Ozimum

Hi Lisa, It's great you're seeing your dr tomorrow. When my ds was at his worst with strep (OCD, anxiety) nothing got through to him...all the reasoning in the world did not work. Nothing I did seemed to help...and feeling helpless I would then have panic attacks along with him! (My son is 16! - that has its own problems.) When he's better all the work his psychologist does with him pays off, but not when he's sick. And that's the point...these kids are sick. You'll find other fairly recent threads here which discuss just this. Hang in there.

Hi musicbuff, Welcome! I'm so sorry your dd is going through this. But it's good you are onto it! There are plenty of very knowledgeable people on this forum who will try to help. I suggest you go through the pinned threads at the top of this forum, which includes a list of PANDAS knowledgeable doctors, and links to useful articles and other resources. There are a number of new members who've started threads in the last few days and you will find help there concerning the sorts of tests to order. Antibiotics have been found to be helpful with PANDAS, so don't be afraid to go there. It's possible your dd wasn't on antibiotics long enough to properly clear the strep (or whatever set off those symptoms). Hang in there. Keep us posted.

For those that have done GF- am I correct in that it will take atleast 4 weeks to see any change?? Hi Leslie, We see a DAN!/Biomed doctor here because my ds has gut issues - I had no idea he had any. I'd been concerned about his immune sytem, but we found strep and staph in his gut, where they shouldn't be...hence the GFCF plus gut healing diet, and supplements, probiotics and enzymes. Many on the autism spectrum have gut issues resulting in difficulty digesting gluten and casein, which then break down to opioid peptides. This affects things like focus and concentration, and to make things worse our kids often crave these foods! For those with casein sensitivity, the effects of removing casein can be seen within a few days. Gluten takes longer to remove from the gut...I understand it to be months, not weeks. For us the changes have been subtle and steady, others claim to see more effects and sooner, others see no changes. My son is particularly sensitive to casein and he knows that he feels better (more focussed) without it in his diet, so he's committed to no dairy products at all, including icecream (I make a coconut milk alternative...it's easy!) and milk chocolate (big sacrifice! but we can get gfcf chocolate!) He can tolerate soy cheese etc, but many can't tolerate any soy at all. Some find other grains such as corn, even rice can be problematic. Oh, and we're pretty much sugar free too. His gut is healing and he is better able to absorb the vitamin/mineral supplements etc he's taking and he's so much happier, healthier, has more energy, doing well at school...and much less anxiety and OCD! Something is working and I think it's the combination of things we're doing. I think keeping a log is a really good idea - you may well see patterns developing. Gluten may or may not be an issue. If you haven't already, do have a look at other threads such as KevininMA's Detox Diet - Blogging Our Journey. Keep us posted.

Quote: "With regard to the gluten free - what about bread? I have seen in the supermarkets here some vacuum packed bread and rolls - havn't gone as far as buying them yet - is there much difference in taste?" Hi Sal, It is hard to replicate what gluten does in bread, pasta and cake etc, so you may find you have to try a few different brands until you find one you like. They are different. (We have one with quinoa seed which is really nice.) My ds loves pasta so we make do with the gluten free pastas, but he doesn't actually like bread or any cereal, so breakfast is the meal most affected ...I had to re-educate my brain into thinking it was perfectly ok for him to eat lasagna for breakfast! (gluten free and dairy free!) I make lots of it (with loads of grated vegetables in the meat) and freeze it in portions just for him, so I know that what he's eating is healthy. Otherwise he can eat eggs or baked beans for breakfast! We also make lots of salmon bake, tuna mornay, spag bol with GF pasta and GF flour etc, etc...all frozen in portions (with no dairy in our case.) He won't starve! Other meals are basically meat and veg/salad, fruit. I've just found a source of gluten free pizza bases and gluten free pastry...haven't tried those yet. It can be done!

Qoute: "She told me that you have to get all new utensils, toasters, pans, etc. so you do not cross contaminate= this seems a bit much. Is this the case. I already went to Whole foods and have to say I am really overwhelmed- things you would assume are not Gluten have gluten- I guess you have to check everything unless it says GF." Hi Leslie, First...Don't panic! There are some who will tell you that about using different utensils...for those who are VERY sensitive to gluten. GFCF diets are useful for kids who have gut issues and hence problems digesting gluten and casein. Some find going gluten free/dairy/casein free/soy free/corn free/sugar free helpful too, as well as eliminating colors etc. If you want to try a gluten free diet just start by steadily eliminating foods with gluten and substitute gluten free grocery items as you find them in the supermarket or healthfood store eg gluten free pasta, and just work up to total gluten free diet. It will take months to get gluten out of the gut anyway, so it has to be seen as a long term endeavour... but it can be done. And many say it is a healthier diet. You could also perhaps consider enzymes and probiotics. It helps if you have a health practitioner to help you. But, before going down that road, it might be helpful to have your son tested for food sensitivities first...gluten may not even be a problem! Good luck!

Hi again TH...Maybe it's a gut/immunity and neurotransmitter connection? As per another post on your other thread, I'm thinking it wouldn't hurt to see a Biomed/DAN! doctor - We've been getting some good results. Anxiety has dropped to 1/10 and we're half way through treatment! There is a place for the right psych meds but in an integrated approach is my preference...it seems the gut just doesn't register for alot of doctors.

Hi again. It is short acting for an antidepressant/antianxiety med...often they take weeks to kick in. I recently found a GP (Biomed/DAN! trained) who is also a homeopath who has a reputation for doing wonders with IBS. Can't help thinking that such integrated doctors have a better handle on some of this stuff.

Quote: "Wondering-- does anyone else notice that their child can hold it together for relatively long stretches when they must-- then meltdown/deteriorate again at home? Dd's always done this. Not that she's always "herself" out of the house, but she can usually pull off seeming functional and sometimes almost "normal." Can get through some outings, has managed schooldays when she wasn't homeschooled (her teachers could tell she wasn't okay/herself, but she could get through the day). Afterward, the time at home is usually intensified-- like she's filled herself up with everything she couldn't let out while she was out in the world, and she just bursts and purges it all once she's back here. Anyway, just wondering if others have seen this, or if it seems atypical, or..." "We held off on the Azith while the stomach bug was running its course. I didn't give it yesterday b/c she was so eager to have this playdate and I didn't want to risk it irritating her recovering gi tract (she's got a very sensitive gut as it is-- had a gastroschisis at birth, a few months down the road ended up with septicemia and had a section of necrotized small bowel removed). So, we'll start it today and see what gives." Hi thenmama, YES! My ds can hold it together - particularly in the doctor's surgery, while I'll be the one falling apart! I'm convinced our now ex GP thought I had completely lost it and my son's only problem was his mother! But what he didn't see was him falling apart in the waiting room afterwards or in the car going home! Is your dd having ongoing treatment for her GI tract? Can't help but wonder if some of what you're seeing is related?

Hi Thenmama, I'm so sorry that your dd is going through this...it's so hard on everyone. Just a thought about the Xanax... It probably won't kick in for about a week. Do read the blurb that came with it, if you haven't already and just be wary of any adverse reactions. Hope things improve soon.

Fixit, I'm a relative newbie to this forum but I wanted to say how much I feel for you. Stay strong, you can get through this. Take care of you too. 3boysmum, Oh gosh... I've had those panic attacks when I felt completely overwhelmed and things seemed just so wildly out of control. I was given a script for antidepressants but decided to go a more natural path through a GP who is a homeopath - just felt that was a better option for me. I figured I was stressed out of my tiny brain and I wouldn't have been but for all the traumatic stuff with my son. (Someone suggested I had Post Traumatic Stress Disorder...just without the Post!) And I feel much better, especially now I have someone I have confidence in helping my son. You know you are on the right path.

Hang in there! Cyber hugs coming your way. Ozimum

Hi Joan Pandas Mom, Just a thought...is it possible there are gut issues responsible for the weight loss? We went to a Biomed/DAN doctor and discovered our tall and skinny 16ds couldn't digest dairy. He had virtually no E-coli in his gut (where it should be) and it had been replaced by strep and staph! No wonder! Biomed protocols of gut healing diet, probiotics and supps have helped enormously and the OCD is slowly dropping away! He knows this is working for him. I forgot to mention we also had a targetted combo of abx for the strep and staph.

Vickie - Thanks for posting that. I find it very interesting indeed. My son's DAN dr has had him on combo of EPA/DHA for a few months now (along with a swag of other supplements) and his mood has improved hugely. I can actually say I have a happy boy. So something is working for him! Ozimum

quote: I see a HUGE difference with respect to the number of infections DD gets. When her numbers were very low (7) she was getting one infection after another. Now not so many. NancyD ... I agree - that's our experience also. Now the levels are coming up ds has been really quite well and he recently shook off a cold in a couple of days (with the help of OLE and Vit C.) All our family are now having regular blood tests done for Vit D and all were found to be very low initially, including my elderly father who is on the brink of dementia. (I had to talk his doctor into ordering the test and he was taken aback at how low it was.) There are studies around linking dementia in the elderly to low Vitamin D, so I don't understand why his doc hadn't gone there as a matter of routine. Unfortunately there is still alot of resistance to what has to be basic health care. It's probably fairly normal for Vit D levels to be low coming out of our winter, but how low can you go?! Here in Australia we've soaked up the sun smart message to protect our skin from the sun's UV rays but obviously we can take it too far. Ozimum.

"SHE IS OK NOW" That is such good news! Whoohoo! "Dr. L also reiterated that the cat is out of the bag on Strep and OCD. She said that doctors all over the world should be diagnosing PANDAS soon and administering steroid bursts, Augmentin XR, and IVIG where warranted." And so is that! Thanks for posting!

"I sincerely hope our understanding of the root cause of ASDs is close." Hi T.Mom, I so echo that sentiment! I'm convinced that there's a broader spectrum and ASD is one of the conditions on it. And I'm so-o-o-o grateful there are doctors and researchers across the globe who are sticking their professional necks out for our kids! Cheers! Ozimum

Hi jj notts - In view of the suddenness of the onset of these symptoms it sounds like PANDAS to me - If there's a PANDAS specialist in the UK you need to get your daughter there - Don't mess around with GPs etc who don't have a clue. Biomed/DAN! doctors are much more likely to have heard of PANDAS, if our experience in Australia is anything like the UK. I think the ARI website may list international doctors. Do please go to the PANDAS forum and go through the useful pinned threads at the top - there's plenty of useful info there. You will find many knowledgeable people over on the PANDAS forum too. Good luck! PM me if you'd like. Ozimum

Hi Kim, Dr Robyn Cosford is the Australian expert on PANDAS (and is very interested in chronic fatigue also, I believe.) If you check the bibliography of that article you'll find she is collaborating with others in Australia, including the biomed practice we attend with our ds. Ozimum

Hi Pathfinder, I'm so with you...my ds is 16 (going on 26, going on 3!) We have invested so much of ourselves in these kids and letting go is very scary. As mothers we'll always worry! Keep the communication lines open and you will find the balance. You've done the most amazing job! What a brilliant mother!

We've all gone gluten free and dairy free as part of a gut healing diet and feel loads better as a result. My 16 year old son didn't show up a sensitivity to gluten but he did to dairy. I understand that he cannot process casein, the milk protein, so we're really vigilant about that. (Works as an opioid...hence the fog!) We went to a DAN! doctor because I was so concerned about his immune sytem - he caught every cold going around and he was getting so much worse each time. That's when we learned he had strep in his gut. I had no idea that his occasional bouts of diarrhea/constipation were due to a leaky gut until then. I believe it's all connected.

You've been in my thoughts. I'm so sorry this is so rough. You know you are amazing, don't you - you're still in there battling for your son! You WILL get to the bottom of this. You are dealing with multiple layers of issues, and it's really good that are already heading down the Lyme road. My two cents for what it's worth is don't forget about boosting his immune sytem and sorting out the gut issues.

Me again...about those gut issues? Any progress? We're working on so many battle fronts with our kids, I get lost with it all... But I wanted to add that my son also has gut issues which I'm almost certain are related to his OCD. Have you been to a DAN! doctor? A good one will order stool testing for strep, staph, yeast, etc, etc, as well as blood tests to check for deficiencies. My son had no e-coli in his gut, which was replaced by strep and staph. Not good! No wonder the neurotransmitters were going haywire. He also found ds wasn't processing casein and since then we've all gone on a gut healing diet (lots of veggies, GF CF, low to no grains, organic, no sugar) and we all feel really well. I'm determined to take this seriously because his OCD is the PITS! It's been slow and steady improvement, with ongoing treatment, and the supplements, probiotics, and enzymes, etc aren't cheap, but I'll go without shoes! Apologies if you have already gone down this road...

Hi sk8rmom, DAN! doctors treat kids on the Autism spectrum for a number of issues, not the least of which are gut problems, so they're kid friendly and knowledgeable. My confidence lies in their testing to find out what is going on and treating accordingly. Constipation and/or diarrhea mean digestion is out of whack! But why? To find a practitioner near you you could try a website like ARI (Autism Research Institute) which has a list of practitioners. (or an integrative doctor maybe?) It always helps to have somone recommend somebody good... Maybe someone on this board could help? (I have a preference for a doctor who can order the tests and write the scripts.) I hope the therapist can help your son...we've had a psychologist working with our ds who has helped him find some strategies. But for us, the biggest thing has been to have his whole body working as well it can. Good luck!

Keep that man! He's a gem! I'm so glad you got some time out.

Dear Fixit, I hate what this does to us as mothers...the doubt, the guilt, the frustration, the hurt, not knowing which way to go, constantly questioning, analysing, watching, going crazy with worry, panicking... You want the best for your child...I know I'd walk over hot coals if it would help. You know you are doing everything you can - now breathe! Please - seek some care for yourself too! You WILL get through this.