But wait, there’s more!

but-wait-logo

 

Sorry if I got you too excited with the title.  It’s really nothing too thrilling.  It’s just – there’s more.  There is always more.

I held the phone all day in hopes I would get the promised call from the rheumatologist today.  Really I should know better.  At this point I just want to know if I can raise this child’s medication.  But, we will add that to the list of conversations for tomorrow.

Tomorrow – happening in just a few minutes.  My how time does fly.  And my fellow insomniacs, all with minds and hearts as full as mine will appreciate the fact that we laughed today.  We actually had a case of the giggles.

It started when I called about the car.  The poor, fairly new car at the “Car Doctor” continues to get worse news as the days go on.

CarDoctor

 

Today’s report was that they are “at a standstill.”

WHAT?  A work stoppage on my 7 month old car??  REALLY?

But they have to wait for authorization before they can ORDER any more parts.

AND, they are waiting for a “Field Mechanic” to come take a look.

How this happens to a car that 7 days ago the entire shop was swearing to me was just fine is amazing,

At least they are on the same page as I am now.

Meghan and I HATE the rental.  It smells, It shakes.  It’s dusty.

But we laughed at the fact that the mechanics can’t seem to fix the car any better than the doctors can fix her.

Funny what can make us laugh.

We know each other really well Meghan and I.  We are very “in tune” so to speak.  I guess it’s a product of being together so often in so many precarious situations.

So as we walked up to swim practice again tonight she complained of pain in her neck.  That was weird.

I touched it – checking for lymph nodes.  Nothing obvious.

She swam the first 50 yards and looked weak.  The coach motioned for me to come to the deck.

She told me Meghan said her throat was scratchy and dry and she was having trouble breathing.

Meghan told me she was GOING TO finish practice and she was FINE because she LIKES practice.

I stepped back from that level of determination.  The coach agreed to let her swim if I was close by and we both watched.

She swam until 6:05 after taking 1st place in her 50 free heat during the mock race at practice (and knocking off about 8 seconds from her time a few months ago) the coach told her to go.

Only ten minutes left in practice anyway, reluctantly she agreed.

speeding train

 

And I can swear to you as we walked up the steps to exit the pool that is where the speeding train plowed right through her.

That was it.  She was talking and then all of a sudden she was telling me she was swallowing nails.  She was pale.

It happens that fast.  This isn’t so much the Cowden’s but the weak immune system.  The IgG subclass deficiencies, the missing mannose binding lectin.  From winning her heat, to flat on her butt.  That fast.

So we drove home and she showered.  We talked about the pros and cons of urgi care at dinner.  We had the conversation more for something to talk about.  We all knew she had to go.

hello-again

 

So we even have a “regular” doctor at the urgi care, who knows enough history not to badger us with silly questions.  He dove right in for the strep test.  He dug into her throat and patiently watched for that second line to appear.  And finally – close to the 5 minute time frame, he walked over and said to me “here it is.”  Faint as anything, but it was there.

“Smart Mom, by tomorrow she would have been a mess.”

I know.  I know,  It’s that fast and that hard.  If I wait –  it gets ugly.

strep

 

That’s the scoop on Strep Throat – from a family that has seen a lot of it.   We thought we were rid of it when the tonsils left.

We forgot that Cowden’s patients can regrow their tonsils.  So the tonsil tags forming again in the back of her throat are little disease mongers.

The first dose of antibiotic went in around 10.  The second one will be tomorrow morning.

Tomorrow she was supposed to be at Bible School.  Tomorrow she will accompany me in the rental to Manhattan again for my follow-up with the breast surgeon.

I hope its quick.

She has PT at 1, and the orthopedist at 2:30.

No rest for the weary.  Have to check on that hand.

patience-buddha1-300x248

 

What do these three have in common?

Many simple species, such as the star fish, have the ability to regenerate severed appendages. [©Jupiter Images, 2008]
Many simple species, such as the star fish, have the ability to regenerate severed appendages. [©Jupiter Images, 2008]
The leopard gecko, like many other lizards, is able to voluntarily shed its tail as a strategy to escape predation. These lizards are able to develop a replacement appendage through epimorphic regeneration that resembles the original, complete with nerves, blood vessels, and skeletal support.
Days after the tonsils were removed in 2008

So, what do these three have in common?   Give up?  I bet a few of my Cowden’s Syndrome friends could guess…

They all can regenerate tissue that has been removed!

Except the first two tend to do it in a much more productive way.

I had heard tell that lymphoid tissue (especially the thyroid and tonsils) could regrow – especially in Cowden’s Syndrome patients.  (It makes sense in a way, PTEN is a tumor suppressor gene that is broken, so cellular overgrowth is common.) But, I chose to ignore it.

Sometimes ignoring things for awhile allows you to deal with other things.

When Meghan had her tonsils and adenoids COMPLETELY removed in May of 2008 she was in the middle of a 12 week strep infection.  Three months of antibiotics, and they were still pulling “heavy positive” cultures every 2 weeks.  By the time they were to be taken out she was admitted for several days of antibiotics prior for fear of rheumatic fever.  She was a chronic, almost constant strep sufferer.

Then for about 2 years – nothing.  No strep.

I don’t remember the first time it came back.  It was about 2 years ago.  A full year before I ever heard of a PTEN mutation, or had any idea what Cowden’s Syndrome had in store for us.  I thought it was odd, the strep coming back without the tonsils, but I chalked it up to a rotten immune system.

Slowly the cases have become more frequent.  It is almost constant.  We don’t leave the pediatrician without a throat culture and a script for an antibiotic.  Not all the cultures come back positive, but you can tell.  The food avoidance, the tough time swallowing, the swollen glands, the puss in the throat.  You just know.

Lately it has been about once every 3 weeks.  Way too many antibiotics to be good for anyone, but strep is way to serious to ignore.  So, we keep treating, and wondering.

Today we had a routine visit to the oncologist.  I mentioned the strep.  She looked in the throat.  She said, “Have you ever considered having her tonsils out?”

That’s when I knew we were in trouble… again.

Guess I should schedule that visit to the ENT!