Is this it??? (SSSS)

I have a friend named Elizabeth… She and I were fairly good friends, then the two of us got married at roughly the same time, then she moved to Alaska.  Both our marriages and the move slowed down the friendship quite a bit.  But, I’m happy when I see her, which is about once a year, when she visits family in town and visits our church, too, where she used to attend.  (She also married a cousin of my pastor.)

Facebook has increased our contact of late, which has been nice.  In fact, when Elizabeth and I were talking after church, her daughter appeared to be listening intently to our conversation, then she burst out, “Are you Karen?”  I admitted to that fact, and Elizabeth explained, “She recognizes you from Facebook.”  🙂

Elizabeth is a doctor.  She used to be Ethan’s pediatrician when he was a baby, and I — for selfish reasons — mourned her move, because not only is she a fabulous, brilliant doctor, but I could always trust her to tell me the TRUTH, and to give me a perspective that is Godly-wisdom-based, not just medically-based.  (For instance, she was the first doctor to tell me straight out that the pill is an abortifacient, which most all doctors will pussyfoot around or flat-out deny.)

Yesterday, after church, she came up to me, telling me that she had had a vision of me during worship.  She almost didn’t tell me, and, oh!  I’m so glad she did!  She saw me with a hobo’s bag full of tin cups that I kept messing with, and God was standing off to the side with a gold, jewel-encrusted goblet, that was full of healing.  The idea was that God had the goblet for me, and I kept messing with the tin cups.

In other words, I keep TINKERING with things, when He has HEALING.

I totally took that, on behalf of Fiala.

What made that especially significant is that yesterday was the day that some specific ministry prayer was to be done over Fiala!  Such timing.  We did get some prayer, though the team (for one reason or another) was only half its originally-intended size, and it was hard to pray because Fiala was VERY fussy and just wanted to go run.

Elizabeth only got a brief look at Fi, and now she and her family are off to California for a couple of days, but she also saw my pastor’s family for quite a while yesterday, and she told my pastor’s wife that she is quite certain that Fiala has Staph Scalded Skin Syndrome.

I started to Google it, but stopped, because the fear started to creep back in when I read that, often, in babies less than a year, SSSS is fatal.  Fiala is now 14 months, but this is the same thing — if it is it — that she’s been struggling with, in one form or another, since she was two months old.

Although this little girl, in England, who was diagnosed with SSSS, has patches that appear IDENTICAL to Fiala’s:

Again, this is NOT Fiala, but her patches look identical. Currently, her skin is even worse than the above baby's!

I still have lots of questions for Elizabeth-the-doctor, for some of the things that Fi has doesn’t quite fit the symptoms of SSSS, from what I can tell.  (Especially that patches from SSSS are supposed to heal in 5-7 days, and Fiala has had some of the same patches for literally months on end.)

Still, when I was praying this morning, I felt very confident that I am to trust Elizabeth, and that God gave her that vision of me, in order to increase my confidence in both her ability to hear from God, and in her medical advice, because right now, my trust-level in doctors is pretty low.

I’m not going to hunt her down in California to talk about it, but she did suggest (through our pastor’s wife) that I

  • stop breastfeeding and start her on goat milk (she suggested a 2-week trial, in which I also pump, to keep my supply up, and store the milk) — this is because it’s likely that I am the continuing source of staph bacteria
  • give her warm baths to which 2 cups of white vinegar have been added, as Staph (and other bacteria) can’t live in an acidic environment

I have done the second, but not the first yet.  Before I stop breastfeeding, I want to talk directly with Elizabeth about that.

She is also convinced that while Fiala may indeed have some underlying food allergy issues, it is extremely unlikely that she is allergic to EVERYTHING, which is where she’s currently at — reacting to EVERYTHING.  Elizabeth believes that staph in her body (maybe bacterial enterocolitis?) is interfering with the digestion process, and it’s the staph that is causing most of her symptoms.  Interestingly, people with bacterial enterocolitis can develop carbohydrate intolerances, and it’s to various carbohydrates that Fiala has always reacted most violently, which is why her (no-longer) allergist thought she may have some sort of sugar intolerance.

Elizabeth also said that while antibiotics might be needed, there are other things we can do to eliminate the staph and treat the symptoms.  It’s the “other things” that I’m really interested in right now… It’s hard to wait until we can talk!!

Part of me doesn’t want to get my hopes up, but the other part — especially due to the circumstances — is quick to think, “This is itThis is the answer to our prayers!  This is what Fiala’s been struggling with, her whole sweet little life!!!”


About Karen Joy

I'm a partially-homeschooling mother of six -- 3 boys ages 19, 17 and 15 years old, and three girls: 11, 8, and 3. I like birding, reading, writing, organic gardening, singing, playing guitar, hiking, the outdoors, and books. I very casually lead a very large group of homeschooling families in the Phoenix area. I have a dear hubby who designs homes for a local home builder and who is the worship pastor of our church. I live in the desert, which I used to hate, but now appreciate.

Posted on December 28, 2009, in Allergies, Babies, Christianity, Digestive Woes, Encouragement, Friendships, Medical Stuff, Missions and ministry, Motherhood, Prophetic, Scary stuff, The Kids, Vineyard Phoenix, Worship. Bookmark the permalink. 14 Comments.

  1. oh Karen! I pray it is the answer you’ve been looking for!!! ((hugs))

    God is good. it will all unfold in His timing. don’t lose sight of that and try to jump the gun. just continue to have peace and wait.

    (oh how I long for a sign like that for Ven!)

  2. Karen, I’m praying. I KNOW God has the answer. Kathy

  3. May she find healing, the tin cups so telling. Praying with you and for her. And this doc needs to talk to you!!!

  4. Treatment is pretty staightforward, and not scary or deadly. Curiosity made me google.

  5. Oh, Karen!!! My heart goes out to you. I know how frustrating it can be to have a child with a rare medical condition. Continue to have Faith and trust in God, and in many prayers being said for the both of you and your family. I truly hope you are on the path to Fi’s healing. Our thoughts are with you all.

  6. I sat in my tub last night letting the bubbles cover my knees praying that this is the goblet you have been searching for. That vision seemed so right on. My prayers and thots are for you…

  7. Oh, I do pray this is it!! Did you ever get mastitis in her first few weeks? Just curious about you being the likely source. If so, could you heal together instead of quitting breastfeeding?

    • Jill, I am hoping to “heal together” rather than stopping b’feeding, too. Although, since she’s 14 months, I’m at least willing to consider stopping altogether, at least do a trial of that while I continue to pump, when 3, 4, 5 months ago? No way. I nursed Audrey until she was 21 months, and had hoped to nurse Fiala until at least 18 months… but at this point, I think SHE would be more heartbroken than ME, if we stopped.

  8. Thank you everyone — Laura/Henny, Kathy, Lisa, Laura, Jill — for your encouragement. I, too, am confident that God has the answers, and very excited that He, through both conventional (doctor diagnosis) and unconventional (a prophetic vision) means, might have supplied us with that goblet of healing!!!!!

  9. I have been praying for this very thing! I hope that this is it. That sweet little baby needs healing and there is only One Great Physician! How wonderful that he provided you with such a great and honest friend that will tell you the truth.

  10. Wow! God is awesome, and I hope this is IT for Fiala! 🙂

  11. I continue to pray for Fiala’s healing & for answers for you both. What a joy it would be to have this prophetic vision come to pass!

  12. Karen your story made me cry…this is your gift, your sharing is actually helping alot of mothers, count me as one, to have hope and not give up…without a doubt God sent you Help, he always have but this time an angel, in your doctor friend, God is always good with timings, there’s always a divine reason behind it. Thank you dearly for sharing, I’m following your story of darling Fiala as my babyboy Sky, born 2 months early also has lots of allergies. I detested the neocate milk he was taking which caused bad constipation for him not to mention it’s super nasty taste and only God knows what they put in it. but I had no choice!!!. Then on his !st birthday last January 17, also the feast day of Santo Nino, Baby Jesus, he was given a very special gift…I was desperate because he ran out of his neocate formula and the soonest shipment would still be coming the following week!( we were overseas) I did everything humanly possible, checked-out pharmacies and groceries that were open on a Sunday, went to two ER hospitals asking for help..any milk they could suggest..none. Called three Pediatricians..all unreachable/out of town and one was in the hospital admitted — dared to visit her, begging for help, she suggested some random milk that was not even available at the local pharmacy. All this time I was praying hard for a sign. I came home empty handed but had to come home because I know my baby will be waking-up hungry anytime soon( it was already 5 pm)at least I could still breastfeed him altho not enough but it would soothe him while I make some desperate rice soup or give him goats milk, the Meyenberg powdered milk I bought awhile back but wasn’t sure I should give as my baby is allergic to milk protein. AND then I was sent a message.. it was too persistent to ignore make my story short, I got to a pharmacy in time before they closed and bought my baby this Hydrolyzed Whey Protein formula! It was a miracle no reaction no itching and now our skin is clearing we are on the road to recovery… Thank you Lord. Allergy/ies we still have, we are still in the trial and error food testing stage but I know there is hope. Thank you again for sharing.

    • Kathy, so is Sky one year old now? Or just turned two?

      THANK YOU for your words of encouragement. Every time I start thinking the blog is a waste of time, I get a note like yours and makes me realize that it is worth it!!!!

      By any chance are you on the MSPI forum? Fiala was never technically diagnosed with MSPI, though she couldn’t tolerate either milk or soy (still). However, many of the women on there have kids just like mine (and yours, perhaps!) with multitudes of food intolerances and allergies. It’s been a good help to me.

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