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Bad night, daughter in hospital in Chicago

I'm sorry to hear about this Bob and empathize with you. My sisters daughter was diagnosed with juvinile onset diabetes when she was 12. She is now 28, a mom with 2 daughters and a registered nurse with a BSN living as normal a life as one can with this disease, so take heart and hope.


Have you guys gotten information from her doctor about the insulin pump yet? Both my niece and my best friend have these pumps and they are very effective at controlling insulin levels automatically.
 
Cityboy . . . No, we don't know anything about the pumps. In fact I'm on-line this morning learning about them. No clue what the costs are, if they are covered by my insurance, or if my daughter is a good candidate for a pump at this time. From what I am reading, they are expensive and worth it. It also appears that they are not given to newly diagnosed patients, which is what my daughter clearly qualifies as.

We have a follow up meeting at the hospital in 3 weeks, at that time I intend to follow up on the whole topic of the insulin pumps. It seems clear from reading about them, that they provide a much more stable insulin level for the user. It also seems clear that they are not a magic bullet, but they are a wonderful convenience that also increases the safety factor that can pretty much prevent both lows and highs, which are the big concerns.
 
Bob,
Look at your local drug store for the syringe case. go to cvs.com and search on 277761 . My son has couple of cases that he's gotten from there.
 
B_Skurka said:
Does anyone know were we can get a "cute" syringe & insulin carry pack? I know some business people who carry insulin in very nice leather carry packs that are obviously designed for the task, I figure if they make carry packs that look like a compact 'executive portfolio' then they must make some that look appropriate for children with flowers or designs on them?
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Hmm, a couple of years ago, quite by accident, I found a nifty carrying case for a syringe etc. But, I don't think the HVAC guy was a diabetic; if you know what I mean. :eek: He asked me to get one of his expensive personal meter and gauges out of the front of his truck inside his personal tool box. I picked up a really nice (like Italian leather) pouch that I thought may be his meter. When I opened it to see if I grabbed the right thing, well, I was sort of shocked! Anyway, it certainly was a nice carry case and, no doubt, was likely designed for diabetics. It would be perfect to carry inside a brief case, a purse, or even in a backpack.
 
Bob,

You have brought up an issue with this post that, while I am sure you will come across it soon enough, but you MUST educate the teachers, and administration at school on your daughters condition. SOME school districts will NOT allow insulin syringes and some will. Here our grade school did NOT, but the high school did, which in the large picture made no sense to me. Let them know what her parameters are, her meals are to be, and let her friends in on it.........please. They can be shown what to look for and since they are most likely around her more, they can alert the correct persons at school. You mentioned once that she gave herself 2 injections, we used to mix the insulins for our daughter, slow and fast, but this was after a time, I am honestly not sure about right after onset.

From past experience I can tell you insulin pumps may be premature at this time for her. You have heard/read correctly, they are for those that have matured so to say. We were considering one for Auty when she past away.

From this point of view, another thing very important is to find an endocrynologist that you and your daughter are happy with. This person will change as she ages, they specialize somewhat as child and adult stages begin.

I feel for you guys very much so, I know exactly what you are going thru, we have been there, done that, got the shirt so to say. There are many support agencies and groups to support both your family and your daughter.......use them please. There are camps, sporting events, and other activities led by wonderful people who also have diabetes and related illnesses............... I can tell you it is not easy, but I can also tell you it is very possible for this to not be a major ordeal, but simply something you do normally.

God Bless you guys as you begin this journey..........
 
Life at home is adjusting to the regime of Diabetes. Melen's blood test this morning was the first reading she had below 200 with a score of 197. At lunch today she was at 215. So she is pretty stable, and her scores are trending slowly lower. Yesterday she ranged from a little over 300 to the mid-200s. Today she's a solid 75 points lower. Her blood sugar has been trending down at about that rate since treatment started. So with any luck she will be into the "normal" range tomorrow. The trick then will be to hold the levels there with a combination of diet, exercise and insulin injections.

I've been doing some research and found an interesting article on Stem Cell Research that could be a future breakthrough. It is discussing the type of Diabetes that Melen has and it shows some promise. Clearly the results are preliminary, but they are very recent (this year) and it might be possible to see her treated by this type of therapy at some point within the next decade?

http://www.boston.com/news/nation/articles/2007/04/11/stem_cell_treatment_used_for_diabetes?mode=PF

In the mean time, I now have Diabetic supplies in my car, including a "crash" kit which is a scary red box that contains a needle, some fluid and some powder (that actually never stays in the car, it is carried with us and only transported in the car). Should she ever collapse, that kit must be in easy reach. We got several of the kits, one will remain at the house, one at school, and then the traveling kit that will go with us. She now has a bunch of "Medic Alert" jewelry on order too. Everything from bracelets to dog tags to a sweat band that contains her medical information.

I also found out that my insurance cover the Insulin Pumps. So if/when she is recommended to switch to one of those we will have that option. From what I can see, they do a much better job of regulating blood sugar than the traditional methods and they also reduce the long term chances of complications. So as unpleasant as hooking one up ever few days might be, it really seems to be a better system.
 
Glad to hear she's stabilizing and everyone's adjusting.

Our prayers are still with all of you.
 
Thanks Brian. I'm not one to normally get too emotional but this really did get to me. I was totally fine when she was in the hospital but was pretty much a basketcase on Sunday. My wife sort of lost it last night. I guess we each have our own time tables? But it seems to me that in the hospital we were still in shock over the diagnosis, and we were probably more concentrated on learning the daily needs, care, etc. After we got Melen home we were able to look out to the future and that is when I found out about all the complications that come from this type of diabetes, none of which are minor issues. So you worry about what will happen in 10 or 20 years!!!

Still, there is a lot of advancement on the medical front. I've been reading a lot on the Stem Cell Research and the most promising of it is from (what I consider to be ethical) adult stem cell research where they take the patients blood and use it to stimulate stem cells in their own marrow, which is then extracted and reused for treatment that appears very promising. There is also some fetal and some embryonic stem cell research going on, but those appear to be far more theoretical and not even close to testing stages. The adult stem cell research has already been tested on humans with some excellent results, albeit only in a very small trial study.
 
B_Skurka said:
I also found out that my insurance cover the Insulin Pumps. So if/when she is recommended to switch to one of those we will have that option.
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Bob, yesterday I discovered that a lady I know at one of my accounts has been a diabetic since she was a child. She has had an insulin pump for the last few years as well as having special contact lenses that show a bright red color if her blood sugar levels are out of range. I'd never heard of those contact lenses before, nor know of their cost etc., but she reeeally seemed to like using them. She mentioned that she caught blood sugar issues several times by looking in her compact mirror before she felt any symptoms at all.

Again, I know next to nothing about the disease, but this lady I know in passing was pleased with her pump and special contacts (she wore contacts anyway before these special glucose indicator ones were available). I suppose my only point is that she lives a very normal life and seems far less concerned about constant testing with her "x-ray vision eyes"; as she calls them.
 
I know what you mean. Often, when something happens to a family member, friend or other, your initial action is to "take action". Later, after the "initial" crisis period is over and you have a chance to contemplate, is when you mentally break down at some level or another. The two most vivid for me right now was when my daughter was born (emergency c-section followed by being sent directly to the NICU) and 9/11. A degree of mental collapse happened after each.

Glad to hear they're making great strides in the stem cell approach. Keep us up to date.
 
Bob,
Sometimes it takes the mental/emotional release to get you out of the shock and protective mentality. After all, it is your own flesh and blood laying there in the hospital and you seem so helpless. At least I did. The long term effects are something to think about, but with proper monitoring/control and follow up care, she will lead as much a "normal" life as anyone else.

Does the "crash kit" have Glucose tabs in it? In case of a low glucose level.

I wish my son would monitor his better. As much as I tried when he lived here the last time, he never kept up on it. He was adult age, so who was I to bitch? When he moved out, he gave me some extra test strips for his tester so I could use them. They were expired, by over a year.:pat:
 
The crash kit has 2 "boxes" of apple juice, 3 glucose tablets, and a pre-measured syringe in case all else fails and she passes out.

As for keeping up on the testing, it seems to be critical to long term health. If a diabetic keeps their blood sugar in check, it seems like life is normal. If the blood sugar stays high for too long, from what I can tell the side effects include limb amputation, blindness and death. Not good choices! Stuff happens before those things but all are apparently avoidable. I've been doing a lot of reading. It looks like the pumps are the best thing out there for long term health, they seem to regulate the levels far more effectively than giving injections. Obviously I'm really new at this, but am trying to learn fast.
 
Dear Bob ,
Prayer is a powerful tool and you got a lot of Prayers being said for your daughter . You hang in there buddy and don't hesitate to ask for help .

Allen
 
My mom has the pump and it has improved her health. She has fewer Low or high blood sugar levels. She has had two episodes in the last two years compared to 3 or 4 a year on average (guessing). Thats the ones I know about. Before the pump I once called her and ended up calling 911 from Nevada and had paramedics go to her house. Anyway. I am very thankful to the pumps. God bless you guys. you are in our prayers.
 
Bob- one thing you might want to consider putting in your crash kit is one of those tubes of decorators icing for cakes. That's what we always kept on hand at work and whenever the handicapped guy I was caring for would get "Low" to the point where he was ready to pass out, we would give him a little bit. It's much easier to administer soft icing to someone when they are comatose than apple juice or glucose tablets. Just a suggestion. Plus, this can be given even after the person passes out from being too low and is quick acting. Just open the tube of icing, give a little squirt in his/her mouth, then let it dissolve in their mouth.
 
Bob,

Our prayers for a safe healthy life for your daughter. And prayers for you and the Mrs. for the patience and new road you both will have to take for your daughters health.
 
Hi Mike!
I don't know this guy Bob but, if I may, from my heart, tell him of a true story of a fellow worker that was on the needle for diabetus. I don't know what type he had but he went to many Doctor's! This last one asked my friend Mike L. if he wanted to stop taking the needle. Of coarse, you know what his reply was. So, quite bluntly the Doctor said, don't waist my time and your's if you don't follow my DIET to the letter! I saw him month's later and I couldn't beleave the differance in the way he looked and felt. Then he told me the story I just told you. Oh, yes, no more needle's!
I hope this will help!, as our Pray's go out to Bob's Family!
AL
 
Any updates as to how your daughter is doing after a month???? Hope all is well and her blood sugar is coming down to managable levels.
 
Bob best of luck to you and yours. The current treatment for diabetes is for very strict blood glucose contol which limits the bad things that too high a glucose level does to the body (every time the level gets above 200 you are hurting something-diabetes is the #1 cause of blindness, amputation, kidney failure and lots more) but if your glucose level gets to low you run the risk of coma and death. So she will have to learn to monitor her levels and keep them with in certain limits. It sounds like she's in good hands and has a good attitude which is a large part of the battle. She has a lot to learn to control this (as do you and your wife) but after a while it becomes second nature, she'll be able to tell by how she feels if she needs more or less insulin or if her blood glucose level is too low that she needs a snack. Hang in there she will have to feel her way thru this and she'll need help along the way. Remember kids are tough and she'll do fine. rugerman
 
Since this thread popped up again, I'll give the latest update. Today was a bad day. First real bad day since we actually got the diagnosis.

This morning at school Melen's blood sugar dropped to 37! For those who don't know, that is VERY VERY low and that is VERY VERY bad. We were all very lucky but it scared the hell out of us. When she tested she was in the nurse's office at school. She called my wife, who called me. The nurse obviously stopped Melen from taking her scheduled insulin. Melen was also smart enough, even at the age of 12, to know that she should not take her insulin, but was unsure what to do. I was on the phone with the hospital and they told me that Melen's pancreas is working again . . . not a good thing. . . it means she is getting double the insulin. She is making her own and she is taking it via injection. The fact is her pancreas is NOT going to continue to work, it is apparently common for type 1 diabetics to have a short period (weeks or months) after they start taking insulin, for their pancreas to TEMPORARILY & PARTIALLY work. It makes it very difficult to regulate blood sugar levels.

She is feeling fine now, but we are now more closely monitoring her, and the doctors altered her treatment.
 
Bob-
Sorry to hear about todays events. While never having experienced the disease personally, I can only imagine what you and your family are going through. Good luck and hope your daughter feels well soon.
Bone
 
B_Skurka said:
I was on the phone with the hospital and they told me that Melen's pancreas is working again . . . not a good thing. . . it means she is getting double the insulin.
Click to expand...

That is called a "honeymoon period" where insulin production resumes, but there's no way to tell how long it will last. It's VERY important to keep an eye on her levels right now.
 
Bob, I just saw this. Can't really add any more to what has already been said except that I will keep all of you in my prayers.
 
Well Melen is in good spirits today and acting like a normal 12 year old kid, but she is running "low" on her blood sugar. Without even taking insulin her blood sugar levels have been on the very low side of normal, fluctuating between 70 and 90 all day today. For dinner tonight we were forcing her to eat corn, potatoes, etc just to get her blood sugar up. She'll probably get ice cream later!

She is definately in the "honeymoon" period. I think her nightly "Lantis" dose is too high but the doctors just lowered it yesterday and want us to maintain the new dose for a few days. I'll probably be calling the hospital Monday to see if they will lower the dose again.
 
Bob when a diabetic's blood glucose gets too low they become confused and don't know what's going on or how to deal with it, thats why with time she will learn by how she feels if she needs more or less insulin. Testing will show her how to interpret the way it feels when her levels are too high or too low and how to deal with the problem before it gets to the danger point. Right now she's still in the learning phase, again time will be the best teacher. All her teachers need to be told that if she starts to act different the school nurse should be called or she should check her blood glucose now. Being a young girl I'm sure that she doesn't want to draw attention to her problem or disrupt the class but she has to learn that if she waits the problem may get much worse, sure there will be false alarms but its better to be safe than sorry. A good friend of mine's daughter just found out that she was diabetic and it scared the hell out of them and she was testing 10 or 12 times a day and she was trying to keep her blood sugar very low and she kept getting in trouble with low blood sugar until she lightened up and let her blood sugar get a little higher, now she's doing fine and all her lab values are looking good and she's only testing 3 or 4 times a day (she's learned how it feels if her sugar is out of control). Best of luck. rugerman
 
I feel for you and your daughter Bob. I'm glad to hear you have it under control and that you understand what is going on. It is all new to me and it sounds tough for a young 12 year old to have to go through all this. Here's to keeping up the good spirits and helping her along down this road. I know it's not easy.
 
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