momaw
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Posts posted by momaw
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Thanks so much for these replies. It makes it a lot easier than just staring at the 10 different magnesiums at Whole Foods with a big ? in my brain.
Angela
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Betty,
I can tell you that when I had too many salycilates my son's tics returned in multiples! They were full head swings/jerks vs. eye blinking. I learne this a while ago. I recently tried to go GF and dairy free for his attention issues.....is tics returned GREATLY...I realized I was high salycilate again. I reduced them and went back to my supplements. It worked......
I think amino acids and low saylycilate are key for my son! GABA, NAC and Aceytl L l Carnitine........I hope this information helps!
Tracey,
I'm starting to think that salycilates are a problem for my child, too. Yesterday, he had pizza with nitrated pepperoni and then had strawberry shortcake for dessert. I started seeing his old jaw/neck tic where he tenses the muscles in his neck and pulls his jaw to the side. He had already had an increase in his eye tics so the naturopath had me put him back on glycine. We also have him on Neuroscience's Kavinace product that has B6, taurine, and another amino acid that promotes GABA uptake in the brain.
Is there anywhere where I can find a good list for salycilates? I don't think I can cut them out completely b/c I know he doesn't react to fresh oranges or grapes, but it's pretty obvious that strawberries might be a problem!
Bonnie
PS: I haven't been here in a while, so hello everyone!!!
Bonnie,
Have you found that glycine definitely helps with your son's tics?
Angela
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My 20 year old daughter has always gotten stomach aches from eating eggs. We had her tested a year ago and and found out she is in fact allergic. She doesn't seem to get a stomach ache from eggs in baked goods, but she does if it is in dressings, mayo, etc.
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Hello,
I would really appreciate some input on the different types and brands of magnesium that people have chosen to use, and why. Is there a lot of difference in the different brands? Have some of you found that while some worked others didn't, or is it just a matter of tweaking and personal choice?
We had taken our daughter off of all supplements, as she seemed to be doing worse, and I became frustrated at trying to figure out what the cause was. With dietary intervention she has improved, and has actually gone for four or five days at a time without tics lately, but still has eye rolling and sniffing that flares up. Yesterday was a bad day, and I was just so discouraged as she had had a good streak of several days. I know in addition to the salicylate issue that I am addressing, I really need to start her back on some supplements, but I want to do it one at a time, and slowly, so that I can note improvements and reactions better this time, rather than hitting her with everything at once like I did before, then when things go awry not know why. I thought I would start with magnesium.
By the way, I could sure use a good success story right now of someone who feels like they have actually beat this (by natural means because that is what we are doing at this point), not just improved. It is always so hard when I starting to get excited, and think we may be beating this thing, and then there is a setback.
Thanks.
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We too have used it for our daughter and it greatly helped her fall asleep. Our DAN dr. recommended it, and he is quite conservative so I believe it to be safe. As always, one must do one's own research though. I have a friend who has started using it to stay asleep, as she would wake up during the night and not be able to get back to sleep. She swears by the time-release variety, saying she sleeps through the night with it. Just be careful about dosage, because with this, more is not better--more can make you sleepless as another poster has indicated.
and i assume this is 100% safe? I was reading about it and turns out its only legal in America so there has to be a reason for that -
Hello,
I'm kind of new to the forum. It sounds like Topamax seems to be working well for several people. Does anyone know why it works?
Thanks!
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momaw,
Hi, you have your daughter on a special diet that has hepled her so much, as you have explained. Just wondering what the diet is and what does your daughter eat in a typical day? Thanks Char...
She is on a gluten/casein/soy/corn free diet, sugar free (she tested allergic to cane sugar), coconut product free (allergic as well). We also eat only organic fruits and vegetables, "natural" poultry, and organic beef, as well as fish (limited fish as she only likes talapia and cod). Basically meat and veggies, which is why going to a low salicylate diet is so difficult--it eliminates a huge portion of what she can eat. We can't do it for long, as she needs a lot more variety in her diet.
A typical day might be:
Breakfast--pan simmered chicken or fish, cauliflower (mashed with butter)
Lunch--mashed potatoes, hamburger patty
Dinner: Turkey and vegetable soup
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Betty,
I can tell you that when I had too many salycilates my son's tics returned in multiples! They were full head swings/jerks vs. eye blinking. I learne this a while ago. I recently tried to go GF and dairy free for his attention issues.....is tics returned GREATLY...I realized I was high salycilate again. I reduced them and went back to my supplements. It worked......
I think amino acids and low saylycilate are key for my son! GABA, NAC and Aceytl L l Carnitine........I hope this information helps!
Tracey111,
I am very interested to hear about how your son has been affected by the salycilates. Would you mind telling me, is he tic free when he is on a low salicylate diet? How do you do it!!! We are gluten/casein/soy free and now with this, it seems like there is NOTHING this child can eat. I was at a real low point today, so tired of denying her everything. She has been enjoying bananas and chocolate at treats, but read today in some of the literature (if I'm interpreting correctly) that bananas block the salicylate pathways, and chocolate is a no-no too, so it just kind of put me in a tailspin of despair today. Such a little thing, but the proverbial straw that broke the camel's back for me. Your response was much needed hope. Do you choose just from the low salicylate list, or from the "medium" list as well? Also, how did you know which supplements to use, out of the many that are suggested? Is there somewhere that you can point me that can help me with dosage info? We have a DAN Dr. that we use, but at this point we have spent a lot of money and have to financially recuperate for awhile. Do you use other supplements than the ones you listed above?
Thanks so much for your response.
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Betty/momaw,
Betty, are you using no fenol (enzyme)?
http://www.enzymestuff.com/conditionsensitivities.htm#10 (lots of salicylate info here)
Based on the enzyme action in No-Fenol, these types of enzymes may work more on true salicylates due to their carbohydrate group and not really on the entire class of phenols. Many of the artifiical additives are true phenols derived from coal-tar and the enzymes may not be that effective on artificials, although they totally rock! on real foodsThis is probably the best place I have ever seen info constucted in one place (pathways of intolerance) You will probably need to read it several times to really grasp all of the implications
http://overcomingcandida.com/autism_pst_vi...ns_minerals.htm
I would also at least scan this page. If you apply some of what you learn from the PST article, you can start piecing together more of the info contained here.
Yasko genetics page
http://74.125.95.132/search?q=cache:0gVAX8...w.vsan.org/rok-
Kim,
Thanks so much for these great resources. It is going to take me awhile to digest them. It really help in understanding how this all works. So, out of the plethera of suggestions, how does one know where to start? It is a little overwhelming.
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momaw,
Could you say which supplements that your daughter was reacting negatively to?
Have you tried any digestive enzymes?
I have to say that I am not sure which of the supplements my daughter was reacting to, as she was always on so many at a time. The ones I know for sure, have to do with the PANDAS issue that she also deals with. Grapefruit seed extract was not good, and antibiotics (even when they were made up at a special pharmacy to eliminate any fillers) she had a severe reaction to--head snaps so bad I was afraid she was going to have brain stem damage! Even when I eliminated these, she was still not doing well, though she was on Bon-Tech basics and a few other things like enzymes, probiotics, etc. I wish I knew what specifically she was reacting to, but I just became so discouraged and frustrated and trying to figure it out (never seeing improvement by eliminating some and leaving others), that I opted this route of eliminating all and going with an ultra clean diet. Initially I thought to eliminate them all so I could just have a baseline to start over with, and add one at a time, but she is doing so well off of them and just doing the diet changes that now I am afraid to add any back. The salicylate issue seems to maybe be the last piece of the puzzle, as when we really watch them, she is tic free. I just hate to see her missing out on all of the wonderful nutritious foods that have moderate to high salicylates, not to mention how boring a diet is without them.
I have tried Houston enzymes, and I didn't see much improvement with them.
Thanks for your reply, and I welcome any further comments or suggestions.
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Hello,
I have a 12 year old daughter with tics (although with diet changes she is doing WONDERFULLLY now), and an 18 year old daughter who struggled with OCD and extreme mood swings from age 3 until just two years ago. I just wanted to share with you some encouragement on the road to non-medication for mood disorders. For several years we tried different medications for our daughter with OCD. The side effects were awful--lethargy, ugly meltdowns of rage and tears, etc. When we decided to get her off of meds, the huge rage meltdowns vanished overnight, though she still of course had severe OCD and mood swings. From the time she was three, I would dread hearing her footsteps on the stairs in the morning, as she was "loaded for bear" from the moment she got up. When we got her off the meds at about age 13, we immediately started high doses of a high quality (Standard Process) Inositol, and fish oil. She improved by about 50 percent, she showed more improvement than she ever did on the meds, but she still struggled, alot. About two years ago, we had her tested for food allergies, and found that she was allergic to dairy, gluten, and a few other things. Once we took her off of these things (I think the dairy and gluten affected her the most), we started seeing improvement, gradual, though immediate, and she continued to improve for about 8 months, until which time she showed total remission. I have to say that we also renovated our whole eating lifestyle, and at this time eat virtually no processed food. I buy whole, basic, unprocessed food, clean and organic (we also raise our own organic beef and chickens), and fix it from scratch at home. We seldom ever eat out, as there is very little food out there without additives. Even the french fries at most restaurants are often dipped in milk or have some type of seasoning with gluten--you have to check EVERYTHING. We pack our food usually if we are going to be gone over mealtime. We bought a juicer and use it for vegetables in addition to the large amount of veggies we consume. We homeschool, which certainly helps the issue of control over what is eaten.
Anyway, this is a child who struggled with severe OCD for 13 years, who can now drive (and has more courage than experience!) when she was way too afraid before as she feared she might hurt someone, attends college, and is now happy, happy, happy--she has the most joyful, even temperament than anyone in the family (seven of us)! She also has a very profound sense of compassion for those suffering.
It has been a very long road with years of tears and prays for my baby. The changes were not easy, but certainly a lot easier than living with this crippling condition. She fought the food changes at first, but she was old enough that when she saw the changes that were happening, she owned the diet 100%.
I know what a HARD time this is. The answer is not as "easy" as diet changes for most people, but we tried many, many things, and so I just want to encourage you to not give up, no matter how many road blocks you encounter, and pray!
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Hello,
My 12 year old daughter has had a tic disorder for two years now, which has greatly improved with dietary changes (identifying allergy foods, eliminating gluten and dairy etc., cooking only whole, clean, basic foods all from scratch). She has gone from 7 concurrently running tics to one, and during waning times, none at all. During waxing times, I still try to find the additional pieces to the tic puzzle. We have tried LOTS of supplements, but she is very sensitive and supplements seem to make her tic more, and she always seems to do best without them.
Lately I have been exploring the salycilate/phenol connection more, which initially (one month trial) seems extrememly promising. Her tics do seem possibly connected to foods high in these compounds. It is sooooo exciting to find something that might be in our control. The difficulty is that the poor kid already has such a limited diet, and foods high in these compounds are so nutritious, that I want to find out more about how to clear the "pathways" better so that she can eat some of these foods.
I have tried to read the posts that address this issue, but I feel I am getting bits and pieces. Would someone take the time to give me a little primer on how the body is physically reacting, what the terms are so that I can do more research, and what people have found that help them be able to tolerate more of the foods high in salicylates/phenols? What Supplements? Epsom Salt Baths? What else?
Thanks so much.
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I am wondering if anyone could direct me to a more complete salicylate level list than I am finding on the internet. I am trying a low salicylate diet (in addition to the multitude of other diet/supplement/environmental interventions) with our 12 year old daughter who has been ticking off and on for two years now. We eat a diet free from artificial ingredients, so that isn't so much the issue as the natural salicylates. There are some fairly good lists online, but I when I come to things like coconut flour, rice vinegar, horehound (medicinal herb for colds), teff flour, sorghum flour, etc., I get stumped. We use alot of "alternative" type food because of gf/cf diet.
Thanks in advance.
One Year - Tics Very controlled - What now?
in Tourette Syndrome and Tics
Posted
Hello,
I was reading through this older post and had a question. You state that your son has no symptoms now. Did his symptoms disappear after you switched from GABA to tryptophan, or was it before?
Thanks!