Sunshine

Kim, Hi back!!... It's been a while since I've been here... so much to catch up on! My son continues to do very well. He could be a poster child for before and after biomed treatments! Honestly, he looks SO much healthier and happier. He is doing well in school, is an outstanding athlete (soccer, skiing, hockey, biking, golf, swimming...) and he has lots of friends. We are thrilled with his continued progress. We still follow the Yasko protocol, and it's amazing that he is still detoxing! I'm working full time now, so I spend less time researching than I used to. It's a relief to actually get paid now for all of my work! Hope all is well with your boys too. Sunshine

Very interesting! And that stat doesn't take into account the kids who weren't diagnosed with strep. I know of so many PANDAS kids who don't show typical strep symptoms, so I wonder if MORE children with one of the neurological disorders actually had strep. WOW!... and so many doctors don't believe in PANDAS!!! ... How bizarre!!

This is a great thread. My son's doctor has said from the very beginning that virus and bacteria attach to metals in the body. Aluminum is a huge magnet for strep. My PANDAS son has tried a few different forms of chelation, under the supervision of different naturopaths and physicians. We definitely began with getting his body and gut in balance, along with a healthy diet tailored to his needs. Then we began chelation with DMSA, which made my son much worse (although he did dump large loads of metals). We have since found out, through genetic testing, that he can not tolerate the sulfur in DMSA. We also tried chlorella, but it did not seem to make a dent on his enormous metal burden. We tried clay baths, but it was hard to determine what and how much was coming out. Finally, we have been treating him for over a year now with ETDA powder. We go incredibly slow to avoid messing up his gut. He is slowly and constantly dumping all sorts of metals. We try to do regular urine testing to measure what's leaving his body. We then supplement according to need (ie zinc and essential minerals.... very important to monitor these). I have a new son, after many years of bio medical interventions. Sunshine

My PANDAS son has taken Boswellia for almost a year and a half. It is one of about 40 different supplements that he is on. I can't say that Boswellia had any impact on his tics, but it was one small piece in his recovery. He is currently tic free, and healthy as ever. We will wait and see how this winter will impact his health, but I am optimistic. Sunshine

bmom, Dr. mullan does test for yeast on a routine basis. We had already done allergy testing, delayed food sensitivity testing, and TONS of other tests before we went to Dr. Mullan. We forwarded all the results of the tests to her, and she read them prior to our first consultation. I don't know if she tests for pylouria. The Yasko approach uses genetic testing to look at the multisystem imbalances in the body that create an atmosphere for the growth of multifactorial and complex diseases. Yasko's hypothesis is, "that chronic viral and bacterial organisms in our bodies are able to create additional havoc in your system by acting as "accomplices" to heavy metals, and aiding in their retention in the body." I agree so strongly that you have to weigh the pros and cons when choosing treatments for you or your loved one. I hope I brought some clarity to your dilemma. Best of luck with your decision!!

CSP My son is 8 years old. Faith Kim is correct about the top ten supplements. Dr. Mullan follows Yasko's protocol. We got her number through Dee, an old poster here. Dr. Mullan is neither in our area, nor our country!!! Our pediatrician (who really has zero experience with PANDAS) has no contact with Dr. Mullan. Nor does our ND. Dr. Mullan works by phone consult. Kim Yes, my PANDAS son had a SUDDEN and SEVERE onset of multiple motor tics. I have the date marked on my calendar. However, he had a SEVERE case of strep 6 months prior. In retrospect, I realize that he had PANDAS symptoms (huge separation anxiety, emotional lability, clothing sensistivity, sleepless nights...) in the following months. He had another case of undiagnosed strep, IMHO, and 10 days later the floodgates of tics and frequent urination opened. Of course no doctor ever mentioned PANDAS, so we carried on, tics subsided, and then we gave him his Kindergarten vaccination. WHAM!! Within 10 days he had severe motor tics and, for the first time, vocal tics too. This is a real nutshell version, missing some details, but my old posts tell the drama of it all. That was 3 years ago. Yikes!!! My son is SO much healthier than he was three years ago. I still keep his Kindergarten photo on my desk to remind me just how sick he was. The contrast is astonishing. We started this journey to help the tics, but realize now that they weren't the only problem. I mourn the fact that my own child's illness is what was required for me to finally stop and look hard at our lifestyle, our environment, and alternative medicine. Yet our family has learned so much, and we are thankful to be so healthy. My son still tics (but nothing like before), and most people wouldn't notice. He has no other PANDAS symptoms at all. He is a smart, athletic, social, and very handsome grade 2 boy. I would be thankful if he remains as healthy as he is today. I couldn't ask for more!

Myrose, So glad that you got some answers today and that Topomax is working for your daughter. You must be exhausted!! Hope you all have a peaceful sleep, and a much better week than last!!

emma, Just want to make sure that the probiotics are being given at least a few hours after the antibiotic. Otherwise that might be a concern, although it may have no impact on hunger levels.

Hi Kim, Thanks for your kind words! I am so sorry that I didn't pick up on your note about Dr. Mullan's number. I am glad that you found it. She is great, although expensive... Dee is quite correct! In the beginning, we had a complete SNP panel done (about $750 ish). We also began with a Metabolic Analysis Profile (MAP) and an Amino Acid Profile. Before our first phone consult I had faxed her the results of the recent DMSA Heavy Metals Test and a recent Comprehensive Stool Analysis (CSA). That was our starting point. We continually run (at least monthly) Urine Toxic Metals Tests and Urine Essential Elements Tests. We also do CSAs and MAPs, but less often. Dr. Mullan orders the tests through Doctors Data, and we ship samples to the lab. The results are sent directly to her, with copies mailed to us. It adds up financially!!!!! As do all of the supplements that she recommends!!!!! I do think that you could wade through it on your own. The Yasko site is SO helpful, and you already know SO much. With all of your talents on wading through scientific mumbo jumbo, you will master the protocol in no time flat. Perhaps just one phone consult would set you on the right track. You are right about the CBS being an upregulation. Cystathionine Beta Synthase (CBS) is a key enzyme in homocysteine metabolism. There are actually four CBS SNPs that Dr. Amy tests. One is CBS C699T, another is CBS A360A, another is CBS 313 and the last is CBS N212N. I believe the former is more serious, and Dr. Amy sees it as a link to autism (the majority of her older autistic patients have the C699T mutation). It should still be called the CBS, as far as I know, but the profile may have changed. I hope that it will help your younger son. Even if you start with the top 10 supplements and GABA/Glutamate balancing, you might see a difference. My son grew taller and gained weight on the protocol (yeah!), although he was eating a healthy variety of foods before Yasko. He also has his lovely skin colour back... he had been a pasty ghost, even in the middle of summer. Faith... my son actually needs B12. His test results (from tests listed above) showed the need. Hydroxy B12 can be given in several ways: sublingual, nasal, shots, and I believe that there are now drops. The B12 makes my son worse at first (detox... measured by UTMs), but then he levels out. He has made great progress on the protocol (he is overall healthier!!!). I'm off to bed, after a wonderful family day. I no longer take such days (or moments) for granted... a silver lining to all of these health concerns! Cheers, Sunshine

I just quickly scanned the last few posts here, as I'm heading out on the boat with the family. Pardon me if I'm out in left field. I do not want to stir the pot or worry anyone, but I'll share some insight from our experience. I just want to comment on the B12. We have been following the Yasko protocol, and my son needs LOTS (even more than 1,000 mg) of B12. However, Dr. Amy insists that certain forms of B12 are to be used, depending on the genetics of the patient. My son can NOT use Methyl B12, but needs LOTS of Hydroxy B12. I think for my son Cayano B12 is ok too, but not as good as Hydroxy. Again, I don't want to rock the boat for anyone. My motto is if it's working, stick with it!

Wendy, Boy, I have read your two posts back to back as I have been away for a few days. Wow, what an ordeal! I am surprised that your Neuro didn't tell you about the second EEG. It doesn't make any sense to me. I also gather that you have been having heart palpitations.... yes??? My husband has had them on and off for years. He had always been concerened about a heart attack, as he has bad genes for heart conditions. He was finally diagnosed this year with anxiety (surprising, as he seems to be Mr. Mellow). He has tried a few different meds, and seems much better. Stress is SO hard on the body!!! Do take care of yourself (hard, I know... but SO important). I used to think that I'd take care of myself when my son was better again. Three years later, I realize that I better take care of me now, or it may never happen. (((Hugs))) to you and your family... Good luck tomorrow!!

((((Wendy)))) I just read your note about your daughter, and my heart goes out to you and your family!!!! Gosh, parenting is hard enough... this kind of added stress is SO brutal. I do hope that you get some answers soon, and can find some ways to releive her symptoms. Just want to relate a little queery that I've always had. My NT child (eldest) had clonic (I think... not myclonic) jerks as an infant. At 16 months she had a fibral (grand mal) seizure which was scary to witness and manage. The EEG appeared normal. She has had no problems since... touch wood! I have always wondered if and how it might relate to my son's tics. You are all in our thoughts and prayers. Take care!

Kim, Interesting thread... I'm not sure I totally understand the new link (re the golgi stuff). But, a few things did jump out at me. I'll throw them out there, but remember it's the end of a long, brutal work week for me, and it's past my bedtime. (Not that I make great sense when not under such compromised conditions but...). The first thing is that we have Osteo in spades on both sides of the family. Would that affect gluconic acid levels??? The other thing that I picked up on is this: " In aqueous solution at neutral pH, carboxylic acid forms the gluconate ion and the salts of gluconic acid are also known as gluconates. " Dr. Amy's forum has quite a bit of discussion with regards to pH. What I have learned from there is that typically the bad gut bugs thrive in an acidic environment and good flora dies in it. Elevated gut pH has also been associated with clostridia. And, if the stomach pH is too high, then there is not enough acid to stimulate the hormones that in turn stimulate enzyme production. Perhaps many of our chicklets have an imbalanced pH which also affects the level of gluconic acid. Here is a quote from Dr. Amy, which talks about pH and magnesium...it's quite interesting!! The website is underneath for anyone who is interested in the article. "It is interesting to note that nutrient status can be impacted by an acid-base balance in the body. Researchers in Germany found that "acid-base status affects renal magnesium losses, irrespectively of magnesium intake." This means that besides not eating enough foods high in magnesium, an acid load in the body could be another factor that contributes to a magnesium deficiency condition." http://www.ch3nutrigenomics.com/phpBB2/vie...ae5a7b0bc334366 Just wondering, Kim, if this ties in with your thoughts, or am I in left field picking the daisies??? Sunshine

Kim, Thanks for highlighting the beauty in my baby! It truly was (and still is) an instant love affair, just like you read about in great literature. He is still the twinkle in my eye, despite my sarcastic comments! (I secretly loved his fluffy duck hair.... and when he was first learning to talk we would ask, "Are you a boy or a girl?". He would always tell us, "I'm a duck!".) Yes, my son is PANDAS, although it is not as difinitive a diagnosis as some others here. His tics were definitely triggered by a nasty case of strep. The doctors agree that there is a correlation. However, after TONS of testing, we realize that he had underlying factors which caused him to be more at risk for a PANDAS type of reaction. It's interesting that this whole thing is linked to sulfur metabolism. My son can't handle excess sulfur, but perhaps it's because his body can't process it correctly. I do think that if the molecules of sulfur are not being converted into beneficial chemicals, some could get stuck in the sulfite stage and cause toxicity. The toxins can further inhibit the activity of PST enzymes.

Jenny, My breadmaker is a no frills kind of dinosaur. I have no idea what size of loaf it makes. Perhaps you could compare flour quantity with other loaves that you have made.

My guy had THE WORST nails ever as an infant. His toenails wrere creey (warped, thin, and split in layers). He was quite bald, and had only fine duck fluff for the first two years of his life. Even when his hair was one inch in length, it stuck straight up as though it was charged electrically. Charming. Supplements have helped his nails dramatically, and he sprouted more hair just as his daddy started losing his.

Here's a good recipe... hope your daughter likes it!. Sunshine Gluten Free Bread 3 large eggs 1 2/3 cups water 3 tbsp vegetable oil 1 tsp apple cider vinegar 2 tsp honey or molasses or combo of both 3 ¼ cups rice flour (or 2 cups brown and 1 ¼ cup white) 2 tsp egg replacer 2 tsp xantham gum 1 ½ tsp salt (optional) ½ cup skim milk powder 2 ½ tsp breadmaker yeast Combine wet ingredients in bread maker pan. In separate bowl, use a whisk to combine all dry ingredients except yeast. Add dry ingredients to wet, but do not combine. Place pan in breadmaker. Make a well in dry ingredients and add yeast. Variations · Works well without skim milk, although doesn’t rise quite as high · Omit skim milk and replace with 1/3 cup of yoghurt, using only 1 1/3 cups of water. · Add about a tablespoon of nuts and seeds (flax, sesame, sunflower)- whole or ground Note: Xantham gum (acts as a binding agent) and egg replacer (acts as a rising agent) are available from health food shops or some larger grocery stores.

Hi everyone, I'm sorry that I have not checked in for a while. This topic looks very interesting. It's a lot to get my head wrapped around, but I'm intrigued nonetheless. Both of my kids have birth marks, as do I. My daughter and I each have one very small and super light cafe au lait spot, not at all noticeable to anyone. My son has a little red splotch about the size of a pea (also not noticed due to location). His doctor said to keep an eye on it as he grows, but it hasn't changed since birth. Actually, none of our marks change or ever cause us any issues (that I'm aware of!). We do have a history of Factor V Leiden on my husband's side, although he tested clear. My son has no MTHFR abnormality. He is the only one in the family who has had any kind of tumor. As well, none of us have ever had cysts. My son continues to do incredibly well. Cheers, Sunshine

Turbiano, Your 'feed the dog' story sent chills down my spine. Oh my gosh, I am such a broken record that it hurts my ears. I repeat every direction time and time and time again... and again! I thought that I was the only one going nuts, but I'm happy to have your company! Actually, my son has improved over the last year. Perhaps it is age, or maybe he's beginning to feel sorry for me! Seriously, I do think that going Gluten free has brought him some clarity. I also believe that GABA has helped him. In combination these two changes make perfect sense. Glutamate (found in wheat etc...) can stimulate the nerves, where as gaba is the calming neurotransmitter. You can think about glutamate and gaba as being on opposite sides. Balancing these two seems key. Perhaps our kids have to work harder at processing our language commands. Maybe things get muddled for them. In fact, tuning out might be their way of coping. Here is an interesting quote from Dr. Amy that ties together some of what I'm trying to say: "GABA helps to put the gaps between words so that you can tell the beginning of one word and the end of the next word. I have observed that when we see GABA levels on a urine AA test it is related to language in the children. However, too much GABA will make a child sleepy as it is an inhibitory neurotransmitter. Glutamate is the stimulatory neurotransmitter. So we are looking for a balance between the two. GABA is not the only factor that is involved in language. I believe that we also need sufficient dopamine levels." I hope that you find something that helps. Lack of focus is hard for our little ones, but it is hard on us too! I already have enough grey hair, and my wine consumption is at max! Cheers, Sunshine

My son's lump was sent off to Pathology for dissection and testing. All that we were told was that it was a 'benign tumor mass'. I would doubt that it was checked for strep, as we had no known issues with strep at that point. I highlight known, as I am now aware that strep, as well as other bacteria and viruses, can hide OH SO WELL! I also highlighted it because I just figured out how to use colour, and it's oh so funky! Sunshine

For anyone battling PANDAS, Xylitol is excellent. Xylitol nasal spray can fight strep hiding in the nasal cavity. It has also been reported to help with leaky guts, as strep is famous for hiding there! My little guy takes 1 tsp of Xylitol per day, and he too LOVES his Xylichew! Sunshine

The cream consistently works wonders for my little guy. But, FYI... it does make the veins smaller and therefore harder to access. Last week my son watched the RN 'dig' around searching for the vein. Luckily he managed, but I found it hard to watch! Sunshine

Michele, My son has PANDAS and he is currently being treated by a doctor who mostly treats ASD children. However, she also treats developmental and speech delays, adult mental health issues, food allergy, yeast, heavy metal toxicity and more. She uses diet and supplements according to the Yasko protocol to treat everything. Most likely a number of factors contribute and interact to make a person unwell. The Yasko approach focuses on the methylation cycle which has a relationship with neurotransmitter levels. Problems with one's immune system can lead to problems with the methylation pathway. The methylation pathway helps rid the body of virus, bacteria, toxins etc... All ASD kids tested thus far have mutations in the methylation pathway. My PANDAS son did too, but the bacterial overload caused tics in him. Thus, I guess PANDAS and autisim can share a commonality: the methylation pathway might not be functioning properly. Treatment plans may have overlap. Interestingly enough, we began with the Yasko protocol because of the tics from PANDAS. However, some of the best gains that my son has made have nothing to do with tics. He has better language processing skills and his vocabulary has increased dramatically. As well, he is more aware of details in the world around him. We never set out to 'fix' these things, as he seemed quite typical for a busy little boy. And, his improvements have nothing to do with PANDAS specifically, but they appeared as his methylation pathway was supported. It's all so complex, and there are sooooo many ways to look at things. This is just my two bits based only on my experience with my sweet son. Cheers, Sunshine

Subject: Autism The band, Five for Fighting, is generously donating $0.40 to Autism Speaks for *each time* the video is viewed the funding goes toward research studies to help find a cure. When you have a moment, please visit the link below to watch the video and pass it along to your friends and family. They are aiming for 10,000 hits, but hopefully we can help them to surpass this goal. http://www.whatkindofworlddoyouwant.com/vi.../view/id/408214

My son's doctor emailed me this today. Although the subject is autism, I thought that many people here might be interested. I will post it in the autism section as well. Sunshine Subject: Autism The band, Five for Fighting, is generously donating $0.40 to Autism Speaks for *each time* the video is viewed the funding goes toward research studies to help find a cure. When you have a moment, please visit the link below to watch the video and pass it along to your friends and family. They are aiming for 10,000 hits, but hopefully we can help them to surpass this goal. http://www.whatkindofworlddoyouwant.com/vi.../view/id/408214