2 PANS kids fighting lyme and coinfections, our journey to healing

Salicylates (sall as in sally – i as in ink – sill as in silly – ates as in dates).

The Food Intolerance Network has informational sheets on 31 disorders that can be helped with removing salicylates from the diet. Salicylates are found in foods from plants: most fruit, some vegetables, herbs, spices, tea and flavor additives. For example, citrus fruit, berries, tomato sauce and mint flavoring are naturally high in salicylates and so are processed foods with those flavors. Salicylates are also found in medications, fragrances, industrial chemicals, plastics and some pesticides, and can cause adverse effects when inhaled as well as eaten. Use the link above to go to their website and read each fact sheet. 1 ADHD and diet 2 Alopecia Areata (patchy baldness) 3 Arthritis, joint pain and diet 4 Asthma and food 5 Autism & Asperger 6 Bedwetting 7 Candida, Yeast, Sugar, Hypoglycemia 8 Cats, Dogs, Pets and Food Additives 9 Chronic fatigue 10 Constipation and Psyllium 11 Dairy, wheat, gluten – do I need to avoid? 12 Depression 13 Down Syndrome, behavioural symptoms (Symptom Discussion) 14 Eczema 15 Epilepsy 16 Hayfever and allergic rhinitis 17 Head banging 18 Headaches and migraines 19 Heart palpitations and chest pain 20 HHT (Hereditary hemorrhagic telangiectasia) and a low salicylate diet 21 Irritable bowel symptoms (IBS) 22 Multiple sclerosis and diet 23 Opposition Defiance Disorder (ODD) 24 Pervasive Development Disorder (PDD-NOS) (Symptom Discussion) 25 Self harm 26 Sensitivity to sound – hyperacusis 27 Sleep apnoea 28 Sleep disturbance and insomnia 29 Speech delay 30 Stuttering 31 Tantrums 32 Teeth grinding 33 Tics, Tic disorder, Tourette symptoms For a quick food guide: SalicylateSensitivity.com exists to help those who suffer from salicylate sensitivity and other chemical sensitivities to find the information that they need to begin their journey toward health and recovery. We also want to provide a place of community and encouragment for those on that journey. SalicylateSensitivity.com is free and is dedicated to remaining a free resource for all.   Share this:Click to email this to a friend (Opens in new window)Click to print (Opens in new window)Click to share on Twitter (Opens in new window)Click to share on LinkedIn (Opens in new window)Click to share on Reddit (Opens in new window)Click to share on Pinterest (Opens in new window)Click to share on Facebook (Opens in new window)Click to share on Google+ (Opens in new window)Click to share on Tumblr (Opens in new window)Click to share on Pocket (Opens in new...

You just said WHAT?

Food, food, food… argh every time I tell myself never again and it’s gone in a second. He looks at me with his pleading eyes, or tells me “I just want to be like them Mum” and I cave. So he ate Chinese noodles… big mistake. He ate the noodles on Saturday night, on Sunday night he wouldn’t go to sleep, he was crying, miserable and angry. He also chose to debut the use of the ‘F’ word! I almost fell over, I know the suggested reaction is to ignore it and not make a big deal but I wasn’t about to let it go. It was so much more than just the word! The word meant more to me than that! It means he understands fully the power and potential of what he says. Apparently he has been storing the word for maximum impact since he heard it from his friend a week or so ago. This poking is fairly typical, almost a desire to treat me like a lab rat. He will say or do something then watch, with his head almost sideways waiting to see my reaction. This time he wasn’t disappointed, except instead of getting angry I cried! 🙁 Why would I cry? I was amazed at the feeling myself. I was so disappointed, so sad to hear it come out of his mouth. So very, very sad to hear him use the word for effect. But it’s more than that I guess – using the word tells me he is no longer a child, no longer innocent, no longer will we be fighting ‘baby’ or childish issues, this is the big guns, this is the scary part. This is where he learns to really fight dirty. Yes, at that moment all that and more crashed through my brain at the same time. Sounds dramatic, sounds over the top, sounds too much, but I think I have been waiting for this, waiting for this moment, the moment when he goes over into the advanced, more mature thought process. It scares me, it truly scares me. Just his loss of innocence, his loss of cuteness. The idea that as he matures and gets angrier and more aggressive he will lose the loveability factor that keeps people liking him, the innocence and enthusiasm being replaced with loathing and snide remarks. The idea that soon Santa will be gone, the tooth fairy will cease to exist, and my own angst that my son is embarking on his teen years too...

A day in the life…

Just what is it that makes us drive all over the place, spend our retirement and consider enrolling in one therapy after another and another? This was written on 8/10/11: 7:00 am up and grouchy, breakfast takes about 15 minutes to decide. Usually we get waffles (gluten free of course) or scrambled eggs. We also add a hefty dose of whatever pills he is taking this week. Today that was 2 cold snap, 3 Calm-PRT, 2 Vitamin C and 2 Kavinace. Next week it will probably all change thanks in part to our homeopath and her kineseology assessment of his supplements that week. At 7.30 we usually start asking for him to get dressed, one of us will keep checking in every minute or so to see if he has actually managed to leave the dog alone, quit playing with his Lego, put his Mario figures down, in time to just get his shorts on. Inevitably it will be that one of us will go ahead and just start to help him put his clothes on, this also includes taking to the bathroom and helping to get his face washed and teeth brushed. If we don’t accompany him he will wander off and start playing, drawing or rolling on the floor with the dogs. At 7.50 he is in the car and off to school. In the car he will listen to his Brain Balance CD much to his annoyance. Usually he will yell forcefully “Oh my G*D” and hit something, he will tell me it’s stupid, or I am stupid or a moron, but after a while will settle down into some kind of silence. On Thursday when I dropped him off he told me he was running away, today apparently he went in after a brief high five to his Dad. I think as much as he doesn’t want to, he is actually enjoying going to school. Around 2.45 I pick him up, M/W/F we have to drive straight to Brain Balance, this elicits several different responses, today he threw his lunchbox with a metal water bottle at me, while I was driving. Luckily he is a horrible shot, it missed me by inches. Anyway I am pretty used to it by now, most of the objects that will hurt when thrown have been removed from the reach of his booster seat. Mostly now I get hit by flying socks, not too terrible, much better than the bag of coins he managed to throw at my head...

Pfeiffer Treatment Center will no longer be providing patient care.

2013: Please read the post in it’s entirety in addition to the comment section below for new information that has come to light since we attended the center in 2008.  The facility we went to and wrote about is no longer open.  To my knowledge we never met with Dr. Anubrolu and this doctor would need further due diligence on your part if you were to seek treatment.  Original post and comments are included below: 2013:  About William Walsh In regards to Pfeiffer Treatment Center that we attended.  There was an announcement on the website and each patient received a personal letter and an introduction to Wyndgate Health. The message read as follows: “In an effort to assist each family with continued care, we are pleased to also announce that Wyndgate Health, St. Paul, Minnesota, has agreed to provide care to you going forward. Wyndgate Health is staffed by Pfeiffer Treatment Center Certified practitioners, and headed by Laura McDaniel, RN and former Pfeiffer Treatment Center staff member and Pfeiffer Methodology Trainer. The Pfeiffer Treatment Center and Wyndgate Health share the same mission, and we are confident that the transfer of Pfeiffer Treatment Center patient records to Wyndgate Health facility will help ensure continuity of care. You may contact Wyndgate Health for additional information, appointments, follow-up support, prescription refills and record transfers.” Unfortunately, as the above states, the center we attended has been closed.  That was perhaps much of the reason we didn’t feel that we got much from our visit to the treatment center in IL. There were as previously stated, some deficiencies in the test results and we did find that a diagnosis of pyroluria was given, but once we returned home we failed to keep a connection with the clinic. It was quite expensive to visit and my husband and I felt finances could be better spent elsewhere. In our case, the supplements did not particularly help any better than an over the counter variety and actually the compounding of multiple vitamins together seemed to not be a good combination for B.  Supplementing daily with the pills tended to make his behavior worse rather than better.  We have since found that for us, a rotating schedule works much better. While he may require a supplement such as iron daily over a 2-3 week period, we need to stop when he has reached a stable level again. This is the same for zinc, vitamin C, and especially fish oils as they give him quite serious eczema. I no longer believe that in our case a daily...

Some weeks are easy and some are just plain hard!

Last week was a particularly bad week. It got steadily worse as he ate his way through several foods on his ‘intolerant list’. It was only after the donuts from a well known “the lights are on” donut shop that things really took a turn downwards. I know, I know, totally under my control but sometimes … At this point I am going to concede that food is still a major contributor in his behavior. Especially his mental health. He is once again, dismissive, aggressive, frustrated at every little thing, intolerant, and depressed. Give the kid wheat, dairy, corn, additives, soy, or any other thing on his list and he spirals fast. Sadly, when someone eats something and they are allergic or intolerant to a certain protein in that food, or to the food itself, damage to the gut occurs.  This causes something known as ‘leaky gut.’ Once your gut is damaged the proteins in food can wreak havoc on the brain. Celiac.com explains … ” Celiac.com 09/13/2008 – In the last two decades, research has begun to focus on gluten’s effects on the brain, including associations with Autism Spectrum Disorder (ASD) and Attention Deficit Hyperactivity Disorder (ADHD). Celiac disease itself occurs no more frequently in children with ASD than in neurologically normal children, but it appears there are other reasons to consider excluding gluten from the diet. “Mal-digestion of dietary proteins, particularly casein (from cow’s milk) and gluten-containing foods, produces small peptides (amino acid sequences) that may function as opioids”. This is what is known as “The peptide Theory”, also called “The Opioid Excess Theory”. What this means is that incomplete digestion of specific foods allows the remaining small protein fragments, called peptides, to pass through the gut wall into the bloodstream. Peptides are tiny, but children affected by dietary peptides often have what is termed a “leaky gut”, or a gut that is in some way damaged and unable to fully perform its protective function. In children (and adults) with ASD, gluten breaks down into a peptide called gliado-morphin, and casein breaks down into a peptide called caso-morphin. Eventually these peptides are thought to bind to opioid receptors in the brain, where they are perceived by the body as morphine-like substances. It is this morphine-like or narcotic-like effect that causes many of the typical behaviors associated with ASD. These behaviors can include sensory problems, lack of eye contact, self-stimulation, and altered pain threshold, among others. Repeated exposure to gluten and casein causes a condition similar to opiate addiction – children with...

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