Page 3 of 4 FirstFirst 1234 LastLast
Results 21 to 30 of 32

Thread: Man of Mystery

  1. #21
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,039
    Blog Entries
    1

    Default

    ((((((funnylegs4))))))

    I don't know any geneticists. I'd probably look for a major medical school to find one associated with the university and its hospital. All of my boys' genetic testing was done at a major university (assorted ones, country-wide, with zero results). Of course, that was decades ago.

    I must remember to add Chobani to our grocery list!!! Tomorrow is grocery day ... so ... I'm on it!

    ((((((Sue))))))

    Thank you, as always for your kindness and sharing of your knowledge and experience. Jon isn't having seizures, thankfully. His only symptom is an elevated temperature. Jon is fed via Gtube and cannot tolerate real food due to gut issues, so he's unable to have nuts, unfortunately. I'm glad that almonds and peanuts help to control your seizures. It's wonderful when something natural is effective.

    ****** U P D A T E ******

    No fever for 2 days! Good SATS and heart rate.

    Jon's nurse visited today to change his catheter and draw blood. Both went exceptionally well! All vitals are top notch. Lungs are clear.

    While examining Jon, his nurse noted that Jon's tongue is white. THRUSH. Yeast!

    She suggested that this could be the potential culprit in Jon's intermittent, unpredictable fevers. It could also be in his throat, around his trache, causing the periodic excessive saliva and his coughing. She called Jon's doc and requested a script for Nystatin oral solution so we can clean Jon's mouth and get rid of the yeast.

    So, thanks to our fantastic nurse, we now have a possible clue!!! YAY!!! I wish that I could give Jon yogurt or acidophilus. Or Chobani!

    Please keep your fingers crossed that this IS the answer. Easy to treat. Thank you all!

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  2. #22
    Distinguished Community Member andromeda31's Avatar
    Join Date
    Oct 2006
    Location
    Wisconsin!
    Posts
    664

    Default

    Hi Rose!

    Glad to hear Jon is doing better....hope the Nystatin does the trick and that the fevers stay away!! It's been crazy here or I would write more....was up til 1am 2 nights in a row just catching up on stuff around the house so tonight I am going to bed early!! I have bought Chobani for my kids and they liked it...but it was in the yogurt tubes (for kids) so they didn't even know it was different than what they get regularly. :)

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  3. #23
    Administrator/SYSOP Mike Weins's Avatar
    Join Date
    Oct 2006
    Posts
    952
    Blog Entries
    1

    Default

    How long would it be before knowing if thrush is the cause? I've heard of thrush once back in high school but that was a long time ago
    Question: Why can't I post links or pictures?
    Question: Why can't I have a signature, avatar, or profile picture?
    Question: What's wrong with my account?

    Answer: You are in the "registered users" user group. This group is very limited in what it can do. This will annoy spammers to no end Just keep posting once you have been registered for 30 days and have made 11 posts your account will be "unlocked".

    It's really easy to put someone on ignore and it's strongly recommended that you do so with people who's posts you don't like.

    Step 1 - log in
    Step 2 - click on the "settings" link
    Step 3 - click on the "edit ignore list" link on the left side of the screen
    Step 4 - type (or paste if you copied and pasted it) the username of the person you want to ignore
    Step 5 - click the "ok" button on the right of the screen

    Easy peasy and will lower your blood pressure. One important note though, this won't hide quoted posts. It's an oversight on the developers part and it's not an easy thing to "fix." So if someone quotes someone you have ignored, you'll see the quote.

    Alternatively when you click on a person's name and view their profile page, underneath their avatar, there is a option that says, "Ignore this person". Click that link and then click the yes button.

  4. #24
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,039
    Blog Entries
    1

    Lightbulb Could This Be The Reason?

    ((((((Lisa))))))

    The grass doesn't grow under your feet, Sister Friend!! I wish I could borrow a bit of your energy. But then, when I was your age, I had a whole lot more energy than I do now. Thanks for the info on the Chobani. I went to the dentist today for another 2 hour dental fest! I go back on Monday for more of same! I need a vat full of Chobani!

    ((((((Mike))))))

    Good question, and I have no idea what the answer is.

    Thrush is yeast overgrowth on the tongue. It could be caused by a variety of things, usually antibiotics. In Jon's case, it could be his seizure meds, or putting his hand in his mouth (which he does periodically), or the trache itself. Even his chronic fluid retention could be a culprit.

    ********* U P D A T E *********

    Yesterday, Jim picked up Jon's prescription for Nystatin. It's an ointment/cream. For, oh ... jock itch, perhaps?

    Error in delivery of message from Jon's nurse, to receptionist, to doc's assistant, who then called the pharmacy with the script. So, I called the doc's assistant, and hopefully a new script for an ORAL solution has been sent in.

    Jon is running a temp today, went up to 100.2 and is down to 99.7 now. I think I've discovered a common occurrence associated with these fevers!

    Jon's urine output is great during the night, but sometimes in the daytime, he slows way down. Like today. In 3 hours, he only put out 75 cc's. (That's a piddle.) Then, bing! Temperature! He's holding fluids!

    In reviewing his chart over the past few weeks, I did notice that his temps primarily occurred, when his urine output slowed down.

    More than a coincidence ~ a pattern.

    So, that brings up the question: What is causing his urine to slow down? Spasms? If so, treatment is usually a drug. Do I want to give Jon a drug to treat a non-threatening fever, which resolves on its own typically? Probably not. Okay. No.

    I think I'll run my theory by Jon's nurse to get her opinion.

    No phone calls with the results of Jon's blood work, so I'm going to presume that this means nothing untoward or extreme was found warranting an emergent call to me. Right? Isn't that a good way to look at it?

    Thanks to all for your good thoughts and prayers and for hanging in there with us!

    Our Superhero Mystery Man!

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  5. #25
    Distinguished Community Member andromeda31's Avatar
    Join Date
    Oct 2006
    Location
    Wisconsin!
    Posts
    664

    Default

    Hi!

    Oh my! Hope the new Rx is in! Wondering if you were able to access Jon's results online yet? When C turned 12 in January, I lost access and boy do I miss it! I thought I would be able to set up an account of her own (I have an email address set up for her for such things) but no, not til she is 18 can she have her own. Grrr. They do that since when kids turn 12, parents can only access certain things and they are not able to filter it on the online portion. But I am welcome to call and ask the results...kindof stupid in my opinion! And as a former programmer, I find it hard to believe they can't set it up to filter those certain things by age. But oh well! I thought setting up her own would circumvent those rules. Still am thinking about how I can work around that yet, like get guardian status now or something...anyway! Hope you all had a good day! :)

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  6. #26
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,039
    Blog Entries
    1

    Default

    ((((((Lisa))))))

    I still haven't been able to download Silverlight on our new computer, and that's the application that I need to access the medical portal, so that I can see Jon's medical records/test results, and communicate with his doctor and Nurse Practitioner. I have to contact Apple to find out why I can't download it, as well as download other updates. I am not a happy camper with our new computer.

    I must confess that I don't understand the filtering of which you speak. Is this to protect Caitlin? What's the deal with being 12? She's still a minor!

    What I do recall about our medical portal is that I have to lie and register as Jonathan. These portals just don't seem to be designed to accommodate teens and adults with disabilities, whose parents are their primary care givers and decision-makers.

    Our home health agency once had a lab tech, who contacted patients with results. But her position was eliminated. Jon's nurse might have the results. I'll likely call the doc's office next week and remind the doc's assistant for the thousandth time to send me a copy of the results.

    Because Jon has no overt symptoms of illness, I am not urgently concerned about obtaining the results. If Jon was ill, or had serious, undeniable symptoms, then I would have been on the phone to the doc's office the next day. I'm guessing that the tests reveal nothing untoward. Last year about this time, we ended up in the ER, because the on-call doc in our doc's practice overreacted to Jon's hemoglobin results. So I know that the tests are reviewed when they come in.

    It's quite hot here today, so we have the a/c running, which is something we try to avoid. I guess you and the East Coast are getting OUR rain! Jon's temp is in a normal range. His SATS were low this morning, requiring suctioning and a breathing treatment.

    My theory is that we have two things going on here:

    1. Jon's thrush is causing issues with his trache, coughing, mucous, etc. The thrush is the culprit with maintaining good SATS.

    2. Jon's urine slow down on certain days seems to correlate with developing a fever.

    Both scenarios make sense logically. I've been mistakenly trying to tie them together. I don't think one has anything to do with the other.

    Jim did pick up the oral Nystatin today, and so far I've given Jon two treatments. He likes the taste of it, and he's willing to comply with me sticking a foam swab in his mouth. With the first treatment, I suctioned his mouth to prevent him swallowing the Nystatin. But the instructions indicate that it's best if it is left in the mouth for a couple of minutes before expectoration. Well, Jon doesn't spit, so he swallowed it!

    The prescription is 4 times a day, which would mean that we'd have to swab Jon's mouth while he's sleeping. What kind of dosage is this? Hey! Wake up, we have to swab your mouth! That's ridiculous! In the hospital, I recall that it was given 3 times a day, so that's what we'll be doing at home. I have to make sure that he can tolerate this. He was fine with it in the hospital, but it was a different consistency than what we have now from our pharmacy.

    At least it isn't jock itch cream. I checked. Several times!

    Thanks for your positive thoughts and support!

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  7. #27
    Distinguished Community Member
    Join Date
    May 2008
    Posts
    808

    Default

    How's Jon doing? Any improvement?
    Yes we are getting RAIN on the east coast (NY) Everyday it's rained some. My tomatoes are not doing well in the garden. I'm thinking too much rain not enough sun.
    Mary Grace

  8. #28
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,039
    Blog Entries
    1

    Thumbs up

    ((((((Mary Grace)))))

    Thank you for asking about Jon. He is doing well. No fevers and urine output has been good. The Nystatin takes awhile to work, so we're hoping to see less coughing and higher SATS in a few days, although, he's been better in that regard in the last day or so.

    How is Kathleen? And you and your husband? Kathleen's surgery date is approaching, and I hope that you are all feeling confident and comfortable. I'll be sending up special prayers for you all this week.

    Extra ((((((HUGS))))))

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  9. #29
    Distinguished Community Member andromeda31's Avatar
    Join Date
    Oct 2006
    Location
    Wisconsin!
    Posts
    664

    Default

    Hi!

    Glad to hear Jon is doing better! I don't know much about apple products. My computers have always been windows machines. I have an ipod touch that I won...I was going to sell it when I won it, but Brian went on about how great those are, like a minicomputer blah blah blah...so I kept it. Still on the fence! It is nice to do wireless internet with it but I hardly ever need to do that as if I am somewhere I need to get online, I usually have my laptop along. I don't really like using iTunes very much, but am forced to for doing music on the ipod. And we just got Brandon an ipod too so I am really stuck with iTunes! I am just set in my Microsoft ways! LOL! :)

    Not sure how/why they chose age 12 as a cutoff for privacy, maybe they are worried about parents finding out about s-e-x stuff discussed with a doctor or something. It actually came up today as I was in Milwaukee and signed C up for myChart (the new online thing at the children's hospital). I can only be a 'proxy', so just like our local one, I can't see everything. The funny thing was Caitlin had to sign a paper for me to sign up as proxy. She was sitting there in her w/c with a tray on and I stuck the paper by her and said "write your name on this line here" (she can't write) I held my hand over hers and assisted her in printing her name. Did this right in front of the lady! And it was all good! LOL! Apparently this is so new they must not have policies in place for developmentally delayed kids signing up. But, I figured, strike while the iron is hot! :) I did ask about C getting her own login and got the same answer, age 18. I guess this is something they don't consider when implementing these accounts...that all clients might not be able to access them on their own.

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  10. #30
    Distinguished Community Member
    Join Date
    May 2008
    Posts
    808

    Default

    Rose so glad to hear things are getting better for Jon.
    Kathleen is doing well. Of course we are getting more nervouse the closer her surgery gets. She had her blood work and urine cultures done on Monday. We will get a call on Friday as to the time of surgery. Starting Friday afternoon she will be on clear liquids.(I'm waiting till VERY late Friday afternoon since they didn't give a specific time). I believe surgery will be about 5 hours.

Page 3 of 4 FirstFirst 1234 LastLast

Similar Threads

  1. Replies: 4
    Last Post: 09-03-2015, 05:13 PM
  2. Greetings - and a mystery to solve
    By Robert_Sch in forum General Neurology & Rare Disorders
    Replies: 1
    Last Post: 05-05-2013, 01:31 PM
  3. My doctor tells me, "You're a mystery"
    By LadyLuck in forum New member introductions
    Replies: 6
    Last Post: 12-13-2012, 11:42 AM
  4. Replies: 0
    Last Post: 12-02-2011, 12:00 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.