Ozimum

Hi bcbmommy, I'd be happy to share dr info but sorry to say I'm in Australia - might be a bit far! But Our Biomed/DAN! doctor was trained by American doctors who travel to Australia to do workshops with practitioners here, so I'm sure you'll find someone where you are. I suggest you check out the Autism Research Institute (was Defeat Autism Now! hence DAN!)...they used to have a list of practitioners who asked to have their contact details on their website, (though they can't vouch for them). I don't know if they still have that list online, but if not it might be worth contacting the autism community nearest you as they may be able to direct you to a biomed doctor. (Keep asking around...some in the autism community may not be that familiar with alternative doctors, but there will be some who are.) I think there is a Yahoo Biomed group... you might be able to get some suggestions there? (There's a Yahoo Biomed group in Australia and I'm pretty sure there are others.) Otherwise you might be able to locate an integrated/holistic doctor - one who has done further training in something like naturopathy, homeopathy etc. Like everything, some are better than others, so ask around. If I hadn't found our biomed doctor when I did, I would have taken my son to a good naturopath. They just seem to get it! (I now see one for myself.) Good luck!

Hey great day! Enjoy! We got hit with PANDAS...totally broke my heart seeing my son disappear into OCD, soul destroying anxiety, intrusive thoughts... I had been very concerned for a while about ongoing infections from which DS never seemed to recover properly, but our Ped didn't want to know... (Grr...) You know that saying that everything happens for a reason?! - I'm so grateful that I then met a mum who talked about Biomed and that her kids with ADHD were doing so much better with supplements and diet. Her Biomed/DAN! doctor sounded like someone who might take my concerns seriously, so I asked for his name and we went from there. However, just as we were starting (we'd done some testing and had just got a diagnosis of leaky gut) DS got a strep infection and he had a full on PANDAS exacerbation - horrible! I just felt so out of control, unable to help him. Our now ex GP was no help; I actually think he thought I was crazy. (Crazy scared maybe! I was having panic attacks right along with my son!) Thankfully I was able get an appointment with our Biomed doc due to a cancellation (he's usually booked solid for months) and he prescribed antibiotics. I realise now that he'd probably had PANDAS for a while, but complicated by DS largely hiding the OCD, probably adding his anxiety. Thanks to our Biomed doc, I can say that for now anyway...I have my son back...the happy one I used to know, the one who talks to me and jokes, who doesn't just shut himself in his cave, anxious, hating everything and everybody, obsessing over contamination and purity, etc. And he's healthy. The day he volunteered that he felt as if a fog was lifting (his words) was brilliant! The improvements have been steady, and often quite subtle; I'm thinking about 90-95% improvement so far. So I'm celebrating too. Whoohoo! Long may it last!

Quote: "I wanted to add that baroque or classical music helps in our household when kids are fighting, and with focusing to get homework done, and with clean-up time." Tampicc, that accords with something I heard years ago - that baroque music is really good to play to improve focus (eg when studying) because of the rhythm/beat...it seems to be in some sort of sync with the body. Gotta pull out my Mozart CDs...

Hi Wilma, The following is from the pinned thread at the top of this forum...hope you find the answers you need. Cyber hugs to you. Resources for finding a doctor: 1. Contact ILADS.org and ask for listing of doctors in your area. http://ilads.org/ 2. Go to www.lymnet.org Flash Discussions / Seeking a Doctor Post a message titled such as "need llmd in Texas". You will receive personal message with names of doctors. This can be very helpful, as they will sometimes give you more detailed information, or have personal insights to offer about the docs. http://flash.lymenet.../ultimatebb.php 3. Contact the lyme support organization for your state / county / town. They can help you find doctors in your area. http://www.lymenet.org/SupportGroups/

Hi ladyd, So glad your appointment with the naturopath went well... Leaky gut is not uncommon - but good doctors who get the gut are as rare as hen's teeth! ditto appropriate treatment! Leaky gut makes sense given your son started so well with a GFCF diet. My son is also being treated for leaky gut by a Biomed/DAN! doctor, hence the gut healing diet, which GFCF essentially is. (He's also on supplements and some other stuff to deal with strep and staph in his gut.) Our family doctor was hugely skeptical of the test results, so much so that I changed doctors, and we won't be going back to the Ped either! (grr!) In addition to my son's Biomed doc, I found a local doctor who is also homeopath trained and has a great reputation for treating IBS. He was happy to be part of our team and we now all see him as our family doctor. Unfortunately, there are leaky gut doubters out there like our ex GP. I am happy to report my son's doing really well right now. (He also has a PANDAS diagnosis and strep is our enemy. I'm just working on keeping him as healthy as I possibly can.) It's good to get some blood work done. (Might also be worth asking for a stool test to get an idea of what's in his gut.) Also good to have a probiotic (- just check there's no dairy, some do.) Supplements are good - if he has any reactions, check the ingredients for colours etc. Sometimes it's necessary to change things around until you find the ones which work best. But hey...Congratulations on positive steps taken and results! Yeah! Well done you! Whoohoo! My edit is to say, probably clumsily but this is what I understand...something like 70% of the body's neurotransmitters are supposed to associated with the gut, also the body's immune system. If the gut isn't functioning properly, then there's going to be problems! The Biomed people talk about the brain-gut-immune connection...sorta important huh!

Hi ladyd, I think diet can help. My DS doesn't digest caseine (milk protein) but appears to be ok with gluten but we went GF and CF anyway to help gut healing (and slowly we've adopted a diet of low to no grains, no sugar, no potatoes...pretty much the paleo diet but with GFCF products like pasta 'cos he loves it. And he can tolerate soy milk.) We didn't see a rapid improvement, more slow but steady and the fog slowly lifted. (So GOOOOOD!) He's committed to the diet 'cos he feels better. (Yeehar!) So glad your son saw it too. Some kids respond to GFCF faster than others...I'll take any improvement! I've been wondering if there was any dairy in the gluten stuff your son ate? - like dairy solids in the bagel? cheese on the pizza? dairy solids in salami? dairy solids in margarine? and the cheese-its. I'm thinking that gluten stays in the gut much longer than dairy, so he might be reacting to the dairy...just a thought. Good luck sorting it out.

Whoohoo! So pleased you're getting somewhere! The lifting of the brain fog is so good!

Quote: "Maybe she didn't have enough serotonin?" Hi Peglem... It's possible... My reading of this on this forum is that high doses of SSRIs are problematic for PANDAS kids and our doctor's explanation as to why makes some sense to me. If some healing comes of a low dose then that's great, but our kids still have PANDAS... PANDAS16 is right on the money.

Our doc explained that a very low dose of an SSRI would only help if there's enough serotonin to work on. If there isn't you gotta wonder what the SSRI might do, especially with a high dose!

Hi! Thanks for asking...DS is healthy at present, but I feel like I'm constantly holding my breath, waiting. He's actually happy and says his intrusive thoughts have been sitting around 1/10, sometimes 3, worse in the mornings (I've been pondering why that might be!) and his OCD is at a low level right now, but not quite gone. He's still in treatment for his gut issues so things may continue to improve. He's just had some wisdom teeth extracted and I'm fearful of the potential for an infection (given his teenage lack of dental hygiene, despite the contamination/germ OCD - there's no logic at all!) so I've been getting him to do alot of salt water rinses, etc. (I so do not want to see another PANDAS flare.) Glad to hear things are better for your son...long may it last. Hope the answers keep coming for you and we see improved health for all our children...and that we parents can start living a little!

Hi, From what I understand, kids on the spectrum can have difficulty digesting gluten and casein which then break down to opioid peptides, hence causing problems focussing, etc. We discovered that our DS16 had gut issues (strep and staph) and wasn't processing casein (dairy protein) but had no problem with gluten. In order to help his gut heal, we've all gone on a GFCF gut healing diet to support him, plus it's really healthy. (I feel good!) We stopped dairy first and concentrated on finding dairy alternatives (such as nondairy chocolate! That was a biggy!) Then we steadily went gluten free as I found alternatives in the supermarket and health food stores. And slowly we reduced grains, and went organic, low sugar, no potatoes - pretty much a cave man diet of meat and veggies/salad/fruit, though we do still have GF pasta and soy milk products. Many on similar diets cut out soy and corn as well. Plus I cook with coconut oil. Result?...no big life altering stuff but DS is convinced that he feels better (he looks healthier), and can focus/concentrate better and he's committed to it. I think he's now more able to absorb what he's taking in (diet and supplements) as his gut is healing. Dunno whether this is PANDAS related or not...but they coincided for us.

Quote: "They are WHITE! I'm gonna see if I can snap a picture!" Check the pics on Wikipedia...Our (new!) doc just looks at my son's throat and says strep! http://en.wikipedia.org/wiki/Streptococcal_pharyngitis

Thank you LLM and NancyD for your thoughts. The antibacterial mouth wash is a good idea! And, reading the threads and links on anesthesia made me think we may have been really lucky with the last two anesthetists! Good info there. Ever feel amazed just how much info we find ourselves getting across because we have such vulnerable children? Talk about getting a PhD in life! Thanks so much for your input!

Thanks Vickie! Surgery is on Thursday...gotta tell myself we've got our bases covered!

DS has had two ops before - appendectomy and knee, but before PANDAS. He handled both well and I was not this much of a worry wart then! I've not mentioned PANDAS to the surgeon - I got as far as gut issues and I could see that was enough for her. I'm not sure that Vicodin is available here...I don't recognise any of its trade names. I'm expecting he'll be given a paracetemol type pain killer such as Panadol (which I think is like Tylenol) or Panadeine, possibly even Panadeine Forte. Whaddya reckon? If I get myself in a right tizz over this there won't be a problem???!!

Thank you Vickie for responding...can you tell I'm shaking in my boots? DS been ok with the orthodontist for a while now, but with this op I'm terrified of the potential for another strep infection (or anything else for that matter). I have to trust that all the work we've done with his DAN dr will pay off, and he'll coast it in, but I do want to head off as much as I can and be ready should things go pear shaped. Good point about the Ibuprofen - I'll check on that. Thanks!

Hi, My ds16 is to have two impacted wisdom teeth out under general anesthetic next week...unfortunately they have to come out. Our DAN dr has recommended he takes buffered Vit C for a week before and a week after surgery, which we've started. (Any suggestions as to dosage?) He has also recommended he be put on Erythromycin (from which Zithro is derived) and the surgeon has no problem with that. (Ds is being treated for leaky gut so we want to avoid the big guns like Augmentin in order to maintain the good work already done.) Meanwhile I have everything crossed and I'm having palpitations just thinking about it! Anyone been here? I would be so very grateful for any advice. THANKS!

Quote: "2. she would not be reacting so well to the antibiotics if it was PANDAS" Hi and welcome! NonPANDAS OCD does not respond to antibiotics last I heard, but I'm no expert. And I don't think choreiform movements have to be present to get a PANDAS diagnosis...but strep? Yes! As for the extended period of OCD symptoms...can you remember sore throats, ear aches which may have coincided more or less? This is such a new condition and the people on this forum are at the front lines of the battle against it...so you are in a good place. Even those doctors who have heard of PANDAS may be following very conservative advice. Hopefully that will change soon. I am glad your doctor is open to the idea of PANDAS...Perhaps she could be convinced to a consult with one of the PANDAS experts? If you haven't already, go through the pinned threads at the top of this forum...lots of good stuff there, including the academic studies which you could send to your doctor. My Edit is to say: It's frustrating but we may well find ourselves having to educate our doctors on this, and when they don't move ground then we have to move on to one who gets it. As for the doubt...I think that comes with the territory. I doubt myself the whole time and that's why this forum helps! Good luck!

Hi Patty, I make this just for my 16yo son and he eats it happily. I did a fruit version as a plum pudding icecream for Christmas (It's HOT here at Christmas!), and he was rapt - I added cocoa for colour as well as taste. Just adjust your ingredients as you want eg if you want it sweeter. I adapted this from a recipe I found on the internet. Easy Non-Dairy Ice-cream: Combine ingredients in a saucepan: can of coconut milk, 2 eggs, 2 - 3 tablespoons of Xylitol or honey (more or less, to taste) or other sweetener, ¼ - ½ cup of water, ½ teaspoon vanilla (could be omitted). Gently heat through mixture for about ten minutes, stirring well, but don't boil. Taste and add more sweetener if desired. You could add some nutmeg to taste (optional). Pour into a container and freeze. Stir through with a fork before completely frozen and refreeze (but I tend to forget!) Variations: - Add 1-2 tablespoons pure cocoa powder (if tolerated) and whisk well while heating through. - Or, beat in any of the following after heating through the other ingredients: a mashed banana, or berries, or grated coconut, or broken up roasted nuts (if tolerated.) - Omitting the eggs would probably make more of a sorbet...? Experiment!

Hi Emerson, This is just a thought...may not apply, but just in case... A dear friend has recently been diagnosed with fructose malabsorbtion. She was on a gluten free diet (Coeliac) and had been in pain for ages, couldn't never figure why. Here at a local uni (Monash) they've come up with the low FODMAPS diet (acronym). As I understand it, it's about the balance of fructose (the F in FODMAPS). Things like pears (in lots of juices as filler) and onions, for eg, which are supposed to be high in fructose can play merry havoc with the gut and bowels. I've heard an estimate that about 10% of the population could suffer from fructose malabsorption...an interesting claim. Anyway, once my friend eliminated those foods the pain stopped and she's been as well as I've ever seen her. Otherwise, a probiotic might help? Hope it clears for you soon. Hugs from Oz.

Quote: "In addition - I am my child's only trigger when it comes to one weird OCD thing - eating/swallowing - he cannot stand to see or heard me swallow, eat, cough, clear throat, sniffle. I really feel that it is because he is closest to me. No one else bothers him. While I manage to live with this very annoying thing (my friends think he has it made - since I deliver his dinner to him in his "man cave" and he gets to eat in peace by himself every night!). It hurts me more than him. Since ivig this is really the only noticable thing he has left. I still notice other little things - but they are almost subclinical." Oh norcalmum...I just had to respond...on and off my ds has problems with eating/swallowing too. He is also upset by a number of little things my husband does, such as smack his lips, or flick his fingers. And he takes his breakfast and some lunches in his "cave" too, and sometimes he'll avoid the joining us for our evening meal. He can't stand certain words. I've got to believe he cannot help it, and I've noticed that when he's well it's easier for him to tolerate. (add that to contamination OCD, anxiety etc.) It's these things which never seem to go entirely. Ozimum

Hi Jas, It would be wonderful if your osteopath has had experience with PANDAS/PITANDS. (The urinary urgency is yet another symptom.) An integrated approach may well be helpful. This is very stressful and it helps to find a health practitioner who has had some experience in diagnosing and treating PANDAS/PITANDS and in whom you both have confidence. Those neuropsychiatric symptoms are a real worry - you don't want to muck around here. You may need to see a number of doctors before you get the answers you need. (I saw it as "interviewing" them! Not everyone is going to be on the same page!) You may also find you develop a team of people who help in different ways. If you haven't already, do read the pinned threads at the top of this forum. Good luck!

Hi Shadowtails, I so sympathise! No one really knows what you and your dd are going through, until they experience it first hand. I've never thought to videotape it...that might have helped our now exGP to understand that it wasn't in my head...my ds could hold it together in his surgery but then go to pieces afterwards! Grr. Problem is, I doubt that my ds would ever let me videotape his meltdowns either. They really stress me out, and it doesn't help not to be believed. The problem is this is such a 'new' condition and until it's more widely accepted, people like your fil will continue to be doubters. You can try to make this clear that you need his support not his doubt and his current attitude is a distraction. (I've been known to cut off contact with family so I could deal with the urgent stuff...too many sleepless nights without them adding to it!) Hang in there! Maybe print off the stuff in the pinned threads and suggest that he takes on the role of researching this condition... Big hugs to you!

Soy maybe?

Hi Jas, Welcome! I'm so sorry you are going through this, but you've found a good place...there's plenty of good advice and support to be found here. As you are in England, one avenue to try is is to look for a DAN!/Biomed doctor through the Autism.com website. (Your son does not have to be on the spectrum.) Our experience in Australia is that the DAN docs are more likely than the average doctor to have some knowledge of PANDAS and hence some clue as to how to treat it. The website has a list of doctors internationally who have asked to be included on the list (see Disclaimer). I don't recall seeing anyone on this forum who lives in the UK mention a PANDAS knowledgeable specialist in the UK, or at least not in the past few months I've been reading this forum. But that doesn't mean there isn't one to be found... I'd start with the Autism communities in England and see if anyone knows someone. If you do find someone, it would be great if you added their name to the pinned thread listing PANDA knowledgeable practitioners...a resouce for the next person who needs it! Keep reading this forum and keep us posted. Perhaps others here can chime in with ideas as to how to find PANDAS knowledgeable doctors in England? My edit is to say...you could try doing a phone consult with one of the PANDAS docs in the USA, or convince your doctor to consult...