Prednisone and Asthma Update

Yesterday F had a follow-up visit with the pediatric pulmonologist.  We were there to discuss the use of the prednisone.  Prior to the appointment I had asked F if he felt that weaning off the prednisone had a negative impact on his breathing?  He communicated yes to me.  The outcome of our discussion was that it would be in his best interest to begin taking the every other day dose again.

The doctor came in and said that he had reviewed all of F's records and happenings over the last seventeen months (that's how long it had been since F had been to clinic).  We explained F's decision to wean down on the prednisone after being told by a handful of doctor's that the secondary skin infections had to do with immune suppression to which the this doctor replied "Do you have urinary tract infections? Do you have other infections sinus, ear, respiratory? Is your blood sugar out of control?" All questions were answered with a no. Although F has had his fair share of infections this year, he did not have an excessive amount of infections (the cysts by his ears... another story completely), other respiratory infections were secondary to viral illnesses, and his lab work looks great.

In a quick nutshell, the doctor spoke directly to F, Caroline, and I. He  informed us that this dose of steroid is low.  That other doctor's have somewhat of a narrow viewpoint that is isolated to there area and level of expertise.  That they are overlooking what is most important and that is the comfort of the patient.  That if F breaths easier his body is less stressed.  He will have fewer seizures.  He will be more comfortable which is ultimately most important.  He should be breathing comfortably enough to ENJOY his life and his life's daily activities.  Which F admits he's been less comfortable and it has impacted his activities.

I love that the doctor and F interacted together.  The doctor understood by facial expression and F's head turns all of his yes and no responses (we do not use high tech communication at appointments it's too fatiguing and stressful).  F was pleased with the doctor's plan for him. F was not happy when learned he can no longer be a patient in the clinic because of his age, but was relieved and pleased when he told F  he is only a phone call away and that his primary care doctor or any other doctor is always welcome to call and consult with him about his respiratory needs.  We have to be diligent and find a primary care doctor who is willing to put the focus on keeping F comfortable to enjoy his daily life and not on solving whatever problem is right in front of us for that moment be it a skin infection, ear infection, or cold.

F needs to be cleared for surgery to have his preauricular cysts removed.  Due to the increased inflammation he developed from the use of the lower dose of prednisone from the weaning process F needs a five day prednisone burst to get it under control and then he'll return to his regular 10 mg every other day for his maintenance dose.

Overall this was a valuable learning experience for me, but mostly for F.  I think it built F's confidence in himself and his abiltiy to communicate.  That he can make his comfort a priority when it comes to his daily needs and care.  That it is VERY important for him to be able to live the best life he can.

OMG! I have a blog!

I started this blog with the intention of sharing my family story and haven't been quite consistent. Just when I forgot that I had a blog I decided to check on it.  Yep, it's still there.  Once you put your life out there in cyberspace it's out there... probably forever. When I checked the stats I can see that there has been some traffic.  I even checked out which posts have been getting hits.  Whether that means that it is actually being read is another story.  This made me feel obligated to post.  If the blog is getting hits.  Maybe someone is  ACTUALLY reading it? Perhaps I should stick with it after all?  Here I sit with a timer set for twenty minutes to hack out an update. I'm late for  F's second set of morning meds and I have a sink full of dishes calling me... yet here I sit.

Basically my summer has been filled with so many things. My daughter's swimming (being a swim mom and volunteering at swim meets as a USA official). Being a Taxi mom (getting these kids to all over their locations, Trying to maintain some level of running mileage (I did register for the marathon in December... not really sure what I was thinking when I did that). Trying to get a grip on my twenty plus year marriage (many arguments and counseling... we have an appointment today). I spent at least a month being sick (with some freak upper respiratory infection) and still trying to manage all of those duties.  Let's not forget all the other normal duties of laundry, house cleaning, etc.  All of this makes time fly by... so investing in this blog has not been in the forefront of my mind.  I forgot to mention I even registered as a college student... probably an epic fail for me and reality check. 

So much has happened and each one can be it's own blog entry.  Rethinking F's prednisone occurred yesterday.  Both F and I learned this week we have some weird congenital birth defect from our time as embryo's with baby gills (no joke... true statement).  My experiences as a stroke and turn official has it's own set of lessons and stories.  My list could go on and on.  For now I'll just post this and then figure out where to start.  I posted the draft I found sitting regarding our initial decision to wean F off of prednisone.  I'll try to knock out the follow-up to that one quickly.  Let's not forget the experience C and I had volunteering at the Special Olympics. Our tortoise even escaped and went on an adventure in the neighborhood. .  So I suppose rather than maintain this blog more for myself and my family so they can stop by and remember our adventures. 

The Prednisone for Asthma

In the spring of 2010, Forrest was really struggling with his asthma. He has a complicated lung system by not only the asthma, but his cerebral palsy and poor swallow and management of his own secretions and saliva. Many years without speech therapy had left him drooling with a slack jaw that just hung open. He would also allow his saliva to pool in the back of his throat resulting in some degree of aspiration that contributed to continued inflammation of his lungs and chronic respiratory infections. So that spring his pulmonologist recommended that he try a low dose of prednisone every other day. We decided at that time the benefit would out weigh the risk.

Then Forrest started getting speech therapy. Slowly and gradually I've watched him stop drooling and gag less on his saliva. He no longer has a jaw that just hangs open.  He can close his lips together.  Although he still coughs you can tell it's not always a result of his saliva running down the back of his throat.  He hasn't had pneumonia since 2010. He's done very well with respiratory infections.

I've been so distracted by the skin infections and cysts that I've given little thought to the use of prednisone until this winter when that cyst on his face abcessed shortly after a burst of prednisone. Then the infection returned after another prednisone burst. So far the doctor's have felt that the abcessing of the cysts has been influenced by the use of prednisone and the friction on the cysts based on his physical moved.

A week ago Monday we had F in the doctor office for a cyst under his arm that I just randomly discovered during his shower. We started compresses immediately. The doctor confirmed it's a cyst. During that appointment we discussed the use of the every other day prednisone. It seems that long term use has finally caught up with F.

The writing has been on the wall, but it took that appointment to really bring these secondary infections and the likelihood that there is a connection to his use of the steroids. Over time the use of the steroid begins to inhibit your body's own ability to heal and fight infection. Thus the reason we are beginning to see more and more occurrence of these infections.

We have begun the weaning process for the prednisone. I'm hopeful that with less drooling and improved oral motor skills that perhaps we can get away from the need for the steroid. My fingers are crossed.