lherbert

Sheila-please re-email me at leslieherbert1@hotmail.com. I did not receive your email. I think my account was too big. Deleted old messages. Thanks lherbert

Bonnie- I have appreciated your responses. I hope you don't mind, but I am in need of some guidance because I feel like I am about to give up. I felt like I was really on to something with my 3 year old child who has a gasping tic when I started seeing some drastic improvements when I started the Feingold diet program. Then we went to a reputable environmental doctor who after hearing history and looking at a urine organix profile feels like my child has leaky gut and toxicity. (???) The MD did a series of blood/labwork which is being sent off for analysis. They did do a dark field microscope assessment which showed lemon shape red blood cells and some slow moving white blood cells. Her comment is that the lemon shape is irritable gut and white blood cells don't look active. She started her on vitamins that I previously emailed you about. Surprisingly, she did not react to the orange flavor fatty acid one, but there has been reaction to the Immune 26 which is a byproduct of egg for 3 days straight and possible Bvitamin. I don't think she has an allergy to eggs. We also started her on Nyastatin which is suppose to kill the yeast. No known yeast infection. The MD wanted there to be an increase in tics which there has been, but I don't feel that it is due to the Nyastatin and now she is reacting to food that she is eating that is on the Feingold. She wants us to build up her immune system before we give her DMSA to chelate her in 1 month. My question to you is have you is a-have you heard or researched gasping as a tic. There seems to be a wet/mucous quality that I can hear in her before she gasps. The tic is usually immediate-while she is eating or right after.b-what do you know about DMSA and can it be harmful in a child that may not have toxicityc-My daughter's citric acid cycle was high in these areas citrate, isocitrate, aketoglutarate, succinate, malate, hydroxymethylglutarate. High fatty acid metabolism adipate, ethylmalonate. High pyroglutamate as a detoxification indicator and high phenylacetate as bacteria. Does this sound like metal toxicity to you? I am willing to try alternative measures as long as I don't harm my child in the process and I am skeptical because this is a theory of hers, but I don't know if it is valid based on just these results. Thanks. lherbert

Thank you for your reply and valuable input. I have another question. In your practice of hematology, did you have any red blood cells that you examined that were "lemon shaped/tear shaped" in nature and if so, what was your interpretation of the possible meaning of this. I was told by my environmental physician that this could be gastrointestinal disturbance. Just wondering if there could be any other possible explanation. Also, what is your meaning of "dark field microscopy." Thank you. lherbert

Bonnie- Hope you can answer this. I have tried your product before on my daughter, but this was before I found drastic changes in my daughter's tic by removing artificial colors/preservatives from her diet. I went to an Environmental Doctor for guidance who indicated that your nutritional supplement was good (her remark was that it does not contain copper which was a good thing) however, at the end of the visit she felt like my child's tic is related to metal toxicity and leaky gut (she had MMR reaction at 13 months)and recommends cleansing the gut using Nyastatin and also recommended nutritional supplementation in the following: Coromega omega-3 fish oil supplement (contains orange flavor- I am scared to try her on it since it contains flavor), Co-enzyme Q-10, Biomin (all of the ingredients in this are aspartate), taurine and carnitine as amino acids, calcium, coenzyme B vitamin, zinc citrate, immune 26(have no idea what is in this product), and a chewable digestion product. Wanted your input. Do you see anything contraindicative to your research in the proposed nutritional supplements. I still have your product too and am considering just using those. Also, what do you think of the "leaky gut theory due to metal toxicity?" Thank you. lherbert

Day 2 was successful as well without a single gasp. All linked to not putting food additives/preservatives in her body. Yeah!!! Now, I am getting fired up that I have been researthing and stressing myself out for over a year now and in the meanwhile, I've been "poisining" my child while the doctors say "we can put her on Haldol." Something is so wrong with this picture. Anyway, thanks to Latitudes, I feel like I am on the right track. I will be going to an Environmental Doctor on July 8th. I am looking for some input on what tests to request. Could this tic be metabolic/nutrition/allergic/or immune system related or do they all role up to be synonomous with one another and, if so, do I attempt to give my child her next round of immunizations? Looking for suggestions. Thanks. lherbert

I wanted to let everyone know, especially Jeff and Sheila, that for the first time in about 10 months, I did not hear my child gasp all day. The only thing that caused this reaction is we have totally cut out food additives, preservatives/MSG (Feingold program-with a few exceptions based on Sue Dengate Fed Up With Asthma website) I have a few other theories of what is triggering this. She presents with a high citric acid cycle and I question the metabolism/respiratory chain link and/or food intolerance/immunity link. Scared to death to have to get her immunized again (MMR coming up in about a year-she reacted to it the first time around.) Does anyone else feel that immunizations may further negatively effect a tic disorder. Anyway, give me luck and prayers that we get the same positive reaction today. lherbert

Dear Phyl- Thank you for your reply. I will have to try the paperbag treatment the next time she has a serious spell. For what we have tried lately is the Feingold diet per Jeff's response and while not everything on it is working, some of it has. I think my child reacts to the salicylates (especially orange juice!!!!!!!!!!) apple, even pear which is on the Feingold program. Preservatives affect her as well. Mrs. Dash, I think was a culprit (it is on the program- I checked the label and it has orange peel in it) I am currently writing everything down and definitely see a strong reaction to things she is eating/drinking. I have also ordered the book Fed Up With Asthma by Sue Dengate in regards to the FailSafe diet per Debbie's suggestion. In regards to yeast, we did a urine analysis and yeast was not suggested. I am not sure about clostridia (what exactly is it?) We are going to an environmental MD in early July. For anyone reading, please keep us in your prayers. I will post results for anyone interested. Thanks lherbert

Jeff-Thanks for the input. This is all a start for us on the Feingold. (Barbara-you may want to try it out.) I will post on the feingold website as well. As far as the tics go during sleep, on the most part she does not. But there was the time when she had the bad tics before I linked it to the orange juice she was drinking and she was so tired and fell asleep and she ticced a little when she first went to sleep. Otherwise, you can imagine- I have NOT given her any more juice. Also- I am wondering if because of the reaction to the juice and poptarts if there is a tic because of there being a relation between tics and sugar content. I read somewhere that sugar/fat increases the body's production of histamine. lherbert

My daughter is 3 and I started using Bonnie's supplements during a trial period, but was never able to get up to the 10 vitamins a day protocol that was recommended. We were able to get up to 3 and 4 vitamins in a juice cup that she was unable to detect and were able to do this 2 x a day which equaled up to 8 vitamins. There was NO way my child could take the fish oil supplement despite repeated attempts. She could not swallow the pill whole and we could not disguise the taste of it in anything. So, I have discontinued the vitamins for now until July when we go to another MD who can hopefully determine what if any nutritional deficiencies my child may have. I am putting the vitamins back for now, but may attempt again later. lherbert

Dear Barbara and Jeff- Barbara- I know what a desperate feeling you have trying to find something that works for your child. I, too, went to a child neurologist at Children's Hospital in New Orleans. She recommended Haldol, but my husband and I are too fearful to go that route. (Just out of curiousity, was your doctor's name Dr. Weimer? ) In the meantime, we have found the Feingold diet which is my next question to Jeff. Jeff, we have initiated the diet, but have found that my child has reacted to the Kellog's brown cinammon poptarts. Did you find some inconsistencies with your tics when you went through Stage 1 of the program. We are also finding that sometimes my child has her tic when she first awakens in the morning and she hasn't eaten or drank anything yet. You said there is about 6 weeks of a detox period. What makes the tics increase during that time. Thanks for any input. lherbert

Debbie- I had heard of the lifes a twitch website, but not the Australian website. Thanks. For the first time in a while, I feel optimistic. Jeff- I will definitely be visiting the Feingold website as well. Thanks for all of your input. Have a great day. Will be chatting with you soon. lherbert

Jeff- THANK YOU. I responded under the 3 year old with a gasping tic. Please keep me posted. I just got the Feingold program in and have just started it and I am seeing some positive responses. Any other input is greatly appreciated. lherbert

Debbie and Jeff- Since I last posted, I got in touch with Sheila from Latitudes who sent me all the editions of the Latitude publications which I read backward and forward. Meanwhile, my daughter got sick, ran temperature, and didn't eat anything all day. What she did do was drink. What I noticed was that after she drank orange juice, she developed her tic about 20 minutes afterward and gasped for 3 hours straight. (What is scary is that it is almost every breath-kinda like an asthma attack). Well, since she wasn't eating, I thought this was something, so later on, I tried it again-same response. I couldn't believe that I might be on to something. My husband came home and I told him my theory about the juice being a trigger and he wanted me to prove it, so sure enough-same reaction. I then started a diet diary of everything she is putting in her mouth and just got the Feingold program in and I am seeing some favorable responses. She still has the tic if she is really excited and tired at the same thing. Jeff-any of your input is greatly appreciated regarding the Feingold program. If there is anything that works for you and your family, please respond. How old are your kids and how are they handling their tics. I get so worried about my child's self esteem. She will be going to school next year and I am curious as to how you approach the tics with teachers and are they suppportive of the Feingold program at school. Thanks -lherbert

Debbie- I just spoke in great lengths with Sheila from Latitudes.org and she was helpful in regards to tics in general and trying to find triggers for the tics. Have you ever been predisposed to the gasping tic as a response to something you ate such as an allergic reaction? Did you get any insight from the medical profession regarding the spasming diaphragm. My MD requested a MRI. We haven't decided on doing that yet. I am just trying to find out triggers right now. Just curious as to what some of yours are for that particular tic. Sometimes I can hear her talk and her voice will go wet like one would near to clear the throat and I know she is going to gasp. Have you ever done that? Thanks lherbert

Debbie- I want to thank you for your replies. I can honestly tell you that I have felt very alone in this quest to help my child and you have given me at least some insight into this tic that even the doctors have been mystified over. I am sure that I will have more questions for you that I am unable to post right now. Please keep checking this post if you have the time. I just wanted to tell you I appreciate your response. Have a great day. lherbert