Betty04

Myrose, Can you tell me which ionic magnesium you use? My son is 4 and won't swallow pills so magnesium has been a challenge to get into him. Does the ionic magnesium have a laxative effect? What dose do you give your daugther? TIA!

Kim, Is it possible to get the links to the forums/threads you mentioned? I am trying to figure out what to give my son regarding the B vitamins. He initially responded very well to p-5-p and then things worsened. TIA!

In our case the wheat and corn allergy were in the 'red' zone, which means our son was highly allergic to them. We also have not seen a major issue with yeast (although we tested after having him on a candida cleanse diet for four months w/o proper testing, so who knows?) I am not sure how severe the corn intolerance is in your case, but I will tell you that I saw an improvement within 24 hours on the corn. He was a daily bed wetter and the first thing that resolved when we eliminated the corn completely was the elimination of the bed wetting problem. Even now if he gets just the slightest exposure I can be guaranteed that he will wet that night. It is weird. Corn intolerant folks all complain of similar symptoms. I just wonder if you see any of these: irritability, tiredness, dark shiners under the eyes, inability to concentrate-- sort of brain fogginess. To me the symptoms seem similar to the gluten intolerant folks. I see in my son a sort of opiate effect. When he initially ingests it he gets hyper and silly happy, sort of 'drunk' and then when he comes down off of it he gets very moody, irritable and suffers a sort of 'hang-over' effect. It was a pretty consistent pattern with him, back then when I was still learning which foods were okay and which ones had hidden corn. Now when I introduce a new food to him even his teacher will recognize when he has gotten 'corned' by accident. 99% of the time when I call the manufacturer and really dig I will discover a corn connection. (Like the recent discovery with the EnviroKids gluten free rice crispy treats.) Part of me thinks you should experiment with the corn free diet and another part of me thinks a lot of this might be just plain stress. I don't know. My gut tells me that he would have never had such a great recovery on the GF CF SF diet if he was truly reactive to corn and it was still being provided regularly. Unless you have gotten more relaxed in the snack department then you were in the beginning. Also, I don't know how severe his results were for corn. My son had 17 allergies, many of them mild and moderate. He can eat all of them in moderation now without ticcing episodes, allergy shiners, or any other issues. But the corn and wheat are an absolute NEVER. If you really suspect corn it is not easy to eliminate and you have to do it right to get results. I was on a learning curve in the beginning and so my son's recovery was rocky at first, until I got a handle on things and learned all the hidden forms of corn. Jenny Connors http://www.cornallergens.com/ website is fantastic. You could also look at my thread on starting a GF MF diet (I use the term 'maize free' instead of 'corn free' so as not to confuse corn with casein and because in Europe and Australia it is often referred to as maize.) http://healthy-family.org/category/nutriti...on-a-gf-mf-diet Having said all this, my gut still thinks a big part of this is stress. Moving is a major thing for all of you, and moving across the country is HUGE for a little kid. My son was a mess when he started kindy. On the first day his teacher accidentally gave him two freeze pops (loaded with artificial colors and high fructose corn syrup). The poor kid blinked non-stop for nearly two weeks after that. He had a major lack of sleep and tons of beginner's anxiety about school. I can't imagine what he would have been like if we plucked him out of his life and moved to another part of the country. I think in time when he feels more secure and starts to bond with kids his age things will naturally subside. If you think your son suffers from allergy-related tics your best course of action is to treat for high histamine and watch the diet as you have. I will give my son Benadryl (dye free capsules) when he has had an exposure and I also give him methionine every day. This has been very helpful. BTW, the Benadryl dye free has sorbitol, which is a corn-derived sweetener. My son seems to tolerate it just fine but some highly allergic folks can't even tolerate the Benadryl. The liquid version has glycerin which is corn derived and will cause a reaction in my son. Finally, about salycilates-- We originally avoided them for Feingold. At one point I did notice him reacting to them. I read up on that and learned that high doses of B6 can lead to a salycilate sensitivity. We reduced the B6 intake and the sensitivity resided again. Thank you so much for your helpful feedback! Eliminating corn from your diet makes gluten-free look easy... and that's no small feat! Sweetners with corn are everywhere. I am not sure cornis even an issue, its just that we have come with far restricting his diet so why not try this to see if it helps. Honestly if I don't see an improvement I am thinking of adding back in some dairy and trying a strict Feingold for a couple of weeks. I also believe that a large part of the problem is stress and I am almost fighting a losing battle until he settles in. But I can't help but want to reduce any additional stressors on his immune system that might be contributing to his tics... I like the bucket theory explanation! One last question, I did have my son on 60mg of P-5-P, a high dose for his age. Do you have any info on the link between B6 and salicylates? Thanks again for all your time!

Caryn, thanks for your response. All my son's diet and supplements have been guided by his DAN doctor. We did have IgG testing last year (you thoughtfully responded when I was overwhelmed by the results) and that had the DAN doc recommend GF CF SF. I am just desperate and never cut out corn despite him testing posititve on the IgG testing. I thought maybe also salicytates might be a problem but we have always been on an organic, nothing artificial diet. My son has had candida testing with several different tests and they are always in the normal range and he takes 4 capsules of S. Boulardi daily. Long story on why we thought PANDAS. He had an explosive onset of tics after the flu shot. So obviously his immune system is involved in the tics. He had a long history of sinus/ear infections and his tics cleared with clindamycin after the flu shot episode. The tics returned after we removed his adenoids/tonsils preventatively. We tried diet and supplements for the past year and then in the fall retried the clindamycin and azithromycin with extremely positive results. But all gains were lost in our move. There may be an environmental allergy component was we moved from Connecticut to California? He is taking a nasal steroid for the past 3 weeks as we started it for a cold and his DAN doc thought it might be helpful to continue. But unfortunately nothing is working so I am just driving myself crazy to think what else I could do? I think I might just try to remove corn first while waiting for the Feingold material. Any advice on how long I might need to wait to see if he benefits from no corn or no salicytates? Thank you!

Hi, I could really use some advice. My 4 year old has been GF, CF, Soy and Nut free for almost a year. Maybe some soy in restaurants in the last month- but other than that we have had strict adherance. Back in October we started a trial of antibiotics to see if there was a PANDAS component. It resolved his tics about 90%. Then we moved cross country and his tics are the worst they have ever been despite continued antibiotics and strict diet of GF, CF, soy and nut free. I stopped most supplements because it was no longer worth the effort to fight and nothing was helping. He was on B12 shots 2x a week, folic acid, P-5-P, magnesium, calcium and probiotics. At this time I have only continued the probiotics because I am still giving him the antibiotics and I give him calcium because he does not have a dietary source on his current diet. I am desparate to help him but don't know what I can do. The move has been stressful and he started a new school. Maybe I just need to let time pass and he will settle down as he adjusts to our new home. But as I am sure you can relate, it is so hard to do nothing. However it is hard to make all these sacrifices and have no improvement! I order the Feingold progam earlier this week thinking maybe I should cut out salicylates. I have started to try this on my own this week as it takes 7-10 days to get the program in the mail. This has been the ultimate diet challenge as I really feel like I have nothing but meats and pears to feed him! I have also tried to cut out corn since we have never tried that. However it is impossible for me to cut it out entirely because I need to give him some pudding to take his antibiotics (he does not swallow pills) and I think the yummi bears that I use as his calcium supplements have corn in them since it is not listed as a corn free product. I feel I am driving myself crazy and have only seen my son worsen. I want to give up but can't... how can I not try to lessen the tics and we have also invested the last year in diet and supplements with a tremendous sacrifice to make it all work! Any thoughts would be greatly appreciated! Thanks!

I give my son azithromycin (aka zpak and zithromax) daily and he is 4 years old and does not swallow pills. The azithromycin is horrible tasting, I could not even get a compounding pharmacy to flavor it so that I could swallow it! He takes it daily and what I do is crush the pills (the compounding pharmacy actually does this for me and puts each one in a capsule for individual use- but you could easily crush them with a pill crusher from the drug store). I make pudding (you can probably use store brand, he is on a very restricted diet so I make it from organic Dr Oetkers mix from Whole Foods). I basically bury a pile of the crushed pill in the middle of a spoonful of pudding- you can't mix it in because the taste is still horrific! Hope that helps- you can ask me more questions on getting it in your daughter since I have been doing this daily since September! Hope you all feel better soon!

Thanks for the advice!

My DAN doc recommended we start pycenogenol to help my son's allergies. She said it takes about 2 months to see a difference. We have not started it yet because I have been changing too many other supplements but I do plan to try it. Maybe someone else has tried it for allergies that can comment? HTH

Thanks Chemar! You saved me an expensive and horrific mistake since my son starts to tic when he enters a pool with chlorine! Just curious, whether you make the cream with epsom salts or do an epsom salt bath, do you balance it out with calcium supplements. And if so, how do you know how much magnesium was absorbed to give double the calcium? Thanks again for your help!

Has anyone used magnesium oil or this DermaMag product? http://www.magnesiumdirect.com/zechsteinseabed.aspx Not sure if this is different that Kirkmans Magnesium cream or making magnesium cream from epsom salts? Just wondering as my son is on daily azythromycin and looking to increase his magnesium without interfering with the absorption of his antibiotic. Thanks!

Just wondering how parents have handled azythromycin in relation to magnesium supplements. I know they need to be taken separately but this link below states that azyth lowers magnesium levels? http://www.healthgazelle.org/magnesiumandazythromycin.shtml

Thanks so much for posting this. It is very interesting! Did Dr K explain the mechanism in which IVIG would address the altered permeability of the blood-brain barrier?

Hi, I would like to increase the dose of Vitamin B6 my son is taking. However I know it is important to keep a certain balance among the B vitamins. Does anyone know the ratios the various B vitamins should be taken in? Thanks!

Hi Faith, I did look at the find a practioner section on the NAET website... there were so many different specialists with various backgrounds so I thought I would ask if anyone had a positive experience with someone instead of blindly picking one? Unfortunately things are not going well presently. We are still doing the B12 shots as my DAN doc is also recommending them to correct his MCV level in his blood work, and it has been helping that. I just posted an update in the PANDAS forum as someone was asking about a connection to IGG levels. My son has been diagnosed by one immunologist as having an immunodeficiency disorder and I am waiting for blood test results from a second opinion immunologist to see if she agrees with the diagnosis. I am not sure if this even fits into an explanation with his tics. The second immunologist does not believe in PANDAS and wanted nothing to do with his tics and told me that we sometimes need to accept what medical science cannot explain! She was questionning any part of the immune system in his tics as she was trying to convince me to do a "vaccine challenge" to test how his immune system would function, despite me actually showing her a video of my son's explosive onset of tics after the flu shot. Her only comment was that she was going to give him a different virus than influenza! Anyway, she is respected as an expert in immunodefiency so I am hoping that she finds his immunoglobin levels and immune functioning to be in her opinion in the normal functionning range. The first immunologist recommended monthly IVIG and we are not ready to sign on for that but am doing a phone consult with Dr K on 1/12 to get his opinion. Thanks for letting me vent and I hope things are going well on your end... please send me an update. Happy Holidays!

Thanks, I googled him and did not come up with any info. Is there a website or any info on him on the web? Thanks again!

Linda, I was very interested in your post since my 4 year old was recently diagnosed with CVID and monthly IVIG was recommended. He has low IgA and IgG, and subclases IgG1 and IgG3 are low. We are currently waiting for lab results from a second opinion from an immunologist to see if this diagnosis is confirmed. The first immunologist we saw did believe in PANDAS but the second opinion one was very clear with me that she does not! I have always seen a connection between my son's tics and his immune system. He had an explosive onset after receiving the flu shot last year and has a history of sinus/ear infections that coincide with tic episodes. I have been curious if other PANDAS parents have had the IGG levels of their children checked? I am still trying to figure out any relationship? My son was doing extremely well on Azithromycin 250mg daily as he immediately improved on antibiotics and continued to improve to approximately 90%. BUT then we moved cross country and I am not sure what triggered his tics to worsen (maybe environmental allergies as in the east coast we were in the winter months and in my own (clean, air filtered) hom but then we were with family in San Diego for 1 month and now movved into a rental home in the bay area of SF)? I am confused and discouraged that my son lost all the gains he made with Azith and now am questionning the PANDAS connection and why I am even doing all the supplements and vitamins and a gluten/casein/soy/nut free diet when he is worse than he ever has been! I am setting up a phone consult with Dr K next week to see what his opinion will be regarding my son. If he does not feel he has a PANDAS/PITANDS component then I am not sure I can continue the extreme diet and supplements since nothing I am doing is helping! However I am not sure what the alternative is? Sorry for venting, and possibly stealing the point of your post... however I am extremely interested in your question for obvious reasons. I will repost an update of my son's lab results and any feedback for Dr K that may be useful to others. Thanks for listening!

Hi, Does anyone know of a NAET practioner in the SF Bay Area that they would recommend? Also would appreciate any feedback about experiences- success or failure- in treating allergies/tics. Thanks and Happy, Healthy Holidays to all!

Thanks so much for your response. We are going for a second opinion next week regarding my son's immunodeficieny and wanted to have the information you provided. Thanks again, Happy Holidays and am very glad to hear that your son has greatly improved!

Would someone please share with me Dr. K's IVIG protocol? Specifically what is the dose he uses and for how many days? My son has been diagnosed by Dr Gupta with an immune deficiency disorder in which the treatment he recommended is monthly IVIG. However the dose I believe is less than what Dr. K uses for PANDAS. Dr Gupta would be willing to do the higher dose to potentially address my son's tics. Dr Gupta started referencing Dr K's protocol and it did not seem to be what others have received on this board. Thanks for the help!

Hi, I'm certainly not the most knowledgeable about this but.... if I were to have another child, I would seek the guidance of a DAN doc on a safe vaccination schedule. My son has IgG and IgA deficiencies that were just discovered, so I would also want to know if there was bloodwork to screen for any vulnerability in a newborn's immune system. If you read my posts, my son had a tic explosion after the flu shot but in retrospect, looking through his records it started after boosters at age 18 months. I know its such a difficult decision and wish you the best!

Myrose, You can look adverse reactions up at the National Vaccine Information Center (NVIC, www.nvic.org). Here is the link below to enter the lot numbers specific to your daughter's vaccinations: http://www.medalerts.org/vaersdb/hotlot.html Let me know if I did not send the right links?!

Myrose, In case you don't know, you can look up adverse reactions reported for the 9 shots your daughter received. Just get a copy of her records and you can look it up by vaccine lot numbers to see if others reported any adverse reactions for those specific lot numbers. My son's adverse reaction to the flu shot was registered and there is detailed information about his reaction and others. Hope that is helpful?

Hi, We use DAN (Defeat Autism Now) doctor, Nancy O'hara in CT. She has a satellite office in Charlotte. http://www.drohara.com/DrOharaSatelliteLocations.htm Please feel free to email me with any questions.

I am sorry you are seeing some of the old symptoms return. It is a horrible feeling to think you've found the "answer" only to learn that its not the whole answer! Is there a chance that if your daughter was on weekly Azithromycin that increasing it to a daily dose will help or has she been on the daily dose? You have my thoughts and prayers and I hope the symptoms disappear soon.