pixiesmommy

Thanks! Yes, the chickiepea blog has our photos. The pecanbread site is not mine, but very informative. I'm in Elgin, IL. Puffed rice would include rice cereal, rice cakes, etc. Any "puffed" grain is problematic due to the way it is treated to change it to do so. This is according to the Nourishing Traditions book by Sally Fallon, which is based on the Weston A Price studies (which were about what indigenous cultures had the strongest teeth and bones and most beautiful bone structure and how that is based on what they eat.) Our diet is a combo of the SCD diet, Feingold, and Nourishing Traditions. I'm also reading about eating raw, as that seems to help with some things as well. As I learn more, I will blog about that too.

I will try to hit the highlights Soy- we try to avoid it because of the pseudo-estrogens, but do use it occasionally. We do make sure we only use organic due to the GMO issues. Lupus- my mom is positive, but I have tested negative. I have been classified as having "Fibromyalgia" since they can't figure it out. I have a second opinion Rheum appt coming up next week for myself. On diet issues- we have not done specific tests, but I will look into the Great Plains ones. We *have* done the typical scratch tests and blood tests through an allergist and those were all negative, and we did MSA testing which showed artificial ingredients. She (and I) seemed to respond well to a low-salicylate diet www.Feingold.org and we have been using those outlines for 2 years now, but know specifically that apples have been an issue. She has also had 2 celiac panels done (blood work only) and one had one positive marker, but the second more extensive one was negative all around. All of her recent post-IVIG blood work for other underlying immuno issues was normal, even the titers (which mean her vaccines really did "take.") We have been grain/gluten-free, sugar-free, and light on the dairy (all local, raw, grass-fed) for a little over a week now and I feel really good. I've had one headache, but it was right after some cheese and nuts, which could have been a trigger or it may have been sinus-related since I think I'm getting a little cold. Pixie has had 2 headaches, but each after refusing protein and eating rice/potatoes. She is really adapting well to the diet and we haven't heard a single complaint!! I think she is learning her lesson and is asking to be sure she is getting enough protein these days, which is AWESOME. Her behavior is even better and we are seeing her compassion really shine towards her little sister. She has not only lost her butterfly rash, as have I, but she has also lost the dark circles under her eyes. The biggest change we have seen is that she is needing about 2 hours less sleep! She is actually waking earlier on her own, refreshed and energetic, in a good mood. I'm really excited to see how much she improves in the coming weeks, as it is supposed to take at least a month to really rid yourself of the toxins from allergens/sensitivities, AND to continue in the hopes that if there really is a yeast problem that we are confronting that as well. It's very exciting and I'm enjoying talking to new people and learning new ways to cook and eat too! www.chickiepea.wordpress.com

A friend sent me this and I wanted to pass it along in case it had not been posted here yet: https://www1.gotomeeting.com/register/774906745

We soak ours in hydrogen peroxide about every other day and change toothbrushes once a month, more if we are sick or suspect someone is sick/has strep.

We were told no corn, rice, or potatoes to the best extent we can. We are using them in moderation for sure! I know corn can harbor mold and the starches in rice and potatoes feed the yeast b/c they are essentially sugars. Here is the SCD list of foods, if you are interested (though this is not exactly what we are doing, but VERY similar!) http://pecanbread.com/p/legal_illegal_a-c.htm Can he have nuts/seeds? We are soaking and roasting nuts/seeds(per the cookbook Nourishing Traditions) and seasoning them with various spices, or just salt and using those for snacks. You can also crisp up grated cheese into "crackers" if you are on dairy, or kale, in the oven, for a crunchy snack. We try to avoid puffed rice (it's been proven very toxic for animals) but we do use rice cakes occasionally- you can toast them in the oven and use spreads on them like butter, ghee, or nut-butter. Check out my blog if you haven't already! I checked out a HUGE stack of cookbooks from the library and we are modifying recipes and eating really well! We are on Day 3 and already I feel better!! Pixie's face is not hot and red and I don't have the butterfly rash and "flushed" feeling I get, so something is definitely happening!!

We are starting a new diet for Pixie, starting tomorrow (gulp! ) Recommended by her Nutrition Response Therapist. NO grains or wheat. We can do rice and corn if we MUST, but she is responding to yeast/mold/fungus, so eliminating these is supposed to also help with those issues. We can do nuts except almonds (b/c of salicylates) and peanuts and cashews both harbor mold. No white sugar, honey, etc. She recommended Agave, but I read that that is really awful for the liver and processed like crazy, which makes it essentially HFCS, so we will stick with xylitol in TINY amounts if needed. I'm also not completely adverse to honey since it's natural, but I know that we are trying not to feed the yeast, so I get that aspect. She wanted us to cut out ALL dairy except for butter, but then she heard that we only buy local, organic, grass-fed, raw cheese and said we can do that in moderation. I'm planning to use some organic whey that I separate myself as well (she said yogurt is out) because we do try to eat traditionally as well b/c of Pixie's being part Native American and tooth issues that we have (lack of enamel.) I've stocked up on a lot of organic coconut milk, nuts, and local grass-fed meats, eggs, and produce (mostly veg since fruits are high in sugar.) This is going to be quite a journey!!! We cleaned out the pantry and have to do the freezer tomorrow (I posted it all on Freecycle and a single mom is coming to get it all...) and have been frequenting all kinds of food blogs and websites. Dan is taking a leave of absence for 4-6 weeks while we do this and all of the needed tests, etc for other immuno issues that we can now do since we are 4+ months out from IVIG. We're going to try to do a lot of cooking and freezing. (If I wasn't clear, we are ALL doing the diet along with Pixie.) AND last, but not least, we would love your input about any foods your kids like or recipes that meet our criteria. Dan helped me set up a blog to document our journey and add recipes that work for us. If you are interested, it is here: http://chickiepea.wordpress.com/ Things have been busy lately, but Pixie is mostly stable. We are still seeing a shorter fuse than we would like, occasional turning of the pages, some repetitive OCD-like things (mild), some handwriting fluctuations, fevers sporadically, pupil dilation, and lots of sensory issues. However, for the most part (and to the outside world) she can function now. She has even, over the past 3 weeks, been able to go for an hour and play a computer game alone or do 10 minutes in her room alone- which is a DRASTIC change!! We have been doing the Nutrition Response Therapy for about that long and I attribute it to that.

I spent 5 years as a single mom going from dr to dr with Pixie and no one would hear me. They said I was a new, young mom and she was fine and they would laugh at me. Then I got internet and researched symptoms and figured out to take food dyes out of her diet. That seemed to improve her for a short time, and then new symptoms would come. We ran tests and the dr would give up and say "dunno" and that was that. Dr after dr. Then when the mania got terrible, the aggression was in full swing... all of the symptoms were coming out at once and even an outpatient psych hospital stay wouldn't help, and psych meds weren't helping/making things worse, we spent 2 years online- every day, for HOURS on end, I would type in combos of her symptoms into search engines and come up with more blood tests we could run, diets we could try, but then hit a brick wall. Finally after lots of severe aggression and my own health beginning to suffer with caring for her and having a big sob-fest on the phone one morning with DH while he was at work, he typed in some magical combination of OCD, sore throat, fever or something... and up popped this very forum. We lurked for a few months and debated whether it was really PANDAS and what that all meant, until we hit a breaking point and it was either go to Dr K or find inpatient care for her. We got IVIG and prophylactic abx and have been steadily improving ever since.

Pixie's are like this too. It looks like brown build-up. Well, brown-ish yellow. She has gotten it from other meds as well (back when we were doing Claritin, for instance) and it does come off at the dentist with some work, but I would keep on top of it if you notice it. I wish Pixie would use a spin-brush at home, but she won't now due to sensory issues.

We've talked about this before, but I don't remember there being a concrete answer... is there an address for just donations?

Dr K believes that it follows the mother's side, as is the case with most other autoimmune disorders, from what I can tell. Both my great-grandparents (maternal) had debilitating arthritis from very young age My maternal grandmother has severe asthma, allergies, psoriasis/eczema and arthritis (rheumatoid I believe as it is disfiguring) My mom has Lupus and childhood issues with mono, severe anxiety and OCD, her sister has thyroid probs, her brother has asthma but no other issues I have something (diagnosed as Fibro, but recently had chiro tell me he thinks it's Hashimotos), childhood issues with strep, mono, and chronic sinus infections I have two dd's, one diagnosed with PANDAS. Her bio dad has OCD and addictions, but I don't know his childhood history with strep, etc. as we are not in contact.

The voice of reason in my house is MOST often the 2 yr old. Pixie has actually done stuff like what you describe... she will often scream for something IE: "I am HUNGRY!" and then you are trying to feed her and what she is saying and what she is thinking are two different things entirely, and what she is meaning to say is "I am THIRSTY" but we don't know that until later. And even then she will refuse to acknowledge that she has said the wrong word. She'll scream and scream but since she is saying something other than what she is feeling, we have no idea how to help. We have found that the biggest fits are for things like the strawberries you don't have. It helps us if we remember that it is NOT about the strawberries- it is just a way to release that pent up emotion, for whatever reason. When Pixie gets like that, I just keep talking to her softly, reminding myself that the words she is saying don't connect to anything about the situation right now, and then keep trying to propel her forward to school or whatever.

Yep. They give us 30 days a time, but in 3 bottles. The first 10 days is mixed already, then we get 2 packets of powder and 2 bottles of sterile water so that we can mix the next 20 days ourselves as we run out. This cuts down on pharmacy trips (a little!)

Just curious about thoughts....

All I can add is that I wish I had known about the chorea tests before IVIG so we could compare. Pixie (and I) both have mild chorea movements during the "test" that we have done at home. I don't know what you call this, but, Peglem, she sounds an awful lot like what Pix was doing immediately pre-IVIG. Pixie's actually looked like she was WRITHING. She had such complex, but fluid!, movements. It wasn't jerky like you think of a Tourette's tic, though she did occasionally have the head-toss, jerky tic. Hers was this shoulder shrugging, upper body going one way, legs going out another, bending.... it was literally like she was imitating a snake or something. She said it was painful and she was having muscle spasms. Originally the psychiatrist diagnosed that it was EPS from the Abilify, but it didn't go away with any of the detox they did, and disappeared LITERALLY the day immediately following her second dose of IVIG with Dr K. I would definitely video it. It may help you with insurance down the rd or just for documentation for studies, etc. or for yourself to compare later. Big hugs, Manda

Kathy, Yes! I would love to know. Part of me is skeptical, but another part of me really believes in energy and holistic medicine and it makes perfect sense, you know? We have gone (and continue to go) both routes w/treatments and investigation. I have found that homeopathy is like anything else- if you find someone who knows what they are doing, it can really work... but you have to weed out the people who are trying to involve you in multi-level marketing schemes or just trying to sell you batches of vitamins and crap. ((sigh)) I really want this to be legit and work, but like anything else I feel like I have to do the legwork to make sure it's something we want to spend our precious little time, energy, and money on. One of the best things we have done so far is MSA testing (Meridian Stress Assement) and we intend to do it for all of us, actually. This kind of reminded me of that, since you are measuring energy and weaknesses and using acupressure and so forth. One interesting thing that came out of the session tonight was (if this is accurate) that Pixie is "switched," meaning that she is in fight or flight when she is laying down, but using her para-sympathetic nervous system when she is standing up. That is totally backward according to the chiro. I am thinking one of two things- Either it is bull and makes sense because she was more scared at first laying down and then felt more at ease and in control while she was standing up and knowing that the test was almost over, etc. OR It really is true and that is why we see such exhaustion from her and such weird sensory issues- seeking to spin, roll, etc when she is still, and then becoming over-stimulated.

A homeopathic pediatrician that Pixie saw last week referred us to a chiro who does this. Dan saw a demo of it with the ped and wasn't TOO skeptical, and I asked another friend (a chiro) and she thought it was legit too. We went tonight (in the blizzard!!) to the chiro and Pixie got tested. It was interesting to say the least. It's definitely alternative medicine.... she talked about energy and then had someone hold Pixie's hand to be an "extension" of her and then Pixie held various supplements, etc to see what weakened and strengthened her. It reminded me of churches where people speak in tongues and fall out in the aisles (sorry, if anyone attends a church like that- I am not meaning to be offensive, just trying to paint a picture.) It sort of looked like someone who was a spiritual healer, I guess, and someone who was possessed with a spirit or something. I'm struggling to believe, and yet desperate enough to try ANYTHING at this point to help my baby feel better. I was curious if anyone has heard of this or has thoughts? The supplements you take are WHOLE FOOD supplements, not vitamins or chemicals or anything. The company they use is Standard Process, which has a good reputation from what I can tell from asking around. ??? Manda

This is of great interest to me because Pixie and I both do this. I agree with you in the sense that it doesn't LOOK like a tic, in that it isn't that constant same type of movement, but I'll bet it technically is. I'll give you an example- mine is stretching. I stretch my toes quite a lot. I don't always do it the same way, and anyone who wasn't aware would think I was just getting comfy or whatever. I never in a million years even thought about it consciously until two things happened: 1- Pixie was diagnosed and I started looking at myself for similar symptoms because we have similar histories and "the apple doesn't fall far" theory 2- I saw several photos of myself in which I was doing something weird with my feet! Pixie's tends to be more of a spatial thing like with your daughter- she'll twist suddenly in the bathtub or her arm will jerk. It looks like this involuntary spasm, but you may only see the thing once. I wonder too if it has to do with the weird roaming pains that go with autoimmune disorders...?

Grrr Dr Laura

Want to get some of these for home use. Where do you buy them and what brands do you use. In other random thoughts... if they are cheaper in bulk, would anyone want to do a co-op? -manda

We didn't go into extreme detail with our email to Dr K, but did basically tell him what I said here. His reply was that he carefully read through it several times and could not see a PANDAS pattern in what we were saying, but he is not ruling it out. He'd like to observe her in person and get a feel for her. We started the abx last night and today her "cold" symptoms have been worse and the diaper rash is just as nasty as ever. She has an allergist appt on Monday and I will try to see if he is able to swab her posterior for strep if it's still presenting. I also need to find out where to order those strep tests... off to start a new thread!

fixation on a certain number need to have you say something a certain amount of times before a task is done

No reply back yet from Dr K, so we started her on the Azith tonight. She has now added a funny penquin-like walk, but again, it could just be her being a silly 2 yr old or could be something related. I'm stressing to the max.

We emailed Dr K. I sat here and read all the replies last night and thought about her history and really started worrying. There is already a pattern of behavioral things that look like OCD and tics that always follow bouts of either illness (runny nose, etc) and/or fevers with no other symptoms. Maybe it is paranoia on my part, but I have seen what this can lead to and I'd rather be wrong and paranoid than to let it go and it be PANDAS and she is then to the pt where Pixie is (or worse.) I'm going to wait to hear back from him until this evening to see if he wants to do any tests with her or see her at all, and if he feels like the dosage they are giving her is enough, etc. If I don't hear back, then we'll just start with that abx tonight regardless. She already has set for Monday and allergist appt (unfortunately he is not familiar with PANDAS, but I plan to educate him ) because we also know she has some food allergy issues (don't those seem to coincide too!!?? ::sigh: I hate to have her blood drawn, but I'm really leaning toward doing the Cunningham blood work on her as well. I went against my better instincts to have it done with Pixie's and decided not to, but now I am kicking myself!!) In other related news, since 2 weeks ago when all this started, Pixie has been off the wall. I can't even remember if I posted anything about it... I'm a zombie lately, but she is upped now to 600 mg Augmentin twice daily per Dr K since he knew Peri was sick and Pixie was reacting. I'm hoping hoping hoping we hear something from him by the end of the day. As DH said, OMG if it is strep on her bottom, then we are in for it, because they BATHE together even. That is the only way we have been able to get Pixie to take baths, so that is going to be a real problem!!

i meant ml... typo

It is complicated and my gut instinct is to leave the post and if a doctor is a jerk then he deserves what he gets.... BUT I know from personal experience that he may have a point in that if you give another doctor "problems" then they may reject to help you in the future. How closely associated is your name with your username? And how often do doctors really google around to see if they are treating a "problem patient" I wonder. Probably not often. ((shrug))