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
| IP: Logged |
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Good luck to you and Mikayla..Either disease is enough to have to deal with but lyme in addition to diabetes is horrible..
NOt sure if Lyddie is still around or not but she may have some ideas...I don't think anyone really understands how this becomes so much more dangerous with both problems unless they are in the trenches with it.
I will keep you in my prayers..lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
| IP: Logged |
lymebrat
Frequent Contributor (1K+ posts)
Member # 3208
posted
Thank you lymemom,
I appreciate your taking the time to post..sometimes all one needs is a shoulder to lean on and someone to share their hard times with..you have done both thank you. And thank you for the PM'S
--------------
I posted this on my thread over in medical and thought I would post an update here as well..
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...
I can't 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 reported 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
| IP: Logged |
NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Footprints in the Sand
One night I dreamed I was walking along the beach with the Lord. Many scenes from my life flashed across the sky. In each scene I noticed footprints in the sand. Sometimes there were two sets of footprints, other times there were one set of footprints.
This bothered me because I noticed that during the low periods of my life, when I was suffering from anguish, sorrow or defeat, I could see only one set of footprints.
So I said to the Lord, ``You promised me Lord, that if I followed you, you would walk with me always. But I have noticed that during the most trying periods of my life there have only been one set of footprints in the sand. Why, when I needed you most, you have not been there for me?''
The Lord replied, ``The times when you have seen only one set of footprints in the sand, is when I carried you.''Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
And thank you for the PM'S![[Frown]](frown.gif)
![[Wink]](wink.gif)
Printer-friendly view of this topic