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How it all started

Here goes my first post.  I suppose it makes sense to start at the beginning and give a sense of the order of events leading up to Isaiah's diagnosis.

October 12, 2011
Seven days into Isaiah's preschool career he comes down with a fever.  I assumed that it was just a virus that he caught at school, as everyone knows that daycares/preschools are a basically germ-filled petri dishes.  I give him Tylenol to try to keep the fever down.

October 13, 2011
Isaiah continues to have a fever (between 38C and 39.5C), so more Tylenol is given.  He then has two episodes of diarrhea, so I decide to reduce the variety of foods he is eating.  My pediatrician always recommends that we take our kids off dairy when they have diarrhea, so don't allow Isaiah to have any milk.

October 14, 2011
The fever returns as soon as the Tylenol wears off, so we continue administering the maximum dosage allowed per day.  Isaiah also continues to have diarrhea and not much of an appetite.  We have been feeding him mostly pedialyte and water, with a few crackers here and there.  Isaiah hasn't been interested in playing and spends most of the time watching TV and sleeping.

October 15, 2011
That morning we noticed that Isaiah hadn't been rotating his head and complains that it hurts when we touch his neck.  Subsequently, we notice that he is developing two large, matching red, swollen bumps on his neck located where the lymph nodes are.  We are concerned that he has meningitis (based on the neck pain) or something else, so we decide to take him to the children's walk in clinic.  Of course, the closer of the two clinics recommended to us by our pediatrician is closing soon (because no kids get sick on a Saturday AFTER 1 pm), so I head down to the clinic on the Danforth.

I retell the symptoms of the past few days to the doctor and show him Isaiah's red, swollen bumps.  The first thing he says is "Well, I haven't ever seen this before."  Nice.  Just what you want to hear from the walk in clinic doctor.  He ends up diagnosing Isaiah with having a virus and concluding that the neck pain is from general flu aches (told to apply hot compress) and that the red spots are due to the swollen neck muscles irritating the lymph nodes.  The doctor instructs me to keep administering the Tylenol and goes on to say that it's okay to give him milk even though he has diarrhea, contrary to what my regular pediatrician says.

That evening Isaiah throws up what little liquid is in his stomach.   When we are getting him ready for bed we notice a rash on Isaiah's underarm and groin area   Of course we start to freak out again and decide that we should get up early and take him to the walk in clinic again.  We also notice that Isaiah is having a bit of trouble balancing and walking.  We assume that it's just because he has been lying down so much that he's so tired.  I breakdown crying while doing the dishes, because I start to wonder if something else more serious is wrong with him.  Mike suggests we take him to the ER at SickKids if I really feel we should.  I decide that it will probably be a waste of time and they will just send us home and tell us it's the flu.

During the night Isaiah poos in his diaper due to the diarrhea.  He is potty trained for poo and has not had a poo in his diaper at night for over a year.  Also, he continually wakes up to drink sips of his pedialyte.

October 16, 2011
I wake up early to take Isaiah to the walk in clinic.  I want to try to be one of the first in line.  I think I arrived there about 5 to 10 minutes after they opened and there is already a line up.  I am given a number and wait with Isaiah in the car in an effort to minimize exposure to more germs. I am glad that we end up with the woman doctor, as the older gentleman pediatrician seems a bit absent-minded and keeps asking the woman doctor for information.  I recount my story again and add on the diagnosis from the previous day, plus the new rashes.  By this time the rashes have gone, but there seems to one developing on his chest and back.  The doctor looks in Isaiah's mouth and decides to take a throat swab to rule out strep throat.  She mentions that his tongue indicates that he may be a little dehydrated, so we should ensure he is getting enough fluids.  She sides with my pediatrician and says no milk.  She says that he has a virus and that the rash is just an allergic-type reaction his body is having to the virus.  I ask her if I should be concerned that he still has a fever after 5 days and she says that sometimes a fever from a virus can last up to seven days. I am told to follow up with my regular doctor in a couple of days.

October 17, 2011
At this point Isaiah is sleeping most of time and barely awake the rest of the time.  When we put him in his highchair to eat, he looks like he is going to fall asleep at any moment.  He is barely eating and is surviving mostly on Tylenol, pedialyte and water.

During the day I notice that he is constantly rubbing his eyes and picking the inside of his nose.  The skin around his eyes become very red and sore.  He complains that his nose is itchy every time I tell him to stop picking it.  I put some saline drops in his nose to combat what I suspect is dryness, but he continues to pick at it.  He picks it so much that I see some blood in his fingernails.  Now I am concerned that he will get an infection from the open wound in his nose.  Another thing to worry about!  I assume that both of these symptoms are part of the allergic reaction the walk in clinic doctor spoke of.

Isaiah still has the diarrhea and fever (around 39.5C).

October 18, 2011
I take Isaiah to see his regular pediatrician and recount the whole story again.  He decides that I should give Isaiah Benadryl to see if it eases his itching.  It seems that he thinks that the eye and nose irritation are due to some sort of allergic reaction as well.

I ask him if I should be concerned that Isaiah still has a fever after almost a week and he says that sometimes that can happen.  He tells me what he always says: "You are the best judge.  You know your child and can tell if he is not well."  So I tell him that I feel that something is definitely wrong.  I tell him that this is NOT my child.  Isaiah is not acting himself at all.  He tells me to try the Benadryl and call him tomorrow if things aren't any better.

I finally force Isaiah to take the Benadryl (he is so sick of taking medicine at this point) and wait to see if there is a change.  There doesn't seem to be any.  He has diarrhea in his diaper again that night.

October 19, 2011
Isaiah eats a bit of soup and pasta at lunch and I am overjoyed.  At one point I thought his fever had broken, but then it promptly returned.  He is still rubbing his eyes and picking his nose.  I notice that he has now developed a new rash on both thighs.  I try to get him to walk a couple of steps and he refuses.  (At the time I thought he was just afraid, because he hadn't walked in awhile, but looking back I realize that his joints were probably inflamed and sore. )  I start bawling when he manages to hobble over to me, barely keeping his balance.  I immediately call the doctor.  He tells me to come in right away, so he can see him and admits that he may have to send me to the hospital.

When I go to see the pediatrician I am ushered in right away.  He takes a look at the rash and tried to get hold of two local allergists.  One of the offices does not answer and the other allergist cannot fit us in.  Isaiah's doctor decides that we should go the ER.  He was originally going to send us to Markham-Stouffville Hospital, but I inquire about SickKids.  My pediatrician used to work at SickKids, so I know that he is big supporter of that hospital.  He is concerned that I will end up with a long wait time there.  I ask him his opinion off the record.  He doesn't say that it is better than going to MSH, but says that SickKids has all of the resources available there.  I decide to go there, just in case Isaiah needs those resources.  At the time, I didn't really feel that would be the case, but figured it was better to be safe than sorry.  My pediatrician calls ahead to let them know we are coming (not sure if that made a difference), but informs me that the wait time is going to be a few hours (whatever that means).

I drive down to SickKids in the rain during rush hour and meet Mike in the ER.  We check in and are quickly seen by triage around 6pm.  We are registered and then wait.  And wait.  And wait.  We are finally brought into an ER room around 10 pm. The doctor comes in and listens to the complete story and examines Isaiah.  She leaves to discuss with her senior.  Her senior then comes and examines Isaiah.  She and the first ER doctor exchange some thoughts in medical jargon and then they leave the room again.  The first doctor comes back in and informs us that Isaiah has Kawasaki disease.  My heart skips a beat and I feel like crying even though I have no idea what that is.  Fear of the unknown I suppose, plus anything with the word "disease" attached can't be good.  She proceeds to explain to us that sometimes when kids get sick and their bodies are fighting the illness their immune systems go into overdrive and start attacking the body.  Similar to an autoimmune disease.  She explains the treatment is something called an IVIG and that it is relatively simple and straightforward. She informs us that they will be admitting Isaiah into the hospital and they will need to start an IV and obtain some blood samples.  She also explains that the IVIG is manufactured from blood products and has to explain all of the risks associated with it.  Scary.

When we are left alone for awhile, Mike and I both quickly start Googling Kawasaki disease.  Despite the fact that it is consistently labelled as curable, we are both distraught by the information that it may cause heart damage if not treated in a timely manner.  At the time I really didn't think Isaiah would end up being one of those cases -- I am so sad that I was wrong.

Comments

  1. I just happened to find your post. My son was also diagnosed around the same time. He was 5 years old. As I compare our stories, it is scary how similar they are. I hope your son is doing well. We have had a few issues over the last year with fainting spells and need to go back in for another echo and MRI. I have yet to continue with more tests as I feel my son becomes a "test subject" every time we are at the hospital. Thank you for sharing your story.
    http://cooperandcharlotteshow.blogspot.com/2011/11/kawasaki-disease-part-1.html

    ReplyDelete
    Replies
    1. Sorry it has taken me so long to respond to your post! My poor blog has been very neglected lately. I took the time to read your posts and you are right: our stories are very similar. Cooper's story is the first that I have heard of first-hand that involves vision problems. I hope that Cooper is doing much better now and that the fainting spells have subsided. Thanks for your post. I would love to share your post on my blog's Facebook page at some point.

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