Friday, October 8, 2010

Bullies

I feel defeated today.  
Bullied. 
Pushed in a corner and laughed at.

If I am the small kid in the school yard, then our doctors are the big bad bullies. 

We have been anxious for today's appointment.  It was the first follow up to the start of the Ketogenic Diet.

We woke up early.  We were dressed, coffeed up, and on the road right on time.  Traffic was good.  Matthew was in a good mood.  It was too good to be true!

Ten minutes out of our driveway Matthew started screaming.  He was in pain.  You could see it on his sad little face and hear it in his pain stricken cries.  Brandon and I began discussing what we thought may be wrong.

Dirty diaper...no
Hungry...no
Tired...well maybe but not to cause this

Then Brandon said something that started my mind to thinking~which is NEVER a good thing.  He thought Matthew might be uncomfortable in a sitting position.  We talked about how last Saturday at our local festival, Matthew would not go into his stroller but insisted on being held.  I shared that he didn't want to eat in his feeding chair or sit in his bouncy seat all week, though I had attributed that to him being spoiled.  I also thought about how this week while Josie and I walked the kids to the park Matthew screamed all the way there.  I thought maybe the sun was just in his eyes...but that many coincidences?

What in the world would cause our sweet lil guy to be in that much pain while putting pressure on his body.  Could it be impaction? Gas?  Reflux?  Something else?

So as he screamed the hour and a half to the hospital, we added his new symptom to our ever increasing list of things to talk with our doctor about. 

We arrived on time.  We signed in.  We filled out paperwork.  We were called back to a room within fifteen minutes.  That should have been a clue that today would NOT go as planned.

Dr. M came in to see us.  Normally we see the N.P. but as she was out on maternity leave we were actually seeing the neurologist, this being the second time we have ever seen him.  He was friendly, cordial.  We discussed Matthew's progress since beginning the diet.  We have seen vast improvement to his alertness.  He is beginning to express his opinions more.  He tries to focus on objects better.  All around we have been very impressed with what we have seen.  However, the lack of seizure control is still alarming.  We decided to go up in his ration.  We are going from a 4:1 ratio to a 4.3:1 ratio.  This means will be adding more fat to his already fatty diet.   We are also adding Klonipin to his drug regimen.  Thankfully, this med will only be a "cluster" med, meaning we will only use this when Matthew has cluster seizures.

 So far...so good.

Then we asked Dr. M about what he thought about Matthew losing oxygen and turning blue when he got upset.  This scary predicament is happening twice a day at least.  He thought this was another seizure and to use the Klonipin.  I disagree. 

We asked Dr. M about Matthew being uncomfortable all the time and if that could be reflux.  He suggested contacting our pediatrician as it was not his concern.  I disagree.

We asked about Matthew's rash that has been misdiagnosed four times.  Again, not his department.  I again, disagree.

So we walked out of the office with a new prescription and a list of phone calls to make.  I started them immediately. 

We got a hold of our Keto dietitian right away.  She gave us great pointers and was recalculating his diet already.

I left a message with our pediatrician's nurse for them to call us back. I felt productive already.

On the hour and a half drive home, Matthew screamed again.  This time we pulled over and tried to adjust him four times.  None of which worked.  In the midst of this I missed a call from our pediatrician's office.  I called back only to leave another message. 

In the first message I mentioned why I needed to speak with them.  I explained the loss of oxygen, the tremors we are experiencing, the rash, and the abdominal pain.  I am slightly more than thorough.

We arrived home.  We unloaded the car.  We put Matthew on his tummy, the only seemingly comfortable place for him to be, and we waited for the phone to ring.

In never did....

I have something to confess....I became so overwhelmed by Matthew's increasing pain that I lost it.  Lost it is probably not accurate.  I cried.  Splotchy face, can't breath, snot running, crying.  It was beautiful!

I was angry. 

Here lately we have heard the same story over and over regarding Matthew.  He has problems because he is a sick kid.

I. DON'T. CARE.

He is our sick kid.  He is our responsibility.  He deserves a good great quality of life.  It is their responsibility to offer that. 

From now on, I refuse to take any crap for the big bad bullies in our school yard.  I am stepping up and stepping on toes.  Our baby boy is worth more to us than that. 

So tonight my blogger buddies, I needed to vent, as I am sure we all do. 


When I came home and was snot sloppingly crying I found an old torn up post it note in one of my books.  It is what altered my mood, and allowed me to look at this from a new, powerful point of view:


"Hope begins in the dark, we wait, we watch, we work, we don't give up."


Anne Lamott

5 comments:

  1. I can't imagine the frustration that you are facing... I really hope that you can find some answers for Matthew... You are determined!!! And Matthew is so blessed to have you 'in his corner' =)

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  2. You are so brave, so strong, and so tough!! I am so glad to be able to say I know you. You make me proud, and I am glad I have been able to watch you grow and mature into the wonderful young woman and mommy that you are!! You just keep on fighting. I got your back.

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  3. Hang in there, you are strong and ready to fight.
    Is there another neuro you can see. We had a horrid neuro for several years and now see an absolutely wonderful one who. Same with our GI, I got so sick of the "its part of his disease process" statement. Thing is it wasn't. My poor guy had H-pylori and had been suffering with pain and discomfort for nearly 2 years before we saw a doc who listened. One visit later it was figured out and he was better. The "sick kid" statement is an easy out for a doc who just doesn't want to put the effort in(or doesn't believe our kids are worth it). Lots of prayers.

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  4. Ugh those big bad bullies frustrate me so often I can barely speak about it. But I agree with Junior's mom.... Can you find another doc? Our doctor shopping has proved beneficial for Chloe many times over. They haven't "cured" her, but they have taken our concerns more seriously and fought to get answers and help. It has been a blessing.

    Keep fighting. Matthew is lucky to have you because I know you will.

    Love the quote.

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  5. Oh, those doctors. It takes a while to develop a good core of doctors. We pay no attention to our Dr. for keto, other than for adjusting his diet. We have a separate neurologist (in the same dept as Keto Dr.), best pediatrician and a GI doctor to help with the reflux (and other issues). We have several others but those are the ones I have learned to count on. It might be good to find a GI doctor?
    As for the car seat, our Brayden went through the same thing. By the time we got to wherever we were going, I was sobbing because he screamed and cried the entire time. I had his OT and PT work with us on his car seat, then we got finally got a wheelchair that supported him (rather than the stroller) he was better. It is like he was not comfortable in his own body and could not fix it.

    When he is upset...turning blue, holding breath...same here too. Crazy?! We have been to many doctors without explanation. It is scary looking and boy it freaks people out!

    Sending you hugs.

    Oh, and I am not a pretty crier either...snot bubbles and all.

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