My daughter was diagnosed with a benign brain tumor in which she went through 4 craniotomies with the 4th being for a shunt placement. In 2006, she underwent radiation to shrink the risedual tumor in which was left. The risidual was in the hypothalamus. Since the radiation she has developed Diabetes Insipidus. The radiation killed her patuitary gland and she now does not produce adrenal hormonesShe has good months and bad. I usually can tell when she has sodium issues because she gets very confused. SHe has been on DDAVP for 4 yrs now and it has helped but in the past few months I question it. She is having issues with being tired, shakey, sore, no confusion but she doesn't want to get out of bed. I need to know what is going on and how can I fix this issue with her before resorting to ER. Her thirst mechanism is not good but we push at leat 4 to 5 glasses of fluids a day. I need advice....I am her caregiver due to the fact that after her brain surgeries she has short term memory and some other medical issues. Please help me help my daughter. She does have an Endo.
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My Daughter's DI
- By triggs42
- Posted September 8, 2009 at 9:06 pm · 4 replies
- In Tips for caregivers
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- By PAMom
- Posted September 9, 2009 at 2:15 am
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Hi, my daughter has a metabolic disorder called propionic acidemia and she had a metabolic decompensation when she was about 5 mos. old which left her brain damaged. She developed DI after that brain insult and her metabolic physician has speculated that her hypothalamus was affected during her crisis. When your daughter acts confused, have you ever had her electrolytes checked? This summer my daughter has had a hard time with the heat and we have had to increase her water quite a bit. It's kind of a chot in the dark as to how much to give her, so we did have her electrolyes checked to make sure the sodium was not either too high or too low.
I have a question about when your daughter seems confused or "off": is her sleep affected at the same time? Does she awake prematurely or cry out upon waking during the night?
My daughter is also heavy and large (tall) for her age, do you think that could be due to a damaged hypothalamus?
- By Roja
- Posted September 9, 2009 at 8:57 am
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Hi Triggs42,
I have to say I would look at another cause than the DI. I have been on the nasal spray for 10 years and although I don't thirst (hence, drink as much as I should), I don't have issues of confusion, or physical issues per se. I would definitely ask to have a neurologist take another look at what might be happening where they did the surgeries. I have found that although my endocrinologists mean well; they can only check my creatinine, electrolytes, etc., but any other 'symptoms' I have they can't give a reason. Because my DI was probably caused by Erdheim Chester Disease, my brain has lesions in other places than my pituitary. So far, those lesions don't cause any symptoms, but I would be very surprised if after all the trauma your daughter has suffered from surgeries that her 'new' symptoms are not a result of those. Please be firm with your doctors-your daughter is worth it! Blessings, Roz
- By triggs42
- Posted September 9, 2009 at 10:49 am
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Well Ashley seems to be a little more herself today, not so shakey. She is tired and sore though. Yes when she gets confused and we call it loopy, she does seem to wake up in the night crying. It scares the heck out of me at times because of how she cries. I soothe her then she is fine. They never said that her weight was due to the hypothalemus damage but I am sure it has alot to do with it along with the fact that she doesn't produce the hormones like she should. She hasn't had a menstrul cycle since 2005 after her surgeries and they said she will never have children. I explained all that too her and at first she was sad but she accepts everything life has dealt her. She has had numerous CT's and MRI's and nothing is different in any of them. She akso has had a good team of Neuro's look at her from Uof M hospital and they say just sodium issues. She has her electrolytes checked every three months but I am going to call her endo and see if we can check them this week just to make sure. Better to be safe then sorry.
- By Steven60
- Posted October 25, 2009 at 8:12 am
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I just now saw that you did get replies to your posts Teresa. My apologies to PAMom and Roja. I better learn this site before I mess up anymore.
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