Maybe we should move to France.

Since the last update, I have learned a lot.  Two Fridays ago, we went to see a dermatologist.  We haven't been to one yet since I've never had a good experience with one, and all the advice I have gathered through this experience didn't give me hope that it would be any different with Sam.   It did come up a couple different times, so I finally went with Sam.

It was not a good experience. There was one highlight though.  A a sweet lady that came up to me while I was filling out paperwork at the desk.  She said she saw me getting out of the car with the kids (all three where with me since babysitters are tricky these days, and family including Bradd was out of town).  She gave me a hug and said I was a good mother.  I am not one to cry in front of people, but I did.  It was exactly what I needed to hear.  Side note... never underestimate the Spirit's tug on your heart to offer a kind word to a stranger!

Anyway, the dermatologists' protocol for Sam is on the table still, but I was not a fan of her bedside manner. She was hyperactive. Shook her head with pursed lips to answer every question I asked, before I got halfway through asking it. In as kind words as I think she could muster, told me that we would have gotten as far with Sam if I was a bad mom and did nothing... I have done much more than nothing. This has been a near full time job. Everything we had done so far was wrong, over tested, underused and my list of doctors I have used to this point (except for one) weren't on her radar, because she only knows the board-certified best ones.  Sam is a boring case of eczema and if I would just turn off my brain, not question her use of very strong topical steroids, daily antibiotics, allergy meds, nightly sleeping meds and absolutely nothing else... no probiotics, no wipes, nothing at all besides her prescription, I would be in her office in a month crying and thanking her for fixing Sam.

I will be honest. I left confused. Insulted. Upset. And slightly hopeful. I refuse to let my pride get in the way of my boy getting better, but I have also learned a lot in this journey.  And I am not going to "turn off my brain" to trust a doctor that did nothing to earn my trust while insulting me, my ability to understand the basics of how all this works, and all the doctors I have grown to love and respect.

Her prescription and a few things she said go very much against everything I have learned to this point.  She wanted Sam to immediately go off his Zyvox (a very strong antibiotic that targets his particular strain of staph). He was swabbed in the hospital and the culture that grew was only responsive to the Zyvox, and not at all responsive to the antibiotic she wanted to put him on.  She said it was a classic case of the apparently incompetent doctors whom I loved that treated Sam during his stay, "treating paper not the patient".   I still didn't understand, but that's all she would give me.  To me a culture test and what the bacteria respond to seems to be a pretty good method of prescribing, no matter how much I hate giving him a strong antibiotic.  She also had some strange things to say about probiotics and wanted Sam off them immediately without allowing me to explain my reasoning (based on several of Sam's trusted doctors' recommendations).

So, I took her prescription to my favorite integrated pediatrician and we came up with a plan, using milder steroids, olive oil and teatree (something we have had mild success with), but a similar schedule of baths and applications and without antibiotics once the Zyvox round was complete.

I took two long, late nights after that appointment to find every blog or forum I could with parents who had some sort of success.  There are many parents like me out there, few with much success.  There doesn't seem to be a magic cure, or any at all.  Some find relief, usually with steroids.  Some travel far for week long hospital visits for various protocols.  Some use this doctor in South Africa.  Some swear that topical steroids provide immediate relief, but in the long run will cause withdrawal symptoms far greater than the original eczema.  Some say steroids are definitely the way to go and the idiots that believe in topical steroid withdrawal are crazy.  Some believe in a water source in France that will heal your skin.  (Trying to talk Bradd into at least giving it a try.) And everyone has some sort of medical research to back up their claims.

With a few exceptions of folks with only a few allergies, usually wheat and/or dairy, NO ONE that I could find was cured.  No one knows why some people suffer with eczema. There was a recent study proving eczema to be an autoimmune disease in and of itself.  There are new medications being worked on that target the specific immune response of the skin.  From my limited understanding, our skin is made to fight bacteria and viruses and protect from all sorts of irritants.  When your skin is open, these things have an easy pathway in.  Steroids, and the new medicines being studied, target the immune response of the skin and turn it off so that it doesn't cause the unnecessary inflammation aka eczema.  But the problem is he needs his skin's immune system!  We have proof of serious bacterial and viral infections already.  So, the very thing his skin needs to fight the bacteria and viruses is the same thing that supposedly is causing his eczema.   Issues like sensitivities and allergies to food and environment send the whole body's immune system into high gear.  Which came first, the chicken or the egg... the eczema or the irritant, the steroid or the bacteria and virus?

Although the well meaning dermatologist may be capable of getting his skin back intact and looking good, she is addressing only one part of this crazy cycle.  And this is why I LOVE integrated medicine and doctors that look at the WHOLE body.  His lack of thyroid, his food allergies, his sensitivities, his environment, his nutrition, his whole little self.  There needs to be a balanced and well thought out plan.

Which leads me to those who have regained their health with nutrition.  Apparently autoimmune disorders tend to build on each other.  When your body starts attacking itself, as Sam's apparently likes to do. (Side note, Sam has TPO antibodies running through his body. These are proteins that attack his thyroid. Which he supposedly doesn't have, and is concerningly only mildly "interesting" to his endocrinologist.) His body, seemingly from day one, attacks itself.  Unless his body rights itself, we (eventually he with whatever support he needs from us) will spend his life chasing after autoimmune issues.  These are things that usually show up later in life, like Rheumatoid arthritis, MS, Lupus, type 1 diabetes, and so on.

The books on my bedside are The Auto Immune Solution, GAPS diet, and Eat to Live.  It is way more information that this Moma of 3 can pull together by skimming and flipping around, but it is giving me hope that we can work on healing Sam's gut, we can rebalance his body and help it learn to stop attacking itself.

Has anyone out there read these or similar books? Or have information or experience on "healing the gut"? Or helping the immune system and healing autoimmune disorders by way of nutrition?  My email is lisacorinne (at sign) gmail.  If you are some sort of doctor or medical professional and have managed to find your way here thanks to my wonderful family and friends sharing this journey, I am not looking for free help.  We will travel, we will pay if you have something to offer that would consider Sam's whole situation and help us make a great plan to get him on a better road to health.

And for those of you that are praying for Sam.  Please keep praying.  This is hard.  And your prayers and support are greatly appreciated.  Much Love, Corinne

Another adventure.

So here's the story of our adventure yesterday.

A week after hospitalization Sam's skin was the best it's been in a very long time. It was fun putting his lotion on his baby soft skin. He normally feels like an alligator.

A little over a week ago, he started little rashes on hips and lower belly under his diaper. I had switched diaper brands and thought it was just irritated. So we switched back, but nothing changed. That is normal for him though. He will react to something. Get red skin. And it will take weeks to go away.

The condition of his face waxed and waned, and his neck and by his collar bone started getting red and dry. Over the weekend (of course not during the week when docs are open) the rash on his hips were developing small super painful boil looking bumps. Lots of them. And the dryness on his neck was changing and looking more like the impetigo he had. His temp was low but close to 100 so I knew his body was fighting. I didn't want to put him back on antibiotics because of all the havoc they wreak on the rest of his body. I called the doc and she agreed it was time to be seen - and the sooner the better. We were going to head to the urgent care since it was Sunday. But when his doc called ahead and gave them Sam's story, they thought the ER would be a more appropriate place for him. So we went.

Here's what we learned. The super painful looking boils and bumps are most likely fungal. Which is much better than staph boils. Basically a bad diaper rash caused by yeast... due to the crazy strong antibiotics. He's never, until now, had a diaper rash. It's been the clearest part of his skin. And with three kids and lots of friends with babies, I have never seen something like this "diaper rash." So he is now on an oral and a topical anti-fungal. Not good or fun, but much less scary than staph. And because of his neck (and face) which looks bad but not as bad or as painful as the bumps on his hips, we are back in the strong antibiotics. It does look like its heading in the direction of the impetigo, so we are trying to stop it in its tracks.  It felt a little crazy to go to ER and leave with diaper rash as your diagnosis, but with his history of Superbugs and viruses, there wasn't really another choice. And it was unfortunately time to get back on antibiotics to avoid what happened before. 

It feels like a crazy cycle we've gotten ourselves in. Just keep praying for his healing. And that these medicines work to heal his infections so we can get back to trying to heal his underlying issues of eczema, allergies and his confused immune system. 

I'll spare you the diaper pics, but if anyone is dealing with something like this, I am happy to share and compare notes. Just email me. Lisacorinne at gmail. 

Blood work for immune system.

Sam's blood work for part of his immune function came back normal. It is great news and we are thankful that this part of his immune system is functioning. For any medical people that may come across this blog, the test performed was a "Lymphocyte Ag and Mitogen Prolif PN".  Though we are excited, it is also a little frustrating because we were hoping for an answer of some sort as to why this sweet boy struggles so much.  But still very thankful we have ruled out some of the bigger and more scary reasons. We will keep searching until we find him more permanent relief or he is healed.

Sam is currently feeling well and his skin is healing. We have a plan to hopefully keep his skin moving in the right direction... Another week of steroids topically once per day and then down to three times per week for a bit longer.

When we get off steroids we will take a break from antihistamines for a while if we can and do 48 hour skin test for 30 common chemical allergens we haven't tested yet.

Meanwhile we will keep up with his list of foods to avoid and very unfortunately stay away from dogs (basically his only and pretty high environmental allergen).

Thanks for all the love and support! So many of you have passed Sam's story around and we have had lots of great suggestions and encouragement.