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.

Sam.

Sam has been through quite a lot over the past few months.  Here it is all in one place.  It's long and not well proofed.  For anyone that has been through something similar or knows someone who has, feel free to share Sam's story, or tell me your story. We can't be the only ones going through this!

Quick overview.

Born in April 2013 with congenital hypothyroidism.  TSH at birth was a super high 341. 

Put on daily Synthroid.  Blood checked every several months and dosing monitored.

As an infant, had severe baby acne that cleared after several weeks.

At 4 months old, small patches of eczema began appearing behind knees and then on left cheek.

Tried all sorts of natural creams and oils hoping not to use steroids. 

Continued to gradually spread.  

Started solid foods. Avocados gave him hives.  Eggs gave him hives. Playing with a ball of dough at Brixx Pizza... gave him hives.  

At 7 months an ultrasound was performed on his thyroid. No tissue was seen. Congenital hypothyroidism was defined more specifically as thyroid agenesis.  

We started looking into food allergies. I was nursing and eliminated the top allergenic foods from my diet to no avail. 

Went to see the wonderful Dr. Kilbane. (HIGHLY recommended)

Did the Elisa Igg food test.  Eliminated all the problematic foods (a Lot!). Skin remained the same, but his 5-8 times a day pooping habit normalized and saved us a few dollars on diapers.

At 20 months went to an Allergist and was skin tested.  Several things came up.  Peanuts, eggs, etc. The ones we expected.  Did some blood allergy testing also.

Continued avoiding these things and tried to find alternatives to give him a more varied diet. Sunflower seeds seemed like a good idea.  Lip swelled, throat started to get scratchy sounding.  Went to Urgent Care.  Body became covered in hives and 2 rounds of Epipens were administered before we were sent to Levine by ambulance and things started to settle down.
Skin-wise, I lean toward the natural.  Pure sheabutter gave him hives. Coconut oil, hives.  Allergic to avocado, almond... all the good stuff supposedly good for skin. Vani-cream is our go-to.
We go to Dr. Song a chiropractor and natural doc.  Acupressure, adjustments, cold-laser therapy, all sorts of crazy stuff that doesn't make science sense, but others swear by.  No visable help.  Sam loves Dr. Song though, and whenever we leave, Sam seems to feel great for the rest of the day.  So we still go!

More blood tests for allergens.

And a few more blood tests...

A fecal test... lots of fun.

And another blood test requiring 19 vials to see if his immune system is working properly.  As of today we are still waiting on the results. 

That's the underlying stuff.  

The past month a couple things were piled on top.  In May, his eczema was particularly bad. By June 11 we were at the allergist for some more blood work and a skin swab. It revealed an overgrowth of staph.  He went on his first ever round of antibiotics and the doctor made me promise to do a full 2 weeks of topical steroids.  I did it, but by the 2nd week, he started to come down with a fever at night. After the 2nd night of fever, I went to brush his teeth and noticed a foul smell and what appeared to be an infection behind all of his front teeth.  Small bumps were forming around his mouth. So on June 20th we headed to the urgent care to see what in the world was going on.  He was wrongly diagnosed with Hand Foot and Mouth and sent home.  

Over the next couple days, nothing ever developed on his hands and feet and his fever still came back at night.  Tuesday we were back at the doctor and immediately diagnosed with HSV-1.  NOT what a moma wants to hear.  We started an antiviral as we were finishing the antibiotics.

Things cleared up, sort of, and we left for a fun family vacation at the beach.  We hesitantly let Sam in the water.  Some of his eczema was still pretty bad and I knew it would sting.  But I was raised by a family that basically lives in the ocean and I know salt water makes everything better.  After a dip in the water and a 45 min car ride, we had to pull into a CVS to grab bandages for Sam's ankles.  He had dug them so badly when we weren't looking, blood was everywhere. 

We continued to care for his ankles. Changing the bandages several times a day and keeping him in pj's so he couldn't scratch.  By Sunday, July 5th the dreaded little bumps that were on his mouth a couple weeks ago were now appearing on his ankle.  Eczema herpeticum.  We headed home and back to the doctor on Monday.  Back on Antivirals and Antibiotics.  Swab was positive for HSV-1, negative for bacteria.  

Foot cleared up as his whole face started looking horrible, and his body was covered with an allergic looking rash.  I actually thought on the night of July 9th he was going into anaphylactic shock.  His whole trunk was mottled and all his eczema spots were extra red.  He was obviously not feeling well. But within the hour was playing normally.  His skin never really recovered. 

On Monday, July 13th, we went to a scheduled allergist appointment for blood work.  19 viles! They sent off a full panel to evaluate his immune system due to all his ailments.  Besides a list of over 50 foods that have shown some sort of blood/skin tested allergy, he has had chronic eczema and rashes, a viral infection over his eczema and chronic mildly low white blood count throughout his life.  

The week was a rough one.  Sam continued to look worse and by Thursday started back on a fever.  No sign of the HSV-1 but very rashy and his face was getting worse by the minute.  It was weepy and bleeding.  

Friday, before Hospital

July18th  the allergist admitted Sam to Levine Children's hospital.  Initially to get hooked up to an IV. The thought was, he needed antibiotics, antivirals, and possibly steroids, but maybe he was having an allergic reaction to the fillers in the medications.  

Unfortunately all of Sam's veins are small and weak from all he has been through.  The best of the best on the IV team tried and no one could make it happen.  We considered a PIC line, but after we realized it was an IV line inserted under anesthesia all the way to his heart, we thought we would try anything else first.  The boy likes to beat good odds and has a knack for acquiring infections.  I wasn't ready to try our chances at a line to his heart.

They wouldn't let us leave, but started him on stronger meds under observation.  We saw a little improvement, but not much.  A swab came back positive for staph on Monday. Finally. Not what I wanted to hear, but it made sense.  He continued to get worse on antibiotics and antivirals, because the infection he had - Impetigo over his whole face caused by staph - couldn't be treated by the meds he was on.  We finally on Monday afternoon got him on the right medications.  Tuesday they released us. He wasn't getting better, but he didn't have a fever and wasn't getting worse.  Thursday, after wet wrapping him, and applying some very strong topical steroids he started to look better.  Friday and Saturday we wet wrapped him 3 more times with the steroids. He looks better then I have seen him in a long time.  

This week, we should hear back on the immune work up they did on July 13th.  And, he starts phasing off the antiviral and antibiotic.  Please pray that the improvements continue and there is no rebound infection.  We have had bad experiences with steroids in the past. So we are going to slowly back off of them.  Pray for wisdom as we decide when and how to do that. And that his eczema doesn't flare when the steroids are completely gone. 

Watching "Tractor" aka Bob the Builder.

Thanks for loving Sam and our family!

PS.  At first, these two bugs, HSV-1 and staph, both sounded so scary to me. I have learned a lot though and wanted to share. Most of us come into contact with both of these bugs throughout our life, without any effect.  Some of us even carry one or both of them and never know it.  HSV-1 is extremely common.  It is estimated that up to 90% of adults have been exposed to it.  And almost just as many of us carry it, even if we are unaffected by it with cold sores.  And staph lives in many of our noses and skin with no effect or symptom.  

It is possible for anyone to have a problem with one or both of these bugs, but kids like Sam with open sores from eczema or those with compromised immune systems are at a much greater risk. Moral of the story, they are both pretty nasty bugs, but when understood they aren't quite as scary and obscure as their reputations made me believe.  The wonderful immunologist at the hospital said "excellent handwashing" is the best thing you can do to avoid problems from either of these common bugs.  Old fashioned soap and water!!

Today.  (baby) poolside.