Laurie in Az

Hi Caryn, He did have the test for celiac sprue 4 yrs. ago. It came back negative. He has been wheat free for at least 3 yrs. Ditto for dairy and corn. I'm beginning to look at yeast and phenols. His allergic shiners have never gone away. He has no respiratory problems, no stuffiness. No allergies with the traditional scratch test. I need to get his other minerals tested. I'm very frustrated. I'm thinking leaky gut and yeast. His dad's family is full of autoimmune disease and allergies. The pyroluria is probably from my family, maybe both families. The only TS that we know of are a child of a first cousin on my mother's side and one on my father's side. He's obviously not absorbing the zinc. I'm beginning to wonder if he is absorbing anything. I'm doing alot of reading on the "Enzymes and Autism" site. I'm not sure how many direct parallels can be drawn between TS and Autism.I do think that the digestive enzymes and yeast protocals could be helpful. Laurie Hi Kim, The link didn't work. Laurie

My son just did the zinc Status test. He came out moderately deficient with a recommendation of 100 mg. a day. He has been getting 74mg a day from all non-food sources combined for over a year. I don't think that he absorbed any of it! He was recently retested for pyroluria and it came back a 20. This is borderline according to the lab. I have just started him on digestive enzymes and betaine HCL. I am now questioning if he is absorbing any of the supps that I am giving him. I switched to Zn picolinate and am looking at zinc creams. Has anyone used zinc sulfate cream or zinc cysteine cream? How long before I retest him with the Zinc Status test to see if his Zn levels have increased? I'm also considering going to liquid B6. He currently takes a combination of B6 and p-5-p in pill form. Has anyone used liquid B6? I'm feeling discouraged. Laurie

Thank you. It sounds scrumptious! I have a pie pumpkin sitting in my kitchen. It sure sounds better than the pumpkin cobbler I was conjuring up! Enjoy your Thanksgiving. Laurie

It sounds incredibly stressful. We've been through those times. The patchy skin and dark circles sound like digestive trouble and allergies. The ulcer would also lead me to believe that there is a digestive imbalance. Have you done an elimination diet with him?It might give you important information.Any exposure to cleaning solvents, chlorine, insecticides? We've had horrible suicidal rages,several days in a row, after exposures to chlorine in a jacuzzi, and floride treatments! When we moved and started to use city water we had to buy bottled water and to put a filter on the shower! How do weekends compare to school days? Maybe there is something environmental at school. My DS does well with epsom salt baths, melissa tincture and rescue remedy when his mood starts to spin out of control. I hope that things start to get better. Laurie

Have you used melatonin with him? There are also relaxing safe herbs such as valerian(there are kids formulas) and skullcap which might relax him enough to allow him to go to sleep. We also find that soft classical music helps. My son has his own MP3 player. Enjoy your trip. Laurie

Hi Tom's mom- it all sounds very overwhelming. I can relate. I started going to the yahoo discussion group, EnzymesandAutism@yahoogroups.com. There are people there who use digestive enzymes and are able to add foods back into their children's diets. It is worth joining for the digestive enzyme info.I am just beginning to try them for my DS. It makes sense to me that if you heal the gut and add help with the digestion then foods would be less of a problem. It's too soon for me to know if the digestive enzymes are working. Hang in there. It will get better- we just don't get to know when. Laurie

I homeschooled my son for 2 1/2 yrs until I found the perfect private school. There are many hs groups and lots of social activities during the school day. The biggest problem is findng time for academics, LOL. Also lots of hs sites for teaching materials and help with hs issues. HSing also gave us the time to try a special diet, get more sleep, and figure out triggers. Most schools are full of screens, flourescents, and cleaning chemicals, not to mention cupcakes-all big triggers for my son. Knowing that hs is a viable option has also allowed me to be pickier in my son's school placement. Laurie

We have dealt with "tourettes" rages. For my son this is very different than garden variety temper tantrums and bratty behavior. The rages are usually triggered by a known trigger for him. A big one is chlorine, hot tubs are a huge no no. Flouride treatments will also set him off, as will extreme stress. He is unreachable when in the middle of his rages and will be self destructive. My goal is just to get him through it safely. We've also learned to use Melissa tincture at the first sign of anger. Gaia herbs makes a tincture called Melissa Supreme. It has been wonderful for Aaron. He will ask for it when he feels tension building up. Foot rubs also dissipate the coming storm. We have recently been dealing with a new problem. Smart boy that he is- he tries to blame pure old spoiled brat behavior on tourettes. When we put our foot down, he threw some truly dramatic tantrums. They subsided very quickly when he found them ineffective. They were very different from the rages, he had control! I sometimes have difficulty sorting out what is developmental, what is neurological, and what is behavioral! He is almost 11y.o. and I think that I probably have been too easy on him in the past. Laurie

My DS has Tourettes and OCD(mild, I think). I've recently been feeling confused as to what is a tic and what is a compulsion. He has consistently had a kissing tic for the past 2-3 yrs. It is 90+% with family members and he has to land the kiss on us. He states that kissing himself is not satisfying. It is driving me nuts! His younger sister has smacked him on several occasions! He reaches up to my chest and it feels very intrusive to me to be kissed on the chest repeatedly in public. If it were a tic, would it be limited to family members and would he have to actually connect? If it is a compulsion, can I try to get him to refrain? Is almost 11 too young to learn tic substitutions? He also mentioned today that being close to a wall intensifies his turning tic-something about then having to spin the other way. Tic? Compulsion? Both?I recently increased his inositol which has noticeably decreased his high anxiety episodes- no change in kissing and turning. I feel like an awful mom, this kissing tic is making my skin crawl!!!! Laurie

B-mom - Be careful with the B complex. My DS did not tolerate it at all! The B6 and p-5-p(one or the other or both) are the specific Bs for pyroluria.B2 is also needed with the B6. I don't know if the B2 in a good multi would be enough. Laurie

Brightspot did say that this is a NEW policy,based on experience?research?. They claim that supps or no supps did not make a difference. I did however find people mentioning dramatic drops in their pyrrole levels after starting the supp program. I think that I will take him off of Zn, and B6 48 hr. prior to the test. I did find this link to an old FJ post on pyroluria. FJ,where are you?!!! http://www.dr-bob.org/babble/alter/20050510/msgs/498689.html Laurie

I am confused. I called Brightspot to order a testing kit for pyroluria. The person that I spoke with told me that there is no need to stop giving supps prior to the test. . She said that supps will make no difference in the levels. She also said that the pyrroles in the urine are effected by stress. My son's supps are in part to decrease stress. Wouldn't inositol and B6 decrease stress and therefore decrease the pyrroles?I also remember reading that several members found dramatic drops in their pyrrole levels with the correct supplementation. I had also wanted to retest to see if the supps were working. Can someone clarify some of this for me? Thank you, Laurie

A nutritionist suggested trying my son on betaine HCl to see if he has sufficient stomach acid.You start with 350mg. at a big meal and wait to see if there is any burning or acid indigestion. We went up to 3 pills without any symptoms. He has seen a positive difference in his BMs. I found an old post where someone was speculating on whether increasing stomach acid would increase absorption of supps. Has anyone had experience with this? It would be wonderful if we could decrease some of the supps. Also has anyone had the experience where their own stomach acid started to kick in? I've been told that the betaine HCl jumpstarts the stomach's production of acid. Thanks Laurie

I have found during my reading that my son's symptoms can all be caused by low serotonin levels. I would like to slowly increase his levels and see if it helps. I have seen many supplements and herbs that are reported to increase serotonin or to slow down reuptake. So far-SAMe, methionine, St John's wort, 5htp, tryptophan. Can someone help explain the differences between the most popular supps. for increasing serotonin. Are there any guidelines for choosing a supp to increase serotonin? Have I missed any that I should know about? Thank you for any help. I am very confused. Laurie

Cooking from scratch does get tiring. I try to stick to a few favorites for lunch so that I can be on automatic pilot. Homemade hummus is very easy in a food processor. It can be dressed up with different herbs or red bell peppers. I often do 3 hummus lunches in a week. Veggie sticks work well for dipping or I use brown rice bread. If you are near a Trader Joe's-they have lots of gluten free products. I also buy a family pack of deboned chicken thighs(we're dark meat lovers) and cook them all ahead of time. Then I can grab one for a sandwich or slice it up for a chicken salad or a salad plate. I always include fruit and nuts for snacks. I have made homemade granola as a snack however it is labor intensive and disappears very quickly. Another great gluten free lunch is homemade sushi rolls- I use nori,cooked salmon,brown rice, pickled ginger(be careful- most brands are full of junk!), cucumber, carrot etc. I've also done rice paper rolls-like Vietnamese spring rolls. I find that the Asian cuisines are full of ideas for gluten free dining. Of course, be careful with the soy sauce. Happy dining. I keep daydreaming that someday I will be disgustingly rich and can have my own personal chef. It hasn't happened yet. Laurie