AmberM

I wouldn't rush out to get a kub done..... it really only tells you how much poop is in there and if there is a blockage. Basically, the radiologist came out and said Audrey was full of poop and a couple of fart pockets. I could have figured that our on my own! We had to get one though for the g.i. specialist we see tomorrow. If your little guy is pooping twice a day, your in really good shape! I don't know about the bloating, it could be so many things. But yeast is probably a big offender. -Amber

Audrey gets poop that burns her and causes blisters from vitamin c. Dr. Bui was just saying that lots of the supplements that seem really benign can still cause problems with kids that have really messed up guts. He said he's seem a lot of kids having issues with vitamin c. They're all so different though. Does your little guy have a lot of bloating....what are his inflammation symptoms? We had the KUB done last week and it showed that Audrey was completely full of poop and gas. It's really weird though because I don't think I've seen her tummy so flat in a long time. We've had to resort to miralax and suppositories........ I hate both of those but I don't want to end up in the emergency room with a blockage. We're still waiting to talk to Dr. Jerry on Monday about the MRI results. I'm hoping everything looked good on that.

Hi Stephanie, do you buy the d-lactate free? How long does a bottle typically last....I'm guessing you do the adult dose? I may have to try that stuff. We do use buffered c but it still causes a lot of issues. I went to a seminar recently where Dr. Bui was speaking and he was saying that antioxidants can be really hard on inflamed guts. We have our g.i. consult on thursday and I'm really hoping to get some help for this kiddo! -Amber

I've also read of lots of asd/pandas kids having huge problems with strep strains. From what I've read, it seems to be all trial and error. Some kids are fine and some are not. That's not very helpful...... that's the most annoying thing in the world of autism though, so many kids react so differently to treatments and supplements. My dd cannot tolerate dairy, rice, soy, or coconut so all yogurts and kefirs are out. I can sometimes get her to try a little kombucha but nowhere near the amount she would need to benefit. And getting fermented foods in her is a joke! So, like you, we are stuck with probios. My dd also has the added joy of high oxalates. We've been using VSL#3 now for about a year and have seen no problems with it. I took a break from it for 2 mos to see if anything changed and all we saw was a huge increase in yeast and constipation. But I know lots of kids go insane on VSL#3! It's all so confusing. I may switch to Klaire labs detox support to see if that makes a difference. You just need a lot more capsules to hit that high bacteria count. My dd does fine on culturrelle too which I know makes a lot of kids crazy. But try to give her vitamin c and she'll have burning lava poop for days and blisters on her bum....... go figure. -Amber

Hi Stephanie, we had the MRI done today.... it went so much smoother than I ever expected. we were getting the MRI to rule out Chiari. Of course, the dr. at the hospital didn't go over the results at all, so now I'm anxiously waiting to talk to Dr. Jerry. We have an appt on friday with him. I didn't realize chiari caused sensory issues. Audrey's sensory seeking is so bad it pretty much takes over her day. We'll see how it goes. We also had a KUB done and Audrey is completely full of poop. Her problem isn't constipation, it's with holding. Her anxiety is so bad, she won't let it come out. SO no matter how many laxatives I add, she's able to somehow hold it in. We have an appt with a g.i. specialist next thursday. We're at that point that we may need to go see krigsman. So the spiro might be a bad idea right now. I need to get this kid pooping regularly. I never knew I would become so obsessed with poop! I will definitely ask about the spiro vs. ldn when I go in. He has a tendency to cut me off if I stray from the discussion so I don't know how successful I'll be with that one. I can talk to Dr. Woeller about it though. He was our previous dan! and we still communicate via web. He is very into both of the drugs. -Amber

Talk about winning the lotto....... 2 kids doing better!!!!! That's fantastic news. Our DAN! e-mailed me back and wants to wait until we get the mri, and scope done before we start anything new. We get the MRI done tomorrow. -Amber

Sometimes it's hard to just trust your doctor. I'm having trouble letting that happen as well. My husband gets so mad at me because we're paying so much money for our dr. to help us but I'm constantly e-mailing him to change things. Good luck with the bacteria....we had insanely high hippuric at one time too. Now we have high yeast.....dd is in her crib laughing hysterically as I type! -Amber

Do you know what kind of bacteria? If it's clostridia, it's spore forming and you may want to ask the dr. to prescribe 2 rounds. We've had problems in the past with the bacteria coming right back as soon as we stop the abx. We've had luck doing 10 days on, 5 days off, and then another 10days on. My daughter's neopterin/biopterin profile was normal. Do you think this would mean that she wouldn't respond to spiro? I've talked to a couple of dans! about that test and a lot of them say that a normal result on the test doesn't necessarily mean anything. I like how they say that after you spend all the money! -Amber

my daughter has trouble with this as well. We started using a transdermal patch called respen-a and it has worked wonders for her. Lots of kids do really well with oxytocin nasal spray as well but my dd's only 2yrs old so nasal spray would be tough. -Amber

I've done the biofilm protocol with my dd for yeast and clostridia. It was the most intense protocol we've ever been through....... sort of like unleashing a dragon. We had die-off everyday for over a month. One thing we had to do was use something really strong for the mop up. Fiber wasn't enough. We ended up using charcoal on the bad days and citrus pectin on the good days. Looking back, I wonder if I was opening up biofilm and exposing potential strep but not killing it. At the time, we didn't know my dd might have PANDAS.

Just like Stephanie, we get some nasty gut bugs here too. Ours is always clostridia. We fight it with high doses of culturelle, sach. b (kefir/ kombucha), kyolic garlic, and if all else fails, flagyl or vanco. You have to use a gram negative antibiotic for this kind of bacteria or it won't die. With bad bacteria we get aggression, irritability, and really stinky poop. With yeast, we always get sillyness, night wakings with laughter, and drunken sailor attitude. When we have both going at the same time, things can get a little weird! -Amber

I found this on another forum. It doesn't sound like the study was very accurate. http://www.ageofautism.com/2010/05/critica...injections.html

thanks, we're having a boy this time!

Yes, the birth defects would be caused by the mother taking the drug while pregnant. I think you had to be off of it for a couple of months but I went off of it for a year to be cautious. I was able to get pregnant naturally and all my symptoms resolved while pregnant. Maybe I just got lucky! I'm doing really well now. I'm 6 mos pregnant again with no problems! -Amber

I took the spiro because I have poly-cystic ovarian syndrome....... which means my hormones are off balance and I get weird things like irregular menstrual cycles, acne, infertility, etc......I took spiro for about 6 yrs with no problems other than decrease in blood pressure off and on. But again, the dose I was taking was much, much larger than a child would be taking. I stopped taking the drug because I wanted to have a baby and it's not safe to take while pregnant. Birth defects have been reported in male children because of lowering of testosterone. But again, I was taking 500mgs. I don't want to freak you out. In Dr. Jepson's book it mentions that the drug had no significant side effects with long term use. I guess the length of time using it would just depend on the recovery of the kid using it, I'm really not sure. The book is written for treating autism so it may be a little different than treating a kid with pandas. This is what the book said about Dr. Bradstreet's patient, "In a case report by Bradstreet et al., a 12-yr. old boy treated with spironolactone showed significant behavioral improvements, including reduction in irritability, lethargy, hyperactivity, and inappropriate speech. There was a twenty-one month gain in receptive language over a four week period after starting the medication."

A lot of kids on the spectrum have hormonal imbalances as well as high testosterone levels. I can't remember if your kiddo is on the spectrum, so sorry .......not trying to imply here! But what I was going to say is that it would be really easy to run some lab work before starting the drug and then a couple of months later to see if any problems were happening. I took spiro myself for PCOS and in my case, the numbers didn't change all that quickly. One side effect that I had was dizziness because it caused my blood pressure to drop. It was low to begin with though and I was taking a much larger dose at around 500mgs per day. I think kids get between 1-3 mgs. daily. I'm really excited to hear the improvements! I just e-mailed my dd's dr. to see if he'd be willing to write a script! I just finished reading Dr. Jepson's book and he was talking about spiro being great for overall inflammation. It said that one of Dr. Bradstreet's patients gained 22mos. of cognitive abilities in a 4 wk period from just using spironolactone! -Amber

80% improvement is very promising! That helps me to hear that it took a while to see significant improvement. This weekend was probably the best I've ever seen Audrey so I'm hoping the gains stick! Thanks for sharing. -Amber

We used citrus pectin for a mop up and it doesn't need to be separated like charcoal does. It doesn't work as well with my daughter. The clay may be more similar to the pectin in the way that it mops things up? -Amber

that's perfect, thank you! -Amber

It sounds like this spiro has been a miracle drug for you! I'm gonna have to ask about this. Have your kids reported any dizzyness or anything? I just ask because I used to take spiro for PCOS and it caused my blood pressure to drop and I was constantly dizzy on it. But the dosage could have been much much higher in comparison and I have low blood pressure to begin with. I don't know if LDN reduces brain inflammation but I imagine it could. I just got back from the Taca seminar today and Tim Bui was one of the speakers. He kept stressing that the brain is so connected to everything and brain inflammation can really come from anything......allergies, pollution, oxidative stress, bacteria overload, etc. We did the autism panel from the french lab and the neopterin/biopterins came back normal as well as the immune markers. But her creatinine only came back at 503. I heard that if it is under 1000, the results can be off. My daughter "plays" down there when yeast is really bad. She does all kinds of crazy stuff when her yeast is high! Sleeping through the night is always a good thing! I will let you know if we decide to try anything. I think our doctor gets a little irritated with me because I try to add a million things too fast. SO I'm trying to be patient, but it's hard. -Amber

Ya, I'm pretty sure the ocd doesn't bother Audrey at all. She gets insanely angry and anxious if I try and interupt her though. ABA therapy was absolute torture because the therapists would try and block her from her routines for 2hrs straight. I'm gonna have to find a better way to ease off of these. I am trying to switch things up every day.... I'll work up to the biggies as we see progress. It's really heartbreaking to see her so upset. Ok, well I'm glad you guys are telling me that any improvement is considered a success. I was afraid that if we didn't see miraculous changes, that she wouldn't be a candidate for this treatment. Then we'd be back to square one with our autism treatments and we're quickly exhausting the options there. Sometimes I worry that I'm just imagining improvement because I want it so bad. Thanks for the support. -Amber

Hi Stephanie, I have looked at both the spiro and the LDN for Audrey.....we must be on some of the same forums. Did you run any blood tests before starting the spironolactone? I'm just wondering because I was checking into it thinking Audrey could have testosterone issues because of her temper and irritability. This was before I learned about the possibility of pandas. I give my grandmother with parkinsons LDN with fabulous results. That's been a true miracle drug for her! Audrey is a really light sleeper and I worry about having to put the cream on in the night. But if it works, I would find a way. I will talk to our dr. about this for sure. I appreciate the advice. -Amber

Hi Meg's Mom, thanks for the help. We are pretty sure that my daughter is also autistic......up until recently we thought that was her problem. She doesn't really present similar to any of the autistic kiddos we see at therapy so that is why I'm cautious to say she is definitely autistic. Maybe I'm just being hopeful.... She is nonverbal for the most part so this her most prominent autistic feature. As far as a steroid burst....it would probably be beneficial as we've talked to her g.i. specialist about it before for her gut inflammation. I've heard of nonverbal kids speaking for the first time while on steroids due to the drop in inflammation. Since we are seeing improvements, our DAN! suggested continuing the abx for 30 days and then regrouping to see where we are at. Audrey may be somewhat of a special case because she was affected very early on by "something" and I don't feel that I have a good grasp of what normal is for her. We think she had a bad reaction to her hep b vaccine and by 3wks of age, was inconsolable and screamed all day until around 18mos of age. She continued to develop normally though and hit all her milestones until around 12 mos of age. So, I guess I don't have a good feel for what to expect as far as improvements. I just know that in the past 10 days, I have seen a happier, calmer girl than I have ever seen of her and that makes me very excited! I will check in to the book, I could use all the help I can get! -Amber

I'll be giving Audrey her 10th dose of the zithromax today and we have seen subtle improvements in anxiety. We've seen huge imrovements in hyperactivity, pacing, and grimacing. We haven't really seen any improvements in the rituals while walking around the block or driving down certain streets but I was able to take her to a new park that we had never been to. That would have been impossible a couple of weeks ago! Also, her emotional lability is pretty much the same.....I walk on eggshells all day. We've decided to go ahead and continue with another 20 days of the zithro but I wanted to ask if this is considered good improvement? I read posts of kids having miraculous improvement within a couple of days. Don't get me wrong, I'll take any progress I can get, I just want to make sure we're doing things right. She weighs 34lbs and the dose we are giving is 75mgs daily....at least I think that's right (it's compounded) thanks, Amber