Please help! Question about dairy elimination and tonsils

[MsZelda]

My 3yo daughter has had ENORMOUS tonsils (considered stage 4 - they touch most of the time, one of them crosses the midline) and has since she was little. Her sleep apnea got really terrible this summer, to the point where we couldn't sleep all night in a tent because I kept thinking she was dying /choking / cutting down trees. At that point we started a nasal steroid on the advice of the ENT, something I wasn't thrilled with but knew we needed some immediate help. Within a few weeks, her breathing improved somewhat, but not completely, and her tonsils still look mostly the same so I am guessing that the steroid shrunk the adenoids. After doing some research, and based on a sensitivity in infancy (which manifested as a rash), we eliminated dairy starting Nov.1. It has been hard to see if it made much of a difference, since we are also using the steroid. Overall, her breathing plateaued at "improved but not great" but has recently regressed again. We have stopped the nasal steroid recently and want to see if she will continue to need it. 

My question is about the dairy elimination. After 8 weeks, we have seen no noticeable improvement to her tonsils. We have been fairly diligent about removing all dairy from her diet (including milk protein,casein) ; however, there have been a half-dozen episodes where I found out afterwards that there were trace amounts of dairy protein in something (a rice cheese with dairy protein (?), a cracker with milk solids, etc.). Could this be enough to have derailed any gains made by the dairy elimination or not? Keep in mind that before November, DD drank cow's milk regularly and ate yogurt, cheese, etc. Also, generally, how long should we continue with the elimination if we are not seeing results? My concerns are twofold: 1) sleep apnea is believed to cause developmental problems and I'm not willing to take the "wait and see" approach indefinitely and 2) being dairy-free has been a real struggle with her preschool and I don't want to continue with it if there is no benefit.

I realize these are pretty specific questions, and I should probably get in with a naturopath, but money is tight at the moment and any advice would be greatly appreciated. Thank you so much for reading this.

[34me]

I'm not sure how long you should wait. Your story sounds very similar to ours (his were also 4+) except I refused the nasel steroid. My ds has idiopathic bloody noses and I wasn't willing to risk them getting worse. We eliminated dairy at about 2 and did adnoids only at 3. It didn't get any better until he was 8 and his tonsils were removed. I slept with him that night. I woke up every hour making sure he was alive. He had never slept so easily/ silent. At 13 he is still dairy free due to GI issues.

Edited by 34me - 12/27/11 at 8:21pm

[SweetSilver]

Dairy issues at my house, so I can chime in on that, not the tonsils.

While it's possible that trace amounts can derail your diet, if she was eating a lot of dairy and then went to none (excepting what you mentioned) with no noticeable results?  I'd move on.  You would be seeing *something* if it was that serious.  It doesn't mean that dairy is no issue at all, just that I would assume it isn't the Big One.  Would I reintroduce it?  Sure, and see what happens when you put it back in before you eliminate the next thing.  Or keep it out and move onto the next food.  But I personally would move on regardless, one way or another.

[MsZelda]

Thanks so much for taking the time to respond. I am living with this dread that we are going to have to go with the surgery even after all these other attempts. I would love to hear from parents who have gone this route. 

[etsdtm99]

my DD also had 4+ tonsils, and sleep apnea, snoring etc.  by the time we saw the ENT (she was 2.75 yrs old, she is now 5.75, ) they wanted to schedule surgery for 2 weeks after that (tonsils and adenoids) .. we thought about doing dairy elimination and chiropractic treatment, but decided to do the surgery.. we have since eliminated dairy - and i always suspected it was an issue, she was a very fussy baby but i just can't see a dramatic difference in her without it (like i can with my other 2 children and myself) we did the surgery because she was just miserable, she couldn't breath, she couldn't sleep, the apnea was horrible, we would often have to shake her to get her breathing again and i was so scared she'd just get tired and stop..   she also suffered from night terrors from 10+mo,  .. there was improvement instantly with the surgery, it was like night and day, and she was literally a different child after that, went from 50percentile height/weight to 90th% in less than a year (and has stayed at the top of the charts) , she started sleeping all night in 2 weeks..   doing the surgery was so so scary and but it helped her so much.. PM me if you want to talk about it more.. 

[MsZelda]

thank you so much for your response. I will definitely contact you if we end up going that route, especially to chat about recovery. DD isn't showing as much of a response to the apnea - she is a big girl, she sleeps pretty well (by that, I mean, she wakes only 1/night to go pee) and she is about as cantankerous as any 3yo as far as I can tell. My concern is for the effects I cannot see - it's dealing with the unknown.

Edited by MsZelda - 1/2/12 at 3:31am

[Marli00]

Removal of tonsils will help A LOT especially if she has problems in that area of her throat/mouth. Sometimes it can be a reaction to other things that are in dairy products they have a bunch of stuff in the food now a days. Getting an allergy test done would help too. Insurance usually helps pay for it so it's not expensive at all if they do. It will eliminate the worry of allergies at least and you can then know where to go from there. She will benefit from the allergy test it's good to know about all of that.

[mytwomonkies]

I think before I jumped to surgery I would investigate other food allergies, maybe start with some allergy testing? I'm 29 and my parent's had my tonsils removed when I was around 10 years old. I think the surgery affected my thyroid in some way because I went from being a tiny little thing to being overweight within a month of the surgery...I literally ballooned up within no time. I'm sure it helped my breathing and stuff but I still struggled with other issues. When I started having kids I realized they struggled with food intolerances. When my youngest was 2 months old I had to go on an elimination diet with her and through that whole process I've figured out my own food intolerances and I feel like a new person. I don't blame my parents, I think they did the best they could with the knowledge they had. But, I do wish they could have figured out my food issues when I was younger instead of me having to figure it all out as an adult.

Even if you do decide to go ahead with the surgery now I would not leave it at that, I would still investigate food allergies/intolerances with her. The tonsils are part of the lymphatic system which works with the immune system so something that is affecting the immune system has to be overwhelming the tonsils. Hope this helps!

[MsZelda]

thank you for all your insights.

We have actually done a lot of digging into allergies and sensitivities in the last 3 years. I didn't provide the full context in the OP to spare the lengthy story, but I think it might be helpful to explain why we chose dairy. My daughter has had other sensitivities since birth, the most troublesome being a facial rash (around the mouth mostly) from around 18 months to a year. At that time we did a complete elimination diet (gluten, sugar, soy, corn, dairy, eggs, hmmmm I can't remember what else) and then slowly reintroduced things one by one. We were unable to clear up the rash over a period of about 6 months. After that, I got a tip from my therapist about an energy worker who does muscle testing for various sensitivities. WE brought in trays and trays of various foods and materials (i.e. wool, ash, hair) and she muscle tested each element individually. The only sensitivities she identified were citrus (mild) and dairy (also mild). At that time, she recommended going off dairy, which we did, and the rash slowly cleared up. Her feeling was that it was not an allergy, just a sensitivity, and one that she would likely outgrow once we broke the cycle, gave her immune system a break, and fed her guts good flora (probiotics). After the rash was gone for a few months, we then slowly reintroduced dairy over the next year and found no (discernible) symptoms. My DH is somewhat skeptical about this energy worker because he is much more from a  traditional medical background; however, the elimination did work and I kept it in my mind as something that could be a problem down the road.

Last summer, our appointment with the allergist finally came up (I had gotten a referral for the rash but it took over a year to get in ...) and while there was no rash, we went anyway (because of the tonsils) and did the prick test. This test showed no sensitivities at all. 

Still, we did the full dairy elimination as a test because of what had happened before and were disappointed to find no effects on her enlarged tonsils.

Are there other kinds of allergy tests I should consider?

[34me]

Traditional skin prick test often don't show results until kiddos are older. My oldest son always had environmental allergy symptoms and had his first asthma attack at 2. We had him tested at 5 and everything was negative. Had him tested at 7 and he was positive to everything but mold. We did the testing with ds2 when he was 3; before we did the adnoids. He also was negative to everything. At 5 he wass positive to everything, including mold.

[MsZelda]

interesting - I guess we should get on the referral list again, since it took a year last time!

[kjbrown92]

My son had very enlarged tonsils and was a huge snorer (no sleep apnea that I know of). Removal of dairy did not help him. We had him take the ALCAT test (tests for inflammatory response to food, not the same as IgG or allergy testing). Removed the foods, and his snoring went completely away. He's not even a mouth breather anymore. And his adenoids went back down to normal. I didn't even have a baby monitor for him because I could hear his snoring from his 2nd floor bedroom down to the living room - that's how loud a snorer he was. So it's possible that it's a food allergy/intolerance other than dairy.

[blessedwithboys]

My BTDT...

Ds1 (now 17yo) had huge tonsils and obstructive apnea.  Lack of sleep at night made him super hyper during the day.  He had sensory (seeking) issues.  Was told he was ADHD and needed Ritalin.  Was also told surgery to remove tonsils and adenoids was the only option.

Because I couldn't meet our anesthesiologist before the day of surgery, I refused to go through with it.  I had some very specific questions and wanted time to research the answers.  Five minutes and a snap decision didn't cut it for me.

So I decided to try natural things.  A LC friend of mine told me dairy could cause large tonsils and I should try raw milk products, but at that time they weren't available around here.  So off dairy we went.  I learned that hot dogs and cold cuts contained milk.  I did a COMPLETE elimination, and then every other weekend his father would fail to read a package and inevitably, ds would get snuffly again, his father would tell me I was whacked, and I would go to his house and hunt down the hidden dairy!  haha

Skipping ahead, we managed to 100% manage his apnea without surgery.  He has now mostly outgrown the sensitivity.  His tonsils are still larger than average, but he has sleep studies done 1-2x/yr (found out last year that he likely has narcolepsy) and the obstructive apnea is totally gone.

If you want more info on my rationale for not doing surgery, feel free to post and ask.  FTR, I am not completely anti-surgery.  Two years ago ds had a birth mark removed under general bc I felt the risk of leaving it outweighed the risk of removing it.  So, I'm pretty balanced, but in the case of his tonsils, I knew they needed to stay put.  HTH!  :)

[sunnygir1]

I know this thread is old, but I wanted to share our story.

About a year ago my 1.5 year old son (or maybe it was in the fall and he was 2?) had large tonsils, snoring, sleep apnea, frequent stuffy nose, enlarged lymph nodes, etc.  We saw our family doctor who referred us to an ENT and a sleep specialist.  While waiting for appointments for days, weeks, and months, I did research.

I couldn't really find anything indicating that the inflammation in tonsils could be significantly reduced through natural means.  I was angry and frustrated that everywhere I turned I could only find stories and recommendations of surgery.

I did everything I could think of and everything I could find that might help.

--I cleaned our room more frequently, got an air filter for our room, got an allergy cover for his matress (where he slept about half the time) washed his and our sheets more frequently.

--I took him off a bunch of foods and stopped eating them myself because he was breast fed.  We were already gluten free, but I got more strict about trace sources.  I cut out cow dairy, eggs, chocolate, tomatoes, mango, cashews, chard, white beans, kidney beans (I think that's all).

--I put him on Sinupret, an herbal syrup recommended by a friend.  I made ginger, lemon, honey tonic that I gave him daily.  I gave him frequent basil baths with a cup of basil tea.  I gave him immune supporters -- echinacea, elderberry, vitamin C, vitamin D.  I gave him probiotics and fish oil.

It was quite a regimen, but by the time our appointment with the sleep specialist rolled around (maybe 2-3 months?) he had gone a week without an apnea episode.  The doctor told me to only schedule a sleep study with him if the apnea returned...it hasn't.

I just took ds in for a check up, and our family doctor says he would now call his tonsils "moderate" instead of "really big".  He also said that in most kids their tonsils are "gone" by the time they are teenagers.  That was such a relief to me because the ENT basically told me I could wait a bit to have the surgery, but by the time he was in school he would need to have them out.  So I was going along thinking that at best I could put it off for a while.  Now I'm hopeful that we can avoid surgery altogether.

I hope our story can help others find answers.