Topic: My 7 year old daughter, was in the ER all night...
lymebrat
Frequent Contributor (1K+ posts)
Member # 3208
posted
Hi Everyone,
****Note: For those of you who don't know, my 7 year old daughter was diagnosed with Juvenile Diabetes (type 1) in May ... she was also diagnsoed with lyme in 2003*****
I ended up taking my daughter Mikayla, to the Emergency Room last night, as she had large Ketones in her urine and her blood sugar kept falling into dangerous lows.
Ketones develop when her body starts to burn fat for energy instead of sugar, usually when she is sick or has high blood sugar. This is dangerous, as it makes the body have a toxic acetone type chemical and can cause a comma and even death, if left untreated for as little as 4 hours..very scary!
Normally when she gets ketones, I have to give her insulin shots every hour, for 4-5 hours and this will clear up the ketones. But because her blood sugar was too low, I was unable to give her insulin, as this would make her blood sugar drop so low that she would pass out or go into a comma.
So I had to try and force sugared drinks/food into her, to get her blood sugar up high enough, to give her more insulin shots. She was so sick, that she was simply not able to eat or drink anything and on top of everything else, she was vomiting ( from her virus)..
Plus as she wasn't able to drink anything, she wasn't able to give me a urine sample to check for Keytones, so I had no way of knowing if the 2 insulin shots I had already given her, was working to bring the Keytones down. So I had to take her to the ER to have an IV and have her Ketone level checked with a blood test.
It was her first IV and it was horrible. The ER tech couldn't get the first one to work, so he tried another line and when he started to flush it or whatever they do, blood spewed out everywhere.
It was just awful, poor Mikayla's face was so scrunched up in pain and she was trying so hard to be brave...she had tears running down her face, even though she wasn't making a sound, and I had all I could do not to rip the darn IV line out and try to do it myself.
The techs were trying their best to get it in as quickly as possible, but unfortunately some type of bulge appeared under the needle and it was hurting her so badly, they almost had to do it all over again. Luckily they finally got the thing working, but it seemed to take forever.
While she was having the IV and we were waiting for the test results, they brought in a TV and VCR and we were able to watch a couple of movies. I have to say watching Beauty and the Beast in the ER at 1:30 in the morning isn't much fun, especially when your little girl is laying there with an IV taped to her arm and is in pain.
We got the blood results back and we were fortunate that the insulin I was able to get into her, did work in helping to get rid of the ketones.
But as she was unable to eat or drink and had been vomiting she was very dehydrated, so she had to stay longer to get some fluids replaced through the IV.
I called the children's hospital about 8:30 pm and we never got home until 3:30 this morning, it was a very long night! Luckily my sister was able to go with me and I was very grateful for her help, as I was at the hospital earlier yesterday for chest x-rays and was diagnosed with pneumonia..so I was a little tired. lol~!
Mikayla seems to be doing better today. I am checking her keytones every 2 hours and so far no more than a trace. Phew! Her blood sugar is a little better, but she is still dropping low in the 50's.
I am talking with the Children's hospital every 6 hours to update them on how she is doing and they are giving me advice on what to do all the time. She is doing much better and is able to keep fluids down, so I am hoping for a peaceful night.
Also her doctor prescribed a new meter for her so I can check her ketone levels with a blood sample, much like the way I check her blood sugar. This way if we ever have a time where she is too sick to drink and give me a urine sample again, I can still monitor her ketones from home. Which is very important with a child with diabetes.
Mikayla has had a rough 6 months and could use a little ray of sunshine. She is hoping to feel better for Christmas... Please keep her in your thoughts and prayers.
Thank you all and I hope you all have a Merry Christmas!
~Missy
Posts: 3154 | From NH , USA | Registered: Oct 2002
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Sending you and your daughter lots of good thoughts and energy. What an ordeal!
I have just been reading a book by Dr. Ron Rosedale (The Rosedale Diet) -- I got it to research more about leptin resistance but it seems that leptin resistance goes hand in hand with insulin resistance/diabetes.
The reason that I mention this is that he has been working with people who have diabetes for years and his diet and supplements are supposed to help people overcome their diabetes. At the very least it might help prevent un-fun ER visits.
I just thought I might mention it if you were interested. Right now you are probably interested in getting some sleep!
Take care,
Alison
--------------------
The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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dmc
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I hope things continue to improve for Mikayla and you.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Lydie
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posted
Alison, this book pertains to type 2, not type 1, diabetes. You do not "overcome" type 1, since it is a permanent condition in which the insulin-producing cells are completely destroyed by an autoimmune process.
Type 2 involves insulin-resistance in the body, which is still making insulin. It can sometimes be improved or "overcome" with weight loss and exercise and other lifestyle factors.
I also have a child w/type 1 and Lyme, and like to spread the word on the difference between these two types of diabetes, which are really different disease processes. Only about 5% of people with diabetes have type 1, and they are permanently dependent on injected insulin, having no insulin at all produced internally.
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posted
Missy, I just can't believe how much you and your family have had to deal with.
I'm not familiar with the problems you're facing, so I have no recommendations. You're handling everything beautifully.
Mikayla is a remarkable little girl.....takes after her Mommy. I'm so proud of how brave and understanding she's been through all this.
Tell that special son that I just heard the bugle at Fort Jackson &, as always, it reminds me of him. I hope he's continuing to improve.
Just know that I will continue to keep all of you in my prayers. Sending lots of love, concern, & support.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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The book actually refers to both type 2 and type 1 diabetes. It seems he's had some success with both types doing this plan. He mentions that type 1 can benefit greatly from the supplements and eating plan. That said, I just read the book and haven't tried anything but it came highly recommended by Dr. Mercola so I just thought it might be worth mentioning.
I can't imagine how difficult it must be to have a little one with type 1 and lyme.
Take care,
Alison
--------------------
The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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lymebrat
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Member # 3208
posted
Hi Everyone,
Thanks for all the replies, I can't get to sleep and it's nice to have my lymenet friends to lean on ... thank you .
Lydie
I just answered your private message, I hope I did it right
Alison
Thank you for the good thoughts and energy.. I'm a big believer in the power of prayer..
Also thanks for the info on the book. Like Lydie said, my daughter is one of only 5% of people with diabetes, who has type 1 diabetes. Also know as insulin dependent diabetes. Unlike type 2, nothing she eats, or does will reverse her diabetes or stop her need for daily insulin injections..unfortunately.
There is hope on the horizon for islet cell transplants and possible pancreas transplants, but this is only in the research stages...
But we are doing all we can do to raise money for research and hope we will play a part in finding a cure!
I am also a big believer in having my daughter eat a very well balanced diet and get regular exercise, so I will defiantly read the book, if only for better nutrition ideas..thank you for thinking about her, I appreciate it!
dmc
Thank you!
Posts: 3154 | From NH , USA | Registered: Oct 2002
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Boomerang
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posted
Missy, sending prayers to you and your sweet little Mikayla...
Hoping you have a wonderful Christmas! God Bless...
Posts: 1366 | From Southeast | Registered: Sep 2005
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lymebrat
Frequent Contributor (1K+ posts)
Member # 3208
posted
psano
Thank you for posting. I know what you mean, I still cringe when I think about it. It was an awful experience, one I hope not to repeat!
Cbb
Hi Carol,
Thank for posting. I knew you would.
I'll be sure to tell Derek about the bugle reminding you of him..he will think it is cool. Derek is doing sooo much better. His main complaint is joint pain, and we are working with an occupational therapist to help with that.
We were suppose to start him on plaq. but with Dr.J going through the court case, I'm not sure if we will be able to keep our appointment with him..so we'll see what happens.
And yes, I too am constantly awed by how well Mikayla is coping with all that life throws at her..she is doing a much better job than her mom.
She is so determined to not let this illness take away her childhood and to do everything she can to raise money for research for a cure.
Did I tell you she won a trophy from JDRF, for outstanding fundraising efforts, when she did the walk to cure diabetes walk-a-thon? She raised over $2700.00 and has already started to ask for pledges for next years walk and it isn't until September 2006.lol!
Somehow I just know that she will play a part in helping find a cure or at least a better way to treat juvenile diabetes. At only 7 years old, she has such determination and is real goal orientated. It's truly remarkable.
Thank again for always being there for us..your a real special person.
Thanks again,
~Missy
Posts: 3154 | From NH , USA | Registered: Oct 2002
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lymebrat
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Thank you Boomerang! And I hope you have a Merry Christmas as well!
~Missy
Posts: 3154 | From NH , USA | Registered: Oct 2002
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posted
Missy, It's late, so I hope you're getting some much needed rest.
The mother in me says you need to be sure to take care of YOU!!! I know that's easy for anyone else to say, but I hope you'll be able to do it.
When you have time & energy, please give us an update on everyone. Your LymeNet Family cares!!!
Posts: 4638 | From South Carolina | Registered: Mar 2001
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Lydie
Unregistered
posted
Alison, the word "overcome" seemed to indicate the book must be about type 2. Sorry!
To clarify: supplements, diet and so on can actually affect the disease process with type 2. In other words, they can decrease insulin resistance in the cells, which is what type 2 is.
Such efforts can improve blood sugars with type 1, but have absolutely no effect on the disease itself, which is absolute and permanent. In other words, there is no way to recreate destroyed beta cells, which is what type 1 is.
Not very many people truly understand the lifestyle involved with type1, which Missy and MIkayla are dealing with. No supplement or exercise or healthy diet will reduce the horrors of the lifestyle. Kids might achieve a slightly better average blood sugar, say, with daily exercise, but some of the suggestions in these helpful books actually increase the stress in the daily life. Just more to deal with!
Lots of people have called me when there is a newspaper article on, say, cinnamon, as helping with blood sugars. So we try cinnamon toast for a few days. These things are like trying to deal with a tidal wave by swimming. Type 1 is a natural disaster!
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Linda LD
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Missy,
My gosh--you all have been through the ringer. I hope you can just rest over Christmas--truly you have to take care of yourself before you can care for anyone else--and there are a lot of people depending on you.
God bless sisters, huh? They are the best!
You tell Mikayla that there are people all over the country, all over the world praying she feels better soon!
God bless you and your family and Merry Christmas, Linda
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Warm thoughts and prayers to you and your daughter. Im hoping she is able to have a good christmas.
What is with ER ducks. I had a similar IV experience...the last ER visit for me was terrible... I actually walked to the bathroom holding my IV...wasnt told to keep it above my head. Blood was all in the tube as it was backing up!!! I cried so much that nite.... During another ER visit i had them wash out the IV and it spurted blood all over too. Then one other time my vein collapsed.
My LLMD uses a butterfly needle.....gosh I never even felt it going in. He said thats what everyone should use on me. So, that might have made a difference with your daughter too. ER's dont use those.
Im just glad that you are home now....and that the dr was able to give you a test that doesnt involve a urine sample.
Hugs and prayers.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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Just wanted to send my warmest thoughts and wishes to you and Mikalya. When my son was 10, he spent a very scary couple of days in first the ER, then pediatric ICU with DKA(diabeticketoacidosis).
I understand what you are going through and the difficulties of trying to regulate her blood sugars. The first year is often the hardest (although puberty has its own set of challenges - but don't even try to think that far ahead yet), but I know with your diligence and Mikalya's strong spirit, you will both get through it.
I hope things will settle down enough for you to be able to relax ( at least a little) and enjoy the holidays.
Do the doctors think she will be a candidate for a pump anytime in the near future? It is so nice to be able to just punch a few buttons when extra insulin is needed instead of all those extra injections.
My prayers are, as always, with you and your family.
Best, Suzy
Posts: 260 | From Virginia | Registered: Jul 2004
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Your little one is on my prayers everyday, I really now how hard is to have your little one sick, I have an 8 year old boy sick with Lyme and Co also. Been sick with Lyme is very hard but having your child sick with this disease or any disease is just plain agony.
Happy holidays, tons of hugs and kisses to Mikayla, she is very lucky to have you as a mom, and a huge hug to you for been there for her all the time, you must be exhausted. Take care of yourself too,
Lymster in WA.
Posts: 303 | From WA | Registered: Jul 2004
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arg82
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posted
You have all been through so much, and especially Mikayla at such a young age. It is amazing how much strength and courage young people can show the rest of us. She is truly an inspiration. But, as much as we all need inspiration in our daily lives, I wish we didn't get it from such amazing children facing such horendous situations. Tell Mikayla (and Derek) that I'm sending lots of good thoughts and holiday wishes!
--not the ideal way to spend the days before Christmas, huh ?!
I hope things settle out nicely for the weekend for both of you and your whole family.
-- it is very rough dealing with critical times in these illnesses, I have allot of faith in the two of you getting through this and enjoying more stability soon.
As far as adjunct therapies/diet ect.. in time (and with what works for Mikayla).. I also have read of allot of very helpful 'regimines' in type 1 -- perhaps not to overcome..but to help a great deal.
In time, I'm sure you will find your way to utilize them and I'm glad there are others here who have been where you are to support you.
Have a Blesed Christmas --
Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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Nal
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posted
Oh man, your poor little girl!! I don't blame you, I would want to try the IV line myself too at that point!! God Bless her and I hope she gets to feeling better soon!
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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lymebrat
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Hi Everyone,
Thanks for the posting. just wanted to give everyone an update, it looks like I'm in for another long night...
I had to call the children's hospital again several times today as Mikayla's blood sugars are still going way too low.
The bad part is that most people with diabetes, can feel a low coming on, they either feel weak, shaky, hungry etc..they have some type of symptom that alerts them, that they are getting low and they can treat the low before it gets dangerous.
Mikayla has "hypoglycemia unawareness" where her body gives her no warning signs( that she can detect), to let her know a low is coming on..so as a result, she isn't aware she is getting low until she all but passes out..which is very scary!
She was low twice in the middle of the night last night, which makes me very nervous, I hate to think what may have happened if I wasn't so diligent about checking her blood sugars ..she could get too low, pass out, slip into a comma or even die.
So I have 3 alarm clocks set up in my room, the hallway and her room for midnight and 3:00 am, so I will make sure I can check her through the night when she is ill.
Unfortunately I was blessed with pneumonia and am having a hard time getting any rest as I am coughing so bad. I do have a script for codeine cough syrup, but there is no way I will take it, as I'm afraid I'll fall asleep and not hear the alarms to check her blood sugar.
Mikayla is feeling better today, she is able to keep some food/fluids down, so I am able to keep her hydrated and ketone free. ..that is half the battle.
Thank you all for your thoughts and prayers, they are greatly appreciated and at times like this, very much needed.
It is hard to watch my beautiful little girl, who was pretty healthy 6 months ago,( she was just deemed "cured" of the lyme 6 weeks before all of this) have to deal with so much every day, just to stay alive.
But we all do what we have to do, and she is a brave little girl. She has only asked "why me?" once and other than that has taken her illness head on and is coping with her new way of life, much better than her mom and dad!
When I am at the Children's hospital, I have seen children who will unfortunately never be able to leave the hospital and their parents will never be able to take their child home..
So even though having to watch my little girl go through all that is involved with having diabetes, I am both thankful and blessed that what she has is something we can hopefully manage with proper care and medical treatment... we are lucky.
Thank you all for your thoughts and prayers ..
I hope you and your families have a wonderful Christmas!!
~Missy
Posts: 3154 | From NH , USA | Registered: Oct 2002
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lymebrat
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quote:Originally posted by Linda LD: Missy,
My gosh--you all have been through the ringer. I hope you can just rest over Christmas--truly you have to take care of yourself before you can care for anyone else--and there are a lot of people depending on you.
God bless sisters, huh? They are the best!
You tell Mikayla that there are people all over the country, all over the world praying she feels better soon!
God bless you and your family and Merry Christmas, Linda
HI Linda,
Thank you for posting. Yes, God bless sisters..I don't know what I would do without mine. Nikki is my identical twin and we share a special bond. She is unable to have children and my kids are our kids.
When I told her I was pregnant, she was so excited..she said "We're having a baby!" She was with me every step of the way and My kids and I are blessed to have her.
I read Mikayla your post about people all over the country and world praying for her. She smiled and said she already feels a little better, knowing that so many people are praying for her..
Thanks again and Merry Christmas!
~Missy
Posts: 3154 | From NH , USA | Registered: Oct 2002
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posted
Missy, Thanks for the update on Mikayla. So sorry you're still having so much to deal with, but glad to hear there's some improvement.
Will continue to keep all of you in my thoughts and prayers.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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lymebrat
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quote:Originally posted by SuZ-Q: Missy,
Just wanted to send my warmest thoughts and wishes to you and Mikalya. When my son was 10, he spent a very scary couple of days in first the ER, then pediatric ICU with DKA(diabeticketoacidosis).
I understand what you are going through and the difficulties of trying to regulate her blood sugars. The first year is often the hardest (although puberty has its own set of challenges - but don't even try to think that far ahead yet), but I know with your diligence and Mikalya's strong spirit, you will both get through it.
I hope things will settle down enough for you to be able to relax ( at least a little) and enjoy the holidays.
Do the doctors think she will be a candidate for a pump anytime in the near future? It is so nice to be able to just punch a few buttons when extra insulin is needed instead of all those extra injections.
My prayers are, as always, with you and your family.
Best, Suzy
Note to everyone, sorry to be replying with quotes, but I'm too tired to remember what everyone said..lol!
Hi suzy, DKA is very scary..Mikayla's blood sugar was 971 when she was diagnosed and she had ketoacidosis as well..the doctor we saw, said he didn't know how she was walking, as he had never seen a child with blood sugars so high and in DKA not in a comma..
The docs did want her to wait until May to even think about the pump, as she is so insulin sensitive and has hypoglycemia unawareness, but the endocrinology team is having a meeting about her on Monday and will decide if she should be put on the pump early.
Mikayla doesn't want anything to do with the pump. She is very good about getting her 4-5 insulin shots every day and is adamant she doesn't want a machine attached to her 24 hours a day..she'd rather have 4-5 quick painless shots.
So we'll cross that bridge when her team of doctors decide she needs to be on the pump.
Thanks for posting... it somehow helps knowing others have been through all of this..
~Missy [b]
Posts: 3154 | From NH , USA | Registered: Oct 2002
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lymebrat
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quote:Originally posted by lymster: lymebrat:
Your little one is on my prayers everyday, I really now how hard is to have your little one sick, I have an 8 year old boy sick with Lyme and Co also. Been sick with Lyme is very hard but having your child sick with this disease or any disease is just plain agony.
Happy holidays, tons of hugs and kisses to Mikayla, she is very lucky to have you as a mom, and a huge hug to you for been there for her all the time, you must be exhausted. Take care of yourself too,
Lymster in WA.
Hi lymster,
exhausted doesn't even begin to explain how tired I am..lol
I am waiting to go to bed until 1:30, so I can check her blood sugar before I fall asleep. I'm afraid if I went to bed I wouldn't have been able to wake up to check it at 1:30. Then I can sleep for 3 hours if her bs is okay..
My husband is getting up early to get things started for our Christmas Eve celebration with our families. So Mikayla and I get to sleep in. Supposedly all I have to do tomorrow is take care of me and Mikayla.. that would be a welcomed break.
Thanks again for all the prayers, they are greatly appreciated!
~missy
Posts: 3154 | From NH , USA | Registered: Oct 2002
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lymebrat
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Hi cbb,
Thanks for checking in on us and for the continued prayers.
yes things are defiantly improving as she is able to keep fluids down and so far( fingers crossed) she has only trace ketones..
So it looks like she is getting over the virus and will hopefully be feeling much better for Christmas morning.
My family is all coming over tomorrow as we are celebrating Christmas on Christmas Eve this year, so I am hoping she will feel a bit better for that as well.
Thanks again for posting and Merry Christmas!
~Missy
-----------------------------
PS..I will post more to others tomorrow, as I am going to get things ready to check Mikayla's bs and get off to bed.. Pleasw keep the prayers coming!
Thanks, ~MissyPosts: 3154 | From NH , USA | Registered: Oct 2002
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Boomerang
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God Bless, Missy! Hoping you have a wonderful Christmas!
Posts: 1366 | From Southeast | Registered: Sep 2005
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lymebrat
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posted
Hi Everyone,
I hope you all had a Merry Christmas!!!!
Despite having pneumonia and spending most of the day in my recliner, we had a wonderful Christmas!
Mikayla is feeling much better and we were blessed that her blood sugars were under control yesterday.
She woke up and the first thing she said is "Wake up Mommy, it's Christmas! and I feel GREAT!"
She felt so good, her blood sugar was near perfect and she looked so healthy, you would never know she has diabetes and was in the emergency room 48 hours ago..
And our doctor called on Christmas Eve, to tell us that the insurance company approved a new meter that will check her ketone levels with a blood sample (like the one we use to check her blood sugar levels)
So when she is too ill to give us a urine sample to check for ketones, we can now use this new meter and this may save us another trip to the ER.
The insurance company wasn't going to approve it, but when our doctor called them and told them that it was a medical necessity and that she was just released from the hospital due to large ketones, they did approve it.
The test strips are $299.99 for 48 strips. Yikes!! And when she is ill, I have to test her about 4 times a day (minimum). So I am very thankful that they are covering them!
Thank you to all of you who replied and for your prayers, they are greatly appreciated.
I hope you all have a happy healthy New Year!
~Missy
Posts: 3154 | From NH , USA | Registered: Oct 2002
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Michelle M
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Hi Lymebrat. I'm so glad to read Mikayla is doing better. I hope Santa was good to her! She's a wonder. So are you, for your ceaseless vigils. My thoughts and prayers are with you and your family.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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