Monday, September 16, 2013
Will It Always Be Like This?
We can not go home until Keeg's ketones are normal/trace. Last night they were small. We were ecstatic. We were going to get to go home! They were on their way down. This morning though, they were moderate. By lunchtime, they were back to large.
I had some dumb idea I'd catch up on schoolwork (college) today. I'm so far behind. Yet, I've been in meetings since 8am this morning. I just now got done. I've met with case managers, diabetic counselors, nutritionist, endocrinologist, doctor, social workers, and more. I've learned what to do for low sugar and for high sugar. I've practiced how to inject my son with a special needle if he is unconscious and been instructed to call 911 after. (((SCARY))) I've learned about different lancets, needles, and insulin. I'm in information overload.
My son has diabetes. Diabetes can kill.
Diabetes can kill.
My son has diabetes.
This is where I am today. Stuck on the fact that my son has diabetes and that diabetes can kill.
Stuck on the fact that his sugar has elevated to almost 400 despite getting 16 units of insulin and that his ketones are large despite his being on fluids and drinking a ton of water.
My son has diabetes.
Diabetes can kill.
Sunday, September 15, 2013
Roller Coaster
Late last night we got excited. Keeg's ketones had gone from large to moderate. Large is the worst. Normal/Small is what we have to have to go home. Moderate is a step towards that goal. I almost cried I was so excited and logged back in to Facebook to post the info.
Late last night, the full impact of all of this hit me. My 16 year old son, that suffers from immune system issues and has Asperger Syndrome, now has to deal with diabetes. He will always have to watch what he eats, count carbs, and take shots. He will always have to carry his insulin with him. When he gets sick, he'll have to check his ketones. He will, at some point, get tired of the sticks and numbers.....but his life will depend on his doing it. My son is diabetic. It hit me, and I curled up and wondered.....how will we fit this into all the rest of his treatment? How will we afford it? How will I be able to get the things he needs to survive?
I finally found comfort in the words and support of friends, and fell asleep. Somehow, I thought that the worst was over. I mean, we were in the hospital, he was diagnosed, getting insulin and his ketones had dropped. We were on the right path.
However, things were going to change by morning.
Keeg woke early a.m. with a horrible migraine. His sugar was 192......the lowest yet! However, he was so weak, nauseated, and in pain. He couldn't eat all his breakfast and we were worried that we may have given him to much insulin just before he ate. Insulin is measured based on the carbs he eats, and he didn't finish his meal. We checked his sugar and it was 242. Even with his insulin and barely eating anything, his sugar had gone up. He was given Ibuprofen. I curled up in bed beside him and held his hand. I laid a washcloth over his eyes to block out the light. He was in pain, and there was nothing I could do.
We both fell asleep, laying in his hospital bed. At 11:10am we woke. His headache was gone, his sugar was up. He went to the bathroom and the nurse checked his ketones. They were back to large. I sat stunned. We were on our way down, how could they now be large again? Would we ever get to go home?
Then, people begin to arrive. Keeg's brother and sister came to hang out. About an hour later his grandparents showed up. Then his friend Amanda came. Everyone had fun hanging out, playing games, and just chilling. We talked about diabetes and what we had learned. We discussed different treatment plans that my dad had, and how others they knew managed theirs. Although the topic of conversation was different, everything else seemed........ NORMAL.
Everyone has gone home now. Keeg is settled into his bed with a PS2. He's talking to his best friend Matthew while he plays video games. His energy level is better. It's almost time for his nightly dose of Lantas, a long acting insulin. They are increasing it tonight based on his morning episode as well as his last two nights breaking out in a sweat and feeling like he was going to be sick.
They may also be increasing his Novolog insulin, which is the immediate acting. We're learning alot, but there is still so much more we need to know.
Today has been a roller coaster for sure!
Saturday, September 14, 2013
Oh Crap!!! A Grocery Store Trip!!!!
This evening I headed to the grocery store to get some snacks for Keeg. How hard can it be? Grab a few carb free snacks for a child so he doesn't have to take insulin with his snacks. Easy, right?
**************NO**************
It was NOT easy! I couldn't find anything! I finally came back with some cheese and packs of Crystal Light!
I thought I was overwhelmed before. Now though, the full realization of how difficult shopping is going to be has hit me. It seems meat and veggies are the only thing he can have. He does have to have carbs, and the goal is no more than 70 grams (5 servings) per meal.
I'm sure we'll figure it out, but there is quite a learning curve here.
****feeling overwhelmed, under-educated, and frightened
Labels:
diabetes,
diabetic shopping,
juvenile diabetes,
keytones
OVERWHELMED
Keytones
Long Acting Insulin
Sliding Scale
Carb Count
Insulin Pump
Glucometer
**********
So many things to learn. I feel like an entire college course has been dumped in my lap with a "learn this now".
A nutritionist and endocrinologist will be coming to visit us today. We'll learn more about juvenile diabetes and how to manage it. We'll learn whether he will qualify for an insulin pump. We'll learn how our diets are going to change. I say "our" because myself and my other two children will support him by altering our own eating habits.
I'm scared. He already has so many other health issues. His keytones are staying large even though we've got his sugar down to 225. Health issues are said to cause sugars and keytones to spike. Does this mean each time his immune system goes haywire that we're looking at sugar battles as well?
Keeg cried last night. It was all just to much to take in. He couldn't order enough food to fill him up. With his sugar so high, he had to keep carbs low. Eggs seem to be the bulk of the menu, but he can't eat eggs due to allergies. He can have them baked in foods, but those foods are all high in carbs anyway. Scrambled, boiled....those eggs he can't have. It was frustrating to say the least.
Add to that the hospital listed eggs as an allergy, excluding him from ordering any food that contains eggs..... he's about to go crazy. I have to order his plates and swap with him so he can eat what he wants. Soooo annoying.
Yet, in the scheme of things, he's alive. We caught it early. His ph level was just high enough to keep him out of PICU. Things could have been a lot worse. Thanking God that they weren't.
We still have a long journey ahead. There is so much to learn. We still have to get through the visits with his other specialist for the return and flare of his immune system issues and his P.A.N.D.A.S.
We're a team...my family. We'll make it though this.
Long Acting Insulin
Sliding Scale
Carb Count
Insulin Pump
Glucometer
**********
So many things to learn. I feel like an entire college course has been dumped in my lap with a "learn this now".
A nutritionist and endocrinologist will be coming to visit us today. We'll learn more about juvenile diabetes and how to manage it. We'll learn whether he will qualify for an insulin pump. We'll learn how our diets are going to change. I say "our" because myself and my other two children will support him by altering our own eating habits.
I'm scared. He already has so many other health issues. His keytones are staying large even though we've got his sugar down to 225. Health issues are said to cause sugars and keytones to spike. Does this mean each time his immune system goes haywire that we're looking at sugar battles as well?
Keeg cried last night. It was all just to much to take in. He couldn't order enough food to fill him up. With his sugar so high, he had to keep carbs low. Eggs seem to be the bulk of the menu, but he can't eat eggs due to allergies. He can have them baked in foods, but those foods are all high in carbs anyway. Scrambled, boiled....those eggs he can't have. It was frustrating to say the least.
Add to that the hospital listed eggs as an allergy, excluding him from ordering any food that contains eggs..... he's about to go crazy. I have to order his plates and swap with him so he can eat what he wants. Soooo annoying.
Yet, in the scheme of things, he's alive. We caught it early. His ph level was just high enough to keep him out of PICU. Things could have been a lot worse. Thanking God that they weren't.
We still have a long journey ahead. There is so much to learn. We still have to get through the visits with his other specialist for the return and flare of his immune system issues and his P.A.N.D.A.S.
We're a team...my family. We'll make it though this.
Labels:
carb count,
diabetes,
diabetic,
glucometer,
insulin,
insulin pump,
juvenile diabetes,
keytones,
Type 1
Friday, September 13, 2013
Here We Go Again.......
It's been quite some time since I've blogged here. I was almost scared to write about how good Keeg seemed to be doing. How, deep down, I hoped that he was somehow miraculously cured and wouldn't be sick anymore. I didn't want to voice my hopes, as I felt somehow that it would cause the fall to be so much worse if it happened.
Yet, I did secretly hope. Recently I even started talking about the "good run" he'd had.
Then it happened.
Several weeks ago, he started to feel tired. Then weak. It has gradually gotten worse. His tics came back. He started to lose focus. He couldn't participate in any physical activity. He wanted to stay at home when I'd go somewhere.
The beast was back. That awful, unnamed immune system disorder that wrecks havoc on his body and leaves him in bed for weeks, or months. He became pale. He started having trouble swallowing and chewing.
Yet, in the last week I noticed a significant change. Something we had not encountered before. Keeg become severely thirsty. He chugged and chugged and chugged water to the point I was worried he was going to have water toxicity. No matter how much he drank, he still appeared dehydrated and thirsty. His lips were dry, his skin dry, and nothing seemed to help.
I knew that he was looking at an in hospital stay soon with his immune system short circuiting again. However, when our family doctor walked in and told me that he needed to go to the hospital immediately, I was dumbstruck. The she said it, "He has juvenile diabetes". I couldn't say anything at first, then croaked out, "How high?". When she told us 486, I felt the room spin. How could my 16 year old son have a sugar level of 486? How could he have diabetes? It runs in our family, but not juvenile onset!
We are sitting in the ER still now. It's been 7 hours and we've only got his sugar down to 309. We'll be admitted to a room on the pediatric floor later, but for now the focus is getting his sugar to go down.
We are embarking on a long journey. One of learning how to manage diets, count carbs, watch sugar, and take insulin. I know it won't be easy, and I can only imagine the changes that will need to take place.
In the midst of this diagnosis, we still have to deal with the fact that his immune system has flared.
What dynamics are added when an Aspie is diagnosed with Diabetes? Will his Asperger Syndrome result in more issues? Will he be able to manage his Diabetes?
Please, keep him in your prayers.
Yet, I did secretly hope. Recently I even started talking about the "good run" he'd had.
Then it happened.
Several weeks ago, he started to feel tired. Then weak. It has gradually gotten worse. His tics came back. He started to lose focus. He couldn't participate in any physical activity. He wanted to stay at home when I'd go somewhere.
The beast was back. That awful, unnamed immune system disorder that wrecks havoc on his body and leaves him in bed for weeks, or months. He became pale. He started having trouble swallowing and chewing.
Yet, in the last week I noticed a significant change. Something we had not encountered before. Keeg become severely thirsty. He chugged and chugged and chugged water to the point I was worried he was going to have water toxicity. No matter how much he drank, he still appeared dehydrated and thirsty. His lips were dry, his skin dry, and nothing seemed to help.
I knew that he was looking at an in hospital stay soon with his immune system short circuiting again. However, when our family doctor walked in and told me that he needed to go to the hospital immediately, I was dumbstruck. The she said it, "He has juvenile diabetes". I couldn't say anything at first, then croaked out, "How high?". When she told us 486, I felt the room spin. How could my 16 year old son have a sugar level of 486? How could he have diabetes? It runs in our family, but not juvenile onset!
We are sitting in the ER still now. It's been 7 hours and we've only got his sugar down to 309. We'll be admitted to a room on the pediatric floor later, but for now the focus is getting his sugar to go down.
We are embarking on a long journey. One of learning how to manage diets, count carbs, watch sugar, and take insulin. I know it won't be easy, and I can only imagine the changes that will need to take place.
In the midst of this diagnosis, we still have to deal with the fact that his immune system has flared.
What dynamics are added when an Aspie is diagnosed with Diabetes? Will his Asperger Syndrome result in more issues? Will he be able to manage his Diabetes?
Please, keep him in your prayers.
Tuesday, February 26, 2013
Asperger Syndrome Suicide
You wake on a typical weekend morning.
Your children are sleeping as you prepare breakfast. At 8:30am you
head upstairs to check in on your 14 year old son. A child with a
huge heart and beautiful smile, your heart breaks for him often. He
has Asperger Syndrome and struggles with the feelings that come from
not being accepted by your peers. He is very intelligent, which only
seems to fuel the problem. Even adults look at him, and due to his
intelligence, expect more from him then he is capable of. How do you
explain to a child that only things logically, that the reason people
shun him, or get frustrated with him, is simply because he is
different? There is no logic in that, yet it is the simple truth,
unfair that it may be.
These thoughts bombard you as you
slowly walk up the stairs, wondering what today might be and how you
will be able to help your son. You open the door as you call softly
to him to wake up. With a start you realize that he isn't in bed. You
step back into the hallway, figuring he was in the bathroom, or maybe
downstairs somewhere. You call for him several times, with no answer.
You aren't really worried. It's not
uncommon for your son to get up and go walking. It helps to soothe
him, comfort him. You hope he grabbed something for breakfast before
he left. He's struggled so much lately, he doesn't understand why
people treat him the way they do. He doesn't understand why the world
is so different then what he can understand or relate to. As you head
back into the kitchen, you pray again the prayer you've said so many
times, “Please God, help me find a way to help my son”.
Your laptop is sitting on the table.
You slide it over to you and post a quick comment on Facebook, asking
anyone that may know where your son is to get in touch with you as
soon as possible.
The hours tick away and you still
haven't heard anything. Your son doesn't typically stay gone for this
long, and you are starting to worry. You've had this nagging feeling
that something isn't quite right ever since you discovered that he
wasn't in bed this morning. You've been shoving it aside, but now
your starting to wonder if you should pay more attention to it.
An associate from work calls you. It's
doubtful she's heard that you posted on Facebook asking for info on
your son's whereabouts, and you don't really want to get into it on
the phone with her. You answer the phone, and in a style true to her,
she starts babbling about traffic being backed up on the interstate.
She is talking over excitedly and very fast. To fast for your ever
growing stressed emotions to keep up with. You vaguely hear her tell
you how traffic was stopped because of a body found on the side of
the road, and how it'd been there for hours before anyone bothered to
call 911. You finally tell her that it's been a very bad morning for
you, and that you have to get off the phone.
No sooner have you hung up your phone
then panic seizes you. Didn't your friend from work just say that the
body found had red hair? Surely she'd have said it was a teenager or
a child if it was your son. But, she said it had been there for
hours....hours! Oh no, she also said it was near where you live! That
can't be your son. Oh please Dear God, don't let that be your son.
You quickly snatch the phone back up
and call the local police department. You explain that your son, your
son that has red hair, is missing. Your transferred to an officer,
who asks you a ton of questions and then quietly tells you that two
officers are already in route to your home to get a statement.
There is a knock at the door. You
didn't hear the car pull up over the phone conversation. You quickly
run to the door and yank it open. As your mind registers that it is
two police officers, you stand on your tip toes to look over their
shoulder, praying that your son is standing behind them.
The tallest of the two officers look at
you with pity and an emotion that can only be sadness as he asks you
to step inside and find a seat. This can't be happening! Something is
wrong! Where is your son? That body on the side of the interstate can
not be your son!
You listen to the officers' words, as
if you are detached and standing a few feet away from yourself. It
seems that your son is the “body” that your friend told you
about. The police haven't pieced it all together yet, but it appears
that your son jumped from the bridge that goes across the interstate
at around 3:30am. He was hit by a tractor trailer. Through the next
several hours, until sometime in the afternoon, traffic went on as
usual. People noticed what appeared to be a “large animal in a pile
of clothes” but didn't have time to report it. Others thought it
was a body, but again were to busy to pick up their cell phones and
call 911, much less turn around to check. It wasn't until afternoon
that someone stopped and called 911 to let them know that a body was
on the side of the interstate, where it had lain since
3:30am.....alone and hit by several vehicles. The clothing matches up
to your son's clothing. There isn't any reason to do an
identification, the police will use medical means to finalize that it
really is your son. The police are certain it is suicide.
The next day, our best friend stops by
to let you know that the story was in the newspaper again. This time
the article states that the body that held up traffic for hours was a
14 year old that committed suicide. At the very bottom of the
article, almost as an afterthought, it reads, “the teen was taking
regular medication for Asperger's Syndrome and autism”. You look at
her incredulously. Your son committed suicide due to the challenges,
and lack of treatment, he faced having Asperger Syndrome, and it was
only mentioned at the very bottom of the article as an afterthought?
A Sargent said that your son was taking medication for Asperger
Syndrome when there are no medications available to treat it, as if
it's something that requires a magic cure? Why wasn't it mentioned
that your son being treated like an outcast and different, not just
from his peers but from adults, impacted him daily? Why didn't the
article talk about how tons of parents around the country are finding
themselves without the resources or tools necessary to help their
children? Why didn't the article list the few available resources for
this area? Why didn't it reach out to other families going through
something similar, other families that every day fear their teen with
Asperger Syndrome might also commit suicide?
* * * * * * * * * * * * * * * * * * * *
* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
I wish I could say that I just made up
this story. However, I am saddened beyond words to say that I didn't.
This happened here over the last few days. As a mother frantically
searched for her beloved 14 year old son, motorist to busy to call
911 were driving by his battered and tattered body.
A newspaper quoted Sgt. G.A. Barger of
the North Carolina State Patrol as stating that the child was taking
medication for his “Asperger Syndrome and Autism”. To date, there
are no medications available to treat Asperger Syndrome. There is no
cure for Autism, and many parents advocate that a cure isn't needed,
merely the perception of “typical” people to change.
People have already started to judge. A
mother states that she has a child with Asperger's and she doesn't
understand why the article mentions it at all as her son is “bright
and a joy to be around”. She wonders what Asperger Syndrome has to
do with his suicide, or any other news article that has mentioned it
recently. Another mentions medications and how they only “make
things worse”. Another poster states that anyone with Asperger
Syndrome wouldn't want that for the rest of their lives. Yet another
newspaper article states that the child “suffered with
Asperger Syndrome”.
There are so many things I want to say.
I want to scream that children with Asperger Syndrome wouldn't suffer
if it weren't for the judgements, criticizing, and mistreatment from
“typical” people. I want to scream that there is not a medication
for Asperger Syndrome. I want to scream that Dan Akroyd, Bill Gates,
Daryl Hannah, Satoshi Tajiri, James Durbin, Paula Hamilton, Peter
Howson, Clay Marzo, Les Murray and others all have Asperger Syndrome.
There are so many more, Al Gore, James Taylor, Bob Dylan, Robin
Williams, Andy Kaufman, Hans Asperger, isaac Asimove and more. Do
they seem to “suffer”, need “medication”, or need a cure? I
want to scream that popular belief feel that Abraham Lincoln, Bobby
Fischer, Benjamin Franklin, Marilyn Monroe, Henry Ford, Isaac Newton,
Jane Austen, Vincent Van Gogh, and Virginia Woolf all had Asperger
Syndrome. How can all these people be broken and need a “cure”?
How can all these people not want to live simply because of their
diagnosis?
I want to scream at the world that I am
the mother of the sweetest, kindest, most caring teenage son. I want
to scream how his intelligence level is through the roof, but how he
lacks an understanding of social concepts. I want to scream out how
he tries to engage his peers in conversation, but the “typical”
teens shun him simply because he is different and different isn't
“cool”. I want to scream at the world that different is not bad
or wrong.
Yet, instead I will stand here and
speak for the family that is to grief stricken to speak for
themselves. I will stand and say that my son has Asperger Syndrome
and that his life has been difficult. I will stand and speak out and
let others know that my son's life, and the life of other teens with
Asperger Syndrome, is difficult because others refuse to accept
different as being acceptable. I will stand and tell others that you
can not say you are scared of someone with Asperger Syndrome because
of what one child with Asperger Syndrome did months ago, but instead
you should stand up and help find a way for these children to have
available the resources they need to help them succeed.
I am the mother of a child with
Asperger Syndrome.
I am proud to be the mother of a child
with Asperger Syndrome.
I support ALL parents of children with
special needs.
I won't ever quit speaking up for my
children's needs.
Always remember, if you've met one
child with Autism, then you've met ONE child with Autism. No two
children on the Autistic spectrum are alike, no two children with
Asperger Syndrome are alike. One thing they all share though,
resources are not available to help them reach their full potential.
Nor do they experience the acceptance in society that they should.
Please, don't be one of the passive
people that sit by and judge and criticize. Stand up today and speak
out.
For resources regarding Autism Spectrum
Disorder, you can follow the links below:
Autism Speaks Social Network for on-line chats with other parents in similar situations. Some use it to pose a specific question and get feedback, while others utilize it as a support group.
Autism Speaks Tool Kits http://www.autismspeaks.org/family-services/tool-kits
Autism Speaks Family Services web link - http://www.autismspeaks.org/family-services
Other Resources:
http://www.yourlittleprofessor.com/friendship.html
http://www.yourlittleprofessor.com/teen.html
http://teenautism.com/category/puberty/
http://www.aspires-relationships.com/. It seems to have a wide variety of resources that may be helpful.
There is an excellent online support group called GRASP – The Global & Regional Asperger’s Syndrome Partnership. http://grasp.org/page/grasp-support-groups.
You can contact me at any time for questions, support, or information at pathsfrommysoul@gmail.com
Monday, March 5, 2012
Light it up Blue for Autism
"In celebration of World Autism Awareness Day on April 2, Autism Speaks will again seek to turn the world blue. Our third annual Light It Up Blue initiative is fully underway with over 350 buildings already committed to turning blue.
Among the landmarks that will be turning blue on April 2, 2012 are Rockefeller Center, Top of the Rock Observation Deck and Madison Square Garden in New York City, Hôtel de Ville in Paris, France, the famous Tokyo Tower in Japan and Canada’s CN Tower, the Sydney Opera House in Australia and Michigan’s Mackinac Bridge.
Visit our website to learn how to participate and check back in early March to LightItUpBlue.org to register your events and see a full list of participating buildings.
Last year we had over 2000 buildings and landmarks turn blue. With your help, in 2012 we will more than double that number!!" (taken from http://blog.autismspeaks.org/2012/02/22/liub-2012-kickoff/)
Lowes has blue bulbs available. Please stop by to get your blue bulbs and light up your own home to raise awareness for Autism. Thank you. 
Labels:
autism,
autism spectrum,
awareness,
blue,
blue bulbs,
light it up blue,
lowes
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