Gluten Update

Life's been busy with moving and school, but we are doing good. So thankful for all the good days.

My 5 year old's test results came back. She does have a gluten sensitivity (she tested positive for the IgA - the response to an allergen, for gluten) and she has 2 alleles for the gene they've found related to gluten sensitivity. That means that my husband and I both have at least one gluten sensitivity allele, and chances are my 9 year old has at least one. My now 9 year old did test allergic to wheat when she was 2, so it makes sense. Still trying to figure out what all the results mean. She also tested positive for ttG, which is what doctors look for first for celiac. She did not have the celiac gene though. I'm planning to call the testing company this week with all my questions and will update you then.

Also, my husband's uncle died of colon cancer a while back, and another one now is very ill with colon cancer. I also have a grandfather and his two brother's that died of colon cancer. Although I don't know for sure, I'm really wondering if gluten is the common thread for these issues. It messes up your digestive tract, so maybe it was an open door for cancer. Don't know, just thinking and doing some research.

All of this to say, we are now a gluten free family. Both girls are also milk free for now, and our 5 year old is also egg free. I am so amazed at the difference it has made in her skin. Her eczema had gotten so bad really quickly, and her skin is now supple and she only has a few little spots of itchiness! Whoo Hoo!

We just started going back to our alternative doc. We are finishing up allergy treatments hoping that without the gluten causing their bodies to be super-sensitive, they will respond well and other allergies won't be as bad.

I am finding I have to make things from scratch. Even gluten free things from the store seem to itch their throats or cause some minor reaction. I'm not sure if it's something in the processing, or an allergy we don't know of yet.

Thanks for following our story. For all of you in the thick of it right now, don't give up! Keep researching, asking questions, and praying for direction. There are so many ways to go, we need the Lord to point us in the right direction for each of our families!

Study: Baths with Bleach Help Kids\' Eczema

We are going to start these weekly. Since we stopped swim team at the end of the summer, we've seen a re-emergent of a few spots. Nothing major, small little things, but we want to prevent more. We'll see how it goes. I found this article interesting...

Study: Baths with Bleach Help Kids\' Eczema

Update...Gluten Free, Dairy Free, Egg Free

We are so grateful that our MRSA infections have been few and far between. We still have a daily regimen we follow, but it's not ruling our days! We are still hopeful that one day, it will be a distant memory!

Lately we've been dealing more with getting to the bottom on our 5 year old's food allergies. We've seen improvement in her, but there is still many periods of constant stomach pain and eczema outbreaks. We followed doctors orders and put her on a dairy / casein free diet for 30 days. The first week or so was amazing, her skin was getting better and her stomach wasn't hurting. But later in week 2, these symptoms returned. At the end of the month, it occurred to me that she didn't have any bread (gluten) for that first week or so (simply because I didn't know what bread products didn't contain a milk product), and maybe that was a factor, not just the dairy.

I asked a couple friends that had recently discovered their children's gluten intolerance how they tested them. There are so many tests that aren't accurate and I didn't want to waste more money. She's already had a saliva test for milk and gluten that came back normal, and a stool test that was normal for other issues. Both of these friends used the same lab for the testing and finally got results, and since changing their diets, they've seen dramatic results in their children.

We decided to go ahead with this testing. If anyone is interested, you can find more information at www.enterolab.com. We also decided not to wait for the results to put her on a gluten free, milk free, egg free diet. Her skin was horrible on her feet, with cracks that were affecting her walking. It's been 6 days now and her skin is clearing up and she hasn't complained about her tummy once! I'll keep you posted once we have the test results back. I'm hoping she won't have to stay off all three, but if she has too, it's worth it so she is healthy!

Update and questions answered...

The girls are still doing great. My 9 year old realized today that we haven't had MRSA all year (2009). She found that encouraging and neat to say "all year". I am truly grateful. We have really enjoyed these months...I can't believe I said months! We still follow the same protocol. I have cut back a little on some supplements to see how they do, and have still had good results. I am amazed!

I had a couple questions from comments lately, so I thought I'd answer them. One was about StaphAseptic. I did purchase this once and used it. It is very expensive, I thought, and one of the "inactive ingredients" is Tea Tree Oil. I've known tea tree oil does wonders with MRSA, but I think they aren't able to claim that it helps MRSA on the label. Of course it takes lots of money and trials to be able to label these claims. After seeing that, I felt like that was the true "effective ingredient". After that one purchase, I just decided to use tea tree oil instead of paying more for this small tube of antiseptic that goes quickly. I don't really remember how well it worked. I must not have been too impressed.

Another question was about whether we have tried Allimed. I have heard about it, but have not used it, or researched it, so no opinion so far.

My favorites for topical treatment still are Manuka honey, colloidal silver, and tea tree oil. If we see any suspicious spots, we use this combination. We even use the Manuka honey ointment on any cuts and abrasions to prevent infection.

Oh, this is a great product!

ACF from Buried Treasure (stands for Advanced Cold and Flu) is a great product. Whenever the girls start not feeling well or have the sniffles, I give this to them and it really helps fight it off. www.luckyvitamin.com has it at a good price.

No news is good news!

Just a quick update...we are doing well. We've been busy with the holiday's, but overall really good. Dr. Hager has the girls on some immune boosting supplements and I can tell a big improvement in their skin and infections! We also add a couple supplements we have found helpful. They haven't even been sick since the fall (except a couple "not quite right" days, but didn't develop into anything). Truly a miracle! Fall is our typical sick season. Here's what they are taking daily that seems to be keeping them healthy. A lot of this, they have been taking for a while, but a few are new. I hope to be able to back off slowly and see how they do.

Tumeric - 2 pills, 2x per day (helps with infection / inflammation)
Minitran - 1 pill, 1x per day (minerals to help with eczema)
Thymex - 2 pills, 2x per day (super immune boosting - stimulates thymus)
Primrose Oil - 1 pill, 1x per day (helps with eczema)
Probiotics - 1 pill, 1x per day (helps with healthy bacteria)
Gut Flora - 1 pill, 1x per day (helps keep healthy bacteria in gut)

I think that's it. More later...thanks for reading.

UPDATE::::2/6/09 - I just realized I left one thing off that list above.

Milk Thistle - 1 pill, 2x per day
We also cut out the Gut Flora to see how they do now that they have cleared candida
We cut down Thymex to 1 pill, 2x per day for the last month, still good results

What should you do??

I had a comment from a family in Florida that has just started their journey with MRSA with their 4yo. I pray it will be short for them! I've been thinking about doing a post re-capping what has worked best for us and what we use on a normal basis, so this comment has led me to do just that.

So..what would I do if I knew then what we know now? (just my opinion, from experience, not medical expertise!)

1) Wash hands frequently with regular soap - we use alcohol to spray down hard surfaces in the bathroom after showers.

2) Wash all towels and clothes after the first use (even dress up clothes) - it's a lot of laundry but MRSA multiplies very quickly. No sharing towels (we've even started using paper towels after washing our hands). Wash in hot water and dry on high heat for a long cycle. We dry on high for 90 minutes. I found in some research online that it takes about 30 minutes on high heat to kill the MRSA, so I make sure it's drying for about 30 minutes after the clothes are completely dry. I change sheets once a week. I have at times changed them everyday, but didn't see any difference, so went back to once a week for sanity's sake!

4) Keep wounds covered with band-aids or bandages that are sealed on all 4 sides so no pus can escape. We have found Band-Aid brand Ultra Care the best for smaller ones and use gauze and tape for larger ones.

3) We avoid antibiotics if at all possible. Sometimes just draining it is enough. We learned this the hard way. There were many times where the girls were off antibiotics for just a couple days before new spots appeared. Both girls now have candida (too much yeast overgrowth from a lack of good bacteria to keep it under control) from all the antibiotics and that can cause lot of other issues. There are times where antibiotics are necessary, but we are grateful they haven't been on them since February (May for me). We have had plenty of spots and a hand full of times that I thought one of us would end up on antibiotics, but we've been able to get them to go away without antibiotics. If you really need antibiotics, use Clindamyacin if your MRSA responds to it. The microbiologist I spoke to about MRSA said it's one of the very few antibiotics that enter human cells to get the infection there. I also take Milk Thistle with the antibiotics that helps it enter the cell better (from what my alternative doc tells me). If you can't use Clindamyacin (it is more expensive), take Bactrim or Septra with the milk thistle. It will help it get into the cell and work there.

4) Turmeric really helps with the inflammation and seems to help the pus dry up...one of the best results we've seen. Both my girls can swallow pills now (we taught our 4 yo out of necessity recently - have them look down when swallowing instead of up. The pills float so looking down makes them go to the back of the throat for when you swallow). If they have any spots I'll give them up to 6 pills twice a day. You may be able to find this as a liquid or add it to juice or chocolate milk or something if you can't swallow pills.

5) Hibiclens. As much as I don't like the fact that this is a type of antibacterial, we have found it keeps us from having to use oral antibiotics. For months last year we would do a whole body Hibiclens, but now we just do spots. We want to leave as much good bacteria on the skin as possible and it works just as well as a whole body Hibiclens rub down. We order this from www.drugstore.com and it comes with a pump top that makes it foamy and is much easier to apply. I would recommend showers instead of baths so you are not sitting in the bacteria, it can be washed off and down the drain in the shower.

6) Probiotics - This is basically good bacteria that lives in your gut. Especially important if you are taking antibiotics to help keep up the good bacteria since antibiotics kill both good and bad bacteria. Don't take it at the same time as your antibiotics though because the antibiotics will just kill it. We usually take them right before lunch time. We rotate between Natren and Udo brand and both girls take these everyday.

6) Manuka Honey Ointment. We have been using this on any small spots and it really seems to help. The ointment is only 40% manuka honey, so it's not as sticky as the 100% stuff. If you have a large open wound, go with the 100% manuka honey, but for small spots the 40% seems to work well. We use the ointment found at www.manukahoneyusa.com

7) Tea Tree Oil and Colloidal Silver - We use the Manuka honey more often but rotate and use these in between. Tea tree oil can burn, so the manuka honey is easier to use on the kids. Colloidal silver seems to really help, but it seems to need an open wound to get in there and do it's job.

I hope that's not too overwhelming and that I haven't left anything out. I think the best thing we've found so far is the combination of turmeric orally and manuka honey on the wound in addition to good hygiene.

I have learned over the course of this struggle that I can't fix it. It's hard not to be able to "fix" what's hurting your children. It took me at least a year to realize this, but I now know. I am committed to keep looking for new information and pray for direction from the Lord for healing and direction on what to do next. I have learned a lot and my girls have grown through this. I hope and pray that one day in the future, I will be able to share our victory with those suffering along with us!