where we might have to institutionalize her for her aggression. She was diagnosed with a steroid burst and observation. We then did IVIG. Antibiotics are used as a prophylactic, but they do nothing to decrease her tics. She still gets strep (doesn't test positive, but again, tics and behaviors increase and the family will test positive!) Her only tic now is an occasional eye tic and finger flick. IVIG eliminated her big motor tics within 3 days!!!! We keep her healthy by doing talk therapy, NRT, chiropractic, and a very strict diet and strict bedtime. We also have the 40 supplement thing going on at my house I am not saying your DS has PANDAS- I have no idea; we are just finding our way. And KUDOS KUDOS KUDOS to you for going the natural path!!! Meds and the chemicals/toxins they contain are scary as heck! We have had extremely great results for our health, collectively, as a family through homeopathic remedies and dietary changes. My question for you, if you have read this far!, is have you done the steroid burst and seen a PANDAS expert to rule it out that way? IVIG was the best thing we ever did, and honestly we did not do it to address her tics at all! It was a side-benefit to us! Even if you doubt PANDAS (and I surely did, and we still do sometimes as we think... maybe it could be Lyme or this or that...), there are still some paths you could investigate. I'm sorry this was so long-winded, but there was so much about your posts that jumped out at me and reminded me of my daughter. I would love to hear more of your story and do hope you will share with us. Regardless or whether they are the same or different, TS and PANDAS certainly do share similarities. I also would love to hear more about the naturopathic things you do. Please visit the blog we keep on our diet (link in my signature.) I always love to learn more about diet and alternative methods of getting us healthier. I'm also sorry you felt offended when you came here. I can tell you that I am absolutely sure it was no one's intention. I read the posts before I got to yours and didn't detect any "tone" that you may have mis-read. I completely understand (and I think I speak for all of us here) the defensive feeling you get when someone assumes you haven't covered all of your bases in taking care of your child! We get judged daily and bullied, even as adults. We ARE in this together, same diagnoses or not! Many hugs to you for coming out publicly with your story Manda

Re: the changes post IVIG. This is what she was like immediately pre-IVIG: She was to the point that we were talking about having her committed to an inpatient/institutional situation. She was mostly non-verbal, had a few hallucinations, was aggressive/violent almost every waking moment- biting, kicking, hitting, screaming. Tics were so bad she was literally writhing in the floor for the worst of them. Her chorea or "posturing" was to "sit" on her head- she would bury her head in the crease of the couch if you tried to speak with her. She would zone out with enlarged pupils for hours sometimes, but no signs of seizure on any tests. She was unable to leave the house, let alone attend school. We would carry her (at age 9) kicking and screaming through the grocery store to get food. It took 2 adults with her at all times, and sometimes more to restrain her. We ended up hiring caregivers that worked with severely disabled/autistic children and even they could not handle her. She was wetting herself several times a day and almost every night and refused to wipe. The OCD was so bad that she had to have the windows open in the dead of winter (-30*F with windchill!!) and certain doors open, certain doors closed, etc. She had routines for EVERYTHING- toothbrushing was horrendous because when we could get through her sensory issues to get her to do that or shower (or sometimes even convince her to sit on the toilet), we would have to count to a certain number or brush our own teeth alongside her, or sing, etc. etc. For showering, we would have to force her into the shower and wash her ourselves. She had a lot of food preferences/avoidances and we were starting to genuinely worry that she was headed toward anorexia/an eating disorder. Visual disturbances were frequent and unexplained too. She would "forget" how to do things and each day was a different thing- ie: putting on a shirt, holding a fork, etc. She had never learned to ride a bike, use a broom to sweep, or tie her shoes. She was unaware of the feelings of hunger or thirst and would refuse to drink, especially. She had sensory issues so badly that she did not process pain almost ever- even extreme pain, but would respond instead to the blood, etc. Immediately after IVIG we saw her tics vanish almost overnight, but other symptoms ramp up until about 5 weeks post-IVIG when the violence/aggression left almost overnight and everything else slowly began to decrease. We are now 1 year post-IVIG and she has the symptoms remaining that I listed in an above response. Okay, that makes sense now that I can wrap my head around it- Dan is carrying the strep but not making an immune response to it. Now. How about me? I am not showing positive on the rapid test, but making a response. If we are to assume that my 72 hr culture also comes back negative, does that indicate that I have an autoimmune response, since most PANDAS kids can come back negative but have high ASO? Hmmmm. I will definitely ask the Lyme dr about all of it. They sent me an amazing comprehensive form to fill out prior to the appointment too. BTW- Thank you all for welcoming me/us back- I know we don't contribute much here when we aren't in crisis. We definitely own ACN and the community since it is where we first heard about PANDAS. Also, I have a one-year update posted to our blog (linked in my signature) on Pixie and IVIG if you would like to read more about the differences in where we are vs. where we were.

Dr K emailed but said only that MY titers are high and I should be treated. I'm the one in the household with the FEWEST symptoms. He didn't elaborate or answer our questions about what this means in terms of carrier/infection, etc. He did say we can call in the morning for numbers. So: Dan- positive immediately on rapid strep, but apparently normal titers (symptoms of virus- nasal drainage, etc.) Me- negative rapid strep, elevated titers Pixie- leg pain, sore throat, normal everything Peri- (non PANDAS dd)- no strep-like symptoms, but some behavioral stuff (mild), some stomach upset that may or may not be related, not sleeping

To further any confusion today- Pixie has been complaining on and off with mild (VERY mild, she says) knee pain for a week or so. Duhhhh. I thought strep, but we saw no change in her behavior this time, so we waited it out. She woke this morning VERY lethargic with extreme throat pain and leg pain, so we all went in for the family special. Dan came back positive IMMEDIATELY on the rapid, but none of the rest of us showed positive for the 15 minutes or so that they let them sit (they usually let them sit for hours, but we saw the PA today and she tossed them when she came into the room and saw the results.) So, the other 3 of us got a second swab (they won't do them together anymore- argghhhh!) to be sent off to the lab for the 72 hours. I got an appointment for MYSELF w/a Lyme specialist for 2 weeks from now. I can't WAIT! They are an integrative medicine office, so that should be interesting. The forms they emailed me to fill out are freaking fantastic already- they ask ALLLLL sorts of things about my history. This should be one long appointment. They said to expect to be there at LEAST an hour for the first visit. Woo hoo! So hopeful! Emailed Dr K about the titers this evening. HOPE to hear back tomorrow, so we don't have to wait the weekend. Sigh.

I don't think it's inappropriate at all, especially if you weaned at 16 months. I'm sure there is some memory/comfort associated and that is not a bad thing. I can see how it could be a fixation, but inappropriate for a 3 yr old- no way! My daughter is almost 3 and still nurses quite frequently. Pixie nursed until she was 3.5 yrs and then self-weaned. America weans far earlier than most countries. I agree with whomever said that the child has no idea at this age that breasts are sexual. That being said, and hopefully not sounding harsh!, if it is bothersome to you, then it is absolutely appropriate to set those limits and say that it is a body part (just like any other) that belongs to you and that you have control over whether or not it should be touched. ETA- I babysat a very "neuro-typical" 4 yr old who had been nursed briefly as a baby and he would often reach hands/arms down his moms shirt and eventually mine. It's warm, soft and squishy down there, after all! LOL