Just an update. Man, so much has happened. Katie got put on steriods
which immediately helped and all the pain went away. At least for the
most part. However, due to her diabetes the steriods interferes with her
insulin and makes it more resistant. Her numbers have not been terribly
out of control but they do go up and down some. In the past month Katie
has been in the hospital twice due to DKA (diabetic keto-acidosis). The
first occassion she was fine but ended up vomiting from I guess a
stomach virus. She was still fine after that but then in the middle of the
night she started again. I knew something was wrong when she was
laying in the bathroom floor and not really responding to me. Her blood
sugar was almost 600 and she had high amounts of ketones. We went
straight to the hospital and they admitted her right away. Her CO2 level
was less than 5. She was hooked up to IV's, sensors and the heart
machine and placed in ICU. They said that if we would of waited an hour I
would of found her in a diabetic coma and by morning it could of been a
whole lot worse. We spent 4 days in the hospital. Then this past
weekend we had a weather change and it was raining. She woke up not
feeling well and knees were hurting her badly, plus she had terrible
stomachache. So she tried to only eat small amounts that morning. By
lunch her numbers were still good but she had high ketones again. She
had drank over 80 ounces of water that morning to keep herself hydrated
but it did not work. We went back to the hospital and they said she was
in mild DKA so we were admitted again. Only had to stay a day and a half
that time and did not need to go to ICU. Been so bad lately. The doctors
believe that all the medicines she is on for the RA and making issues with
other things. So they changed her insulin to another type and we are
giving that two weeks to see if there is a change but so far no. We have
been getting up every morning at 2 am to check her sugar and it is always
high which requires her to get up and give another shot. she is doing
around 8-9 a day now. She said she would go ahead and go back on the
insulin pump to see if it helps so we are in the process of setting
everything back up. We know and her doctors know, she is starting to
give up. She said she is so tired of everything. I am trying to be strong
but it breaks my heart to see all of this. And in the meantime she is
trying to be strong and stay on top of things in school. But we have bad
luck, the night before she went in this time, my dad flipped his truck on
95 in Florida. Luckily he walked away fine but he had just gotten
discharged from the hospital for colon issues. Then when she went back
to school on Tuesday someone went into her purse and stole her cell
phone which is her lifeline. Luckily they left her medical supplies alone.
Then two days ago my middle son got suspended for fighting at school.
My dad called me back last night to tell me his fiance got laid off so we
need all the prayers there are.
Sorry for letting so much out. Just a lot has happened.
crazedmom - I understand your choice of login name now...
I don't know how you do, but you are amazing. Don't worry about your son getting suspened TOO much. Boys are boys and they do fight, and I'm sure he's feeling the pressure at the house from your daughter being sick. Just make sure you're involved in his life too :) I'm sure you are. :) I'm sorry to hear about everything else. :(
You say she was drinking milk to calm her tummy, is she still having tummy problems? You may want to cut dairy out of her diet. She may have developed lactose intollerence, or she may have a GI problem - either way removing dairy MAY help alleviate some of her symptoms. When she starts to feel sick to her stomach, or really acidy (burning, etc) get her to eat some bread. Plain old bread. Or Toast. Whatever works. See if you can snag it before it gets too bad. Def keep the appt with the GI though, nothing to lose with that.
Why don't you try to get her to sign up with us? I'm 23, but I've had JRA since I was a baby. There are some other girls on this forum as well that have had it since they were younger. Meg just signed up and she's only 18, she's really sweet I talk to her some :) It may lift her spirits some. I REALLY hope you get some answers, please please keep us posted!
BTW, My name's Katie too :)
Take care!
crazedmom,
I have a daughter with a lot of medical problems too. It is so heartbreaking as you try to sort it out. All I can tell you is not to give up. Stay as calm as you can be and let her know that you are fighting for her and that you need her to fight to get through this because your life without her would be impossible.
Many, many times, I have sat with my daughter in the ER, doctor's offices, waiting for surgery, fighting with those who are supposed to help her, but don't. All of it has made us very close. Sure, we'd like to do more fun things like shopping or travelling. But right now, this is what we have to do.
You just have to keep fighting to get her better and let her know that you are not about to give up. This is how you will boost her strength.
Now, for you. When things were really bad, and they were bad, I called some crisis numbers. That helped to get me through it and helped to get my daughter more help.
Also, if there is any way that you can help build her a support system of friends her on age, it can make a world of difference. Even one really good friend can make a difference.
When all these kinds of things seem to be piling up in my family, I get everyone together for a meal out and we just talk. Or, I will take my son aside with just time for him, and we do something that's just his. It is very hard to be the sibling of one so sick and I think boys especially react with anger. But if you can give him the opportunity to express his feelings, even if they are very negative, and then educate him on the problems, you may find that he can be a resource for both of you and you will also be able to support his needs too.
You have to think of it as triage. Who is hurting the worse? What can you do? Who can you enlist to help you with the problem? Then, slowly some things will improve.
I really hope that they get your daughter stablized soon. It seems very possible. But it just may take some time.
Hello everyone,Welcome to the boards. There is lots of info here, you should go through the archives and read some of the info posted.
I think it is a good idea to take her to a rheumatologist-sounds like RA symptoms to me. There are lots of immune diseases that cross each other. I don't want to scare you but tell them to test her for MS. That's compatible with pain and the rash across the checks. Tell the drs to rule out as much as possible and make sure you get a dr that you and your daughter are comfortable with and trust. Don't let them just talk and prescribe meds--make them do tests!
Let us know how things go with the doctor.
Alright, the lab mailed me the labwork results because I also have to
What a terrible combination for such a young woman to have. We welcome you here. Also, make sure that they test for Lupus too.
Untreated RA does cause weight loss. A good rheumatologist would be a godsend to you. Get as much info as you can and start educating both of you.
My daughter has a lot of medical problems and one of the hardest things for her is that attitude of her friends, teachers, etc. who cannot see that someone so young can have so much wrong with her. It really hurts her self-esteem. This is one area that your strong support and being knowledgeable will really help her. But she might not tell you how much it affects her daily life. I suspect you have a strong kid already if she is dealing with diabetes. So, just a heads up on watching out for this.
Did your daugter go through alot of depression with the diabetes this is a big thing to watch out for. be careful of major weight loss.crazedmom,
So sorry to hear of your daughters problems. You can get a wealth of info here, so welcomeShe has never really went through a depression. She handles things so
well and always says the lord does not give her what she cannot handle.
She went to the rheumalogist on Friday who did lots of blood work. He is
testing for RA, lupus, MS, all the works. I have actually had to contact the gastrologist doctor today because all
the Sunday and yesterday she was in lots of stomach pain, burning, etc.
which included her vomiting several times. She was drinking lots of milk
and malox and nothing seemed to be working. I guess they may have to
do the scope sooner so we can rule something out at this point.
Life seems to unfair when such a young person has to deal with so many
issues.
WHy does your daughter take 7 shots a day? Before I went on an insulin pump I was still only taking 3 shots a day. AN insulin pump would make her life much easier I would talk with the doc. She has tried the insulin pump and did not like it. Instead of changing
sites every 2-3 days she was doing it daily, sometimes twice a day
because the site would fall out. Her doctor even prescribed hospital
adhesive and it still would not stay in. She is on 7 shots because she has
her lantus done with 2 shots to get better coverage and she has to cover
each time she eats since lantus is only a long acting insulin.
She has no interest in being attached to a pump again at this time.
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