lymebrat
Frequent Contributor (1K+ posts)
Member # 3208
posted
Hi Everyone,
I got a email notice that I had 10 unread private messages here on LymeNet.. So I wanted to check in and let you all know that I'm not ignoring you.
The reason I haven't posted is that my 7 year old daughter, has been very sick.
She was diagnosed with Juvenile Diabetes in May (on top of Lyme) and this week her blood sugar levels have been all over the place. Anywhere from 600- 57 ( normal is 80 - 120). And when her sugar levels go high and low like this, it makes her very ill.
Yesterday when we checked her blood sugar before lunch, we were shocked that it was only 57...very low. She had no warning signs of a dangerous low..which is very scary.
Normally a person with diabetes, will feel weak, dizzy, hungry, etc..when their blood sugar falls under 80.
But unfortunately Mikayla has what is known as "Hypoglycemia Unawareness" where her body is unable to give her the warning signals, when she is in danger of a serious low.
She can tell me she feels weak or low, when she gets to 90, but if her sugar level falls too quickly, or below 80, she doesn't get any warning until she is low..
Which is very scary, as she could go into a comma or worse...
She also has sensitivity to insulin, which is very tricky and scary as well. Just recently, her blood sugar was 600, so the children's hospital told me to give her 1 unit of quick acting insulin to bring her sugar down..
( 1 unit is a very small amount) and it brought her down from 600, to 70 in less than an hour...very dangerous and scary..
So poor Mikayla has been not only dealing with diabetes, but she has these aspects of it to deal with on top of everything else..
She knows she will have diabetes forever, but last week she asked Santa this...
"Dear Santa, for Christmas this year, I wish that you would help my body get better at dealing with my diabetes" I cried for over 30 mins...
It breaks my heart...she is 7 years old, she should be asking for baby dolls, toys and games..-not that her body will cooperate to help regulate and cope with her diabetes...
We are going back to the hospital tomorrow.. I hope they can adjust her insulin or do something to help her feel better....
So that in a nutshell is why I haven't been able to post..I will try and get back to you when things settle down...
Best Wishes, and Happy Thanksgiving!!!!
~Missy
Posts: 3154 | From NH , USA | Registered: Oct 2002
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
There is a lot of hope that stem cell transplants will work to cure diabetes and so far it appears that way.
My wish for Christmas is that your daughter get her wish!
God bless you both.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Sorry to read this, it is really heartbreaking.
I admire your apparent strength in dealing with it, not sure I could cope with it if this happened to us.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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bettyg
Unregistered
posted
Where I live, we have a KIDS juvenile diabetes support group; do you where you live? Perhaps that would help a bit for her to share her expereicnes & feelings w/other young kids like herself.
I have Mikayla gets her xmas wish too.
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Oh, I am so sorry. How heartbreaking to see your child suffer and to have them express it so simply and eloquently.
I don't even know what to say. But my prayers are with you and for your daughter to have an especially (perhaps unexpectedly) wonderful Christmas.
Please know that my thoughts and prayers are with you and your family. I know from personal experience how scary and frustrating this illness is. When your daughter's doc can finally get her insulin level doses regulated you and her both are going to start feeling alot better, I promise. I know it can take a while to get to that point, in the meantime, please remember that we are all here if you want to vent anytime and we will be thinking about you and wishing your daughter health and happiness. You are going to find that in your weakest moment, your daughter will be the strong one, and vice versa. Take care and Happy Thanksgiving!!
tidegal
Posts: 44 | From GA | Registered: Nov 2005
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Lydie
Unregistered
posted
Lymebrat, I will send you a message with my e-mail. I just held a support group at my home for JDRF, and your daughter's situation is typical of a 7 year-old with diabetes.
Our daughter is much less sensitive to insulin at age 15, but when she was younger we had to dilute insulin boluses, she was so sensitive. Beware of formulas for correction doses. Appropriate doses will vary with the situation and require judgement each time.
We had to test 12-15 times/day to try to moderate those swings, when she was younger. At 15, this is no longer true.
Hypoglycemia unawareness is common, and is not some sort of permanent situation. Mot people with type 1 have to watch out for this. You can correct it by avoiding all lows for 2-3 weeks. The counter-regulatory hormonal response is depleted and needs to sort of restock. Do a LOT of testing.
I don't mean to be harsh, but this is what type 1 is. It is good to feel the grief ( I used to run water every night so noone would hear me cry) but at some point you need to stop it from "breaking your heart" and Mikayla's, because this is just the way it's going to be.
If I were you, I would start insisting on a pump, which is the single biggest factor in making life easier for us.
The glucowatch is useless and stem cell tranpslant won't help anyone until they figure out how to avoid immunosuppressant drugs, which they will never do. There are some other avenues of research that are more promising, but it's going to be years, maybe decades.
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I hope you get some help for Mikayla and you today, and I'm glad Lyddie is here to offer advice in such a complicated illness..
Blessings,
Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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lymebrat
Frequent Contributor (1K+ posts)
Member # 3208
posted
Hi Everyone,
Thank you all for the kind posts. I will share them with Mikayla later tonight. We just got back from the doctors and she is sleeping...
thank you all for letting me vent! It's so nice to know I have all of you here to just listen and offer support and prayers..
I went on one of the diabetes forums last night and read about a woman who lost her 13 year old daughter to diabetes. She died in her sleep. I just sat there reading the post and wept.. I couldn't even type a reply as I didn't know what to say. This poor mom, is living my worst nightmare.
I wake up at least once in the middle of the night, to do a blood sugar check on Mikayla. Last night I checked her twice.
I just sat on her bed and watched her sleep. In her sleep, she looks so peaceful, so healthy. Sometimes I still can't believe she has diabetes...
I hate to sound so sad, but damn it ..it just doesn't seem fair! I am told my feeling are perfectly normal and that it takes about 18 months for parents to truly come to terms with their child having a chronic illness.. I am only 5 months into this..
I do except that she has diabetes, I know she will always have it. And I am very thankful that she has an illness that can be treated. I know some mom's aren't so lucky.
So I will just continue to take it day by day and do the best I can to insure that Mikayla has a fun filled childhood and that diabetes is just something we have to learn to deal with.
I wish I could be more like Mikayla..she is so brave and excepting. Only once had she asked.."why me".
Her doctor at the Children's hospital said that Mikayla owns her disease. He said she excepts that she has this illness, but that she won't let it take away who she is.
She is so determined to not let diabetes get in the way of her just being a kid. And she is determined to help find a cure for diabetes. Just 2 weeks after being diagnosed, she asked me if she could have a yard sale to help diabetes research.
She and her brother sold some of their toys and they earned $240.00 ( of course when people learned where the money was going they gave $5.00 instead of $0.50 for a puzzle) . And she signed up for the walk a thon. She has such spirit and strength.
The local newspaper called and asked if they could do a story about her walking in the Juvenile Diabetes walk a thon. The reporter was so impressed with her , that the story made the front page!! He later told me that he got all choked up when he was writing her story and that she was a remarkable little girl.
And I agree.
Okay now for the update:
They have decided that Mikayla is extremely sensitive to insulin. I was told by the head of endocrinology today that many people, especially kids have a sensitivity to insulin, but Mikayla is one of the most sensitive cases he has seen in his 30 years of practice.
Also as luck would have it she is also among a very small percentage of people who have such a severe case of hypoglycemia unawareness..where she has no symptoms at all of a dangerous low blood sugar ..none.
Most kids can tell you if they fall below 70... Mikayla can't. She has no warning signs at all if she gets below 90. According to them it is common for some kids to be unaware of a low, but most kids Mikayla's age should be able to feel the symptoms, such as feeling weak, dizzy, etc. when they fall below 70.
They think her inability to feel a low coming on is due to the fact that her blood sugars are all over the place. She has only had a couple of lows ( below 60) these past 3 weeks, but she has had many highs, above 400.
It is the highs that the doctors are blaming for the inability for her to detect the body's warning signs. I am told that once we can get the highs under better control, it is their hope that she will be able to feel al low coming on if she falls below 80..I hope they are right.
Today while at the doctor, they discovered that she has a planters wart, on the heel of her foot. She has only begun complaining about it this past week, but the doctor said she has probably had it for a couple of months..
Just the stress of going to the doctor, made her blood sugar go up over 500. Any type of stress/pain/illness makes her blood sugars go very high.
So I gave her 1/2 unit of insulin, a miniscule amount and she went down to 110 within 30 mins. And of course having her blood sugar drop by 400, in 30 mins made her feel ill. She felt nauseas, had a headache, & stomachache. And she started to sweat and shake...very scary.
Luckily I am now use to this type of reaction and I am able to handle it without alerting Mikayla that I am concerned. Another thing that happens is that she gets confused and sometimes she is so weak she can't even walk.
They also decided to change her long acting insulin. They want to start her on Lantis, which is a long acting insulin that is suppose to have 24 hour coverage. She use to get 2 injections of the long acting insulin a day.
So while she will only need the one injection of long acting insulin a day, the down side, is that it can't be mixed with her short acting insulin like the other kind she used.
So that means more shots. So I will have to give her 2 shots every night at dinner and I will also have to give her short acting insulin at least 2 more times a day to cover her meals..so we are looking at a minimum of 4 shots a day..
I know several people have mentioned her getting an insulin pump, and we do hope to get her on one sometime in the near future. But as she is so insulin sensitive and her blood sugars are all over the place, her diabetes team won't even consider putting her on a pump. But our goal is to get her on one as soon as everyone feels it is safe for her.
I learned from Lyme that it is a very individualized disease. That not everyone has the same symptoms and not every med will work the same for every patient..the same goes for diabetes..
At the diabetes walk a thon, I walked with over 300 people, and not one of them had the same story. And many were surprised to see first hand how Mikayla had no warning signs of a low coming on.
Luckily I am a Girl Scout and am always prepared. I never go anywhere, not even to the mailbox without my low blood sugar kit..it contains everything I might need to deal with a low.
Okay I have to get dinner on the table, and wake Mikayla up and have a talk with her about changing her insulin and needing more shots. She won't like it..
Thanks again everyone, I'll try to post later..
~Missy
Posts: 3154 | From NH , USA | Registered: Oct 2002
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
LB..hugs to all of you..I think our daughter had better control when she was switched to Lantus..
And they also will not agree to a pump for her since she can't get in better control.. Everything throws her blood sugar off..Meds, stress, you name it..Even hospitalizations have not been able to get it under control..
And she likes it higher than it should be..So she could also do better.
I am glad to see that Lyddie is again offering some help..Think we all overwhelmed you in the beginning and then things were ok for a while and then the bottom fell out..Unfortunately, some of us knew it was coming..With the tick borne disease and diabetes, things are almost impossible.
But hang in there..It gets easier to deal with but it will never be fun..And there are worse things, you are correct..Sending my love, lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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Lydie
Unregistered
posted
Lymebrat, I am off Lymenet 100% but after a month or two, I just happened to look at at it and see your post. I hope you don't mind a few more things. I have sent you my e-mail too.
Is Mikayla still coming out of a honeymoon? I mean, have the MD's told you her blood sugars are swinging because she is still making some insulin herself?
I think a half unit of insulin is a fairly large correction dose for a 7 year-old. My daughter used to drop 100-200 points with .1 and.2 doses. Since 13 or so, this is no longer true, but we also heard that she was the most insulin-sensitive child they had seen.
A kid who is being "run high" will require larger correction doses, because there is less background insulin. A kid with a higher dose of longer-acting insulin would be the opposite. So Mikayla's sensitivity may have something to do with the NPH or whatever she is using.
About hypoglycemia unawareness: At age 7, my daughter would have lows in the 40's that were terrifying, even when we tested all the time. She would look like a corpse, or drop to the floor and be unable to walk. I would cry a lot. Please believe me, that this does not continue. It changes gradually, but the unawareness really does have a lot to do with age. Now, at 15, if my daughter has a lot of lows in a few days (due to illness, for example), she will not feel lows in the 60's, or even 50's. Then we do the program of avoiding lows for 2 weeks, and she gets her awareness back. But overall, her awareness improved with age.
Kids with asthma don't complain of discomfort until their breathing is 50% compromised, which is the level at which a trip to the ER is recommended. Same type of thing. Kids are like the energizer, they keep going and don't notice. They're involved totally in playing, or reading, or whatever, and it takes a lot to shift their focus to a low.
One of the things that helped me at the stage you are at was coming up with a USEFUL way to chart information. I made a one page chart for each week, with the blood sugars displayed horizontally across the page. Each day was one line across. The time of day was on top, and the days of the week vertically down the left side. On the right, at the end of each day, was a 'comments' box, with info on exercise, illness, meds, stress, food, etc.
Then, I color coded highs and lows. By looking even quickly at the chart after doing this, I could see patterns very easily visually. Essentially, each block of time in the days formed a column -waking up, morning, lunch, afternoon, dinner, evening, bed.This made insulin adjustments much easier and more accurate. Everyone has a different brain and you might find something that works for you, along the same idea.
When we came up with a good system for analyzing patterns, things got a lot easier.
When we went to the endocrinologist, they would look at patterns over time and make suggestions. However, the comments box has always helped us explain certain test results so that we can explain our reluctance to make certain changes. My daughter now argues with the MD (respectfully) and he usually listens to her!
An example would be going high when she goes to bat at soft ball, or when she forgot her insulin. Another might be going low after going on the swings. These blood sugars would not warrant a change in insulin, because they were aberrations and didn't happen all the time.
On the other hand, if I saw that she was going on the swings every day, I might change the insulin!
Also, try taking one day and testing every 60-90 minutes while she is awake. This can be really good information to use in your insulin decisions.
Correction doses need to be tailored to the time of day and what the person has been doing. Doing .5 after insulin for a meal, or when the longer-lasting insulin is peaking, or esp. after exercise, will be more powerful. Some days kids just run lower or higher than others, and you get an intuitive feel for it after a while. The school nurse and I used to compare it to surfing. You kind of catch the wave of the blood sugar trend and surf it as long as possible, then you have to switch to another wave.
I am very respectful of the endocrinologists and for the first 6 months I think I called them almost daily for help. So I know where you are at, I really do. But they don't always really know your own particular child's patterns and sometime soon you will just take it all in your own hands. Accepting the disease is good, but taking some satisfaction in beating it on a daily basis, by getting better control, can be rewarding in a weird way.
My friends are very careful with Lantus in a variable child. The pump allows adjustment of insulin levels all the time, any time, any number of times a day. A very long-acting insulin like Lantus is the opposite. Some people do really well on it, but my daughter would have had a lot of problems because she is variable.
I don't understand the resistance to putting your daughter on the pump, but it is common on the East Coast (not in Europe or the West Coast). The pump is the ANSWER to her variability, and it is so much safer (no bad lows, because at any given time there is only a small amount of Humalog on board). It is also the answer to insulin sensitivity, because it is so precise, and because there is no large amount of longer-acting insulin to interact with. Maybe they are waiting for you to have more experience, but I don't know why the East Coast MD's think you can't get the same experience starting on a pump. I would be much more afraid of long-acting insulins.
When the time comes, please believe me, the pump will help with a lot of your problems, and make your child's life much more "normal." There is a great book called "Pumping Insulin" that you can order. Also, all the pump companies will send free videos, DVD's, books for you. You can get these whether you are planning on buying one or not, just to help think about it. JDRF has groups too, and even acitivites like bowling for kids, in which kids with pumps show their pumps to the others.
We swear by Minimed/Medtronic (515 model) but the Cozmo pump is very cool looking for young children. I think there is a purple translucent one. It looks like a cell phone.
Sorry, I've written too much again.
One final thing, and please don't be offended. I am a jaded parent of a kid who had been suffering with this for 12 years, since the age of 4. We have found very little understanding of type 1 diabetes from people. When my 5 year-old child came out of a soccer game with a blood sugar of 47, and I was giving her juice and banana, and she was crying that she wanted to go back in- people talked about me! People said that I was hovering and should "leave her alone, she'll be fine." I kid you not. When she had to test in an eyeglasses store, they told me it was offensive and to leave. When she went to a birthday party at the Y pool, and ate a cookie before going in the pool, to raise her blood sugar, the Y staff ordered her (not me, her directly) at age 5, to leave the pool area for eating! The local Music Theater ordered us out of our high-priced seats near the front and told us to move to the back, because she was drinking juice. All of these people persisted in this stuff even when I explained that she had diabetes.
I can see that you need people to understand and sympathize, which is natural, and I don't mean to sound bitter. I am just trying to explain that although I am not bitter, (because people just don't understand), I no longer expect much in the way of sympathy. It hurts less to have no expectations. I hope that you have a better experience.
For us, the beautiful stories of the brave suffering child (our child) get old really quick. When they get older, they really resent this stuff, frankly, and want to be normal, not special! We moms get up all night to keep them safe, for one reason alone: their lives are in our hands. We pace the floor while they run around, and take calls about blood sugarsfrom school while we are at the dentist. Noone else will understand your sacrifice, but your reward will be Mikayla. Mikayla will learn from you that the way to beat this horrible disease is hard work on her own behalf, not any magical brave act.
What you said about each person being different is true. My step cousin has TWO kids with diabetes, The first was easy to manage, and he was critical of my care of my daughter. Then, his second child was really, really difficult. This child had a seizure and almost died, because the amount of testing the doctors reccommended was insufficient for his case. So now, my cousin tests one kid 4-6 times/day, and the other 14-17!
I hope this helps. You are still really early on and forgive me for wanting to spare you some of what we went through. My daughter is extremely mature for her age, very positive (but realistic), and involved in music, theater, writing programs and service to the community. Diabetes hasn't stopped her, but anyone who tells you that their life can be normal is not telling you the truth. My child has mastered the art of keeping diabetes on the back burner, so to speak. As a mom, it was harder for me to do this than her, because it is not my body. By age 10 it will be easier, and by age 13 it will be much easier.
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
The GlucoWatch� G2 Biographer is a watch-sized blood glucose monitoring system that provides painless and automatic measurement of blood sugar.
The GlucoWatch G2 Biographer enables individuals with diabetes to monitor glucose levels as frequently as every 10 minutes, for up to 13 hours.
The GlucoWatch G2 uses a small electric current to extract fluid from under the skin. The glucose in the fluid is measured using special sensor pads that are replaced daily.
Work???
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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Lydie
Unregistered
posted
Noone that I know uses the Glucowatch. In the 4 monthly diabetes publications I read, I have never read a single article about anyone using it. I have seen ads, and read about it as a product, but endocrinologists don't recommend it and patients don't use it.
Patients are not supposed to rely on it, but are supposed to still use a meter to check. It is not a substitute for a meter. Many things interfere with the function of the Glucowatch, including any sweat. Finally, the expense is extreme.
This is one of those handy dandy inventions that gets press but is of no actual use to people with diabetes. The same thing happens with potential cures: lots of press, nothing for patients. Publicity for gadgets like the Glucowatch gives the general public the idea that there is help for diabetes, and hurts funding for research because people think things aren't so urgent. This happened with AIDS once a drug cocktail got good press.
This type of suggestion makes me feel exactly the way we Lyme patients feel when someone says that one pill will prevent Lyme, or three weeks of antibiotics will cure it. if only diabetes- and lyme- were truly that simple to remedy.
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. And she signed up for the walk a thon. She has such spirit and strength.![[Big Grin]](biggrin.gif)
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