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Date Posted: 12:30:24 04/04/03 Fri
Author: audreysmommy
Subject: REPOST from backup board...Jayton's home!!

Hi everyone!

Thanks so much for your thoughts and prayers. Jayton is doing MUCH better but is being closely observed to be sure he doesn't need a second dose of IV-IG. Audrey is doing better. She had a severe asthma attack Tuesday night and we took both kids back to Children's Hospital ER (we were there Sat. and at another one Sunday) since Jayton had spiked another fever of 105 and had already had two antibiotics and a shot of Rocepherin. They did a chest X-Ray on Audrey and found a small area of pneumonia so she is on antibiotics and Jayton got another dose of Rocepherine and had lots of blood drawn for further tests etc. We were sent home and seen by our Dr. Wed. morning when they decided to admit Jayton (more symptoms, more fever etc.) Rather than re-write an update that I just sent to my email buddies I'm going to cut and paste here. I hope you all don't mind. Here's the info.

Take care,
Sandra
*************************************
Hi girls,

Well, it’s been a whirlwind week over here but I think we will survive! Jayton is home but under close observation and round the clock high doses of baby aspirin and Audrey is coughing off and on and it doesn’t sound good so she may still need some medical attention. Whew! Where to begin….well, first Jayton does have KD and was treated with a high does of IV-IgG –Immunoglobulin. He did pretty good the first couple of hours and then spiked a 104 fever (he went from 101 to 104 in about 10 minutes). He trembled so bad until it hit the 104 mark and then just sizzled. They turned off the IV and let his body recover from the fever (after a dose of Tylenol). Once he was back to 98 degrees they started it again but still very slowly. In the morning they turned it back up and he did fine. He has not had a fever since then. The IV took about 16 -18 hrs. He also had an Echocardiogram and did great! The results came back normal and he will have follow-ups until they are convinced there was no damage to his heart. I guess he still has a chance of something happening over the next few weeks but I’m not sure. I’ll ask the doctor Monday morning.

As for what triggered the KD know one really knows. All they know is that something triggers the body to go into overdrive and basically attack itself. It could be a bacteria, virus or toxin in the environment like a cleaning agent used by professional carpet cleaners (we’ll never have that done that’s for sure!) or possibly insecticides. KD is an autoimmune reaction and the body thinks it is wiping out bacteria or viral invaders (hence the high temps). It literally is in over drive. The swollen lymph nodes are also a sign that he’s fighting off “something”. The high temps are not what is dangerous but rather the attack on the vascular system (heart, veins, arteries, capillaries etc) so that’s why the do the echo. Jayton’s symptoms included the high temp for 6 days (as high as 105.3 –but I was assured that this would not damage his organs etc.), redness in the feet and hands, red eyes –looks like pink-eye w/out the goup, cherry red lips that looked chewed up and busted, a swollen tongue with large taste buds, and the first sign a swollen lymph node which eventually spread to two swollen lymph nodes. Not only did he have the symptoms but he also had negative bacterial cultures so this led the doctors to believe that he was indeed experiencing KD. I have not been told if this is something that he has a higher chance of developing again in the future or if his odds are back to “normal”. I’ll ask on Monday. I’m also wondering if he could develop heart problems much later and if this will effect how they screen him for sports when he’s in school. Lots of questions for the doctor on Monday J

They did say that we caught this very early and that his was a “mild” case –can you imagine what moderate or severe would be like?! It was very scary but I kept reminding myself that we caught it early (needs to be treated w/in the first 10 days of fever onset) and that there was treatment. Oh, the reason we came home so soon was because the doctor said it was our choice. At the point that he was at there is nothing else they will do for him other than treat him for any high fevers he might spike and then re-admin. The IV-IG and that would not be for a couple of days so if he does need an additional dose we would just be readmitted. Jayton wanted to come home so bad I couldn’t imagine staying there when I had a choice to bring him home so that’s what we did. Naturally he hates the children’s aspirin but he has to have it so I wake him up at 12:30 and 6:30 for his doses. This high dose is to keep his blood thin while his vascular system gets back to normal and to reduce the chances of further complications.

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