AmberM

Anna's breads are awesome! We buy the pancake, pie crust and muffin mixes as well. I've only been able to find them online. www.glutenevolution.com

I've heard good things about ampho b as well. I don't think it's prescribed as much because it's really expensive. If it works though, it might be worth it. My insurance is charging me $300 a month for zithro!

UGHHHH, Stephanie, I'm so sorry you're dealing with this too. It sounds like you're in a worse place than I am with this surgery coming. I think it's definitely possible clostridia kicked in because she seems to be doing a little better today. I gave her kyolic garlic along with culturrelle for the last 2 days. Kyolic garlic works well for both yeast and clostridia but it always causes horrible die-off here. I've used tryptophan in the past but Audrey had a bad reaction to it due to clostridia. I guess it can cause problems with ammonia buildup if clostridia is present. So now we are using clonidine...... I know it's not ideal but it helps and we don't have any side effects with it. I'm going to have to look for that Calm Child, thanks for the tip. I really don't think she's having any virus issues, she's not acting sick....but who knows. Our kids sound so similar in their ocd stuff. Audrey has been bossing me around about t.v. shows, food, and just about everything else as well. It's a lovely age, isn't it. I'm so sorry to hear about the upcoming surgery. Hopefully, that will relieve some of his discomfort and his behaviors will diminish. I sometimes wish there was a surgery that could remove PANDAS or autism. Yeah right...... that would be way too easy. -Amber

We haven't had dd tested for mycoplasma yet but she definitely has rages. Like Stephanie, we see the rages increase with clostridia. That stuff is nasty! We had the clostridia long before we ever used any form of antibiotics and the only way we've been able to keep it under control is with hyperbaric oxygen treatments. -Amber

I think she is probably having some yeast die-off right now. I always underestimate how bad that gets. I'm feeling better after reading all these posts.........and getting some sleep last night. Set backs are just such a bummer. Thanks for posting the info. -Amber

Hi Kim, it seems like we're back to our baseline. It's so crazy how quickly things can change. Audrey has been on prescription antifungals for the past 18mos.....we've rotated diflucan, ketoconazole, and nystatin. Yeast is just a major issue for us. She's even on the "feast without yeast diet" but it doesn't seem to be making a dent. I think she may need to do the biofilm protocol. We tried to do it about a year ago but the die-off was so insane that I stopped after a couple of weeks. Her OT has us using a weighted vest several times a day. I also "steamroll" her with a medicine ball and she does headstands in her crib. I do a lot of squeezing and joint compressions but it's just never enough. Her sensory seeking is so bad that she will stuff gravel in her mouth and bite hard on it to try and get pressure in her jaw! I have to watch her like a hawk because I'm so worried about her teeth. Thanks for the support -Amber

ok, I'm going to try the motrin today, I didn't even think to do that. I e-mailed our DAN! last night and he was pretty surprised at the sudden change. We have an appt set for the 5th but if things continue like this, I think I'll try and bump it up sooner. We do use a lot of probiotics along with antifungals but I added some kyolic garlic a couple of days ago and I think she was probably having some die-off. But the whole reason I added the garlic was because her behaviors were worsening to begin with. So I think you're right, maybe we are in an exacerbation. Ya, Audrey takes the term "the terrible two's" to a whole new level! It makes me crazy when I hear my friends complain about this age....... they have no idea! -Amber

my 2 1/2 yr old has been completely off for the last week or so. We have been on zithro for almost 2 mos now and were seeing improvements but major yeast flares. Now all of a sudden, the rages, SIB's, and emotional lability are taking over our life. She has always been like a little ticking time bomb, but lately it's been so bad, we can barely leave the house. When we do leave the house, we pretty much just drive in the car but I don't dare take her out anywhere. When I picked her up from OT therapy today, her therapist just hugged me and looked like she was on the verge of tears. She said she really had no idea what to do. Is this pretty common, even when on abx? Does this mean we need to change abx or try something totally different? -Amber

oil of oregano is great for bacteria. It tastes awful but it works.

we just switched to ketoconazole as well and have been having a hard time in the last week with SIB's and tantrums. I'm thinking clostridia here for my dd as well..... that stuff is awful. Can you give flagyl at the same time as zithro? I worry about major stomach upset but if it's necessary. We've had clostridia so many times it's like an old friend here. We don't even test for it anymore.... we just treat. -Amber

My dd has autism as well so it gets a little murky for me as to what symptoms are stemming from what problem but I guess it really doesn't matter. After starting the abx, I'm starting to have this strong feeling that her main problem is PANDAS and maybe her autism is more mild than we thought. Anyway her symptoms are as follows..... no particular order: 1. she has this sort of grimace she makes on her face about 10 times a day... the, "I'm gonna kick your butt" face 2. she insists I drive down certain streets to get to places or all ###### breaks loose 3. we have to walk around the neighborhood in a certain direction and she has several points to stop at (signs, sprinklers, lights, etc) 4. severe anxiety and separation anxiety 5. extreme rigidity 6. emotional lability 7. she runs around the house all day on an "invisible track" 8. she didn't have a lot of language before but seemed to lose all of her language right about the time these behaviors started I know a lot of these symptoms can be written off as autism but the fact that the intensity has lessened while on zithro makes me think we are on the right track. We've had several school district people, therapists, people mention that my dd doesn't present like most autistic kids they've been around so I just feel like there is more going on. -Amber

My dd has autism so we went through several pedi's before we found anyone willing to help us. We now have an awesome pedi and DAN! I'm just one of those people that likes to get a second and sometimes third opinion. So I think I may go ahead and make a phone consult with Dr. K just to make sure we are on the right track. It's only money right? I do think both of our dr's would be willing to work with Dr. K, they don't seem to have big egos. Thanks for the help. -Amber

that's what I hear from a lot of people.

I live in Mission Viejo, Dr. Lin is my dd's pediatrician. we love him! Our DAN! is Jerry Kartzinel and the two of them are good friends and sort of work as a team on my daughter. She needs a team the way things have been going. Those two dr's have been awesome, we're having trouble getting a gastroenterologist to help us and all the negativity has sort of given me a bad attitude lately. I just wasn't sure if I should be getting an opinion from one of the top PANDAS guys? After I wrote the message, Dr. Jerry e-mailed me saying he was thrilled the zithro was helping . I had asked him if we should do some blood work before our next appt. like anti-dnase or anything else and he didn't think we needed too because the fact that she was responding to therapy was good enough proof. We have some other tests we need to work on first I guess..... dd has autism and a stressed liver. I did e-mail Dr. Cunningham's office though to ask about getting a kit. I just want to make sure I'm doing everything possible for my daughter. -amber

My dd is a hardcore sensory seeker as well. She's 2 1/2 and actually does headstands in her crib! I'm always afraid she will snap her neck. She also chews on gravel and just about anything else hard to get that intense pressure. I just wanted to mention what everyone else said...... things get way more intense when yeast or bacteria are present. Don't get too upset about another dx, it really doesn't mean anything. As he heals, the sensory stuff will get better. My dd loves OT and just about any other rough and tumble activity though. It's her "me time"!

I know this is subjective because everyone will have their favorite but I was wondering if people could give advice on which Dr. might be the most open to helping me with my 2 1/2 yr old daughter. We've had some bad experiences lately with dr's refusing to believe my daughter has any problems and I don't want to waste my time with any more of that nonsense. Our primary physician has been very helpful and he was the first person to bring up the PANDAS issue but I really think I need to see someone who specializes in PANDAS. We have been using azithromycin for almost 2mos now and are seeing moderate results, which I'm grateful for, but I kinda feel like I want to make sure we are doing everything we can. Our Dr. suggested we consult with Dr. Gupta here in SoCal but I haven't heard the best reviews on him. Any advice would be greatly appreciated. -Amber

I'm in the same boat here too. My dd has been on azith for almost 2mos. now and we have seen improvements in overall mood, anxiety, and rigidity but her ocd stuff is still going pretty strong. I'm grateful for any progress we can get but I kinda feel like we're seeing that door cracked open and I need to ram through it now! My problem is that my dd is only 2 1/2 yrs old and I don't really know what the next step is. I don't know if we need to play with abx dosage or brand, try LDN or something like that, or try and pursue something like steroids/ IVIG? I realize she's young but we've basically missed out on most of her development due to this crappy situation....... we started noticing first signs right around 18mos or so. I certainly don't want to miss out on anything else. -Amber

I've found that autism forums are full of people that are really helpful.... just like this forum. Most of the people on them, have been forced to research all hrs of the day and night to save their children since there aren't too many dr.'s that are willing to help. Since gut issues run rampant in the autism community, you'll find lots and lots of info on those boards. And you'll be welcomed with open arms, even though you're not autistic! You can also check out autismweb.com (don't have to wait for a membership). Since you don't have access to a dr. that is willing to help, you should be able to find a lot of advice about diet and supplements on those boards. -Amber

I'm just starting on our PANDAS journey with my 2 1/2 yr old dd, also dx'ed with autism. I was wondering if you could give me a link or info to get a hold of a Cunningham test? Do I need a dr. referral to get one, or do you just pay the $400 and it's yours?

It sounds like you need to see a gastroenterologist. Do you have a dr. that is willing to listen to you and help run some tests? My dd has autism so we work with a DAN! dr that runs all the tests that our mainstream pediatrician will not run. An upper g.i. most likely didn't get to the area you are having trouble with if the pain is much lower down. If you google the names Dr. Krigsman or Dr. Bui, you should be able to get some good info on Crohn's and other g.i. disorders. Also, you can join a yahoo group named Thoughtful House. If you go on there and explain some of your symptoms, some members should be able to help you. You definitely don't want to be living in pain like this! I'm sorry you're going through so much. -Amber

No problem, I'm glad I could help! You are probably reacting to the red dye in the cherry flavoring. Artificial flavorings and colorings are huge problems for a lot of sensitive people. Also, I don't know if you've tried digestive enzymes, but you may find that you can eat more foods without pain if you take the enzymes before a meal. We use Houston's brand. Trienza is a combo of all their enzymes and seems to help my daughter a little. The test through U.S. Biotek is a finger prick but the other two labs require a blood draw.

We've been gluten free along with 31 other foods for almost 2yrs now. You can absolutely do the diet vegetarian. One thing I would recommend, if you have a dr. that is willing to help you, is do a basic food intolerance test. It needs to be done through a lab like Great Plains, Alletess, or U.S. Biotek. This test will check your IgG response to about 96 foods rather than the traditional IgE test that an allergist will run. The reason I say you should do this is that you may have an intolerance to a food that you will be using to substitute for your gluten. My daughter is highly intolerant to rice, eggs, oats, and coconut (among others). When we started the gluten free diet, we fed her tons of rice and she became much worse. We make pancakes and gingerbread with teff flour and it's awesome. Once you get used to the gluten free grains, they're not too bad and most of them have a lot more fiber and protein than wheat flour. here are three links for my favorite blogs that I follow: http://www.elanaspantry.com/ http://glutenfreegoddess.blogspot.com/p/site-index.html http://glutenfreegirl.blogspot.com/

Ditto on the yeast!!!!! My 2yr old dd does headstands in her crib every time her yeast gets high. Hanging upside down, emotional lability, drunken, silly behavior...... you name it. It's very common and I'd be willing to bet that's what's going on at your house. I hate yeast!!!!! -Amber

sacch b. is a strain of beneficial yeast that is really good at attacking candida and bacteria in the gut but it won't repopulate the gut. We use it a lot for my dd's clostridia problems but need another probio to repopulate.

I have talked to the people over at Klaire....they're super nice and helpful. The problem is, there are lots of parents reporting that their kids have problems with the strain. So although, it seems to be harmless for most people, it can still be a problem for kids with PANDAS. Our dan! dr basically said that you need to just watch your kid for problems.... some are ok and some are not. There's no way to tell which kids will have an issue with the probios. The Klaire labs detox formula is really good and doesn't contain any strep lines in it. We've used that one. -Amber