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Update on Daughter

Posted by on Aug. 25, 2013 at 10:43 PM
  • 19 Replies

 Ok, so I really think it's the doctors making my baby sick.  13 years old.  Within a month she went from colitis, to ulcerative colitis, to crohn's disease, she was admitted to the hospital last Tuesday night with pancreatist, and now is testing positive for TB.  I think I am going to have to find her a decent therapist that can help her COPE with the things going on but when you're 13 and can only have 30g of fat a day, it means that she can't have a chocolate chip cookie because it has 18g of fat.  JUST ONE!  So she is miserable, but she can have candy but you don't want to do that either, all that sugar doesn't do her any good either!  She's also dropped 5 pounds in a month without doing anything, and this is before she entered the hospital.  I think I need help coping too.  Just so glad to finally be home.  She was released today.

by on Aug. 25, 2013 at 10:43 PM
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Replies (1-10):
boys2men2soon
by Kimberly on Aug. 26, 2013 at 12:07 AM

I'm so sorry!    My Mom was hospitalized with pancreatitis 2 weeks ago.    She has had it before, though.   I can't imagine a 13 yr old suffering with it.




suesues
by Silver Member on Aug. 26, 2013 at 7:40 AM

look for a support group or a second opinion

ForeverLawst
by Member on Aug. 26, 2013 at 8:41 AM

I'm so sorry momma! I know from personal experience how frustrating it can be when the Dr's can't figure out what's wrong and keep switching the dx. Sending positive thoughts for your whole family. *HUGS*

MrsBLB
by Missi on Aug. 26, 2013 at 11:07 AM

Hugs to all of you.

fantasticfour
by Grumpy on Aug. 26, 2013 at 12:20 PM

 Thanks, now she has "teams" of doctors and we have to get everyone working with the school as well.  Good luck with that!  Oh well I have heard he's the best though.  Keeping fingers crossed.

girlsclubmom
by on Aug. 26, 2013 at 12:56 PM

So sorry your daughter and you are going through all this. Prayers sent for ggod health!

drfink
by Emily on Aug. 26, 2013 at 2:10 PM

 Do they know what caused the pancreatitis ?I was hospitalized for it 12 years ago .Mine was from a long list of things going wrong as I spiraled down  hard when  I came out of Lupus remission .

A great team of docs are a blessing.Do you have a notebook ?Keep it with you and any time you think of something you think is important or a question write it down.If it is a symptom or something along those lines date it and include anything surrounding the symptom.Also as much as possible quick note your conversations with her docs.What was said.You will develop your own special shorthand.

Good luck .Hope she is better very soon.Take care of you too.

fantasticfour
by Grumpy on Aug. 26, 2013 at 3:25 PM

 Well they started her on prednisone and things went downhill quickly.  Within 4 days she had stopped eating (all I could do to get her to drink ensure) she was very sad (said she had no idea why) and was very tired (slept 4-6 hours MORE than usual).  There are several causes of it, and although extremely rare, prednisone can cause it.  The problem is, she has a swollen stomach (pancreas is right behind it) and if the pancreas gets bumped it can do that too (she's been playing ninja with her sister).  Dehydration can cause it too, which she was.  Apriso (the medication she was on) which was working and we had no problems in 2 months can cause it.  So what did they do?  Nothing by mouth (fixes a little stomach swelling), IV fluids (fixes dehydration) and removal of all medications (fixed that too).  So no, they ruled out NOTHING.  You can't just stop EVERYTHING that causes it and then say it was one of them in my opinion.

A notebook?  LOL I went from a paper folder to a binder this week and I don't even have the records from the hospital or doctor yet.  I keep ALL medications, past and present, in it, MY statements on doctor visits, her health, what's going on in there, dated and timed.  All hospital/doctor paperwork, all Homecare paperwork, school information, and we had a composition book where she was writing down all that she ate and how she felt physically and then on the back sheet was a thing for her to write mental/emotional and questions.  Now she has to keep a strict diary of what she is eating, so that's going in there too.  She writes it down (gives her some control over it all), gives it to me and I type it up and print it out for her and put it in there now.

By the way, ER and Hospital staff LOVED my notebook when I came in.  All the information they needed was right there and they just made copies for themselves so they could review it later too.

Quoting drfink:

 Do they know what caused the pancreatitis ?I was hospitalized for it 12 years ago .Mine was from a long list of things going wrong as I spiraled down  hard when  I came out of Lupus remission .

A great team of docs are a blessing.Do you have a notebook ?Keep it with you and any time you think of something you think is important or a question write it down.If it is a symptom or something along those lines date it and include anything surrounding the symptom.Also as much as possible quick note your conversations with her docs.What was said.You will develop your own special shorthand.

Good luck .Hope she is better very soon.Take care of you too.

 

drfink
by Emily on Aug. 26, 2013 at 4:40 PM

 Oh my goodness ,bless yalls heart.I always mention a notebook...or in your case file cabinet ; ).Five years ago a very close friend was dx with stage one breast cancer, her husband or mom went with her to all her appts.to decide which path she wanted to take.I was startled when we were talking that there was something she was trying to remember but couldn't.I found out no one had been taking notes at all.I felt a little bad because I hadn't mentioned doing so.So now better safe than sorry.In Dec she is 5 years clear ...yay.

Oh gosh it is like a dog chasing it's tail sometimes to get everything clear and understood when things are complicated.I hope they can figure out the cause and effect so she and you can get back on track.

Ceremony
by Member on Aug. 26, 2013 at 7:58 PM

Prayers, hugs to you and family.  Hang in there and take care of you.

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