Tag: child

Please Send Me a Picture of Your Child in the Hospital

Posted on | by tomkarlya | 1 Comment on Please Send Me a Picture of Your Child in the Hospital

 

There are not many things I’m 100% sure of, really, very few.

My title of this post was to gauge your first reaction.  Of course I would NEVER want a picture of your child laying in a hospital bed, and for the life of me I cannot understand how anyone would post one.

Seriously, when you read the title did you think I had lost my mind?   Why on earth would I ask for such a picture, truth is, I wouldn’t and I never will.  More to the truth is seeing one is not something I care to do either.

PLEASE do me a favor, if you are one of those people who think we have any interest of seeing your child laying in a hospital bed, fight the urge with every ounce of energy; wait until they are better and post a picture of you child doing something wonderful.

We need to celebrate everything our kids actually do……..seeing them in a hospital bed accomplishes nothing constructive.  I just DO NOT see the point and I am 100% sure your child is not in favor of it either; especially a teenager.

If you need prayers, good wishes, and/or hope; absolutely ask away but posting a picture really does not make ANY sense to me……….but I am always willing to learn if you want to state otherwise.

I am a diabetesdad.

 

Newly DX–Large Keytones–Vomiting–Over 420–What do I do?

Posted on | by tomkarlya | 3 Comments on Newly DX–Large Keytones–Vomiting–Over 420–What do I do?

 

I saw this post recently.

I was astounded reading through the many responses of the people who were trying to help this poor mother.

I get it.  We want to help.

But the only acceptable answer is to get in touch with your medical team ASAP and you need to do it now.   Answers as in: This happened to my child and I…….; What you need to do is give your child……; Get used to this, here is what you need to do….; are just completely unacceptable.

If we are all in agreement that diabetes can be followed minute by minute from one day to the next with completely different results with our own lives; what makes anyone at all sure that the way diabetes impacts your child is the same way diabetes will impact another?

There is no thin line to be walked here.  When it comes to medical advice about how diabetes plays a role in anyone’s life—-it is never a substitute for the only correct answer: Contact your doctor NOW.

It happened again when another parent thought their child without diabetes ‘tested high’.  One person actually wrote that they wouldn’t worry about it as even people without diabetes will spike.  Really?  I’m glad we didn’t listen to that advice or my second child diagnosed may not have been around to tell the story.  In as much as that may be true in MANY cases it is not an absolute.  If someone is concerned about anything regarding their child the only acceptable advice is, “make an appointment and find out.”

Even if it is ‘inconclusive results’, it is still better than someone else’s ‘guess’ from miles away with an online post, don’t you agree?  What if that parent said; “Oh good, I can relax”, and they do not make an appointment and within 24 hours they are in ketoacidosis at a hospital…….do you REALLY want that on your conscience?

I am not talking about good sound advice from experience such as which pump you like and why; or what to do at a party so your child feels included; or any other of the millions of questions we all have pertaining to diabetes;  the experience of others is invaluable.

But anytime there is a medical question we all need to get in the habit of saying/answering online, “…….here is my experience with this and it may differ greatly from yours (state what you know); get your medical professional involved now to be sure because I’m not a Doctor and your child needs a medical opinion with this situation ASAP.”

The best advice is getting people to those who can render a professional opinion…..anything else is Russian Roulette. In most cases, maybe even 99%, given advice may be correct.  If you would not take a 1% chance with your child….do not take the chance with someone else.  Medical professionals should be the only ones giving medical advice.  Period.

I’m a Diabetesdad

Diaversary……#20…….Really?

Posted on | by tomkarlya | 8 Comments on Diaversary……#20…….Really?

  

It’s today. 

 Twenty years ago.

 Today.

 Sigh.

 It’s not ‘Happy’ Diaversary….it’s just there; a milestone. Twenty years today.

 As I think back to that September 26th 1992, when at the age of 2 Kaitlyn was whisked to Stony Brook Hospital; medical staff ran around tending to her; tubes were attached; pain was administered; tears were shed; more tears were shed; I raced from New York City; I entered her room; she looked at everything attached to her; I pushed the hair out of her eyes, and I spoke:

 “Hi Honey.”

 Looking at all the wires and the tubes, “Daddy?”

 “Yes honey.”

 Looking straight into my eyes: “Fix.”

 More tears were shed. 

 Our lives would change……..forever.

I promised her that I would not stop until a cure was found.  I told her, as the song from Broadway’s Shenandoah states, “Pappa would make it all right.”

And we have tried.  We are more determined now than ever before.  We’re more convinced than ever that my promise to Kaitlyn will be fulfilled.  I have met the most incredible people on this journey.  Too many to start to thank, or even name.  I thank you all. 

But on this, the 20th Diaversary of Kaitlyn’s diagnosis, I need to thank someone.  I promised her once that I would leave her out of my writings because she hates reading about herself.  But on this date I need to be a bit off the norm, as they say.

I will keep it real simple but it is the most powerful statement I have ever issued.  In as much as I (and yes with a biased) think Kaitlyn and Rob are truly so remarkable, I am one thousand percent convinced that my daughter is alive today with no complications, and Rob is doing as well as he is, because of my wife, their mom; Jill.  She did it right and continues to get it right 24/7/365.   She will tell you otherwise, but that is how she operates.

The gift of a child’s well being is probably the most precious gift any parent could ever have and the reason in our house is Jill, and I thank her from the bottom of my heart. Period.

I know because, you see, I’m the Diabetesdad.

 

 

My Child, When Low….Will Wake up…..Right? Um…..Not Necessarily.

Posted on | by tomkarlya | 41 Comments on My Child, When Low….Will Wake up…..Right? Um…..Not Necessarily.

I had the opportunity to hear Jeff Hitchcock present this weekend and he addressed night-time testing and the ‘thought’ that our kids wake up when they feel low.

It is thought by many (us…..definitely) that should our kids start to feel low while they sleep they wake up.  I know for me it was a fore-gone conclusion because Kaitlyn has done it most of her life.

Does it turnout that we were merely fortunate?

A study from the University of Luebeck in Germany tested 16 nonT1 patients and 16 with T1 diabetes.  During the control time none of the patients awoke.  In the test of the two groups presented with hypoglycemia; 10 patient in the healthy group awoke when presented with hypoglycemia while only 1 in the group with T1…….

Conclusions: A fall in plasma glucose to 2.2 mmol/l (40 mg/dl) provokes an awakening response in most healthy control participants, but this response is impaired in T1DM patients. … Failure to awaken increases the risk for T1DM patients to suffer prolonged and potentially fatal hypoglycemia. ***

How conclusive is this study?

Well given it is not a huge sample; but it is enough for me to know that either by CGM or testing in the middle of the night is something we probably should all be doing more; and not merely depending on our child, and/or loved one, to merely awake on their own.

This is not written to scare anyone but numbers are numbers and it is a tool/guide/reference for us to consider as we work through the daily management of diabetes.

It has always been just accepted that Kaitlyn and Rob would just wake up when they are low…..this study paints a different picture albeit a small sample group.  That said; until such time that someone tells or shows me differently–we will no longer JUST ASSUME they will wake up when low.

Granted that other factors may play a role if we choose to wake up and test them in the middle of the night or not–but one of those factors, which will be removed in our house, is the 100% belief they will just wake up.  How about you?

I am a Diabetesdad.

Editor’s note: My point here is we probably should not merely 100% accept that every time PWDs go severely low in the middle of the night—they will just wake up. 

 

***Bernd Schultes, Hamila Jaich-Chara; Eva Reiprich; Werner Kern; Alchim Peters; Herst L. Fehm –Department of Internal Medicine University of Luebeck, Luebeck Germany
Steffan Gais; Manfred Hallschmig; Jan Born-Department of Neuroendocrinology; University of Luebeck, Luebeck Germany
Kerstin M. Oltmanns- Department of Psychiatry & Psychotherapy; University of Luebeck, Luebeck Germany
Emails may be directed to: Schultes@kfg.uni-luebeck.de