Don't Scare Me Like That

So prior to the actual day starting, Nathan did a fasting blood sugar of 151.  I called the DR to let them know what the fasting was.  Then I called Endocrinology just to let them know what was going on and to see if they had run an A1C during his last routine blood tests.  And they hadn't.....   now I'll start sharing FB Statuses from the day too....

FACEBOOK UPDATE: Now Nathan might have diabetes...Okay so his boy bits have been swollen again...Did a pee dip on him yesterday morning....Ketones were abnormal...So I did a non-fasting blood sugar on him....It was 252 yesterday...This morning's fasting bs was 151...Called his DR who he saw yesterday, he said just keep an eye on him, I called his endocrinologist to let them know what is going on...Endocrine called back, told them the story, they said they would call back, the doc called back (not the nurse) and she wants me to feed him something high in carbs and sugars and do his bs 1 hour after..If it's over 200 he might be admitted for a few days...Or we may just do a diabetes thing in the clinic on Thursday

FACEBOOK UPDATE: How much more can this kid take? I am really angry at the world right now, I may put a smile on my face and try to pretend I am calm but I am fuming inside. We are on our way to the ER in Tacoma right now (that is where his endocrinologist is) ... Nathan had some ketones yesterday that prompted my doing his blood sugar which was 252, his fasting was 151 this morning. Doc wanted us to give him a high carb, high sugar meal to see what his body did. His BS was 105 prior to the meal. Thought maybe it was a fluke. He ate 1/4 a sandwich with meat and cheese, had a few sips of Dr Pepper, and some apple. His blood sugar was 453. Yep. Hello admittance anyone? To top it all off, we have NO money until Friday. No way to eat. Oh well.

We did another pee strip on him before leaving, and it was pretty much normal.  Maybe some white blood cells spilling.  His Ketones might be a tiny amount elevated, it's not really the neg color and it's not really the +small color.

The Mountain was out today....  huge and glorious.

FACEBOOK UPDATE: We are at the ER now, been here about hour and a half or so ... Talked to the Nurse, talked to the DR, repeated the story 10 times or so for various people.... Nathan doesn't feel sick, so the thought of an IV sent him over the edge, and he had a major kicking and screaming melt down. He was yelling for DB to "put me down" and it killed me, broke my heart, I almost started crying. I am praying that our tests were all wrong and this isn't true, that this isn't a reality ... I want this NOT TO BE TRUE so bad.... so we finally got him to do his breathing for the IV, she got it placed, but it was a hard placement and she managed to get blood out of it before it blew up like a tiny little balloon. Right now he's escaping into the land of youtube on my phone. It's about all I can do for him right now to help him. DB and I are so very much on edge right now. We just want them to come in and say the jokes on us and we can go home.

We were put in this room, with the Octopus on the door.  He had an Octopus on his shirt too! LOL

FACEBOOK UPDATE: We are at the ER now, been here about hour and a half or so ... Talked to the Nurse, talked to the DR, repeated the story 10 times or so for various people.... Nathan doesn't feel sick, so the thought of an IV sent him over the edge, and he had a major kicking and screaming melt down. He was yelling for DB to "put me down" and it killed me, broke my heart, I almost started crying. I am praying that our tests were all wrong and this isn't true, that this isn't a reality ... I want this NOT TO BE TRUE so bad.... so we finally got him to do his breathing for the IV, she got it placed, but it was a hard placement and she managed to get blood out of it before it blew up like a tiny little balloon. Right now he's escaping into the land of youtube on my phone. It's about all I can do for him right now to help him. DB and I are so very much on edge right now. We just want them to come in and say the jokes on us and we can go home.

Child Life brought in an iPad for him to watch while they were trying to place the IV ...  then they let him watch it for a little bit....  and they took it away.  LOL.  So he ended up watching Youtube on my phone.

FACEBOOK UPDATE: Thank the STARS we're going home! Tests showed absolutely no signs of diabetes!!! Whew. This is definitely one thing we didn't want him to have. She said "maybe the meter was off?" Maybe - but Dennis took his blood sugar right after Nathan's and it was fine. But WHEW... WHEW... WHEW!

He was totally mesmerized by this bubble wall.  This is in the waiting room of the ER in Tacoma.  Could have watched that all night probably!  I did a video of it too.  That'll be up on our Youtube Channel soon.

Finally headed home.  Goodbye Tacoma...  hello Peninsula!

Got home, we had lasagna, and we all went to bed.  Oye.    Exhausted.

Genetics Appt. No RSS & Diabetes?

Made it to the Genetic's appt.  We haven't seen them in 2 years.  Last time we saw them, they said 2 years unless something changed.  I made a 1 year appointment anyway - and ended up canceling it.  Then I made one earlier this year, and ended up missing it because someone was sick.  So I'm glad that we made it today.

Here is Nathan and Noah in the waiting room.

So the appointment went well - and wasn't EXACTLY what I had expected.

So Noah went first.  Dr. G was rather impressed with him and his progress.   He says that Noah's muscle issues are due to his MT16 because his brain wasn't formed right in utero - it formed different - and because of that his brain isn't communicating with his muscles correctly.  So this is something that he's going to have to deal with for the rest of his life.  He also said that Noah will have to be dependent on someone for the rest of his life - which I hope that isn't true, but it's something that we've been planning on anyway.  Noah is still small for his age.  He was 91 lbs and 59 inches.  Looking at the chart online - I think he's around 15% on the chart for his age for weight. And about 11% for height.

Using this Children's Growth Chart Percentiles Calculator - this is what it told me.

At 13 years and 5 months:

your child is 91 pounds, and that is
at the 20th percentile for weight.

your child is 59 inches, and that is
at the 11st percentile for height

Back to the muscle issue, he says he's doing really well with what he's got and was rather surprised with how much strength he can put out there.  He was impressed with the homeschooling and the progress he's made in the last couple years.  Even though he is still unbelievably behind, we are making progress.  Slow and Steady.

The other thing we had to discuss was Noah's "dirty neck syndrome"  ....  he has this perpetual dirty neck and no matter how much I scrub, I can't get it off - I keep nagging him about it.  Turns out it's a syndrome that can point to pre-diabetes.  It's common in obese kids (people) and those who are pre-diabetic or diabetic.  We checked Noah's sugar today and it was 163 - all he had to drink was one can of 7up and he had a tiny piece of cheese.  That was it.  He didn't really eat until after we got home.  So we're going to check it again in the morning and see what his fasting is.  (Edit: It was 88 for a fasting.  Which is great!!)

Nathan ........ oh Nathan.   So one of the first things he said was "I'm not sure about the Russell Silver Syndrome diagnosis."  ::: smacks my head :::  Really?  REALLY?   This again.  Nathan was diagnosed with RSS in April 2010, it was a clinical diagnosis which most RSS diagnoses are.  I think only about 10% (give or take) are actually genetically confirmed.  Basically - Nathan was diagnosed RSS because he fit the criteria.  But he's never been fully absolutely A-Typical RSS.  So a lot of doctors have made comments about how he doesn't have RSS and they are going to figure out the mystery of Nathan.  Which annoys the piss out of me.  But I guess when it's coming from the Genetic's Doc - who previously agreed with the RSS diagnosis - then I can't be mad.

He says he has some of the facial things, and other physical "symptoms" ... but he doesn't fit well in the RSS box.  That his brain issues are a major concern pointing away from RSS, and all of his speech issues.  So ...  he's thinking it's got to be something else.  It's definitely genetic, but he can't put his finger on anything in particular.    He's doing a carbohydrate deficient transferrin for congenital disorder of glycosylation.  He's also banking DNA and going for a pre-authorization for a Chromosome SNP array analysis.  Which is the newest and greatest in chromosome testing.  He kept calling the tests Nathan had in 2010 as "old fashioned" lol.  I'm like, geez, it wasn't that long ago.   But Dr. G seems pretty confident that it's not RSS now.  So I'm really confused.

Nathan was 42 lbs 44 inches.  He's not even on the charts for his age.  Roger and Dr. G were saying that he's about 50% tile for weight and height for a 5 1/2 year old.   Oye.

Using this Children's Growth Chart Percentiles Calculator - this is what it told me.

At 8 years and 3 months:

your child is 42 pounds, and that is
at less than the 3rd percentile for weight.

your child is 44 inches, and that is
at less than the 3rd percentile for height.

He kept calling me a great mother and that I was doing an amazing job with them.  Makes me feel good.

So here is Noah's Neck.

I guess it's called ACANTHOSIS NIGRICANS ....

I did a home PEE Dip on him tonight too.   He's spilling a TON of blood at the moment.  (He has kidney issues) ...   his Kidney Doc told me that it's not so much the blood - it's more the protein we have to keep an eye on.

His pH was off, Glucose and Ketones and White Blood cells (Leukocytes) were all good ...  Protein was Neg to Trace ...  and his blood in the urine was off the charts.  LOL.   I'm going to have him repeat it tomorrow too.  See how it is.