What's going on with Isaac? [Part 4]

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{photo from last month's visit to the daffodil fields}
Hello, friends~

Thank you to those of you who have followed up to see how Isaac is doing.

If you're confused at the title of this post and need to catch up, I've been chronicling this journey here on the blog.  You can click on these links to catch up: Part 1, Part 2, and Part 3.

Thank you for any of you who have been praying for my boy.  I feel so blessed.  I have told Isaac that there are people all over the nation praying for him.  The other day I was telling him that this is one of the amazing things about being part of God's family: that God's people (who do not even know him!) are praying for him, simply because you believe in God, and believe that He loves us and hears our prayers, and that you genuinely care about him because you DO love Jesus.  Thank you.  Isaac is thankful, too.

So.... our appointment was Monday afternoon with a gastroenterologist.  Isaac had been doing pretty well.  Quick update on his symptoms:

Joints: Day 11 of joint pain.  In the days leading up to his appointment, his pain had decreased for sure; he was moving easily.  He is always in pain to some degree, and the pain seems to travel around his joints, sometimes concentrated in a knee or his wrists or his ankles or arms, but overall, the pain was less.  The anti-inflammatory pills (Naproxen) the ER doctors had prescribed were helping.  He had even gone outside-- twice!  Once to sit on the trampoline and another time to try to play baseball in the yard with the other kids.  (That didn't last long.)

Hives: His hives remain.  Day 14 of the hives.  The itching has gone way down (thank you, God!) but the rash crops up somewhere on his body (usually chest, stomach or his legs or arms) each day, and during the night he'll end up itching.  We've been giving him Benadryl every four hours.


Stomach issues: We're about six weeks in to his stomach issues, now.  His stomach had recently been worse again, several trips to the bathroom and the evening before our appointment, blood in his stool.  [I think I forgot to mention this in the earlier posts, but that night that I began to be concerned about his joint pain and called my friend Michelle; the night before we made the initial doctor's appointment with his pediatrician, she had asked me to ask him if he'd had blood in his stool.  This is several weeks into his diarrhea, mind you.  And he told me yes.  Just a little something he'd forgotten to mention to me all those weeks.  He said maybe 50 % of the time he was seeing some blood.]  Anyway, since then the blood had been much less frequent, but now it was back again.

Sore throat: Six weeks of a fairly persistent sore throat.  Some days he'll say it's fine, other days he'll say it's really bad; hurts to swallow, and sometimes will complain of a "bile-ish" taste back there.  The doctors haven't seen redness or spots, and seem puzzled that his throat is sore at all.

Appetite:  His appetite has decreased significantly.  Most days he eats very little, (and will say "I just don't feel hungry."  This from a boy who LOVES flavors and food and loves sitting down to a home-cooked meal.)  Some days he seems to have a huge appetite and wants to eat, and tries to eat normally, but cannot.  He gets full quickly.

* * *

So, back to our appointment. It was a relatively quick appointment, and after the doctor asked questions and listened to how this has all unfolded, he said "there's a lot of gray, meaning that there's no clear answer.  Every doctor seems to be puzzled that there's no stomach pain, that he hasn't had any fever throughout this process, and that he hasn't lost weight.  And no one seems to have any clue about why his joints are acting up.

He mentioned "the worst case" being either Crohn's or Colitis, or perhaps some benign polyps in his colon, but said he couldn't know unless he went in and did a colonoscopy and endoscopy.  He said he would have liked to schedule those for the following day, BUT since Isaac had been on the anti-inflammatory, he didn't think he'd get an accurate picture of what's going on.

So he asked us to stop giving him the medicine and call within a couple of days to make an appointment for a colonoscopy and endoscopy next week.  He said if the joint pain had gotten worse in the meantime, he would refer us to a rheumatology specialist as well.

The last pill Isaac took was Sunday night, and he managed Monday pretty well.  He was a little sore in some joints, but able to move and walk.  (I think he's getting used to the pain, too- and a certain level of pain has become his new normal.)  Yesterday I noticed him wincing several times.  He's not a complainer, and won't offer up information that might make me worry or lose sleep.  So I have to press him a bit to find out what he's feeling: "Isaac, which joints are hurting right now?"  When asked yesterday, he admitted that his wrists were hurting, and his ankles, and one of his knees.  Last night his knee was in so much pain that he couldn't extend his leg all the way, and he had to use me for support to hop on his good leg from the living room to the stairs, then scoot down the stairs on his bum.

I will call today to schedule the colonoscopy and the endoscopy, and will also ask for an appointment with a specialist in rheumatology.  I am hoping he can be seen early next week.  I am especially concerned about his joint pain worsening in the coming days.

Thank you for letting me ramble on here about what is going on in our lives.  I know that so many of you have your own trials; your own stories of pain and heartache.  It is my prayer for you that God would meet you there, and that you might sense His presence and find His comfort in the midst of the hard.  I pray that He would strengthen you and encourage you through His word and through His people.  Blessings to all of you,

~Stacy

21 comments:

  1. Oh Stacy! We will be praying for you all and especially for healing for Isaac. I will be praying that the grey soon becomes clear for answers.
    Ursula

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    1. Thank you, sweet Ursula! I'm so grateful to know people are praying! Blessings to you and your sweet family,
      ~Stacy

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  2. I have so concerned for him (and you, and your sweet family) and asking the Lord for clear answers and pain relief for your precious Isaac. (And you can now tell him that there are people around the world praying for him! Love and prayers from Norway.)

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    1. Oh, thank you! (And he will LOVE that about you praying from Norway!)
      ~Stacy

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  3. We are still praying and our hearts are still aching with sadness to learn that this is still ongoing. Thank you for taking the time to update and we will keep checking in and praying.

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  4. Oh, sad! Continuing to pray for healing and answers.

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  5. Thank you so much for keeping us posted here. Praying still, friend. -Candice

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  6. Keeping you all close in prayer ♥ love you!

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  7. Still praying! I can't believe the long list of symptoms he is experiencing, such a trial! Praying for wisdom for the doctors, a diagnosis, as well and relief, comfort, strength and more communication for Isaac.

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  8. Hi Stacy, I have followed your blog for many years, but have not been on in awhile (so am just now reading about Isaac). My 12-year old daughter has Crohn's Disease and has suffered from it for 4-5 years. What you are describing does not sound like Crohn's at all (and that is a good thing!). If you have any questions for me, I'd love to share more. -Melissa in California

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    1. Thank you for commenting, Melissa. I am sorry for your sweet girl to be struggling with it. Hang in there, mama! I'd love to hear whatever you're willing to share about your story. Do you want to send me an email? My link is on the sidebar.

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  9. One more thing... this does sound autoimmune related, and very similar to Enthesitis Related Arthritis. The good news is that there are medications that can help and excellent doctors- especially in your area. I know others with similar autoimmune disorders (to ERA) and with "Biologics" (a type of med) they are able to live very normal lives, without pain. My daughter will be starting a new Biologic for Crohn's after a major surgery in a month. We are looking forward to a new lease on life. Thanking God for modern medicine. Praying for clear answers and guidance for you, and God's peace that surpasses all understanding! -Melissa in California

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    1. Thank you, sweet Melissa! And, praying for your daughter's surgery right now: {God, please give the surgeon and the whole medical team precision and wisdom, and pour Your favor upon the whole surgery and recovery, and upon every detail that surrounds it. I ask that you would bring peace and hope to this sweet family as they are walking this hard road, and that You would be near to them through this. Amen!}
      Blessings to you and yours, Melissa

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  10. Praying for all of you, Stacy!

    Is there any chance this could be Lyme Disease? We live in an area where Lyme is prevalent, but it is difficult to diagnose. My sister was diagnosed with Lyme about 11 years ago and the first symptom she had was joint pain and swelling.

    http://www.lymenet.org/library/deet/domino/file.nsf/bbf2f15334c1f28585256613000317cc/eee9f15bfb66a105852567c700120022_OpenDocument

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    1. Kristin- You're not the first person who has suggested it. I think the chances would be very slim, because it's not very prevalent in our area, but I do mean to ask about it when we're next in the presence of a doctor with a lab facility. (Or perhaps they already tested for it and I'm just unaware...?)
      Thanks, Kristin!
      ~Stacy

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