I was doing ok...or so I thought

So six days ago I had a 10 year old son who was normal, everything was going well, and we were rushing from place to place. I work full time, I'm a full time student coming up to my student teaching, and all of a sudden I find myself at Children's Hospital with my son. My son has type 1 diabites and hypothyroidsm. What?? Your kidding... and everything changes... I was doing pretty good until today. I struggled with breakfast and lunch and then dinner came. I feel like i've been cooking all day, two meals every single meal because i can't figure out how to seperate the carbs so i don't miss something unless i make his then everyone elses. We are still testing at 2am, to double check the lantis, and I can't seem to get back to sleep, so i've been staying up till 11 sleeping till 2 and then being awake all night. I'm exhausted and Its all hitting me now. Is this how life will be? Cook...clean...cook...clean...cook...clean and blood sugar tests and injections change this pen needle, change the lancer, test this look this up how many carbs are in this and how much... all the numbers ratios and correction factors, and everything... I have to go back to work in a week, back to working 40 hours a week, full time student, wife and mom... and i'm already overwhelmed. I know everyone just says breathe and ask for help when you need it, but I just don't understand why this had to happen... Life was just getting close to getting easier for us. We bought our house (it's paid off) and moved out of this horrible neighborhood that was stressing my life, I went back to school and am getting close to graduation, my hubby and I were able to transfer our jobs closer to home no more 3 hour commutes, and we actually were getting to where we weren't broke.... and now, 500 dollars in medication later... I guess i just need to vent a bit and hope that someone out there knows the feeling, everyone in my family keeps saying... it will be ok, which i am sure it will be, but he's my son, my only son, and it just sucks...

I haven't been much of a "responder" on the forum but your paragraph tugged at my heart. I don't have the experience of a child with Type1 as I am adult that was diagnosed 5 months ago.But I can empathize with the feeling of being overwhelmed when trying to manage this disease. Food, checking BG's, and fear of basically uncharted waters.  Everyday seems different, but everyday you learn and retain more information....what types of foods work, what doesn't. It definitely takes time (took me a month to figure out how to eat toast without going crazy high). I'm not sure if you eligible (insurance wise) for a pump but down the road that would make things a lot easier and streamlined. Don't be afraid to ask for help....if you live in the Southwest region of the country I'll help you. And most importantly stay strong....I have to tell myself this everyday. Hang in there and it sounds like you are already doing an amazing job with your son.

Hand most of the care off the him, he is the one that will live with diabetes and he must learn these things before he needs them in the real world.  This  won't be easy, but being diabetic is never easy, you would be doing him a dis service by not letting him handle the day to day issues that face diabetics every day. Good educator will be important (they didn't have those when I started out) but someone that can meet and show personal interest and time. You must remember that you have a monitoring roll and not the control roll, which I think he is very lucky to have a monitor - I never had that. It took 3 days to get a blood sugar back from the doctor and there were no diabetic doctors back then. My point is - if he is not the one controlling his diabetes then it is not being controlled at all. No matter how much you hate to see this, that is something all of us have faced, to kiss it and make it better does not work either. Lots of good information on this site - take advantage of all that you can and let him do more, it's his diabetes.

44 yrs T1 - Dx12 - 1971.

Right now everything about this is so new to you and it is very frustrating to deal with, I can't imagine having a young diabetic child. But with time and education it does get a lot easier!!! Carb counting will become second nature to him along with adjusting insulin. It all just takes time and like Jeff said in his post, a good diabetes educator will help out greatly! As for the medication, I know that some companies that manufacture insulin have compassionate use programs so that you do not have to pay full price and sometimes will even provide it free of cost. Eli Lilly is the only company that I can think of off hand that does, I heard that Novo Nordisk also does have a program but are a bit more sticky with theirs. Some of the insulin pump companies also used to have some sort of compassionate use programs, but lately it seems I am unable to find any information on those programs.

It is extremely overwhelming to suddenly have a diagnosis of T1 in your child, but I can honestly say that it will get easier.  My daughter was 9 when she was diagnosed a little more than a year ago.  The first couple of months were really difficult -- so many emotions to deal with, along with a very steep learning curve and an increased work load.  I quit my full time job (one I hated) to care for her.  I know not everyone has that luxury.  We had to make some sacrifices for me to be home, but I do plan to find work again this fall.  

It is hard to wrap your head around all the changes, but I promise you won't just be cooking, cleaning and carb counting.  I, too, was making a separate meal for her at first, until I found a couple of on-line recipe analyzers.  One is with the Canadian Registered Dietitians website www.dietitians.ca/.../Recipe-Analyzer.aspx.  It might help you.  A food scale is also a great tool that makes measurements quicker.

You will find when he is more balanced that the night-time checks will be fewer, except in times of illness.  It is very tiring at times.  I felt like I had gone back to the "baby" days where you always feel drained, as if some of my independence had been stripped away again.

My daughter also has an insulin pump now which makes many aspects of diabetes management a lot simpler, still time-consuming, just simpler.  Meal times are quicker.  Now, she is very self-sufficient with her diabetes management.  I oversee what she does and guide her when need be.  When she isn't feeling well, I take over her care.

Don't "dump" the full management of diabetes onto him immediately.  You will find when he has accepted T1 as a fact of his life, he will naturally begin to help care for himself.  After all, children are curious and want their independence.  I am constantly surprised by how much my daughter remembers.

If you need to vent, email me:  marge_flanders2@hotmail.com.  I had no one to vent to who understood and didn't find this site until a couple of months ago.

It will get easier to cope.

Shandra

PLEASE PLEASE READ.!!!!  I FEEL LIKE I CAN HELP

Okay Mom, not sure where to start but let me first say my son was also diagnosed at age 10 years old.  He is now 17 and let me first tell you, IT DOES GET EASIER.  I am so sorry to hear about your son b/c as a parent, it kills your soul to see your child endure any pain and suffering but let me assure you, he will be just fine but you are right, it does suck and its upsetting to hear over and over, it will be okay from those who know absolutely nothing about it!

      I do not think you should have your son take over the responsibility of injections yet though, which means a little stress for you at first, but please please believe me that once the initial shock wears off (this is different depending on each person) and you become accustomed to what is necessary for your son's welfare,  you will consider yourself a pro at it and you all will be a stronger family because of it.  I used to ask myself the same questions and would cry in private to where nobody could see but as time went on, I can't say that the pain of watching your child endure such a terrible struggle got any easier but our knowledge and ability to deal with the disease became easier.

    You are probably at the very worst time right now b/c it take awhile to get used to things and how to cook meals, calculate carbs, etc but I know the worst part has to be when your child goes to sleep, wondering if their blood sugar is going to drop so low during sleep or he/she wake up with an unreal high number.  I used to thank God when I would walk into my son's room each morning that he was alive and breathing so please know that I can completely relate.  Let me tell you what you might expect in the days to come.

    This is hard b/c there is so much I want to say as I sense the same feelings in you that I felt so please bare with me.  Mom, you can do this!!!!  God is there every step of the way and will protect your baby.  That is probably the last thing you want to hear b/c most people get angry and blame God and wonder why he would allow this to happen to your baby.  Sweetie, I realized that this was just part of his plan for our lives and you know what, I wasn't far off.  My son now is about to finish school and enter into seminary school and wants to help make a difference in the lives of others.  That may not help but again, let me explain more about our situation in hopes that it will help.

    Again, I was right where you were with all of these questions and fear!  We had three days of training in the hospital for what was a complete life-changing event. I was horrified and scared senseless but knew my son's life depended on ME and my husband. When my son left the hospital, I don't think they had the pens yet and we simply used vials of insulin and syringes, which was a little bit easier for me.  The pens are a bit bulky and to me, hard to administer to him but easier for him to administer to himself.  I did say himself.  Your son will eventually get to where he "wants" to do this for himself. If there is one thing that I have to stress, it is that you as parents, have to listen to what he is saying to you.  For my son, he got sick of the extra attention and the "poor me's" and he "hated" for people to feel sorry for him -it made him feel like less of a person. It seems like most of the children I have talked to with diabetes, simply want the following:

    1.  They want people to listen and understand the difficulties - so often as parents, we TELL them what to do and when, etc. as far as managing the disease.  After they get used to what their role is with the disease, they will do it and you will ??????? them over and over but relax (to an extent).  Nobody knows your child like you do so you may have to pick and choose "together" what is best for him, keeping in mind that as they mature, these roles will shift.  Half of the time now, I don't know how much insulin my son gives himself simply b/c he is so used to counting the carbs by sight (he is a pro!!!!) and giving injections to himself (he started giving his own around age 13) that I trust him b/c he knows his body and he does it correctly.

    2.  They want to feel "normal" like everyone else - This disease is highly heard of now but most of the focus seems to be on type 2 diabetes (commercials, media, etc.).  Why?  Because type 1 is not as common and this used to offend me highly b/c I knew how much my baby boy was hurting and struggling and believe me, in the school system, there are some very ignorant people who often deal with our children.  I use the term ignorant, not to be rude but simply point out that we will have lots of teachers, staff, etc. that treat our child as if they don't have the disease or that they, themselves know more about the disease than our children - um WRONG!  This disease rips something away from our children that they can never get back - their innocence!  They can however get control over the disease but sometimes they don't feel like they are able to control other parts of their lives.  In the school setting, my son felt "different" and felt like he stood out and wanted to mainstream and not have lots of extra attention pointing him out. So when my son wanted to dye his beautiful red hair black, it took awhile but eventually I let him.  Why? because he was so uncomfortable in his skin and something as simple as changing his hair made him feel more secure with himself.  I have had teachers even compare their diabetic dog to my son or tell him, well, so and so was able to come to school today and he has diabetes so you need to make it to class.  Believe me, you will go round and round in the schools and your best friend will soon become the school nurse.  Let me also use the words 504 plan if you haven't heard them already.  

    3.  They want control back of their lives - As parents, we obviously hurt for our child(ren) and we tend to baby them or go overboard b/c we feel bad for them.  This can be really nice for them at first but pay attention to him and know when to take a step back (please don't take it rude - I learned the hard way).  I did this very thing and would stress myself out about it and would stress him the heck out. Again, I was always asking my son if he had eaten, what he had eaten, how much insulin, etc.  It would literally wear him out.  Then he would go to school and have to worry about his blood sugar being to high and not being able to focus in class or waking up with a low blood sugar and not being able to  pick his head up.  My son HATED eating b/c everything he had wrong with him was focused around blood sugars and eating.  I think it truly took any joy out of eating for him.  He is still not a big eater but he loves his dinners.  He also has been on the insulin pens (he will not get a pump and I left that decision up to him) and with this change from the vials to pens, he got a sense of control back b/c he was able then to start giving himself injections with ease.  My son loves his dinner meals but he eats in such a hurry that I don't think he ever enjoys his meals until he goes back for seconds.  :-)  

    4.  They want to "feel" good and not so tired and moody - my son still struggles with fatigue as blood sugars fluctuate but I can tell you that vitamins and limited fried foods have helped this tremendously.  He suffered from depression during the first stages of puberty (that was completely awful by the way) as his blood sugars were up and down but mostly up.  As he has gotten older, they have settled down tremendously and his doctor at Children's actually complimented his ability to manage his blood sugars.  Honestly, the tired feeling they get will probably hang around but again, it can be helped once they realize how to better care for themselves b/c essentially, we as parents are preparing meals and helping with injections but they are the ones that actually do the managing in the long run.

    Honey, I just felt drawn to your message and normally don't read all of them that come through my email but the Lord just told me to open yours.  I will tell you that if I could compare how I felt when my son was 10 to how I feel now with him being 17, well......it has changed significantly.  I am not so overwhelmed because as you will soon find as time goes on, you will get to know your son in a whole new way.  For instance, I can tell when my son's blood sugar is high by his complexion (he tends to get red faced and his pupils get larger).  I can also tell when he is low, especially if he is sleeping b/c of his response.  I know there are times when my son is laying in bed and his blood sugar has dropped rapidly b/c he will open his eyes abruptly when I enter the room.  If it is high, he will sleep like a log.  There are other times when his blood sugar is extremely low and he is up and walking around in the kitchen stuffing a snack in his mouth.  lol  I know that sounds funny probably but again, you know your child better than any doctor or nurse.  The nurse's at the clinic are extremely helpful and call on them whenever you have a problem. Each child is different and you will pick up on his habits, etc.

      I know you are hurting on the inside for your son, as is he and you are exhausted and I wish that I could say that will subside anytime soon but unfortunately, it might take some time until you are comfortable with what you are doing or comfortable with what your son is doing.  Once that happens, I promise, you all will be fine.  Stay involved in groups like this and you know what, if you should need anything at all or just need to scream or cry or need advice, please please feel free to email me or call me even.  My email is kernina75@yahoo.com and my cell number is 501-541-6250.  I PROMISE you it is no bother.  If your son needs someone to talk to, I would be glad to give you my son's number and he can communicate with him.  I won't give that out on here but will should you want it at some point.  Call me, text me, or email me ANYTIME!!!!  I am glad to help.  I don't have all of the answers but I am always glad to help.  I will keep your family in my prayers and again, I am here if you need to talk.  Take care  :)

Hugs to you

~Christina

Life isn't fair and bad things like diabetes happen.  But like any bad thing good will come from it too.  

This won't be the end of your son's life.  He can do anything he wants except join the military.  

Health care costs are ridiculous for anyone right now, and especially for diabetics.  If possible try to add him to you or your husband's insurance at work.  If you need to stay self-pay then ask your doctors for discounts, ask them for free samples of insulin and test strips, and use generic glucose meters (from Walmart, Walgreens or Target; the strips are 50 cents each rather than $1 each for the name brands).

Take care and like everyone else has said, it will get better.   -Jenna