Just a quick update . . .
Isaiah still isn't feeling very well. He had his moments of normalcy today, but was awake a lot last night with leg pain . . . leg pain that lasted through to today.
I took him to the pediatrician this afternoon (insurance stuff after an ER visit), and the ped said that his tongue was still swollen (you could hear that by the way he was speaking), along with his eyes and lips. On top of that, Isaiah is extremely pale and looks like he has been punched in both eyes. Seriously, he looks like he doesn't feel good. The ped also added that there wasn't anything he could do. What?!? So, my child's tongue is swollen and his legs hurt him so badly he would rather be carried and there isn't at least one suggestion??? Nope. Just a, "this must be really difficult" for Isaiah and I and a, "bye." Okay, so I know there is only so much that you can physically do, but sheesh! Needless to say, this isn't the ped that we like to see. =0) There is at least one person in the office that we like to see, who seems to be at least somewhat gentle with her words.
Anyway, the allergist in St. Pete is worried (and a tad ticked that the ped didn't do labs and at the last remarks to us before he walked out the door) - he said that he doesn't like how this last episode is lingering like it is. Isaiah usually recovers rather quickly - usually within 6 to 12 hours. He is concerned about Isaiah's blood counts. At first, the doctor made it sound like we were going to go straight to the hospital after we got off the phone with him to have Isaiah's labs . . . thankfully, we can wait until tomorrow morning, when we go back to the ped's office to get a referral to go to the lab. He started throwing a few words around here and there, but that's beside the point. Please keep praying for Isaiah. The leg pain and such is just so difficult to handle - there is very little consoling Isaiah when his legs hurt that badly. Somehow, the little guy still gives you a smile and a giggle that could melt a heart of stone. I just hate to see him so quiet and miserable. I would rather have a "tornado" to clean up after than my baby be so silent. Okay, so ask me that when Isaiah's feeling better and I may have a slightly different answer. =0)
I am so glad God is in control and that He has all the answers and remedies that we'll ever need.
I promise I do have photos to post along with details about VBS . . . it's coming, I promise. =0) For tonight, I need to sleep. =0)
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The day nothing changed
7 years ago
3 comments:
Sorry to hear that Isaiah is still struggling so much after his anaphylaxis. I pray that he will get some relief soon. Leg pains are not fun.
praying...keep us posted. give Isaiah some Maryland kisses from us.
I'm sorry he is so miserable Kelly....that is so sad! What a horrible pediatrician! It sounds like I need to photocopy mine and ship her to you ; )
Gavin used to be like that about two years ago before we got really aggressive with his med doses. His reactions would just linger on and on so that they all kind of ran in together with no definite stop and start to them. The epi pen and fluids always stopped it for him, so obviously Isaiah's reactions are more severe.
But we have a friend in our neighborhood who has masto too (she is a teenager), and she uses epi pens several times a week. We have the same doctors and they have tried so much with her to get her under control, and when things worked, they tried it with gavin.
I think Gavin is doing well partly because our doctors think out of the box to try something a little out of the ordinary. Maybe your allergist can consult with Dr. Chin. He is one of the researchers and he is the one we see. He is awesome, and would totally be willing to help.
I am just wondering if you could add more H1 blockers and if you could go higher than you ever thought you could on the ones you use and on the mast cell stabilizer(s). For example, benadryl wasn't helping him at all until I got to 4teaspoons. I know the dose is sooo high but until we did that with each of his doses, we never got any kind of reprieve.
I hope it doesn't bother you that I am always making a suggestion--it is only because I always want to help. When Gavin isn't doing well, I do the same thing to myself--and it's just because I want to figure out something new I could do that might make it better. I'm always on my toes ready to face another challenge. I guess you could say I like to problem solve : )
I know that there isn't an answer sometimes, and I know how painful that is. Know that I'll be praying for you guys...and I'm always here if you want to chat.
Big ((((Hugs))))
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