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Category Archive: Operation Hope

May 25 2013

What the hell happened yesterday?

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Akron Children's Hospital, Gavin, Operation Hope

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May 25, 2013

While it’s a bit overdue, I wanted to share what happened when we met with Dr. Clark yesterday at Akron Children’s Hospital.

Basically, our purpose is going was to find out if the fact that Gavin’s brain is improperly controlling his heart, has a negative impact on his heart itself. 

Does that make sense?

We have been worried by his rapid heartrate and didn’t really know whether this was bad for his actual heart or not. 

So what did we find out?

Put simply, Gavin’s heart is physiologically fine and while the numbers are high, they aren’t adversely impacting his heart health.  Basically, as far as his physical hearts concerned, we can ignore the numbers, at least for now.

His heart rate is more of an indication as to his current autonomic status and not the actual condition of his heart.

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That was basically, the long and short of it. 

I mean, there were tons of things in between but that’s the meat and potatoes of the conversation. 

We learned that over the 24 hour period of time that Gavin  was wearing the Holter Monitor, his average heart rate was about 107/bpm.  He explained that the reason that’s lower than what we see is because takes into account when he sleeps. 

During the day we see his heart rate in the 120′s – 130′s very consistently. 

However, when you factor in what his heart rate is while he’s sleeping, the average is only 107/bpm and nothing to worry about.  :-)

We talked about (what we already knew) how his heart issues are a symptom of something else (in this case autonomic dysfunction). Essentially, the heart is doing what it’s told to do and that’s all. 

Dr.  Clark didn’t want to make any changes because of how complex Gavin is.  He is however, sending a letter to the Cleveland Clinic, advising them of his findings and providing some heart related things to consider if they feel it’s necessary.  Since this is truly a neurological problem, it really falls outside of his area of expertise and he deferred Dr. Moodley at the Cleveland Clinic.

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Having said that, Dr. Clark was a huge, huge help to us because he was able to provide us with something we haven’t had in a long time, peace of mind.

He will always be there if we need him again and I believe we are going to have regular followups with cardiology to track things very carefully to make sure that Gavin’s heart health stays good. 

While we still have to watch his numbers as they are an indication of his current autonomic status, we no longer have to worry about whether or not his physical heart is being damaged in the process, at least for now.

One less thing to worry about, now that’s a victory.  :-)


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May 22 2013

Operation Hope: Big Changes

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Operation Hope

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May 22, 2013

Important note: I’m trying to post this around noon on Wednesday.  Due to our current Internet situation, I’m having trouble uploading anything to the site.  Right now I’m at the mercy of my incredibly slow T mobile data connection  that extremely hit and miss.

This will be in the outbox to post when  the data connection on my phone is stable enough to upload. 

I’ve been meaning to write about this for the last few days but I just haven’t found the time or quite frankly, the energy.

I received a phone call from Gavin’s autonomic specialists office at the Cleveland Clinic.  The nurse was returning our call from last week.  Dr.  Moodley was back in the office and so she had a chance to speak with him about everything..

Here’s the long and short of the conversation.

Dr. Moodley agrees that Gavin needs to be seen at Johns Hopkins, in Maryland.

He added that JH has an amazing ataxia clinic.

As I’ve said many, many times, we have the best doctors and they have the best staff. 

Dr.  Moodley wants to remain involved with Gavin, especially because he is so rare,  and make sure everything that can be done, is done. 

As far as Lizze and I are concerned, we would keep him as Gavin’s primary neurologist because he’s awesome,  he cares and he’s much, much closer to home. 

I’m waiting to get ahold of Johns Hopkins and find out the logistics, time frame and if this will even be possible. 

I don’t know how we would make this work but I would imagine that a trip out there would cost more than a few hundred dollars.  Granted, at least for us that a lot of money  but it’s a realistic amount and something we would likely be able to figure out. 

Besides, when it comes to my children, how could I not go to the ends of the earth for them?

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May 16 2013

We’ve come full circle and Gavin’s moving home

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Operation Hope

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May 16, 2013

Lizze and I have decided to move Gavin back home.  That probably comes as a shock to many of you and it was a very difficult decision for Lizze and I to make. 

I’ve talked many times about having to pick the best of all the worst worst options.

This is one of those times. 

Gavin’s health is going down hill and to be perfectly honest, the only way we can keep tabs on things is if we do it ourselves. We need first hand knowledge of his daily life.  With the current set up, that’s just not possible. 

Today when I brought Gavin home for a dentist appointment, we had to cancel it because he was not stable enough to even ride in the car. 

Lizze and I both, we’re afraid to put him in a car for the 30 minute trip to the dentists office. 

This wasn’t a behavioral concern either.

We were afraid that he would crash on the way to get his teeth cleaned. He struggled with the car ride home from school and that’s only a few minute drive. 

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This is all related to the autonomic issues he has and there is nothing we can do about it but literally have him take things as easy as possible. 

Lizze was felt very strongly that he needed to stay home and just rest. 

That led to the discussion about his health and Lizze said that we need to bring him home.  To be completely honest, I was surprised to hear her say that because of the impact that would have on her, personally.

We discussed our options or rather lack of them and decided that this was the best of the worst ideas. 

The truth is, as Gavin’s life becomes more and more complicated and his health more and more complex, we truly don’t have many options.  There’s a good chance that we will have to make the out of state trip to John’s Hopkins, in order to figure out what’s going on with Gavin and if there is anything going we can do to help him or prolong his life. 

In order to make the most of this, we have to watching him very, very closely for changes and signs of instability.

This is the only way to pull that off. 

There is no part of this that’s going to be easy.  The transition period will likely be hard on everyone.  However, we’re going to go into this with a positive attitude and work with Gavin to keep the transition as smooth as possible.

I fully expect that we are going to have problems.  It would be foolish to think that anything would be different. 

The really hard part is going to be finding balance and picking our battles because a meltdown or tantrum could be life threatening. 

Gavin’s doesn’t seem to care one way or the other. 

We do run a much tighter ship and he knows that. We have to because of the younger boys. He’s not going to like having the rules again but we’ll ease into this with him and make the transition as smoothly as possible. 

Again, we are aiming for a positive approach as we come full circle.


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May 15 2013

Operation Hope: The Unknown Factor

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Operation Hope

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May 15, 2013

A day can make so much difference. 

I received a call from Gavin’s immunologist, Dr.  Wasserbauer.  She was returning my call from yesterday.  She likes to personally return phone calls to parents, which is awesome in my book.

She wanted to make sure that I understood what was going on and let me know about the alpha-fetoprotein test, I was inquiring about. 

The AFP test was the first thing she had done back in 2011 (I think she said 2011). She knew that was the first step to take.  His levels came back normal and that’s why insurance wouldn’t pay for the genetic testing. 

Hearing this, things began to make more sense. 

You may remember from my previous ramblings yesterday,  the John’s Hopkins said that a negative AFP test pretty much excludes a diagnosis of A-T.  Dr.  Wasserbauer already knew that and so that’s why she said he doesn’t have A-T (Ataxia-telangiectasia). 

This is where I was confused. 

She doesn’t think he has A-T, she thinks he has Ataxia-Telangiectasia like disorder or ATLD for short.

Here’s a snippet from Wikipedia on ATLD.  It’s buried in the page so I snippet it and shared it here, with a link back to the original source.  This is reliable because it was actually written by John’s Hopkins.

Here’s the original link. Ataxia-Telangiectasia

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Some of the big differences between A-T and ATLD is that ATLD affects a different gene and mutation.  Also, telangiectasia are not present, symptoms show up later in life, the disorder progresses more slowly and immunological issues are not present. 

It also should be said that apparently, ATLD is even more rare than A-T. 

Now that we’re all on the same page again, this makes much more sense and I better understand where Dr. Wasserbauer was coming from. 

What happened was simply that I misunderstood what she had been saying and because of everything else that has come up with Gavin lately, this has been a back burner issue.

At this point, I have no idea what’s going on.  There is certain criteria that must be met for Gavin to go to the A-T Clinic at John’s Hopkins and because we know going into it that it’s not A-T, the may prevent us from proceeding with them. 

There is almost nothing known about ATLD, while this could be considered good news that it’s not A-T, we are in a position where we may not have anywhere to go.

Lizze and I have the utmost confidence in our team of doctors at Cleveland and Akron, so we’re good there. 

I don’t know what if anything this changes.  The prognosis seems to be the same, it’s just a slower, more drawn out process.

The other thing is that his immunodeficiency may be completely unrelated and a separate, independent condition all together.

The water is once again far too muddy to see the bottom and now, there is a whole helluva lot more of the unknown factor.


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May 15 2013

Big Update: I spoke with John’s Hopkins today

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Operation Hope

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May 15, 2013

I spoke with someone from the A-T Clinic as John’s Hopkins in Maryland this afternoon.  I learned even more information than I had before. 

Her gut says that based on what I was explaining to her, she would guess that it was not ataxia-telangiectasia.  Basically the reasoning for that is because typically, the symptoms begin at a much earlier age.

Having said that, it could also be that Gavin is just so complex that there are overlapping and unrelated symptoms going on.  This sorta mucks up the water and makes things more difficult to sort out. 

However, we do know the next step and that’s finding out if Gavin has had a AFP (alpha-fetoprotein) test and if so, what his levels were.

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This is Gavin’s Heart Rate Monitor Watch

I have a call into the Cleveland Clinic and Akron Children’s Hospital to find out if this was ever done..

This is basically an exclusionary symptom. 

If his levels are normal, than its almost certain that he doesn’t have A-T.  If the levels are elevated or even borderline, we will have to proceed with the next step, whatever that may be. 

The nurse explained they believe that there are approximately 600 people in the US with Ataxia-telangiectasia and they have seen over 400 of them come through their clinic.  They have never had a child come through with normal AFP levels and have Ataxia-telangiectasia.

At this point, I have to wait to hear back from Cleveland and Akron.

I hate waiting, especially for things like this.  However, we’ve been waiting a decade and so another day or so wait for information that can alter the course of our current journey with Gavin, doesn’t seem to bad. 

We just really need these levels to be normal……


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May 08 2013

Operation Hope: Good News/Bad News/Scary News

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Akron Children's Hospital, Immunology, Operation Hope

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May 8, 2013

I mentioned earlier that I met with Gavin’s immunologic,  Dr. Wasserbauer (Akron Children’s Hospital) while at Gavin’s IVIG infusion.

As the title states, this was a good news/bad news/scary news type conversation. 

Two and a half years ago, when Gavin’s immunological problems came to light, the very first concern was that Gavin had something called Ataxia-telangiectasia.

This explained the immunological and neurological dysfunction.  It’s the only thing that has ever tied just about everything together, in a nice, neat, scarier than all hell little bow.

At the time, initial tests indicated that thankfully, we weren’t dealing with that terminal condition. 

However, over the last two and a half years, Gavin’s condition, whatever it is, has continued to progress.  His immune system is more and more compromised, with additional immunoglobulins being affected as time has passed.

This was brought up again today by his immunologic during our visit today. 

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From what I understand, the only thing Gavin is really missing is the telangiectasias or little tiny spider veins that form on the surface of the skin and eyes.

My understanding is that some kids present differently and lack some of the symptoms. These are considered to be Ataxia-telangiectasia like disorder. Again, my limited understanding is that these both present in a similar manner but some symptoms are different. 

The only way to diagnose Ataxia-telangiectasia for sure is via genetic testing. 

Our doctor informed us that insurance wouldn’t approve the test and so it hasn’t been done.  This, I didn’t know..  I thought we had basically tabled the idea because at the time, it fit but isn’t also didn’t fit.

Does that make sense?

Everything with Gavin has continued to progress and get worse.  That’s now raising red flags that seem to point to Ataxia-telangiectasia once again.

One of the things we have to do is get him back to the eye center at the Cleveland Clinic. We need to see if the telangiectasias that were present in his eyes before, have progressed or been joined by more since.

They took very detailed photos of Gavin’s eyes the last time and so we have a solid baseline. 

When dealing with a progressive disease, a good baseline is so incredibly important.

Next we need to find out if the chromosomal micro array that (extensive genetic testing) had been done, included the test for something related to Ataxia-telangiectasia.

This really brings up some old fears again..

The good and unrelated news is that Gavin now has allergy eye drops.  That’s positive. 

The bad news is that insurance won’t cover the only way we can find out for sure if Gavin has Ataxia-telangiectasia. 

The scary news is that not knowing for sure doesn’t really make a difference because there is nothing that we can do.  There is no treatment and no cure. 

Below, is some information about Ataxia-telangiectasia via Johns Hopkins.  The original link is here. The information below is quoted from the Johns Hopkins website and I take no credit for it. 

It should be said that Ataxia-telangiectasia is extremely rare and Johns Hopkins is the place to be for help with that.

What is Ataxia-telangiectasia? 

Ataxia-telangiectasia (AT) is a rare, inherited disease that affects several organs and systems in the body, including the immune and the nervous systems. Most notably, it causes progressive degeneration of the cerebellum, the part of the brain that controls movement and speech. Symptoms develop in early childhood. The most serious complications include cancer (typically leukemia or lymphoma), which develops in about 20 percent of children with A-T, and recurrent infections due to a malfunctioning immune system. 

Symptoms:

Uncoordinated movements (ataxia) 
Poor balance 
Slurred speech 
Recurrent respiratory infections caused by immunodeficiency 
Spider veins (telangiectasias) on the skin and eyes  
Delayed physical growth and sexual development 
Diabetes 
Diagnosis 

Physical exam:

Laboratory tests, including the fetal protein alpha-fetoprotein, which remains elevated after birth in people with A-T and several other conditions.

Treatment:

There is no cure for A-T. Treatment involves managing and relieving the symptoms. Physical therapy and speech therapy are often recommended. Injections with gamma-globulin to strengthen the immune system may be prescribed. Children with the disease usually die in their teens or 20s.


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Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing and Accessories, designed by me. ;-)

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May 06 2013

Operation Hope: Gavin’s not coming home this week

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Operation Hope

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May 6, 2013

Originally, Gavin was supposed to come home tonight and stay through part of the week.  Lizze’s parents were originally supposed to be going out of town for something.

However, it looks as though plans have changed and they won’t be going. 

This means that Gavin doesn’t have to come home after all.  While I may sound like a terrible parent for being happy about that, it’s certainly not because I don’t love him or want to see him. 

With Gavin, comes lots of behavioral problems, especially when he’s at home. He’s very aggressive and has explosive rages and lots of tantrums when he doesn’t get his way. 

He’s a very destabilizing force when he’s at home. 

So yes, I’m happy that we won’t have to endure that.  However, at the same time, I’m reminded of how sad this whole thing makes me feel. 

Gavin’s quiet happy where he is right now and doesn’t want to come home so I try not to feel too guilty.  He’s doing better where he’s at and while he’s beginning to have more and more meltdowns at his grandparents house, it’s nowhere near what it would be if he was home.

At this point, I’m going to call this a victory, albeit a tainted one. 

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This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. ;-)

Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing and Accessories, designed by me. ;-)

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