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Lamentations on a Long Day of Dr Visits... Part 2

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Wednesday, March 2, 2011

Lamentations on a Long Day of Dr Visits... Part 2

So that last time we tried to cram 3 doctor visits in 1 day - I came home and was brutally honest about how terrible they were.  It is extremely stressful to go to a doctor for the first time.  How do I present Alexander? When I explain his diagnosis... do I tell them the things he might do? or the things he might not do? how much emphasis do I put on the right words to express the help we need and I know we need help without portraying Alexander in a light that no amount of help will help him.  This is, of course, my personal view of our interactions with doctors.  Some doctors refuse to even see us because they feel Alexander is out of "their range of comfort zone."  Others see us and then say, "well, from what I know about WHS, he will never _______ insert any old word, so why bother."  And, just as frustrating was our last visit with the geneticist who said, "why worry? You can't do anything to change him, so just let him go. ex: Give him more diuretic and he will poop more."  I do believe therapy and interventions work.  I do believe medications work. And -  I believe Alexander deserves these medications / therapies / interventions etc.  So - we only work with doctors that believe like I do.  You can call it whatever you like - but ... this is our life and this is our son
So.... today's visits were..... AWESOME!!!!

Visit 1 - Endocrinologist - really not necessary in my opinion - but we went.  When Alexander had his 45 + minute seizure - his blood sugar dropped very very low.  He is a "hard stick" so they never did get the right lab work to determine what was going on. The reason we stayed in Hershey so long a few weeks ago was to do a 24 hour fast to attempt to get Alexander's blood sugars to drop again.  They never did drop again, and Ray and I believe his blood sugar drop was a result of a big seizure - not the cause of one.  Although blood sugar drops can cause seizures - so does Wolf Hirschhorn Syndrome - which we know he already has.  We've checked his blood sugar every morning and it hovers around 100 - after an 8 - 10 hour fast of overnight sleeping. Just like it should. So - a delightful visit that we can check hypoglycemia off our list! YAY Alexander - finally something you don't have. 

Visit 2 - GI Doctor.  This was the visit. The doctor. The guy who had to help us.  This was the visit I needed to choose my words carefully and get Alexander the help I knew he needed.  Alexander cannot tolerate the volume of food/liquid he should be able to tolerate. He just can't do it. Even if we put it in his tube - he will sometimes scream for 2 hours because his stomach contents have not moved.  And... it doesn't have anything to do with pooping - he poops.  His stomach does not empty properly.  I have researched this topic. They used to put kids on Reglan for it (bad bad bad drug). There is a class action law suit now against Reglan and it can make kids have palsy like shakes, etc. bad drug.  The GI doctor I tried to see a few months ago was ticked that we could no longer use Reglan and he's the one that said - even if he did help us - Alexander would never do anything - but just be fat.  When I say research.. I ask other WHS parents what their kids' symptoms are / what the doctors say / and what meds/therapies they use.  Then, I spend hours going through medical journals, etc to see what I can learn on my own before we go to the doctor.  I understand this might be unorthodox.... but none of the doctors we saw today have ever seen a kid with Wolf Hirschhorn - so - in Alexander's case - I need to be his expert and advocate.  Anyway - the newest "best solution" to slow gastric emptying is a small dose of an antibiotic called Euthromyacin .... I've been after this drug for months.  We sat and talked to this doctor for an hour or so. You know what his first suggestion for helping Alexander was? Euthromyacin. :)  It was like this huge wave of relief washed over me. Finally ... he didn't want to tell me Alexander wasn't worth helping.... He had a nice, non - invasive solution. Did I mention that I LOVE our new GI doctor?

Finally - our Immunologist appointment.  By now it is 2pm and we are exhausted.  And she is wonderful.  She explains that she would like to run basic tests on Alexander's blood to determine if his immune system is compromised and if it is - by how much. This is exactly what we wanted her to say.  No - there is nothing you can do to "fix" a compromised immune system - you are just more susceptible to illnesses ... but ... we can know if we should be paranoid about germs or not. (Right now we are just paranoid)

All in all - an awesome day. Totally different than our last day of 3 visits.  I was so nervous because all of these doctors were going to be new to Alexander.  I was afraid we would make a "misstep" and the doctors would not help Alexander. Instead.... it was a day like normal people have at the doctor. AWESOME.

2 Comments:

At March 2, 2011 at 10:15 PM , Blogger Kisses4Kaylee said...

Glad to hear the good news about Alex and the new doctors. We have had a busy week with a bunch of appointments the past 3 days, too, with a mix of good and bad news. Unfortunately, Kaylee's seizures are not being controlled with Keppra, so she has to begin using Topomax, as well...a drug with more significant side effects than Keppra alone. On the flip side, we have our date for G-tube surgery-- March 22nd...right before our get together on the 26th. I am planning on getting all of the Mommas' advice in care, use and help with the tube on that day. lol. Cannot wait to see Alex...and you!

 
At March 2, 2011 at 11:57 PM , Blogger Laura said...

WAHOO!!!! So glad you were able to find some doctors that see Alexander as a PERSON NOT a syndrome! It still amazes me (and makes me angry) that the other GI doc treated you all the way he did. Some people are so ignorant! Yay for good visits and for something that will hopefully help!

 

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