tag:blogger.com,1999:blog-8446226862941350989.comments2023-04-28T08:03:35.642-05:00Amazing and AtopicSelenahttp://www.blogger.com/profile/12900384911873331412noreply@blogger.comBlogger448125tag:blogger.com,1999:blog-8446226862941350989.post-81066225289233709942018-03-25T14:59:32.886-05:002018-03-25T14:59:32.886-05:00Thank you for your comment. I really miss that sho...Thank you for your comment. I really miss that show and might need to re-watch it. :)Selenahttps://www.blogger.com/profile/12900384911873331412noreply@blogger.comtag:blogger.com,1999:blog-8446226862941350989.post-15444660705392438732018-03-25T12:47:33.539-05:002018-03-25T12:47:33.539-05:00Thank You. I just watched that episode myself and...Thank You. I just watched that episode myself and I appreciate your observations about it. I love how the characters all came together to assist on many levels, despite class differences.Susan Voss-Rothmeierhttps://www.blogger.com/profile/03074559599331461887noreply@blogger.comtag:blogger.com,1999:blog-8446226862941350989.post-9160829424895117712017-12-07T00:07:21.956-06:002017-12-07T00:07:21.956-06:00Found this article that also helped me with regard...Found this article that also helped me with regard to severe dairy or cow's milk allergies and asthma inhalers: http://breathepa.org/3297<br />A quote from the article: "Pharmaceutical grade lactose contains small amounts of milk protein."<br />Years later this discussion is still relevant so thank you, Selena, for your post!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8446226862941350989.post-33890796167274348722017-11-24T12:27:34.811-06:002017-11-24T12:27:34.811-06:00Several years ago went into anaphylactic shock aft...Several years ago went into anaphylactic shock after taking one bite of a flaxseed muffin. Emergency<br />room, hooked up to oxygen & epinephrine. It closed down my respiratory system, facial swelling (I<br />was unrecognizable) severe itching,etc. ER told me next time I would die if couldn't get to hosp<br />in time. Even inhaling flax seed particulates triggers wheezing and more. Now it's in everything.<br />Have to even be careful with food for my cat--if, hard or soft, & contains flaxseed, just petting her<br />causes allergic reaction. Food manufacturers have no idea what flaxseed is doing to people.<br />Please spread the word. Thanks. CP<br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8446226862941350989.post-30682349256551370072017-05-20T11:35:50.461-05:002017-05-20T11:35:50.461-05:00I highly encourage you to join the "Chinese H...I highly encourage you to join the "Chinese Herbs for Allergies" group on FB. You can search old threads on this topic. IgE is, unfortunately, a highly imperfect biomarker and has been known to rise before falling, or any other number of scenarios, without always indicating progreys in a direct fashion. (((HUGS))) I know it's hard, because it's hard work and we want easy to read "reports" that aren't available. Try not to be too disheartened. Always discuss your concerns with Dr. Li, as she can provide individualized guidance. Selenahttps://www.blogger.com/profile/12900384911873331412noreply@blogger.comtag:blogger.com,1999:blog-8446226862941350989.post-43657248416893429492017-05-19T21:56:25.639-05:002017-05-19T21:56:25.639-05:00Hi . I've been with Dr. li for a year . My dau...Hi . I've been with Dr. li for a year . My daughter is 6 years old and her IGE test results came 3-4x higher than the year before. Almost all the tree nuts and her peanut IGE skyrocketed ! I am really confused whether I should continue with her protocol or not. Has anyone had any experience with the IGE going up and then gradually coming down? Any advice would really help. Thank youRachaelhttps://www.blogger.com/profile/07045412135642908735noreply@blogger.comtag:blogger.com,1999:blog-8446226862941350989.post-76834144826774590242017-03-03T06:48:12.387-06:002017-03-03T06:48:12.387-06:00So glad you have posted this, as we ran across thi...So glad you have posted this, as we ran across this issue last year. And now the insurance company will no longer cover Flovent inhaler (not diskus, as above). QVAR is one of the alternatives, and though I didn't see lactose as an ingredient on their prescribing information, it helps me to see it confirmed by an advocate. My son is milk allergic and also allergic to baked milk. He never outgrew it. Thanks again!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8446226862941350989.post-7062384197350831892017-01-05T13:08:00.852-06:002017-01-05T13:08:00.852-06:00It can certainly be a case of trial-and-error, fin...It can certainly be a case of trial-and-error, finding the right options for our children. I'm glad this has been of some help!Selenahttps://www.blogger.com/profile/12900384911873331412noreply@blogger.comtag:blogger.com,1999:blog-8446226862941350989.post-5266656828519125532017-01-05T13:04:01.989-06:002017-01-05T13:04:01.989-06:00Thanks for this post. I transitioned my daughter t...Thanks for this post. I transitioned my daughter to Hemp milk and then second guessed myself. Thinking maybe flaxseed or quinoa would be better. I agree that the hemp is the best option.Karenhttps://www.blogger.com/profile/16835273260898298759noreply@blogger.comtag:blogger.com,1999:blog-8446226862941350989.post-37053093579678084272016-09-28T16:38:33.772-05:002016-09-28T16:38:33.772-05:00Thank you for reading! I'm sorry you've re...Thank you for reading! I'm sorry you've received a lot of positive results on your testing, but hopefully your allergist will carefully go over the results with you, as IgE can be so hard to interpret. I have written quite a bit about it, but there are still no definitive answers. I wish you luck on your search for answers and hope you are able to make some progress, soon!Selenahttps://www.blogger.com/profile/12900384911873331412noreply@blogger.comtag:blogger.com,1999:blog-8446226862941350989.post-37006263135186720282016-09-28T16:18:56.892-05:002016-09-28T16:18:56.892-05:00I'm so sorry - I thought I had replied! If you...I'm so sorry - I thought I had replied! If you are a member of the "Chinese Herbs for Allergies" group on Facebook, Henry Ehrlich recently posted something that might help. (http://bit.ly/2dAybuz) There is also a file on "Managing Expectations During Treatment" that you might also want to check out. (http://bit.ly/2dlUcMi)<br /><br />If your child is young, you generally have time on your side, so I would personally lean towards hanging on a while longer, but that doesn't take into account the expense, labor, etc., and I believe it's a very personal, individual decision. I wish you the best!Selenahttps://www.blogger.com/profile/12900384911873331412noreply@blogger.comtag:blogger.com,1999:blog-8446226862941350989.post-20012427540145463582016-09-28T16:09:30.663-05:002016-09-28T16:09:30.663-05:00Wow! That's amazing that so much is helping he...Wow! That's amazing that so much is helping her and you're able to start weening her off of things. I'm on antihistamines daily for years as well, and today I got some results back that came up moderately positive on almost everything your daughter has too (give/take a few) - I was looking for ways to interpret and read the results and stumbled upon your blog. Definitely interested now that it looks like I'll be doing some of the same. Thank you for sharing your story!Jackiihttps://www.blogger.com/profile/17349484709059931084noreply@blogger.comtag:blogger.com,1999:blog-8446226862941350989.post-49911254749520007182016-09-15T20:11:00.214-05:002016-09-15T20:11:00.214-05:00Hi, I am happy to hear that Dr. Li's protocol ...Hi, I am happy to hear that Dr. Li's protocol is working so well for your daughter. We have been seeing Dr. Li as well and treating my son for 2 years now (he is currently 4 years old) and are debating whether or not to continue. On the positive side his asthma (always mild) is now completely controlled with only occasional steroid use during illness, and illnesses have also become much less frequent/severe. Luckily he has never had eczema. Unfortunately his specific food allergy IgE levels have continued to rise significantly in spite of our strict adherence to protocol, though his total IgE has remained the same for the past 18 months. Curious if you have heard anything about some children taking much longer to respond to treatment? Also wondering if his young age is a factor - do you know any success stories from parents of very young children? Thanks so much and wishing you and your daughter all the best!allergy mamanoreply@blogger.comtag:blogger.com,1999:blog-8446226862941350989.post-79233246821259950282016-09-13T21:07:05.372-05:002016-09-13T21:07:05.372-05:00Thanks! I think we're going to start with raw ...Thanks! I think we're going to start with raw seeds, first, because Sunbutter has cross-contact with flax, and we haven't cleared that hurdle, yet. I agree that sunflowers are a great source of nutrition! Selenahttps://www.blogger.com/profile/12900384911873331412noreply@blogger.comtag:blogger.com,1999:blog-8446226862941350989.post-57081673137425783382016-09-13T20:30:59.841-05:002016-09-13T20:30:59.841-05:00Selena, i am so glad to see this progress! I am a ...Selena, i am so glad to see this progress! I am a big fan of Sunflower seed butter, this has become our family's go-to nut butter replacement, but honestly i prefer it over peanut butter both for its milder taste and for its nutrition. I hope your daughter likes it too! <br /><br />--PolinaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8446226862941350989.post-37765229994314461752016-09-13T20:07:11.999-05:002016-09-13T20:07:11.999-05:00Thank you, Holly! <3 I'm so glad you're...Thank you, Holly! <3 I'm so glad you're feeling the same! :) Selenahttps://www.blogger.com/profile/12900384911873331412noreply@blogger.comtag:blogger.com,1999:blog-8446226862941350989.post-91102810319064512292016-09-13T19:57:14.615-05:002016-09-13T19:57:14.615-05:00Congratulations Selena! This is so wonderful. I fe...Congratulations Selena! This is so wonderful. I feel the same way, regarding the tunnel. See you on the other side :-) . <3Hollyhttps://www.blogger.com/profile/16578682121095527175noreply@blogger.comtag:blogger.com,1999:blog-8446226862941350989.post-72692478667766176922016-08-21T19:47:47.398-05:002016-08-21T19:47:47.398-05:00With eczema and asthma and overall health, we saw ...With eczema and asthma and overall health, we saw gains rather early on. I feel that her overall resilience and resistance to illness has greatly improved, as well. Her IgE levels have continued to drop and we are in the beginning stages of planning the slow introduction of some foods back into her diet. We have introduced "new" foods into her diet, along the way, and these were foods for which she had no reaction history and/or no positive test results. I'll report more of the details in my follow-up post.Selenahttps://www.blogger.com/profile/12900384911873331412noreply@blogger.comtag:blogger.com,1999:blog-8446226862941350989.post-79791526286023866512016-08-18T14:32:30.545-05:002016-08-18T14:32:30.545-05:00Thanks so much for your response! How long did it ...Thanks so much for your response! How long did it take before you <br />Saw noticeable improvement?yappingnursehttps://www.blogger.com/profile/01894952813871086101noreply@blogger.comtag:blogger.com,1999:blog-8446226862941350989.post-16700740892625139772016-08-17T20:01:18.498-05:002016-08-17T20:01:18.498-05:00I haven't had a chance to write my latest upda...I haven't had a chance to write my latest update, but our most recent labs are looking great. :) We did have a very strange asthma-related incident recently, which I also need to write up, but it was an anomaly, given how well my daughter has been doing, overall.<br /><br />Treatment with Dr. Li is typically for complex cases. Her main job is her lab research, but she works long, hard hours to see patients a few days out of the month. Her capacity to take on new patients is limited, so I would only advise pursuing her help if you have a complicated case (multiple food allergies, asthma, eczema, etc.) and the ability to tolerate writing a "blank check" to treatment. I don't mean to put it so plainly, but monthly costs can fluctuate and nobody can know, up front, how long treatment will take. Most of cost of treatment is for the protocol items, themselves, which are exceedingly costly to produce, at present, as they are not at a stage of mass-production. They also go through so many phases of quality and safety testing. This is a "cutting-edge" treatment and therefore has "early adopter" pricing. Treatment is also very involved and takes dedication and long-term perseverence, so that must be kept in mind as well. I don't mean to sound discouraging, but this is a resource-intensive treatment for those who really need intensive help. For my daughter's case, I feel it's absolutely worth the time, money, and effort, but everyone must make that decision based on their own particular situation.Selenahttps://www.blogger.com/profile/12900384911873331412noreply@blogger.comtag:blogger.com,1999:blog-8446226862941350989.post-80251017500383390802016-08-17T15:24:13.735-05:002016-08-17T15:24:13.735-05:00Hi Selena,
I was wondering how your child is doing...Hi Selena,<br />I was wondering how your child is doing now. Also, I found out that Dr. Li does not accept insurance.If you have been following her for 18 mos, with the cost of the herbs/creams and follow up visits, I was wondering if she provides some sort of price negotiation. Thank you.yappingnursehttps://www.blogger.com/profile/01894952813871086101noreply@blogger.comtag:blogger.com,1999:blog-8446226862941350989.post-56147923291596923292016-07-15T20:34:53.628-05:002016-07-15T20:34:53.628-05:00I just came across this post which is now about 3 ...I just came across this post which is now about 3 years old. Since then Auvi-Q has been recalled and the price of Epi-pens is now $600+ for a 2-pack. We now drop $1200 a year on them for my 8-year old son. What a scam. I work in the health insurance industry and recently attended a seminar where a pharmacist said that the cost of the actual epinephrine is about $1 per pen. The 'technology' of the auto-injector is over 25 years old. I repeat - what a friggin scam. I beg someone to come out with a better/cheaper delivery system. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8446226862941350989.post-42200356418561948532016-06-15T16:25:14.002-05:002016-06-15T16:25:14.002-05:00I want to tell you how happy I am that you have th...I want to tell you how happy I am that you have this blog and are helping people, whether it be coping with their allergies, their new life, or anything else. My daughter completed oral-immunotheraoy (OIT) treatment with my doctor in private practice and it has changed our lives. Sending the message that advancements are on the way, whether it be by Aimmune, Peanut Patch, the peanut pill, or OIT with no medicine like my daughter's treatment, is important, as it gives hope for the future for everyone. No solution is for everyone in the world, but I am confident that most of our issues will be addressed by these options.<br /><br />I don't throw the word cure around, but I do like the peace of mind and visual evidence of tolerance everyday when my daughter eats her peanuts. I do like that research has shown that those who complete OIT and maintain for two years have been able to tolerate 10-12 peanuts without reaction after a month of avoidance. Half were able to eat 24+. Of those who couldn't eat more than 12, their reactions were less severe than pre-OIT. I don't plan on avoiding peanuts for a month or longer, so I feel confident in our approach. I know that we could skip if sick or something and still be fine.<br /><br />Having said all of the above, I don't blame anyone for waiting or judge anyone's choices on which route to go. Safety and improvements for the future are all of our goals.Anonymoushttps://www.blogger.com/profile/15751827544685256926noreply@blogger.comtag:blogger.com,1999:blog-8446226862941350989.post-28769855692929814662016-06-05T16:55:46.541-05:002016-06-05T16:55:46.541-05:00I agree, it can all be so confusing. The problem i...I agree, it can all be so confusing. The problem is we're working with things that behave a certain way "on average" or "in many cases", but our children can be very unique. Seeing very low IgE results and high reactivity has definitely been seen, so it's not impossible by any means. Some people can even show up negative and react, and the rare individual can have high IgE and no reactivity. <br /><br />IgE testing is all we have available, at the moment, so we try to make the best of what we have, but it is so very far from perfect. I don't think there's anything "wrong" necessarily with your son's results - it's just that there's something "wrong" with IgE being our only quantitative measure to work with...I know my series of posts "defends" the use of IgE testing, but I still find it a flawed biomarker. It can have some utility, but other times...no so much. (((HUGS)))<br /><br />The most important thing to pay attention to is how the body actually reacts, in spite of what the lab sheet reads. One of these days we will have better tests available, but it could be a very long time. Don't let anyone tell you that your child's allergy isn't "real" just because he has low numbers. You know your son best and have seen the proof in real life, versus in a test tube. Selenahttps://www.blogger.com/profile/12900384911873331412noreply@blogger.comtag:blogger.com,1999:blog-8446226862941350989.post-81109011852492967222016-06-05T16:49:16.113-05:002016-06-05T16:49:16.113-05:00This is all so confusing, I don't think my son...This is all so confusing, I don't think my son's results are correct. He got .37 for macadamia nuts and .25 for pistachios, however, if he eats something that had just been touching those nuts, he has an immediate reaction. He got 2.70 for walnuts and .98 for peanuts, yet has no reaction to either. I am so lost.....Anonymoushttps://www.blogger.com/profile/14042479451940565212noreply@blogger.com