What's going on with Isaac? [Part 3]

Part 1.
Part 2.

Part 3:

I left off describing our night and Isaac's pain, but I want to back up a bit and talk about the mention of autoimmune diseases (Crohn's, for one) during the doctor's appointment, and acknowledge that that was obviously a bit alarming to us.  I know very little about these things and I'm probably misspelling every medical term, too.  Sorry.  Please do correct me if I'm off in my spelling or definition or understanding of anything medical.  At this point we know only that Crohn's is a chronic thing he would be dealing with for the rest of his life.  Mark had looked up some things, but my knowledge was strictly based on what the doctor had explained and my friend Michelle (my personal medical consult) had described.

Mark and I sat on the couch and cried and prayed together that evening.  My tears were because watching my son in that much pain was really difficult.  Mark was worried about all the what-if's down the road.  Mark had decided to stay home from work the next day (Tuesday) because he was very much needed in transporting Isaac up and down the stairs, and because we were a bit worried and overwhelmed.

Children's called the next morning (Tuesday, April 12) to schedule an appointment, but didn't have an opening until the following Monday.  Um, yeah.  I'm on this end of that phone conversation trying to picture Isaac in that much pain for one more week, without the okay to even take ibprofen.  So I asked to speak with a nurse to talk about pain management or anything we could do to make him more comfortable (ice? heat? elevating his limbs?  I know nothing about joint pain.)  The nurse I spoke to listened to my report on how Isaac was doing/how much pain he was in, and suggested that our primary pediatrician call the specialist at Children's to talk that over, or determine if we needed to come in sooner (via using the ER).  She gave me a phone number and an extension.

I called to speak with the doctor we'd seen the previous day to supply him with details and the phone number.  He was out but I spoke with his very-thorough nurse Becky, who said she'd give the doctor the details on how Isaac was doing and get back to me.  She called within five minutes and told me that they were sending Isaac's lab results ahead and that we should take him to ER at Seattle Children's.  Okay, then.  (Basically, I think they were just trying to force their hand to see him sooner.)

This was all kind of a whirlwind, obviously.  I had been trying to make pancakes for the kids but was interrupted by all the phone calls, and then suddenly needed to get all of us out of the house.  My mom said she'd take our other kids, so we had them pack up their school stuff and then dropped them off at her house with our griddle, the pancake batter and some lunch stuff.  Then Mark went to get gas and I showered, collected stuff for us, and we hit the road.

IMG_2651
Isaac in the ER
We made it to the ER at around noon, and met the ER doctor, Dr Ben, who was also a very good (and thorough) doctor.  Dr. Ben checked him over, paying close attention to his joints-- pressing on and moving all of them, asking lots of questions about his stomach issues.  He also said he was leaning towards it being autoimmune, and he mentioned Crohn's, too, as well as Rheumatoid Arthritis or Lupus or something along those lines, because of Isaac's joint pain.

The supervising ER doctor came in to check him, too, and seemed a little more reluctant to think autoimmune just because there is no family history and because all of his symptoms didn't seem to line up (no fever, no stomach PAIN).  She mentioned it maybe being viral, but said she thought they'd know more "what track to go down" when they got the lab results.

The nurse came to check his vitals and gave ibprofen (!!!) and Benadryl and said Isaac was running a low fever.

Dr. Ben came back in late that afternoon to go over the lab results with us and to tell us what direction they'd decided to go.  He had been consulting with the Rheumatology specialists and the Gastro-specialists there at Children's and the rheumatology doctor at least thought it was less likely rheumatalogical (is that the right term?) and more likely a viral infection with the joint pain being a reaction to the virus.  Apparently the sudden onset of the joint pain/arthritis/inflammation is unusual; usually it's a gradual climb.

PLAN: repeat the labs, add in a couple more labs, send us home with an anti-inflammatory prescription, and wait it out for 2 weeks.  IF there's still joint pain at that time, Rheumatology will want to see him.  So basically they were at that point going down the "It's-looking-like-a-viral-infection" track, and sort of moving the autoimmune options down the list.  (Good news, I guess?)

Except that we still have no answers.  And his symptoms are still the same.  So we wait.  Our doctors here in town want us to keep our appointment for next week, so we will see the Gastro-specialist on Monday and maybe will get more answers (or be able to rule out some things?) then.   


[Part 4 is now here.]

23 comments:

  1. Will continue to pray for Isaac and your whole family. Love from Kansas!

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    1. Thank you so much, Candice! Love to you and yours,
      ~Stacy

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  2. Catching up with you tonight and so sorry to find that Isaac is having such a tough time. Count on our prayers and those of our church family as well. We love you so ♥

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    1. Thank you, kind friend. You are so dear.

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  3. Stacy, I cried reading this! What a serious thing this is, I am so sorry! We will pray, and please, please, please if you need anything let me know, or you need to drop the other kids off here, please do so!

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    1. Thank you, sweet Coralee. You're so sweet. And thank you so much for your prayers.

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  4. Stacy, thank you for your update! My heart is with you because nobody understands a mother's heart for her child like another mother! I don't know if this is helpful, but I searched "joint pain" and "diarrhea" in a great alternative medicine/homeopathic FB group I belong to in the Twin Cities, where very savvy moms give GREAT advice on health. One lady and two of her kids were having similar symptoms to Isaac's and this is what she said:

    Hi ladies, thanks for the post's! Went to the doctor and turns out it's parvo a virus that affects the joints. Which makes sense because my kids just got over fifths disease and they are related. 6-12 weeks until I should expect to feel relief in my joints...YIKES!

    Not sure if this could be a possibility for Isaac? I will be praying for a clear diagnosis, comfort for Isaac, and peace for all of your family. My kids would love to help me pray too. :) Hugs

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    1. Thank you, Elizabeth! Interesting-- I'll have to look up parvo. Thank you for your concern and for your prayers, especially. You are so sweet.
      ~Stacy

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  5. Other things I'd try in the meantime... epsom salt baths to detox, add some essential oils (try some of these: wintergreen - joint discomfort, roman chamomile - inflamed joints, or spruce - aching joints). Cut out refined sugars and refined grains, as these can exacerbate a potential auto immune condition. Probiotics are great! Keep that up!

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    1. Thank you! A friend of ours just dropped off some essential oils for him tonight: Immune Strength and DigestZen. The ones for joints look interesting. Thank you so much for all your ideas!
      ~Stacy

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  6. My heart is just breaking. Watching our children hurt is heart wrenching and emotionally draining. While I can't offer to help you with a meal because of our distance, I will be praying for you and your family. I hope that you received the package I mailed and it will offer you encouragement to embrace the Father even more during your forced "slow".

    May you all receive some good sleep tonight.

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    1. Thank you. It is so emotionally draining. I had no idea. I feel so spent. You are so dear to pray for us. Thank you. Prayers are so powerful and I do not take it lightly that you would pray for us. Thank you! (And yes! Thank you for the package you sent. You're so sweet!)
      ~Stacy

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    2. We are continuing to pray and hope that you have a restful weekend. You are so welcome for the package.

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  7. Sweet friend...I am so sorry you are having to deal with this! The unknown and having to see Isaac in so much pain. We will be praying for healing. Our God is an Awesome God and He knows the answers. Praying you can rest in His goodness and healing power. Love to you guys!

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    1. Thank you, sweet Sarah. I am resting and trusting in God. I know His ways are good. Thank you so much for your prayers. We so appreciate them!
      ~Stacy

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  8. Stacy! Poor Isaac!! I will be praying for all of you. And!If you have to be at Children's in Seattle for any length of time, please let me know. I'm 35 min away.

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    1. Thank you, kind friend. (((Love to you and yours))).

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  9. Stacy! Oh my word... your poor little dear! Praying for relief from symptoms and some fast answers. :( Trusting God with you, friend.

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  10. Hi there....occasional visitor here. I enjoy your writing, your love for the Lord, and that we have kids in similar stages of life :)
    Just wondering if you guys got tested him for Lymes disease? I don't even know if that's a thing in your state....here in Western Pennsylvania it's becoming fairly common. We've had many friends whose children have been diagnosed with it. A few of them had it very bad, and the symptoms sound almost identical to what you describe.

    Just a thought :). I will be praying for your dear son.
    Jane M.

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    1. Aw, thank you, Jane, for your kind words and concern.
      I just looked up Lyme disease after seeing your comment. I have no idea! His rash looks different, and if I'm reading correctly, it looks like bacteria from a tick bite enters the blood stream, so I'm thinking that would have shown up in his lab work? But I really don't know. I'll read more about it and check.
      Thank you!
      ~Stacy

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  11. Continuing to pray. Please update when you can but wanted you to know that we are still thinking of you and your family.

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  12. Oh man!! I'm so sorry! :( I'll be praying for you all. Please continue the updates! Poor guy! I hope and pray you can find someone to give you answers.

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