AmberM

Yes, the smell is horrible! It will make your eyes water! We've been battling c. diff for over 2yrs with my 3 yr old dd. We're finally getting it under control with long term daily doses of vancomycin. Oral vanco is non-systemic so it's safe to use for longer periods than flagyl. We've done several rounds of flagyl, culturrelle, hyperbaric oxygen therapy, herbs.......it always comes back. For my dd, irritability is through the roof. She also runs in circles, gets a huge bloated belly, sensory issues like needing deep pressure on her head, self injury, night waking. They've done studies of rats infected with clostridia and one of the first symptoms is that the rats start running circles......weird. -Amber

Thanks so much for the advice. Audrey is on omeprazole once a day but I think I may ask her pedi what the max dose is we could use if necessary. I'm with her all day except for 3hr in the morning when she goes to preschool but her teacher is pretty good with helping her through a bad episode. I'm really hoping the steroids help her. -Amber

I took my dd to the pediatrician this morning to go over our Cuningham results and he agreed that we need some serious help. He raised the abx dosage to 200mgs of azithro from the 75mgs our previous dr had her on and are planning to do a 30 day steroid taper starting on monday. He mentioned that he was a little nervous about giving the steroids because of my dd's acid reflux. I guess the medrolpred can exacerbate reflux? He suggested trying to give mylanta at the same time of day as the steroids and I was wondering if anyone else has experienced this before? My daughter is 3yrs old and nonverbal. When she has reflux episodes, she becomes completely inconsolable and self injurious so I'm a little terrified. But at the same time I'm very determined to get her out of this PANDAS. We'll suffer through if needed but I thought someone may have some tricks. She currently takes a high dose of Prilosec at bedtime as well and it does seem to help for the most part but she has been waking up lately screaming and I can't tell if she's having the reflux or some kind of night terror type of episode. -Amber

I just received Cunningham results for my 3yr old dd and was hoping to get some advice. We have an appt with Dr Lin on friday morning and I don't want to waste too much time asking questions that I can figure out beforehand. My dd has never been tested for strep and has never shown any outward signs of strep. She has been in treatment for autism since 14mos of age but looking back, PANDAS symptoms came on really strong around 20mos of age. She did test positive for EBV virus so she may be more of a PITANDS gal. We did 4mos of zithro with little progress but every time we went off of it, we saw regression. Anyway, any help would be greatly appreciated. We're hoping to leave Dr. Lin's office on friday with a script for steroids. My dd has horrible gut inflammation so I'm hoping it will help with that as well. I wanted to see if a burst or taper tends to work better. The blood was drawn during a good period..... her symptoms were about a 2 out of 10. She's now closer to a 5 out of 10. Her main issues are anxiety, rigidity, rages, night terrors, and limited eating. It's heartbreaking to see her like this but I'm feeling so hopeful to find some answers finally. It never felt right when other dr's would blow the symptoms off as just "part of the autism". That's just an excuse to not help us. Cam Kinase II 159 Anti-Lysoganglioside 160 (norm range.... 80-320) Anti-Tubulin 250 (norm... 250- 1000) Anti-Dopamine I 2000 (norm..... 500-2000) Anti-Dopamine 2 2000 (norm...2000- 16000) The lab was able to run the test off of just 2 mls of serum even though they asked for 10-20. My dd has horrible veins and we were lucky to get that much. I just thought I should let everyone know in case you are ever in that situation. Kathy and Dr. Cunningham were awesome to work with. -Amber

Amber, what made you pick the Longvida brand? Covered by insurance? Really? Is that through a DAN doctor? Are you using it for allergies or simply for anti-inflammatory? Sorry I'm so late to answer this. Our DAN! prefers Longvida brand. I guess it is more absorbable than other brands but who knows. My dd has a lot of gut inflammation as well as the PANDAS so we use it for that. A lot of people were reporting on autism forums that circumin helps with yeast but I really can't tell if it has helped with that. My dd has been on prescription antifungals for 2yrs now. I think, in order to get the Enhansa covered by insurance, you need a dr's rx. If you call Lee Silsby pharmacy in New Jersey, they could give you all the info. Their customer service is fabulous. We tried Enhansa about a year ago and that stuff is super powerful! We never got past the introductory dose because of the crazy reaction. I guess it's normal to get die-off or flu like reactions with the start up and that's actually a good sign but I think my dd was reacting to the phenols because she was up all night bouncing off the walls. We tried it for almost 2mos and never got past that crazy phase. We didn't see any of that with the Longvida so I think it's a better match for us. I hope that helps! -Amber

We're using a high dose of circumin with great results. If you search the net, you'll find great info on it's anti-inflammatory properties. We use a brand called Longvida but Enhansa is really popular through Lee Silsby pharmacy and some people are getting it covered by insurance. Just a thought. -Amber

We are currently using vanco longterm for my 3yr old dd with good results. She has a nasty recurrent clostridia infection that is preventing us from making any real progress. Unlike flagyl, we've never seen bad die-off with vanco, which is super nice. Our dr. was saying that since the oral form is non-systemic, it can be taken safely for long periods of time without worrying about stress on the liver. We're going to be using it for possibly a year straight just to give you an idea of what I mean by long term. Anyway, we've only seen good things with vanco for my dd. -Amber

We give 3000iu's daily for my dd who weighs 34lbs. Her levels have gone up from 25 to 56 over the past 2 years. I hear it really takes a lot of vit. d to overdose... especially with kids that don't tend to metabolize supplements well. We use Carlson's drops. They don't taste like anything.

thanks for all the help. We get our blood drawn by a phlebotomist because my dd needs sedation..... it's just too traumatic without it. She just turned 3yrs old so we're hoping her veins will improve with age. I just really hope they're able to run the test. I'll let you guys know.

We went to get blood drawn today for the Cunningham test and the nurse was only able to get 2mls of serum. This is the second time we went for a draw this week. The first time was a complete disaster and the nurse wasn't able to get anything. My dd is compliant but her veins are just really bad. The nurse ended up calling Dr. Cunningham and she said to go ahead and send the sample and they would try their best. I was wondering if anyone else has had this happen and if so, were they able to run the test? I really had my hopes up about getting this test done. thanks, Amber

we had the same problem with melatonin and waking in the night so we ended up using melatonin to fall asleep and l-tryptophan to stay asleep. The only thing with tryptophan, is that if you have a current bacterial infection going like clostridia, the excess ammonia will cause major mood swings. At least that's what we saw in my dd. So the dr. then told us to use l-ornithine in the combo to reduce ammonia but all those aminos taste soooo bad that it was impossible to get her to take them.

As far as I can tell, it doesn't seem to bother her at all. I give 50mgs, 3 times a day with meals. My dd weighs 34lbs and is 3yrs old and nonverbal so it's hard to tell about the tummy upset. She has a lot of g.i. issues though and she is pretty good at letting me know when she isn't feeling good. I have a 3mos old baby that just got through a rough phase of colic and the crying makes my dd extremely anxious. When she first wakes in the morning, she will have borderline panic attacks if the baby cries but within a couple of hrs of taking the 5-htp, the crying doesn't bother her at all. It's really been a miracle for us and we've tried just about everything natural. One of the side effects is that is can make you sleepy but this has also been a good thing because my dd is very hyper. -Amber

I think the pie crust from Anna's Breads is pretty good. They're bread mixes are the best I've tried as well. The website is www.glutenevolution.com We can't use dairy or eggs here but the ener-g egg replacer works good as well as hemp milk. -Amber

We used l-theanine for a while with my dd but it was hard to tell if it helped because she had so many other issues going on at the time..... clostridia, yeast, food intolerances, reflux, etc. We tried GABA and had the worst reaction ever but 5-HTP is really helping with anxiety. -Amber

I'm not sure if the term that was used was "normal" or n/t or verbal or something to that effect. At that point in the conversation, I was full of rage and having visions of slashing tires. The worst part was he kept patting me on the back as if I was a helpless victim. Very condescending. Did he actually use the term "normal kid" ??

Can you believe that? We had a pediatric gastroenterologist tell us that all kids with autism over-react and make things up. He also said that if she were a normal kid and could tell him she was actually in pain, he would consider scoping her but since she was clearly autistic, it would just be a waste of time. He said that us parents just get so worked up trying to figure out what is wrong but at the end of the day, there's nothing you can do to help them. He then sent me home with a bottle of miralax and a script for nystatin cream in case her butt was itchy. I was speechless. It's ok though, our DAN! gave us a script for prevacid and she has been sleeping like a rock since so we got the last laugh on that one. She may not be able to talk but she gets her point across when she's in pain! Your son sounds exactly like my dd..... irritable, aggressive, anxious, miserable. That gives me hope about treatment to hear the augmentin helped because zithro doesn't seem to be doing anything right now.

It is really refreshing to finally find a dr. that is willing listen and help. I got so sick of being told that my 14mos old was a liar and was over-reacting. Seriously?

DAN! just stands for Defeat Autism Now! It's a group of dr's that have pledged to follow a certain protocol to treat autism and related disorders. We have been following the dan! protocol for my dd for almost 2yrs now. She has autism and several of the comorbid issues that go along with it. Your dd doesn't need to have autism to go to a DAN!, they will help with PANDAS, ADHD, asthma, etc. Not all DAN!s are created equally and it would definitely be a good idea to ask around to some of the parents that have been in "the game" for a while. We had to go to several dr's before we found one that we really liked. I live in southern Cali and we use Dr. Thomas Lin and Dr. Jerry Kartzinel. we've had awesome experiences with both. Here is a link for a list of DAN! dr's. http://www.autism.com/pro_danlists_us.asp -Amber

there's a brand called coromega that comes in almost like a pudding consistency. Each serving is in a little packet and it doesn't taste fishy at all. If your little guy doesn't have any consistency aversions, it might be a good one for you. Whole Foods sells it. I use omega-cure and it has absolutely no fish smell or taste so it's super easy to hide in applesauce and foods. But it needs to be ordered online.

I really feel your pain. Blood draws are really traumatic for my dd. She has awful veins and she just gets so worked up. The more worked up she gets, the more the veins constrict and the harder it gets. At one point it took us 1 1/2 hrs to get blood after they literally poked her on every limb and then her head. So after that, we found versed. We go to a lab that pretty much works with special needs kids exclusively and the versed has been a real miracle. I don't know if you're at that point but if it is super traumatic, you may want to ask your dr. about this. We didn't see any side effects and my dd wasn't traumatized afterward. -Amber

Thanks. My dd's ocd has been horrible lately.... I think we do need to get a second opinion. I e-mailed Dr. K about a month ago and he hasn't responded. I should probably send another..... I know he's busy. But I think I may do a consult with Dr. Lin as well since we're already patients of his, I could probably get in quickly. He is friends with our DAN! so I think he's been reluctant to step on toes and give advice because we just hired him as a pedi. But he really does seem to know about PANDAS and he's offering help if we need it. At the end of the day, I just need to do what's best for my daughter. Our DAN! has been able t oget my dd pooping daily, sleeping through the night, and has gotten her reflux under control over the 5mos we've worked with him. Those were all huge hurdles to overcome even they sound so simple so I am grateful for that. He's very methodical and likes to build a good foundation o I'm happy about that but we're also really struggling with these PANDAS symptoms. -Amber

We had a consult with Dr. Lin yesterday for my new baby but we ended up talking about my dd the whole time. He seemed very interested in helping us with the PANDAS and I'm considering working with him rather than our current DAN! He has helped my friend's son quite a bit for PANDAS and I don't see why he wouldn't be able to help with a steroid burst/ ivig. We've had good experiences with his office, it's just him and one or two nurses. But we've only used him for sick visits and basic pediatrics. I rely on my DAN! for almost everything so I rely haven't had a huge need to go to Dr. Lin a whole lot. He's a super nice guy and really seems to care about his patients.

So, did you scrap the spiro, or are you adding the LDN on top of that? We have an appt on friday with our DAN! and I'm hoping to get some help. The last two weeks have been awful for us...... I think clostridia and yeast are rearing their ugly heads. It really helps me to hear your progress. Please keep us updated on the LDN! -Amber

We've seen incredible results with flagyl as well. That stuff is powerful! My dd suffers from recurrent clostridia infections. We also saw huge gains from hyperbarics for the same reasons. We always have a regression after stopping though...... I can't seem to get the clostridia to stay away. We're about to start the flagyl again on friday.

I saw this info posted somewhere else and thought I should post it here since there has been a lot of chatter about probiotics lately. I don't know what to think, I'm still avoiding certain probiotics even though my dd has never reacted negatively........ I just don't want to take a chance right now because we're bad off anyway. Just passing this along....from Brainchild Nutritionals summer newsletter: Why Is There Strep in my Probiotics? Our Maximum Strength Probiotics include Streptococcus Thermophilus (S. Thermophilus). Customers often ask us why this is included. Sometimes people hear that streptococcal infections can contribute to some neurological disorders, they wonder why we would put S. Thermophilus in our probiotics, and whether it could possibly cause infection. Only one strain of Strep, S. Pyogenes, has been shown to cause immunological reactivity in PANDAS or ASD patients. The strain in our probiotics, S. Thermophilus, is fundamentally different, on a cellular level, than S. Pyogenes. S. Thermophilus has followed a completely different evolutionary path from S. Pyogenes and other pathogenic strains of Strep, and lacks fundamental elements that would allow it to be a pathogen. Important Facts About Streptococcus Thermophilus: S. Pyogenes contains a specific M protein, which autistic children have demonstrated an immune reactivity to. This protein is not present in S. Thermophilus. Of the more than 60 different microbial peptides that have been reported to cross-react with human brain tissue, none are derived from S. Thermophilus. The virulence factor Streptolysin O to which the human immune system produces Antistreptolysin O (ASO) to, is only expressed by S. Pyogenes, and has never been associated with S. Thermophilus. Therefore elevated ASO titers should not be considered indicative of the presence of S. Thermophilus. Not only has all the data indicated that both PANDAS and ASD are associated solely with S. Pyogenes, the evidence shows that no other species of Streptoccocus ever been implicated in either of these disorders. In fact, research has shown that S. Thermophilus, along with other probiotic organisms, may actually improve the body's resistance to pathogens such as S. Pyogenes.