AmberM

Hi Wendy, I'm having a lot of bowel issues with my 2 1/2 yr. old. It's mostly bad constipation. Charcoal really helps her die-off reactions but add to the constipation. Does the clay have the same effect? And how much do you give? Where do you get it? thanks, Amber

We use probiotics here with now problems but my dd really has a lot of gut issues. I have read of a lot of kids having issues with the culturrelle. I'm not sure if you were using the green box or the yellow but the yellow has casein which some kids react to. The green has inulin, which some kids react too. I've also heard of several kids reacting to anything with strep strains in it.... even yogurt. Even though the strep is supposed to be beneficial, it can be a problem in kids that already have "confused" systems. I really like the Klaire labs formulas of probiotics. The quality is excellent and they have several choices without strep strains. My daughter has to be dairy free so we can't do kefir or coconut kefir but we've had good experiences with kombucha as well as fermented veggies (kraut). I think both have sach b. strains though so that may be a problem at your house. It's incredible how different everyone reacts! -Amber

My daughter is on a whole slew of supplements because of her deficiencies and gut issues. We're sort of on a break from most of it.....trying to work out some problems she is having with constipation. Anyway, she is on calcium, magnesium, and vit. d3 right now. I don't give the cal/mag because of the d3 though. She is dairy free and needs the calcium because of one of the meds she takes. I really like the Pure Encapsulations brand of d3 but Carlson's d drops are good too and probably easier to find. I don't know if that was helpful at all. Also, try to find drops that are measured in 1000iu's per drop......it makes it so much easier! -Amber

Your story was very helpful to me, thanks for sharing. We're just starting out on our pandas journey and it really is great to find stories as detailed as yours. My daughter has autism and we've been doing biomed for the last year and a half for some of her problems. One thing I was going to mention is that most DAN! dr's feel that the reference ranges for vitamin d are pretty outdated and a score in the 20's should be considered pretty low. When we first started, my daughter was 12mos. old and had a vit. d level of 29. After supplementing with 3000iu's daily for a year and a half, it's only up to 48 so it has taken quite a while to get there. We are hoping to get it up closer to 70 or 80. The recommendation we follow is 1000iu's for every 25lbs of body weight. My levels were at 33, 3 mos ago and I've been able to raise it to 55. So if your son doesn't have any gut issues or absorption issues it could rise quickly, but it would still take a lot to get him in the toxic range. We check every 3mos. just to keep an eye on things. Oh, and we live in Southern California and my daughter runs around the backyard in a diaper all day! Thanks again for sharing all your info. As a child, I used to stare at the sun all the time......I didn't know it was weird. But my eyes are pretty healthy despite the abuse I put them through. -Amber

Hi Vickie, is it a blood test that I need to have done to clear my husband and myself from strep? If I am positive, would I be able to do anything while pregnant? This crossed my mind earlier as I plan to breastfeed for at least a year. I don't know if antibiotics would be ok during that time but if I do have strep that is untreated, would it harm the baby? I also, obviously, don't want to do any more harm to my daughter either. We have to use versed for blood draws so I completely understand what you mean too about 4 nurses holding your son down. It's rough to see them so terror stricken. My daughter seems pretty much the same so far.....which translates to GROUCHY! One thing my husband and I have noticed though is that she hasn't done the grimace at all yesterday or today. She was also pacing a lot less yesterday but is pretty hyper again today (yeast?). Would the antibiotics improve her happiness/ demeanor or just the tics and ocd type stuff. I'm not sure I know what to look for. Either way, we haven't had any miracles happen. But she's only had 2 doses so far. I think I will try the motrin tonight along with the zithro to see if that helps a little. Her nose is still a little stuffy and that makes her crabby as well. I will definitely keep you posted, it means a lot to me to have such a warm welcome from everyone. We appreciate all the advice we can get! I had a lot of questions for our DAN but he basically said he could talk all day and charge me for it but he'd rather find out if that was her problem first. So I'd much rather save the money for treatments and get better advice from people that are actually fighting in the trenches. Anyway, thanks a million -Amber

It's really hard to tell when Audrey crossed over into the autism world. When she was born, I was given an mmr and a flu shot due to my bloodwork coming back saying that I had low titers to measles. Audrey was also given a hep b shot. Within a couple of weeks, she declined into a state of being a horrible nurser and just completely inconsolable 24 hrs a day. She would scream and cry and I quickly became a nervous wreck. Our pedi declared she had silent reflux and gave us prevacid. The meds never helped at all but the pedi discouraged us from going to a specialist and said she would outgrow the condition by her birthday. Our DAN! is not convinced that she even had reflux and wants to run an MRI to rule out a chiari malformation (swelling of the brain). Other than that, she was sick once when she was 3mos. old. She ran a fever and threw up once. We went to an after hr clinic and were told to just give motrin. She's never been on antibiotics other than flagyl, which I know wouldn't affect strep. The dr. Did not do a throat swab, I think she would probably have to be sedated for that one. He said he suspected a sinus infection or upper respiratory due to the fever and the ear infection she had. Honestly, I think he was looking for a chance to trial some zithro on her and was hoping I wouldn't balk. He said her symptoms just screamed "pandas" to him and he was hoping we good get some clues from this. My husband and I both got sick the next day with sore throats that quickly moved in to a full blown head cold so I really don't think it's strep. I wouldn't be surprised to hear that I'm a carrier. I had a bad abcess on my tonsil in college and had to go through emergency surgery. Apparently, they didn't remove enough tissue and I get infections on the area that my tonsil used to be. I never really took it too seriously because I had no clue about pandas. We just started the zithro last night. We gave a higher dose once and then we were instructed to give half that for the next 10 days. She seemed calmer today and pacing was down considerably but I've gotten excited before so I don't want to speak too soon. thanks so much for taking the time to help me, Amber

Thank you for the well wishes.....I hope we see some changes soon too. -Amber

I'm new here, a friend suggested I come for help. I have a 2 1/2 yr old daughter that we have been treating for autism since right after her 1st birthday. We have done numerous biomed interventions that have been successful on paper but really don't reflect on her behavior. We're at the point where we rarely leave the house because of her anxiety and just getting through the day is very difficult. I haven't really been around a lot of autistic kiddos so mainly rely on forums and yahoo groups for info. I hear a lot of parents mention anxiety, non-compliance, rigidity, etc so just assumed that was part of the deal. We switched to a very prominent DAN! dr. about a month ago and he was absolutely floored by my daughter's behaviors. He basicaly said he couldn't believe my marriage has lasted and I've got to be out of my mind for even considering having another child. I'm currently 6 mos pregnant. He has a son with autism and has been through a lot so I don't take offense but it did concern me that we were bumped up into his top 5 of difficult cases.....and he saw her on one of her best days ever. He ordered a slew of tests that we are trying to get done in the next month or so....MRI of head, scope of g.i. tract, stool analysis, kub x-ray. My daughter also has chronic constipation and clostridia/yeast infections. We ended up at his office on Monday, she had an ear infection/ upper respiratory type illness. The dr. was then speechless at that point. Her behavior was so bad that we could barely hear each other. He checked her ears and they had cleared by that point from the drops I was using so that wasn't even the excuse for insanity. He thought her symptoms really looked like something he would see in a PANDAS patient and suggested we try 10 days of zithromax. He was hoping we might see some improvements in her behaviors and at least get some kind of direction for treatment. We're seriously at our whit's end here. These are the symptoms that I'm noticing, I'm sure there are several things I'm not noticing. Any help or advice would be greatly appreciated. 1. she spends the majority of the day running in circles and pacing around the same invisible track in our house. 2. extreme hyperactivity 3. severre anxiety about going just about anywhere but 5 places (IN-N-OUt Burger, therapy, Whole Foods, hyperbaric clinic, dad's work) 4. to get to those places, she insists we drive down certain streets or all heck breaks loose) 5. will only walk around neighborhood in a certain path and must stop at several points to touch or step on items (flowers, bushes, stepping stones, lights, signs) 6. started doing a weird facial grimace...she does it out of frustration but also just does it sometimes. She is fully aware and doesn't seem to be having a seizure while doing it. Although I'm not excited about the possibilities of another problem, this one sounds treatable and it would at least give me some direction. I'm willing to do whatever it takes to save my little girl. She's very sharp and aware but there is just something that is really holding her back. She's somewhat a non-responder in the autism biomed world and I'm just hoping to find something that might help her. We gave her the first dose of zithro last night and so far nothing amazing has happened but she does seem calmer today and isn't really pacing as much. We now go down to a lower dose for the next 9 days and see how it goes. thanks for listening. -Amber