Laryngeal cleft message board up and running!!!

The new board is up and running!!  Please visit and join it here.  If your child has been diagnosed with a laryngeal cleft or is in the process of being worked up for one then this is the place for you!!  We also welcome parents of children with dysphagia and aspiration with other causes.

Back on Periactin

The wean went successful for Sam coming off the periactin.  He takes it for the cyclic vomiting syndrome.  He came off it fine and then had only one cycle while he was off.  It was the day after Christmas, so could have been caused by the excitement of Santa & the presents, etc.  It was a fairly easy cycle with us being able to break it with just zofran.  Some cycles are soooo much worse!!

As for his behavior and sleep…..I didn’t think there was really much change.    He still continued to be crazy and hyper etc.   Much like he was when he had the paradoxyl reaction to the Benadryl.  The sleeping is so much better now but it is because once I knew it wasn’t the periactin I enacted a reward system that is working wonders!! 

On Monday of this week he again complained of some mild nausea, not really a cycle, just mild nausea so I decided it was time to restart the periactin.  Three days into it I wondered if there really was a difference in his moods off it vs. on it.  Sure, he’s a hyper rambunctious boy but in the 4-6 weeks he was off I don’t remember seeing any episodes where he got VERY angry when he didn’t get his way.  Three days into being back on it I did.  I remember these episodes well too!!  When Sam doesn’t get his way he gets quite angry.  He yells in a totally different voice and if angry enough he hits.  I really don’t remember ANY of these episodes when he was off the periactin.  Now though, I really wish I had known to closely watch for these along with the sleep issues and craziness. 

I don’t really want to take him off again so soon and really confuse his little body.  So, I guess my plan now is to keep him back on it for long enough to see if these anger reactions are happening often.  If they are then I’ll take him back off and see if they really do stop.  And if they do then no more periactin for Sam!  It’s not really worth it to be so angry at 4 years old.  Not when there are other meds out there.

ENT appt — Ben

Another 6 months and some great ear tubes.  The ENT must really use glue on that boy when he puts his tubes in.  He had to have the last set surgically removed and this set is staying just as well.  But that’s fine with me since it’s his second set.  Maybe once this set is out we’ll finally be done!!!

The Wean

Remember this post where I wasn’t real happy with the decision by the GI doctor & APRN not to go along with my trial off the periactin for Sam?  Well, I talked with a friend of mine, who also happens to have a kiddo with CVS on periactin, and she agreed with me on several things:

1. the docs in that group don’t really listen
2. the periactin definitely could be causing Sam’s behavior & sleep issues
3. trialing him off is a great idea

So, today starts the wean.  He currently takes x mg.  Today we will go to 1/2x mg for a week and then off for 6 weeks and see how he does.  Hopefully he will have no vomiting episodes.  But really, I’m not sure how much the periactin has been helping anyway.  He goes for 4-6 months cycle free and then will have 3-5 cycles all in a row.  That is when they up the dose.  Then wha-laa no more cycles for the 4-6 months.  But is that the periactin helping or is that just the way his cycles naturally go?

 

I think I forgot to mention in that post that he had an opposite reaction to Benadryl when he took it for a drug reaction around age 3.  He was quite hyper and didn’t sleep for days.  That is why I wonder if the periactin is affecting him negatively.  I guess only time will tell.

Red Man Syndrome……or not?

When Sam had his open heart surgery he got vancomyocin for his peri-operative antibiotic.  When you have surgery you always get an antibiotic ward off any surgical infection. There are 2 they usually pick from. One is ancef which is in a family that is closely related to penicillins (which Sam is highly allergic to) and can lead to cross reactions. For this reason the surgeon picked to use vancomyocin. No chance of reaction….or so he thought!Sam got the first dose during surgery. The second dose was given 8 hours later in the PICU and about 1/2 way thru he looked like this:

Sam’s vanco reaction

They called it not an allergic reaction but an adverse reaction called Red Man Syndrome (RMS) which can happen with vanco. But I had a patient with that once and Sam looked nothing like that patient. If you look at the pic his eyes and lips are swollen. He got better with benadryl. If it is RMS then they can give it again just with benadryl before the dose and then run it slower. So, they did 8 hours later and he this time just got 6-8 hives on his face.

 

I showed the pic yesterday to Sam’s GI and she agreed with me that it was an allergic reaction! I told her I was considering taking him to a pediatric allergist (appt on Dec 17) and talking it all over with him. She agreed that was a great idea! So, I guess that’s the next step for my little antibiotic allergic one. Uggh! Does it ever end!!!!!

GI appt — Sam

Sam had his latest GI appt today for his cyclic vomiting syndrome (CVS).  He has been episode free since before his surgery so there will be no dosage changes.  This is fine with me as I don’t really want to go up on his periactin at all.  In fact, I wanted to and asked to have a trial off of it.

Sam is a very wild child.  Some would describe him as a “typical boy” but I’m not sure it isn’t more than that.  He is just downright crazy!!!  And more than anything he doesn’t sleep well.  They really grilled me as to if this started when he started the periactin and if so why I hadn’t said anything before now.  Well, first of all, he has been on the periactin so long that I really cannot remember what he was like before it and second of all I didn’t realize this was possibly one of the side effects. 

But they didn’t agree with me and say that periactin is the #1 best med for CVS so we should continue on it.  To pacify me it was agreed that we would give 1/2 the dose in the morning and 1/2 the dose in the evening and see if that had any change in his behavior  or sleep habits.  I’m not convinced……

Oh and he gained a pound and grew 1/4 inch in the month since he was seen last!  Quite amazing since he was recovering from open heart surgery during that time!!!

Bronchitis Now….uggh!

Poor poor Ben!

First the cold, then the asthma diagnosis, then the seasonal flu and now bronchitis.  Can it just stop already????

He had a dry hacking cough when he had the flu but it changed to this wet productive yucky cough.  He then started complaining that when he coughed stuff was coming up from his lungs.  Off to the pediatrician we went.  Sure enough….wheezing and junky lungs.  Pedi said he had a secondary bronchitis from having the flu.  Breathing treatments and z-pack, recheck in 2 weeks.

G I V E      H I M    A    B R E A K!!!!!!!

Finally feeling better

Poor Ben just got the asthma diagnosis after having a cold and coughing and coughing and coughing after it.  Then the poor thing got the flu.  The seasonal version, not the piggie (swine or H1N1) version.  His highest temp was 101 not super high like with the H1N1 version and he was able to have periods of being up and around not stuck in bed for 4-5 days like those that I know that had swine.

But at the same time it kicked his butt much more than a cold will.  It was easy to compare this to a cold since he was just getting over one a few weeks ago.  He ended up missing 2 days of school this past week along with the day of no school for Veteran’s Day.  Poor guy.  But finally he’s feeling better.  Hopefully he will catch a break now.  He’s my one that really doesn’t get that sick often so keeping my fingers crossed for him.

Cough-varient asthma

Benjamin was just diagnosed with this this evening.  It is the form of asthma that I have so I’m not too surprised.  I saw signs of it in him last winter too but this year it’s worse and it’s not even winter yet.  Uggh!

He is getting over a cold and just coughs and coughs.  A l l   d a y   l o n g.  But it’s at its worst when he is trying to do anything exertional.  He plays soccer (though the season is over now) and at both his last practice and last game he had to stop and rest because he had to catch his breath and get control of the coughing.  It’s so hard to watch especially since I know what it feels like.

The pediatrician put him on singulair to try and prevent any further episodes.  He said it will take up to 2 weeks to really make a difference.  If that doesn’t work then he will start on an inhaled steroid.  Hopefully we can get it under control before basketball startes at the end of the month.

Message Board/Support Group on hold

Hello all that have been following Jennifer’s story.  I haven’t updated in soooo long.  If you follow my other blog  then you know that I wasn’t well myself for awhile either.  But I’m better now too.  In the meantime this blog was put on the backburner.  I’m working on getting it back up to date but it’s a slow process. 

In the meantime, I have left the link for the message board/support group up but I have been slowly working on getting it moved to a new host site.  I have not been happy with the old one for awhile now.  Due to it being free there are a lot of minuses about it.  One of which is that the posts disappear after 7 days.  But if you are looking for information then having it not be there after 7 days is not good. 

But I found a new host that, while still free, is great.  However, it’s quite the process of retrieving all our old posts and moving them to the new site etc.  If I didn’t have 3 kids, 2 with chronic health issues then it would probably be done by now!!  So, hang in there and keep signing up at the old one that way I know to email you to move to the new one.  And please continue to have patience with me!  I do want to continue to offer support to each and every one of you going through this journey.  We are a rare bunch so we need to stick together!!

Peace, Happiness & God’s Blessings!!

Tracey