Mayzoo

I bought kefir grains online and I make home made kefir. It is super easy to make and use up. This whole site has been a wonderful resource for me: http://www.culturesforhealth.com/kefir#kefir_articles_recipes_videos We use it in smoothies, dressings, and I recently made kefir butter. I have also lately been using the unflavored kefir in place of mayonnaise on my lunch wraps (tortilla, veggies, meat) and home made burgers. I use store bought whole milk for the grains to culture since none of us have milk allergies. If you have any questions, feel free to ask here or PM me.

Thank you. Her immuno has discussed that PI would help get IVIG covered. We think she has some kidney disease (still trying to get a handle on this one), so she would not be eligible for HD IVIG anyway. Since her numbers are low, but not incredibly low, I am looking into IVIG alternatives for the time being.

Talk to your pharmacy. They can make a note stating she is to get a different generic from now on, though you will have to check in the bag before you leave every time to make sure they did not miss the note. Good luck.

Could be a lot of things. At one time I thought is was sensory, the feel of the water possibly hurting her. I wish I knew. When I give her a sponge bath, I wash her hair in kitchen sink, but that can still be traumatic. I've asked DD many times and she always answers, I don't know. I've asked her if she is afraid and she doesn't know what to say. She does that when she doesn't know how to find the words. I'm afraid to ask her if she is afraid she will go down the drain she might start obsessing over it. We are waiting for a in home behavior consultant schedule. I hope they have experience. Yeah, my kiddo is verbally delayed and I have learned the hard way to not to suggest possible answers.........AAAHHHHHHH. If she cannot express it and I cannot guide without actually suggesting an answer, I just accept it and go on hoping some day she will be able to. I hope they have experience too. Are you aware of the "no rinse body bath and shampoo" type products that require no water to get a reasonable clean?

Since kiddo usually has no issue with our pool, I have been know to wash her hair in there.......I know . But if it works and reduces anxiety and stress for all of us, who cares. It is an 18' round by 4' deep pool. A little shampoo in a private pool will not be the end all of everything . As most of us know, nobody wins when you drag a terrified, screaming child into the tub to wash her hair. She is gladly splashing away right now actually. We have put up a pool for the last 8 years and encouraged her to have a blast in it. She is unable to do most other sport type activities since she has neurological conditions. I have no idea why it is "different" most the time than a bath tub :/. I know she swims like a fish !!

Odd part is we put up a pool every year, and all but the last month (time of onset) of pool season 2011 she was a fish. Last year, she was a fish including a new found love of wave pools. This year we just put it up, and she is really wanting to get in today, but the water is not warm enough yet. She played in the shallow water yesterday for hours as it slowly filled up. But ask her to take a bath since PANS onset and .

Yeah, when a bath is required, I always give her the choice between a shower with her mickey mouse shower head or a bath with bubbles.

Could be a lot of things. At one time I thought is was sensory, the feel of the water possibly hurting her. I wish I knew. When I give her a sponge bath, I wash her hair in kitchen sink, but that can still be traumatic.

We have low IgG and IgA.

Ideally: Last I looked into this, generic drugs are held to a +/- 5% of the potency of a brand name drug. HOWEVER, I do not recall how often this is tested, so there is obviously room for error, just like there is room for error even between different lots of the same brand name drugs. When man is involved, errors will happen. Additionally, thisregulates ONLY the active ingredients; whereas, some people react/respond to the different inactive ingredients between manufactures. Sadly, fraudulent drugs have been a somewhat rare, but unavoidable, fact of life for the last 25 years I have been involved in pharmacy. It was likely a problem before then too . Being aware is your best defense, and if you know there is a difference between generic brands or generic to brand, then speak up and don't stop speaking up until you get some satisfaction.

If my kiddo got a ten day supply of abx for strep, I have her retested on the 11 day. Not sure about the changing abx. I know we changed around a bit in the first 30days, but she only cleared the strep after 40 days straight of zithromax. As long as they keep them on ceftin for several weeks, that is one of the appropriate abx for post bite treatment. http://www.cdc.gov/lyme/Treatment/

We always retest after abx to see if the strep cleared or not. I had to argue with the doc the first time about this, but after she tested positive the second time, now they insist she be retested. Ultimately, she had strep for almost 60 days, despite constant abx, that first time around, but had no symptoms. Are you in a deer tick area where lyme is a concern? If so, are they treated to prevent lyme infection?

My daughter was diagnosed with PI. We have not had the follow-up appt post blood work yet, that is on the 23rd. I will have more information then of course. I already called and got a full patient resource kit from Baxter about the condition and IVIG with information for me and kiddo (the kit is awesome so far). Kiddo relates to stuffed animals an incredible amount so the Igi will fit right in and may become the new favorite (I have not given her anything from the kit yet). We did four T & A's on stuffed animals before she had hers done and it was SOOOOOOO helpful for her to help process the whole experience. I do not have any specific question yet, just curious who else is dealing with this.

Oopps, I think I misread the original post...... I gave kiddo a ten dollar 3 mp digital camera and she has pretty much worn it out. She loves to photograph everything! Since she still drops stuff regularly, we have not advanced to expensive technology at this time, but later we may have an i-pad hand me down or something she can film with. She does love to participate in videoing, and yes we use them as a type of ERP too. She watched a child friendly video of a T & A admitting and release (not the surgery or the crying of course) to help her get an idea of what to expect. Glad she found a new way to safely experience her world that has caught her fascination as well.

Since my daughter could talk, she has asked repeatedly/constantly for photos to be taken of her regularly in all kinds of settings be they special or not. My sister thinks this may kiddos way of finding out how she "fits" into this world by looking at herself in a photo of her surroundings. It is the only way she can see herself in her environment. Most of us can imagine how we look in our environment and have a good self image of how we fit or look in our world, but sometimes with an autistic disconnect, I guess these kiddos have trouble processing exactly how they fit/look in this world since self image is harder for them (so I read). May not be the real reason, but it makes sense. Heck, maybe my kid is just narcissistic LOLOLOL.

It could be a lot of things, but in my case it was related to yeast. Mine was mostly a night dry cough, but some during the day as well. I just assumed mine was allergies for almost a year, but then I got thrush. I took two weeks of diflucan, and amazingly my cough went away. Slowly it came back, but I also started Enhansa for joint aches, and to boost my immune system, and again the cough has gone away. I had no idea that yeast could cause a cough, and I have not researched to see if there is data to back up my experience. Morning only cough could be allergies. Asthma is usually random but all day especially centered around activity. We are not dealing with myco, so someone else will have to chime in there.

I have been able to force, cajole, bride, and reason a bath for the last 18 months, but I do not recall a single time that she has requested one since onset. She used to love them! Last night right before bed she wrote down (yup, still not talking) that she wanted to take a bath. I thought maybe she was just stalling bedtime, so I told her first thing in the morning she could take one if she wanted to. She asked again this morning . She has a small new toy that is a fish, and I think that prompted her wanting to take a bath. That and reading about Garfield taking a bath .

We would stay off the internet if docs could provide relief of symptoms/diseases for our children. Who here actually wants to spend so much time researching for our children, and who would gladly give it up if our children actually were getting better in the first several attempts at medical treatment? But as it is, let's see......research what seems endlessly or stand idly by and watch our kids suffer with no apparent relief in sight? I know what I and everyone here has picked.

We are not there yet, but I have read of a few on here giving just one a week. My guess is this would be a somewhat long term trial and error with your doc on board for adjustments as needed.

00 is the next largest. Here is a link: http://www.capsuleconnection.com/capsules

Thank you very much. I had the book already downloaded, but have not read it all, but at least I have started that one. The videos I did not have the link to yet. I have looked over the heartfixer link very briefly, and will continue to scour it. I have my homework cut out for me I am sure .

What is the name of the book you refer too? Do you happen to have a link? I may need an advanced genetics deciphering book for dummies .

My only input so far is it looks like a toddler got a hold of your computer . The MTHFR C677T I believe is a methyl folate mutation. LLM will be more helpful I am sure . Maybe, I can be more helpful in a few months, or maybe you can help me in a few months

I am a rum and coke or wine kinda gal, but sometimes my drinking one does help a few around me . Good luck and I will be following behind you soon........ I don't have my kiddo's results yet, but they are in the works. I also remembered she had very extensive testing through a hospital we went to. They did a first pass analysis, then later when a micro analysis was available, they did that. I am trying to get her results for that too now. Then I will be wading through those for a while I am sure.

If we go with IVIG, I wanted to know where he usually performs this at. He is not in network, and I need to see if the facility is in network or not. Thanks.