August 20, 2014

Update on Joseph - Just When I Thought We Had It Figured Out


I apologize for leaving everyone hanging with Joseph's situation. But I appreciate the comments from you asking for an update. It's nice to know that people are thinking about him.

Well let's see, there is much to tell so where to start... I guess from where we left off on his last update.


When Joseph was first diagnosed we were given a prescription for an anti-seizure medication called "Gabapentin" to help control the chorea. Unfortunately, after several weeks of slowly working our way up to the highest dose, it was clear that the medication wasn't working... at all.

Well, other than the side effect of fatigue. That seemed to be working just fine.

About three and a half weeks ago, we switched him over to a new medication called, "Depakote". We were told it would take 2-4 weeks before we started seeing any results from it.

The side effects for this would also be fatigue, but include increased appetite (which for Joseph is good), loss of vitamins and minerals in his system, and a possibility for complications with his kidneys... or liver... or both. I can't remember now.

But blood work will need to be done every month to make sure those organs aren't being effected.

As we weened him off one medication and started him on the other, Joseph was exceptionally moody and high strung. It wasn't until someone mentioned that perhaps it was the switching of the meds that was throwing him off that I even considered that could be what it was.

I haven't had enough experience with meds to have that thought cross my mind. But I really think that was the case. Now that we have adjusted, his mood has improved significantly.

But it was a really difficult couple of weeks, lots of tantrums and melt-downs, and Hubby was traveling for work.

Sometimes I felt so far out of my parenting league it seemed I didn't know which way was up and which was down.


About the time we switched his medication, we were also to start him on the never-ending round of antibiotics. We had decided to go with the shot every four weeks instead of taking daily doses of liquid.

I had the appointment all set up for his first shot when I was informed that the shot is quite painful. Not at all a quick or easy experience. The liquid is thick and goes in very slowly, also his arm would be very sore for a couple days afterwards.

Well, I for one was getting nervous about it. Joseph was really struggling, we had just found out he had lost five pounds which on him was not good since he is so skinny anyway, and I really was concerned that this would all just be too much for him.

That's when someone blessedly told me the penicillin comes in a pill form! When we talked to Joseph about the two options, he immediately jumped on the pill idea. He doesn't have a problem at all with needles and no matter how many times his blood gets drawn, he doesn't even flinch. But the idea of a painful shot was too much. Since he has to swallow his other medication, it has been no problem throwing in an extra pill.

I'm sure at some point in the future we will re-visit the shot. But for now, this is his daily regiment.


  • Anti-seizure meds
  • Antibiotic
  • Probiotic
  • Multivitamin

It is a lot. But he does remarkably well with it and takes them all like a champ.



About a week and a half ago I thought I started seeing a bit of improvement. But I almost didn't trust myself. I was nervous that perhaps I was just seeing what I wanted to see.

But then others started commenting on how much better he was looking, that he wasn't quite so floppy and twitchy. Even his speech was starting to improve! Yay!


Up till now we had only seen our regular pediatrician and the pediatric neurologist. Yesterday we finally met with a pediatric cardiologist to learn more about his heart.

*sigh*

I should just know by now that every specialist will have new and/or different information than what we were told before.

I was under the impression that we were trying to avoid rheumatic fever so that more damage wouldn't be caused to his heart. But according to the cardiologist, Joseph already had rheumatic fever and that is what caused the chorea and the leaking in his heart valves.

I'm not sure if it's the other doctors that got that wrong or if I just wasn't understanding it right.

But whatever result you got from having strep is what you'll get again if you catch strep again. If he does get it again, his heart valve would probably receive enough damage to need a valve transplant!

So we were then informed that Joseph would need to be on penicillin until he TURNS FORTY YEARS OLD OR UNTIL HE ISN'T AROUND CHILDREN ANYMORE, which will probably be never. So basically he will be on antibiotics FOR THE REST OF HIS LIFE!

If I had a hard time swallowing the "until 21" bit, the whole "for the rest of his life" thing is rather mind-whirling for me.

*double deep sigh*

We are suppose to meet with someone from "Infectious Diseases" at some point so we'll be asking them about this.

Other than that his heart looks and sounds really good. But if he ever gets sick, especially with a sore throat, or if any of us get a sore throat, or if he is around anyone with a sore throat we will need to take him in to see the doctor and get a quick strep test.

Every. Single. Time.

The cardiologist also told us that there has been an epidemic in the mid-west since the 1980's that about ten percent of people who have strep don't even know they have it because there are no strep symptoms! This often leads to other very serious health issues.

She said that millions of dollars have been dumped into research to find out what is causing this but they still have no idea why this is the case.

Interesting.

But if for some reason Joseph does catch strep again and shows no signs, we would eventually know because his chorea would come back.


As of now we are still dealing with his chorea, it is still noticeable, but has indeed improved.

It gets bad when he is tired, stressed, or upset.

However the cardiologist said that besides the anti-seizure medication, steroids are usually used to help bring the inflammation down quickly, thus getting rid of the chorea faster.

Well, this is the first time I've heard this! So she is going to look into that for us.


On that note, we had been debating whether or not to send him to school this year or if I should homeschool him.

I had been waiting to see how much his chorea would improve before we decided. I had almost reached the decision that I would send him when we met with the cardiologist.

She encouraged the idea of homeschooling because, despite the improvement, it will still be hard for him to hold still at all, let alone for long periods of time. Same goes for writing and holding a pencil.

Plus will all the stress that would come with school, it would only make the chorea act up and as we all know, kids can be mean. I'm afraid he would get teased and picked on.

Not to mention all those lovely colds and illnesses that he we would constantly be around.

So, I guess I am homeschooling my oldest two this year. I think it will be easier to do the two instead of just Joseph. This way they have a "work" partner. Someone else who is doing school work and they can work together.

Believe it or not, I don't mind the thought of homeschooling, though I do feel rather unprepared for it all.

But I am thankful for the kindness of our Heavenly Father and others who have reached out and helped us through everything. And I know He will continue to help and be with us.

It's all good. It is!

*sigh*

I can do this... right?

10 super cool people speak:

Tristan said...

You can totally do this! It is good to get updates for us, and it is good to get information for you. Even when it's hard to hear! We've faced a lot of 'for the rest of his life' or 'we really just don't now' information for Mason. It doesn't get easier. But Heavenly Father will take what seems overwhelming and ease the path. Truly. If you had told me all of what we would have to do on a daily basis and that Mason would have had 14 surgeries by age 2 when I was pregnant with him I would have rolled over and died. Talk about overwhelming! But we're making it one day at a time and much of what would have been overwhelming is very normal and ordinary to us now. (((HUGS)) Freak out as needed! Then keep going.

Homeschooling is awesome! It's been one of the best decisions for our family for many different reasons over the years. Feel free to check out my blog ( http://ourbusyhomeschool.com/ ) or email me from there using the Contact form if you want to chat!

jaacs said...

Wow! What an update. Hugs to you and your sweet boy. That is a lot for a Mama's brain and heart to take in. What a relief that he is getting the help he needs and that you seem to have some good doctors involved in his care.

As for homeschooling, if I can do it, you can totally do it! We are only on our fourth year, but what a blessing it has been! Like this news, just take it one day at a time. Don't overwhelm yourself anymore than necessary by looking at the end...just think about the first year/semester/month. Keep the chocolate close and you've got this! :)

Heidi D said...

I have been checking regularly for updates. Glad to hear you are getting medication sorted out. As for the "rest of his life" thing all you need to do is one day at a time. There is no telling what medical advances will happen before he is an adult. It is difficult when there are unknowns with health. I was born with a heart problem that was inoperable & my whole life has been one big unknown. My parents were told they would lose me before I was 6 months old, I will be 46 in October......one day at a time......wait & see how things go......it can be frustrating but you can do it. I will continue to keep your family in my prayers

Madame Coin said...

You can do it, Serene. God knew that you'd be the best mom to those lovely crazy kids of yours, and he'll help you be just that to them.

As for homeschooling, I've always liked Auntie Leila's advising at likemotherlikedaughter.org

We "homeschool" only during the summer, but the trick to successful homeschooling is to get your kids to read, write, and work through a solid math curriculum. The rest will come.

I'm so glad you're working on figuring these things out. Joseph is blessed to have such a caring and loving mom.

Emily Coyne

Anonymous said...

Hang in there, you've got this. Life can't be crazy forever. That's what I had to remind myself of while caring for my 5 kids at home and my hospitalized newborn(hospitalized for months). Blah. It will get better, just hold on tight for now :)
Joy
Ps- you're doing good in the mom department! Putting your kids' needs as a priority and dealing with all this without your hubby? That's tough stuff right there. Don't compare your mothering of now to what you were while on top of your game. You'll feel on top of your mothering game again...when you're not dealing with crushing stress. You can do this because you are doing it!

Heather Nicole said...

You've got this!
Have you looked into online public schools? My younger brothers have done K 12 in the past and it was a good fit for my family due to a busy busy schedule and my mom having a brain injury.
As a good friend says to me "Chin up, knees down." And lots and lots of chocolate ;)

Susan Anderson said...

Sending lots of hugs and prayers your way. And good luck with the homeschooling. I wish I could have had a teacher like you!

:)

Renee said...

Oh Sara I am so sorry you are having to go through all of this. You are a strong person and I know it is a lot to handle. Please keep the updates going and we will keep you in our prayers. Lots of love and hugs!!!

AJ had that same strep, but we caught it. His ONLY symptom was horrible, out of control, PROJECTILE vomit, it was horrible and when I took him to the doctor it was strep. He had NO sore throat, was not tired or weak, nothing else just the throw up.
So look out for that as a sign too.

Kellan and Rikki-Leigh said...

Oh my goodness! I've been keeping up but not commenting. I can't even imagine how difficult and crazy things have been for your family! Thank you for sharing your experiences, you are inspiring. We're keeping all of ours home this year for school (K,3rd,4th and 2 pre-K) and I'm scared to pieces, but excited. We're still stuck living with my parents which I did NOT want to happen, but I feel like I need to move forward with it anyway. It helps so much to read that others are successfully navigating their trials, it makes it easier to see the tender mercies in my own life. God bless you to keep figuring it out!

Michelle N. said...

So glad to hear the things are improving (even if slowly). Hope he feels better with each day!

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