Ozimum

Hi, We have inositol on our shelf in case our DS17 needed it during his recent exams. Our Biomed/DAN! dr recommended it for any upswing in anxiety, but it didn't happen. (The dr suggested a dose of 1/2 teaspoon per day for a week or two.) I believe it has a similar effect to an SSRI (important to know if your DS is on an SSRI - you don't want to over do it.) I also wanted to say we've had good results from seeing our Biomed dr. My son has mild Aspergers and co-morbid anxiety and OCD. We also know that a strep infection also ramps up those symptoms, so he has PANDAS too. (I don't know what came first - I'll probably never know.) We discovered through testing ordered by our Biomed dr that our DS had Zinc and Vit D deficiencies and gut dysbiosis. With treatment and a GF/CF/ and low grain/potato/sugar diet, I am happy to report the OCD and anxiety have been steadily peeling away, he's healthier, finished his school year with distinctions and he's happy!...I have my son back! We are still dealing with the occasional strep infection but we jump on it fast. We're hoping that as his gut heals and his immune system is stronger he will be better able to deal. So far so good. If you haven't tried a good DAN! dr, maybe that's a path to try. Methylation issues would also be something such a dr would consider. Your son does not have to be on the spectrum to see a Biomed/DAN! dr. Hope things turn around for you soon.

I so feel for you and your boy. If it was me I'd be taking the earliest appointment I could get and I'd want him on a higher dose asap. You are not imagining this and imho it's better to not wait.

We decided not to risk it and refused nitrous oxide for ds when he had his wisdom teeth out. Here's a link to an article written by an anaesthetist on autistic kids and anaesthetics. http://www.autismone.org/content/anesthesia-autistic-child-sym-c-rankin-rn-crna Edit to say: we asked for sevoflurane instead and had no problems.

I’m still trying to get my head around biofilms. This is what I understand so far... Colonies of bacteria etc can be found as a slime called biofilm – an example is dental plaque. The slime provides an environment which increases resistance to antibiotics. I understand that macrolide antibiotics have some traction against biofilms, whereas antibiotics like amoxicillin do not. These biofilms can be found in the mouth, in the sinuses, tonsils, middle ear, urinary tract, and gut. The following is from Wikipedia: http://en.wikipedia.org/wiki/Biofilm "It has recently been shown that biofilms are present on the removed tissue of 80% of patients undergoing surgery for chronic sinusitis. The patients with biofilms were shown to have been denuded of cilia and goblet cells, unlike the controls without biofilms who had normal cilia and goblet cell morphology.[26] Biofilms were also found on samples from two of 10 healthy controls mentioned. The species of bacteria from interoperative cultures did not correspond to the bacteria species in the biofilm on the respective patient's tissue. In other words, the cultures were negative though the bacteria were present.[27]" What do you conclude from those last two sentences? I’m thinking I have more questions than answers at this point...

Thanks for posting. Gives a little hope, doesn't it.

Maybe it has something to do with biofilms???

umm...Isn't crypt debris in tonsils a biofilm? Doesn't that have implications for the type of antibiotic used to treat?

Hi Wombat140, I believe that there are a couple of well respected Homeopathic hospitals in London. (I have an idea that the Queen has a link to one of them? or sees a homeopathic doctor? something like that!) So I reckon you should be able to find someone who can help. You could try searching under the following terms: integrative doctor, naturopath, homeopath. Dieticians are sometimes on the ball with allergies/sensitivities due to food. You could also try the Autism Research Institute (ARI) website for a list of practitioners in England - the DAN! practitioners tend to be more integrative and may well be able to help you organise testing. (Also on the ARI website there's useful info on finding a practitioner.) Good luck.

I understand that allergies and sensitivity are different. DS17 does not have allergies, but tested moderately sensitive to milk, but not to wheat. Stool testing also found overgrowths of strep etc in his gut (we had no idea!), so we decided to go GF/CF/low grains/no potato/low sugar in order to reduce inflammation in his gut. I understand that casein stays in the gut for a few days, while gluten stays in the gut for a couple of months. We decided to try the diet seriously for 3 months and see what happened. DS responded very well, even 12 months later he continues to show improvement. OCD continues to peel away. He says he feels better and can concentrate and focus and he’s so-o-o much happier. And my skinny teenager has actually put on weight – yes! on that diet! (I believe it’s because he is now absorbing his food better than previously.) I try to think in terms of what he can eat rather than what he can’t. And there are lots of gluten free foods available now. We also discovered DS had a high pain threshold, probably because gluten and casein were broken down incompletely to opioid peptides. It also meant that he was unaware of ear infections!(aarrgghhh!) A mum of an ADHD/Aspie kiddie told me today that having embarked on a similar diet (after Sue Dengate) only a couple of months ago, she now believes her ds would no longer qualify for the ADHD diagnosis, and possibly the Aspie one as well. (He does not have PANDAS.) She now brings to three the number of mums I know who believe diet has helped with ADHD. I certainly think it’s helped my PANDAS/Aspie. (I find it very difficult to separate the two – the diagnosis of both came one on top of the other last year.)

Hi pandas16, Actually, I know two personally - a 20 year old whose father worked hard to "recover" his son through Biomed and other interventions. He's in college and doing well! Another is a boy aged 12 who recently thanked his mum publicly at a meeting I attended for doing all the interventions which have meant he is now in a mainstream school without aides and doing so well. The medical establishment had given up on them but their parents didn't.

Sent you a PM. Also, the improvements we've seen have come slowly but steadily. We've done Biomed for over a year now and we are still seeing improvement.

Hi cab40, Have you heard of the DAN! doctors? Dr Kenneth Bock is a DAN! dr - Defeat Autism Now! (and I too can recommend his book. )The DAN! Drs are a loose group of doctors supporting parents trying to find helpful treatments for their autistic kids and they pooled their knowledge, including on PANDAS. In Australia we've been very lucky to have wonderful Biomed doctors visit from the USA to train our Biomedical practitioners. A DAN! (or Biomed) doctor has helped us enormously. If you haven't yet found a dr, I suggest you visit the Autism Research Institute and check out their listing - Like everything, there are good ones and some not so good, so be prepared to shop around. I don't know if there's anyone in your state, but the ARI website might be a good place to start. Good luck. As to what came first - PANDAS or Aspergers I can't say, but I'm watching the "Aspergers" (PANDAS?) stuff steadily peel away as we continue with Biomed protocols and I'm hoping that sometime in the future that diagnosis will no longer apply. What residual stuff we'll end up I cannot guess, but my son has his "happy" back! Yay! And he's doing well...normal teenage behaviour here mostly. He still gets strep but we're managing it so far.

Hi TH, Just a thought, having just read a post on the mutism thread... the discharge could be a result of bacterial conjunctivitis? That could be strep? I'm thinking maybe the redness is consistent - check the photos on Wikipedia.

Hi JP, My son has PANDAS and he takes a probiotic which has S. thermophilus in it with no problem. Some kids do seem to have problems with it, not sure why. Kids on the spectrum can be very sensitive, and so much of what we do with our kids is based on trial and error and the principle of go low and slow. We've also had good results with dietary changes to support gut healing and we've been encouraged to eat plenty of fermented veggies, so kimchi would be ideal if tolerated. If I were you, I wouldn't discount it until you were sure that you do react to s.thermophilus - go low and slow until you know!

Welcome to the forum and I'm so sorry you've needed to find us. You are NOT crazy. Your child's story is a lot like my son's, except he was older at onset...history of ear infections, sensory issues, nothing was right, angry with me and the world, OCD, drop out moods, etc, etc. And yes, he could hold it together at school, at doctor's appointments and then completely lose it as soon as he felt safe - in my car, or at home. Just getting through the day took a huge toll and he needed time out...any pressure from us at home and he would melt down. The key is getting the right antibiotic for your child and for long enough to wipe out the triggering infecton, as well as modulate the immune sytem and reduce inflammation. For us that means a macrolide such as erythromycin - others use zith, azith, etc. If your child responds well to an antibiotic, you will know you are likely in the right ball park of PITANDS or PANDAS. Nurofen/Ibuprofen may provide some temporary relief in reducing inflammation. If you haven't already found them, on the top of the page with the list of message threads, you'll find two threads -a list of abbreviations etc, and a thread of useful info. Somewhere there you'll find a list of doctors known to treat PANDAS, and tests which could be run to give you a fuller picture. This forum is a haven - you will find support and help here, sometimes conflicting - everyone's journey is different. Read it, research it and decide how best to proceed for you and your child. Good luck.

Hi, I'm a fan of Biomed/DAN! drs and I don't like to think where we would be without ours. (My personal hero!) I've read the book and heard Dr Bock speak recently and thought very highly of him and I recommend his book. He said he hopes to update it soon. My Aspie/PANDAS ds17 has done very well on Biomed protocols. I was shocked by the initial results of blood and stool testing indicating vitamin and mineral deficiencies, a dairy sensitivity, gut dysbiosis and leaky gut. We adopted a gut healing diet (GF/CF/etc) and he committed to the biomed protocols. Twelve months later and recent testing has confirmed the progress we've seen. He's healthier, happier, much more focussed and most of the comorbid symptoms have gone or are fading. (Whoohoo!) Strep still does a number on him but we have Biomed drs who know what to do, so we've been able to manage it. Our family dr has also done DAN! training and he backs up our Biomed/DAN! dr. I feel blessed! A friend who has a young son with a diagnosis of ADHD has recently discovered he has serious food sensitivities...seems right in line with what Dr Bock says. Another friend reports her ADHD kids do much better on the diet and supps than off. So yes, I'm a believer!

I feel your pain...and for the record I hadn't noticed any grumpy tone. Just wanted to say that I get it and I'm right there with you! I get so tired of being constantly on alert, trying to make sense of what I'm seeing with DS, trying to stay one step ahead, having discussions with our new family doctor about the right antibiotic (- he's not quite there yet - still thinks Amoxycillin is cutting it when it obviously isn't, but at least he's prepared to support our PANDAS dr...), constantly reading and researching, talking with each of the members of our team, micromanaging... We've had strep in the house and this time we're managing it ok, but my head goes right back to a year ago when we were in crisis. Talk about PTSD! We gotta take some time to look after ourselves. I have some confidence in a Naturopath who keeps me reasonably well and together. I see a psychologist regularly because I need someone who can just listen, who gets it and can offer some sort of perspective. I've developed a network of mums who "get" some of this and I can call up to vent. I find when I'm down I must change the pattern of my day - I walk the dog, I walk to the shops...pull weeds in the garden instead of moping on the computer... Even just doing some house hold chore which I'd rather not do because I feel so down - I have to I make myself do it! And, I feel better for having done it! So yes...I get it. Hang in there - you are not alone. No guilt!

Hi and welcome! For us the main signal that strep is back in our house is the rise in anxiety/OCD/intrusive thoughts...so in their absence I too would be wondering if something else is at play. I'm responding to your post because in the last couple of days I've had conversations with some mums (I'm Australian - our spelling is different!) whose children have ADHD diagnoses. Yesterday one of them got test results back to discover her son has strong food sensitivities - in particular wheat/gluten, dairy and eggs. This is in line with what I've been reading about for many kids with ADHD. Another mum I know says the dietary approach has helped her ADHD kids hugely. (It's certainly helped my Aspie/PANDAS DS.) So if I were you, I'd be heading off to a good Biomed/DAN! doctor and getting some testing done. A good DAN! should know the protocols for PANDAS too. A good book - Dr Ken Bock: "Healing the New Childhood Epidemics. Autism, ADHD, Asthma, and Allergies. The Groundbreaking Program for the 4-A Disorders." I hope you can get some answers.

Hi, I'm in Oz too - in Vic. Have you considered the Biomed/DAN! drs? - they should know the protocols. If you go to the MINDD website, you will find a list of practitioners which you can search by state. I'll private message you with a name of a Qld Biomed dr whom I respect. So sorry your son is going through this...we have strep in our house at present, but having a Biomed dr on our team has been heaven sent. Hang in there - you are not alone. Sorry- Edit for typo!

Hi, I know I bang on a bit about Biomed/DAN! drs... If I were you, I would be heading off to see a good one. They tend to take a dietary approach, looking at nutrient deficiencies. A good book is Dr Ken Bock's "Healing the New Childhood Epidemics. Autism, ADHD, Asthma, and Allergies. The Groundbreaking Program for the 4-A Disorders."

"Ozimum -- Can you tell me the name of the test for leaky gut/gut dysbiosis?" Hi Christianmom, My son's Biomed dr ordered a Faecal Microbial Analysis done by a lab here in Australia called Bioscreen. I believe there are other tests available (PEG) but this is the one our dr used to determine how to treat. A good Biomed/DAN! dr should be able to organise something similar near you. (You might look at the web pages for your local labs to see if there's something similar.) Alternative practitioners like Naturopaths also seem to be aware of leaky gut/gut dysbiosis and may be able to assist. I hope you find some answers. Edit for typo (pesky things!)

Hi, We started our now 17 yo ds on a GF/CF gut healing diet about 12 months ago. He is very sensitive to dairy but nothing else. His Biomed dr diagnosed leaky gut/gut dysbiosis - testing revealed virtually no E.coli (where there should be plenty) and overgrowths of strep, staph etc. I had not noticed any gut symptoms before this, other than the very occasional bout of constipation or diarrhea. I was more concerned about frequent colds and ear infections. (This was before PANDAS dx.) In order to get his gut back to some sort of health, we went GF/CF, low grains, no potatoes, low sugar etc, along with vit supps and probiotics (including E.coli). Within about 2-3 months he saw improvement in his ability to focus and concentrate...and said as much again last night - he committed to the diet because he saw it was doing him good. We're all healthier for a diet of meat, veggies and fruit...much as I ate as a child on my parents' farm. I understand that the things we've cut out and gone low on tend to be inflammatory in the gut. My skinny son has put on 5 kg in the last 4 months (whoohoo!) His latest stool screen result made me want to do a happy dance...it confirmed the improvements we've seen! We're staying on the diet! In terms of PANDAS, I think the benefits of improving gut health have been in the flow on effects to the immune system and the central nervous system. My son has had fewer colds and when he has developed a strep infection we've been able to jump on it with targetted antibiotics. He's healthier and happier.

Hi, The history of ear infections rings PANDAS bells for me...and that the symptoms come and go and appear to be linked with an infection. My DS has PANDAS. Good luck with your appointment on Tuesday. Sounds like you're on the right track.

Hi, Welcome to the PANDAS forum. In terms of trying to find someone in the UK who knows about PANDAS...I'm thinking that the Autism community is probably your best bet, whether or not your DS is on the spectrum. The DAN!/Biomed trained doctors are likely to know the protocols. My DS sees a DAN! here in Australia and he's my hero - our now ex GP was no help at all, and was openly hostile. It's good your doctor is open to the idea of strep being somehow involved. On this forum there has been lots of mention of teething issues linked to PANDAS symptoms. Strep can hide out in a number of places in the body. If you go to the Autism Research Institute website (link below), you'll find a list of DAN clinicians, including several in the UK. Do also read the advice given for finding a clinician and the disclaimer. It would be a good idea to ask around within your local Autism community for a good DAN! - Don't be put off, as not everyone in the autism community will know about the DANs, but keep asking. http://www.autism.com/pro_danlists_results.asp?International=true Good luck! Edit to explain - DAN! stands for Defeat Autism Now!

Being in the southern hemisphere, the seasons are reversed for us. Our big risk time is July/August (end of our winter) when the colds and flu do the rounds, and we had strep in our house again this July. Summer is much less a problem - when it has been (before PANDAS diagnosis) I suspect DS hadn't cleared a strep infection from months before.