Posted By Posting
Aug 05, 2010
dcd
Message for MAXSMOMMY regarding NAET/BioSet
MaxsMommy - I hope you get this! If there's a way to "private message" you, I'm not seeing it. But I would love to hear more about your experience with BioSet, please. What allergies was your son treated for, did the clearances "stick" with each one, and did the treatments ultimately make a noted difference with your son's reflux?
My daughter has pretty severe reflux and we are stuggling to get a handle on it. I gave NAET a shot, (because we had a free consultation and I wanted my mom - one of these "I'll try anything once!" people - to get off my back), and K tested positive for sensitivity to egg, yolk, amino acids, and milk casein.
Long story short - and because you know how this all works - the results were absolutely miraculous at first. Once cleared for the amino acids and milk casein in particular (they took two treatments), her reflux symptoms did a 180.
She stopped fighting her bottles, her chronic congestion/sinus infection cleared up overnight, she went from 20+ spitups per day to 2 or 3 - and the consistency completely changed (thicker, coin-sized dabs vs. thin, mucousy pools streaming out of her mouth an ounce at a time.) She went from waking 5-10 times per night to sleeping like a rock 12 hours straight without even waking to eat.
This lasted 5 days. On the fifth day, I literally watched the desensitation "fall off"...she spit up (back to the vomitlike consistency and amounts) all day, fussed with feedings, and slept like crap that night.
We took her back in, and he retested her and found that the milk casein desensitation had fallen off. He retreated her. We took her in a few days later and this time the milk casein clearance "stuck"...but her symptoms never improved again. This was a couple weeks ago, and we're back to square one.
The practitioner thinks I need to bring her back in. He said he'd like to test her for some other potential sensitivities that he doesn't normally test for. He thinks she probably has some other allergies and that if he can clear her of those, we should get back to a good place - like those glorious 5 days we had initially.
I know that most alternative therapies are based on a "holistic approach" and this is no magic bullet. I mean no offense to those who've had success with route, but I don't really buy it - maybe because I don't have the patience for it...maybe I'm just a skeptic.
But the NAET HAS been presented to me as a magic bullet. There is no ongoing therapy. You don't have to do it in combination with anything else. It's supposed to work, and once it does, it's supposed to last forever. Problem solved.
I know, sounds too good to be true, so it has to be. It's just that there's that nagging issue of those 5 days where she seemed completely healed...that's what I can't get past...
Anyway the treatments are $75 and they've added up. My husband is resistant to give it another shot. Reflux is an expensive condition. We've already spent a ton on medicines, formulas, sleeping/feeding products, and doctor's appointments. He thinks that going back to NAET is a waste of time and money because: "Look, it obviously doesn't work; it doesn't last." His opinion is that we should focus on figuring out the correct medication/dosing to manage K's reflux.
I get what he's saying, but I am also finding it hard to just walk away from the NAET. And we're not crazy about her being on medication, obviously. If the NAET worked, presumably she wouldn't have to be. The practitioner seems to think it's just a matter of uncovering all her allergies and treating them, and then that should be the end of our problems.
I'd love some feedback from you regarding your experience. I keep going back and forth over whether NAET is worth one more shot or if we should just cut our losses and move on to the next. In particular, I am seeking relief for her reflux. Uncovering allergies and clearing allergies means nothing to us, even if it's legit, if it isn't making a difference in her daily quality of life. For a while I thought, well, even though it didn't last with her reflux, at least it cleared up her sinus infections...but alas, even that eventually fell off.
Thank you for any insight you may have!
Aug 06, 2010
maxsmommy
NAET/Bioset
Hi there! Wow, sounds like you have been/are going through a ton! I have been right there with you with Max. I, as you, feel that trying anything that could possibly give our little ones some relief deserves a shot. I am going to give you my experiences with Max specifically, as my eldest, Maddy, had treatments but did not have reflux. As far as Bioset/NAET here are my thoughts: I think the only difference between the 2 is that with NAET you are supposed to avoid the allergen for 7 days or so. Do some research on that. With Bioset you do not have to stear clear of the allergen. So that could be one of the problems. Also, these treatments are meant to desensitize them of allegerns, not cure reflux. In turn, being free of allergies should definitely help with reflux especially if the allergies are food related. Max was also cleared for casein in 2 treatments. I was breastfeeding and had cut out dairy, but slowly intro'd it back in and he was fine. I orginally cut out dairy suspecting this allergy and once it was out of my system his rash went away, MUCH less spit up, sleeping better, eating a TON better, not fighting/ screaming through every bottle, etc. I also had him treated for gluten and bananas. He eats like a champ now, about everything you can imagine and we have had no allergic reactions. Our most miraculous results however came after I cut back on breastfeeding and had him on mostly formula. He was on Alimentum, and had cold symptoms plus ear infections for several weeks. After several trips to the dr. I went bk to my practioner w/ the formula & his Prevacid solutabs and sure enough he was allergic to both. Turns out he would do better on Similac Sensitive (even though he showed no lactose sesintivity) and Prevacid capsules. The solutabs have a ton of additives too. Within days of switching both of these his cold symptoms cleared. It was like a miracle!! So, what PPI is your daughter on? Formula? Is is possible she could be allergic to either of these? Your NAET practioner should be able to test her if you bring them in to him/her. It also might be a good idea to get her on a probiotic. Max was on one for a long time and that definitely helped w/ reflux and digestion. We have NEVER had to do more than 2 treatments with Max on anything. My daughter we had to do 3 treatments on one stubborn thing, can't remember what it was, as she had so many. Once they are cleared the should be cleared forever and it should never come back, says my practioner. Also, jsut FYI, $75 seems quite expensive for treatments, as I pay $39 for Bioset. I would definitely get her on appropriate reflux meds and a high enough dose. Max is still on his Prevacid in Buffer Babies at 13 mos. We are starting the weaning process, per the GI, so we'll see how that goes. We tried around 10 mos. to take him off and was disasterous. So even if your daughter is cleared for allergies, she'll still need to be on reflux meds. Our successes from Bioset involved clearing up his cold/rash symptoms, much LESS spit up/vomiting, NO fighting bottles and eventually him being able to eat whatever without any reactions. Just my thoughts! please let me know if you have any other questions, you can email me at meissang@aol.com, as well. Hang in there, it is like a roller coastser I know and it is so tough to find that "magic bullet" that will work, as others have said. But you will find it, keep trying! Keep me posted on her progress!
Aug 06, 2010
dcd
Big thank you!...and more questions.
Thank you so much for your feedback! It sounds like you have had a really positive experience with the BioSet. It's so great that it was able to help your kiddos!
I ultimately couldn't get settled with just walking away from the NAET, since we did have such incredible results the first time - even though they fell off. I felt like I needed to give it one more shot. The practitioner said he'd like to test her for some other allergies and I figured it wouldn't hurt to let him and see what came back. We took her in yesterday.
He retested for all the ones he's already cleared (milk, yolk, amino acids, and casein). They are all holding strong.
Then he tested for several other things, including all the digestive enzymes (he thought maybe she was having some problems with those, but no). The muscle test showed no sensitivity until he checked for whey. She showed weakness to whey.
Of course, casein and whey are the milk proteins in breastmilk and formula. It does make sense to me that she could have an allergy to whey as well as casein (maybe too much sense? I think that's why I have a hard time with the NAET...sometimes it seems TOO simple/perfect). That might explain why, when she was cleared for the casein she improved but ultimately regressed. It might also explain why, when I put her on a 100% whey formula (thinking it was a good idea to cut out casein altogether) things even got a little worse.
So he treated her for whey and we'll go back next week to make sure it's holding. He treated her along with some minerals this time - last time we also had to treat with minerals in order to get the casein desensitation to hold.
He did recommend I put her on soy formula through the weekend to "give her body a break." I know that with the NAET, you're technically supposed to avoid the allergen for 24 hours, but until now he's never had me do that. He says it's really not necessary. But, I think because he can sense my impatience and fear of being disappointed again, he wants to give it the best possible chance of holding from the get-go this time.
We'll see how she does on soy. We've tried pretty much all other formulas, but hadn't gotten around to soy yet. (And now it looks like maybe I should've just started with soy - of course!) She flat refused to drink the hypoallergenic stuff. I did email the practitioner last night to make sure he tested her for soy allergy (I seem to remember him doing so during her first treatment). I know that lots of babies with milk protein allergies also have soy allergies - so I want to make sure we know she's not sensitive to soy. That way, if we're not seeing results this time, we know it's because the NAET isn't working - not because an undiscovered soy allergy is complicating things.
I will definitely keep this post updated on her progress over the next few days.
A couple questions, if you have the time:
From what I can tell, the only difference between the BioSet and the NAET is that with NAET you're supposed to avoid the allergen for 24 hrs following a treatment. Is that your understanding too? Because if so, my practitioner is basically practicing BioSet, even though he calls it NAET, since he is not a stickler about the avoiding part. What you described (I found your article in the Reading Room) - the muscle tests of her through me, the allergen vials in the socks, the gentle acupressure, and the waiting 10-15 minutes afterward - is exactly our process.
Also, I've heard that allergies can sometimes "mimic reflux". Do you know anything about that?
If clearing these allergies helps her reflux at all, it's worth it to me. Especially if she'll stop fighting her bottles and sleeping better - those are the things I worry about most. But I'm also wondering if there's any chance that her reflux symptoms are CAUSED by the allergies (vs. the allergies are complicating factors to the reflux)? I wonder if it's possible the allergies could be the root problem instead of GERD being the root problem?
Maybe that's naive hope, but when she was initially cleared for the casein, seriously, it was like night & day...it wasn't just an improvement - her symptoms literally disappeared. I do believe she has a weak esophagal sphincter too, so I think no matter what she'll be spitting up for a while until that matures - I would just like for her to be able to be a "happy spitter" without the pain! (Don't we all wish that!)
Right now she's on Prevacid, 15 mg a day. My family doctor isn't really comfortable increasing the dosage. We have an appointment with a GI doc coming up, and I'm hoping he'll be more flexible when it comes to that part. Through this forum I found Marci-Kids, and learned a lot more about how important timing is when it comes to PPIs. Our doctor had told us to just give her the Prevacid in her bottle for her first meal of the day. When I read that it really needs to be administered on an empty stomach an hour before mealtime, we started doing that. (In advance of her bedtime bottle.) And the last few nights she's slept beautifully.
We also have a script for Zantac (2 ml 2x/day), and our doctor told us to either give the Prevacid or the Zantac, not both. But after reading the info on Marci-Kids we made our own tweaks...maybe we shouldn't have, but we're desperate. I know they can't be given too closely together, so we do Prevacid then 4 or 5 hours later, before we go to bed, give her the Zantac without waking her up. This seems to help with the breakthrough burning and get her through the night. Then I give her another dose of Zantac when she wakes up to help her get through the day. We're just trying to make it work till our GI appt. on the 23rd, and now we better understand timing/dosing issues, she is getting some relief - finally!
What is the difference between the Prevacid solutabs and the capsules? Do the capsules have to be swallowed? The Prevacid we get is a pinky pill that dissolves in a little bit of her milk. I'm wondering if we should be looking into a different form of the drug to increase efficacy or if the solutabs are the only option since she's so young? Either way, I think she really needs to be taking the Prevacid twice daily, so I hope the GI will recommend that route.
It sounds like your Max has been on Prevacid for a while now - I wish you the best of luck with the weaning process!! Have you had any issues with him developing tolerance to the drug? I know that H2 blockers are notorious for becoming uneffective once the body gets used to them, but I'm not sure about PPIs? That's a fear of mine. Related: do you think the Marci-Kids warning that pharmacy compounds break down in a week is legit? Should we be getting her Prevacid filled once a week vs. once a month?
Also, there seem to be so many opinions out there - do you worry about any long-term side effects of having your son on a PPI? What is the risk of the PPI permanently damaging the body's ability to produce enough stomach acid, so that the person eventually can not eat certain foods, etc.? Do PPIs negatively affect digestion over time? I can't make heads or tails of this...it seems like PPIs are supposedly really safe, but then I've received so many warnings from well-meaning outsiders to not put her on one.
Anyway, I just need to say thank you again for taking the time to respond. You're the first person I've met who's tried the BioSet/NAET, and it was great to hear your experience. Other moms are one of the best resources out there.
Aug 06, 2010
maxsmommy
Good, I'm glad you gave NAET another shot! It makes sense that she would be allergic to both milk proteins, although for Max it was just casein. And no wonder she is still having problems if whey was in her formula. It is great that all of her other clearings are holding and should give you some hope for whey, as well. It does sound like your pract. is doing Bioset, because the only difference is the avoidance thing. It is quite possible that her reflux is being caused by allergies. I mean if her main source of food is something her body cannot tolerate she is not going to digest it well, period. It will come back up which is probably painful, and cause her to not want to eat it. Babis are smart...they can sense what is causing them pain! Especially if she is cheerful and fine most of the other times of day. Ugh I remember it like it was yesterday with Max, feeding time used to be a battle and so stressful and you worry about them not getting enough especially when they are puking up half of it. I'm glad you have a GI appt. but beware that some GIs are hesitant to increase the dosage as well. Ours said that 15 mg was the maximum for him. So we took him off the solutabs, buy over the counter capsules and mix it in Buffer Babies ourselves. This makes a compound you keep in the fridge and it lasts us about a month. Email Marci Kids and David Stock or Jeffrey Phillips (pharmacist) and they will send you a trial kit with directions. THen if you like it you can order more. Dr. Phillips has been a godsend for a lot of us on this board. Can you have your practioner test her for the Solutabs? That sounds like what she is on...the pill you dissolve w/ a bit of water. Check the ingredients but the Solutabs have some form of milk I believe. This could be one of her problems too. At her age most of our kiddos are on 30mg per day, 15 mg morning and night. What is her weight? Dr. Phillips would be able to give you appropriate dosage or you can use the calculator. And YES it is imperative that it be given on an empty stomach then fed 1/2 hr later or so. My ped. didn't tell me this either, learned it from my own research and this board. If you do the capsules in Buffer Babies, however, it can be given at any time and not timed around meals. You just have to avoid fruit for an hour. Upping Max's dosage on capsules and clearing him for allergies literally stopped him from puking and 95% of the spitting. It is perfectly fine to be on it with the Zantag too. Zantag is more weight sensitive and they can become immune to it, but not to a PPI. At first I had major issues with him being so little and on a medication so long term, but I got over that with the help of the ladies on this board and research. One year or so is such a small amount of time when you look at their entire lifetime and anything I could do to bring him some relief I was going to do! There is some increased risk of bone fractures with being on a PPI and one other thing I wasn't too worried about. As for the pharmacy compunding that only applies if they are making a liquid for you, it can become unstable earlier than a month. If you have the tabs or capsules you are fine. And as for outsiders/criticizers, my thought is you have no right to judge if you have not lived with a baby with reflux, they have no idea what it is like! Thanks, keep your fingers crossed about the weaning! Side note, I have one of my close friends doing BioSet now, who was diagnosed with Celiacs and now she is eating carbs/wheat like a champ! :) HUGS! Hang in there and keep me posted!
Aug 11, 2010
dcd
MaxsMommy, I thought I would update you...

We took K back for her NAET to see if the whey desensitation stuck. It did. He also retested her for the allergies he'd already cleared: egg, yolk, amino acids, and milk casein. Those were all holding fine too. Then, just to be sure, her put them all together and tested her. At this point, the muscle test showed weakness.

So, individually they're holding, but combined they're not. He said it would be too difficult to determine every combination that could be causing the weakness, so he just retested her for all of them together. We'll see if they hold combined next week.

I feel 99% sure that it's the milk casein and whey TOGETHER that is causing the weakness. I am convinced she has a milk protein allergy and that these two allergens in combination are causing the problems.

We would like to put her on a specialty formula for a while, but she can't tolerate soy (extremely constipating) and refuses to drink the hypoallergenic stuff, so I'm not sure where to go from there.

I do feel like I need to get her cleared of the milk protein allergy, because I think it's possible that the allergy is actually causing her reflux instead of just complicating it. In that case, if we could fix the allergy, we wouldn't need to treat the reflux with meds - or at least that is my hope. I'm just not sure if it's possible to "clear" someone of a milk protein allergy.

Aug 11, 2010
dcd
Also, I did order the Buffer Babies and am anxiously awaiting its arrival! I will discuss other options with my GI when we meet with him in a couple weeks. Maybe he can explain more about the Zegerid. If he thinks that's a good option, it definitely sounds like it would be easier than continually making batches of buffer. Which I of course don't mind doing if it's going to help! The only thing is she's been on Prevacid and Zegerid is Prilosec? Admittedly, we haven't had great results with the Prevacid...but that could be due to incorrect dosing/timing issues. Also, I guess, it could be due to the fact that she possibly doesn't even have reflux but rather an allergy.

I'm so impatient. I just want to find the answer to help my baby feel better...now! I know it's all trial and error and all you can do is move forward each day, but sometimes it's so hard.

Aug 18, 2010
maxsmommy
Hang in there....I know it is hard. It took months for us to figure out how to help Max and I thought I was going to lose my mind! But you WILL get there....you are diligent and will not stop until you do. Yes, I think the whey and casein together are probably the culprits, too. Get those cleared, period. Then she could be on a milk formula no problem. Max was cleared for casein and then tolerated Similac Sensitive. I think your only non milk based option is a soy or a hypoallergenic (which does taste terrible). Anyone else know of any other option?? I think you'll really like the Buffer Babies and it will at least reassure you that the previcid is getting into her system properly, thus doing what it is supposed to do. It is not a pain at all to make either and it lasts one month if they are on 30 mg per day. The biggest pain is cutting up the capsules! I recruit my husband to do that! :)
Aug 19, 2010
dcd
Went back for another NAET yesterday. Everything's holding individually and various combinations are holding too, all except for the casein and whey together...big surprise! The doctor said this has been frustrating for him too, and probably his toughest case ever. He's not sure why the treatments aren't holding. He hasn't been charging us to retreat - his policy is that you pay to get it cleared. Once it's cleared, if it falls off the retreatments are free. So that's nice at least. He retreated for just the whey and casein together yesterday. It was holding immediately after, but that's always the case. He wanted me to stimulate her pressure points last night and today and is hoping that will help. We'll see. I definitely believe the whey/casein are a major problem but at this point I'm not sure we can get them cleared. Maybe she's just severely allergic and the NAET doesn't work in severe cases? She's been on hypo formula exclusively since Sunday. Still hates it, but at least she's eating. It does take the daycare girls an hour to get a whole bottle in her b/c she needs to take frequent breaks, but it could be much worse. I dont' know that I've noticed much improvement. I know we need to wait 2 weeks to get the milk out of her system, but I thought maybe her rash would've cleared up by now? She seems to be spitting up less but still isn't sleeping great at night.
Check with your
doctor first!