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Thread: Man of Mystery

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Question Man of Mystery

    ((((((HUGS TO ALL))))))

    Jon is a Man of Mystery.

    He likes to keep us on our toes, guessing, wondering what surprise he will give us next.

    Here's one of his mysteries~

    Periodically, like today, Jon develops an elevated temperature. His normal temp is 97.6. He runs low, because of hypothyroid and anemia. Today, his temp gently rose to 100.3. Currently, his temp is 99.7. It fluctuates from hour to hour sometimes.

    No Tylenol. I bathe him with tepid water (bed bath), which he emphatically does not appreciate, whenever his temp rises above 100. He is laying in his bed stark naked, which he also doesn't appreciate, and repeatedly tells me, "shirt," "blanket," to which I reply, "you have a temp," to which he responds, "NO!" Such fun. Good times.

    Symptoms: None. Nada. Zip. Zed. Zilch.

    He's peeing and pooping like a race horse. No trapped gas. No drooling. Nothing unique about his cough (it's chronic, of course, since he has a trache). No expressions of pain or discomfort. No open wounds. His toe is all healed, thanks to our fantastic new house call podiatrist, who will be here every 9 weeks to trim Jon's nails.

    He's well hydrated and nourished.

    His eyes are clear (usually bloodshot, when he's sick). He's quite verbal and articulate. He slept very well last night and for 9 hours, so he's rested.

    His SATS are 95. His heart rate is in the 90's, because he has a fever. Started out in the low 80's this morning.

    The weather here is mild in the 70's, windows open.

    If today's fever follows the same pattern as the many similar fevers before it, by midnight, Jon's temp will be normal or close to it, and we'll be able to put a light hospital gown (which we call "shirt") on him with no sheet.

    His nurses and docs are baffled, and we have no clue as to why Jon occasionally develops a fever.

    Jim likes to say, "It's hot today." And I say, "It was hot yesterday, and his temp was normal. Anyway, he's in the house, and we've got the A/C on!"

    Blaming it on the weather fails, when it occurs on a mild, pleasant, gorgeous day like today.

    These are my shot in the dark guesses:

    1. Hypothalamus, which controls body temperature. Michael also had unexplained fevers. Both Jon and Michael experienced Gelastic (laughing) seizures, which emanate from the hypothalamus.

    2. Hormones. I'm just remembering hot flashes in my forties (and still today ), and Jon is in his forties, middle aged, entering a period of hormonal change. Man-o-puase. Plus he does have an enlarged prostate. And his thyroid could be fluctuating in its levels too.

    3. Ruled Out: Bacterial infection in urine or lungs, because that would be continuous. Medications, same reason. Virus (as he has no symptoms).

    Would anyone like to volunteer a guess as to the cause of Jon's sporadic, mysterious fevers?

    If I could have an answer for just one thing that has happened with my boys, I would feel like I hold the knowledge of the Universe in my hands!

    Why were my boys born with their condition? What caused it? Genetic? What gene?

    We don't know.

    Seizures ~ Why? Where? What happened?

    We don't know.

    Enlarged Prostate ~ Is that from being unprotected during thousands of x-rays? Is it from being catheterized too many times? Is it cancer?

    We don't know.

    Hypothyroid ~ Is that from seizure meds? Is it from being unprotected during x-rays?

    We don't know.

    I've lost track of the number of times I have heard someone say to me, "I've never seen anything like this in all of my years of doing (XYZ). You're the first one." That is not comforting. Nor informative.

    I'd much rather hear, "Oh, yes. We've seen this many times before, and here's how we fix it."

    Jon is watching "The Muppets Take Manhattan" this evening for the second time. We love the Muppets, having grown up (literally) with Sesame Street. And in many ways, they are us.

    "It's not easy being green."

    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.

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    Rose, I know exactly what you mean! W'v certainly had our share of mysteries. starting with Moyamoya 11 years ago. Some mysteries never seem to get solved. I hope you get to the bottom of the mysterious fevers.
    Mary Grace

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    Tyler spikes unknown fevers as well. We have always figured they were seizure related. He does not maintain surface temp well. Will feel really hot and temp be normal or feel icy and have a temp. Go figure. At night he often sweats buckets and we know that is from him struggling to breath. Pain causes the seizure increase, seizure increase causes the breathing problems along with his severely receded jaw, lack of oxygen causes more seizures and he sweats with the effort to get air into his lungs. Our children are monkey puzzles with no real answers no matter how hard we search. Hoping you figure out Jon's current temps and it gets resolved with no actual illness.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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    Distinguished Community Member andromeda31's Avatar
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    Hi,

    Wish I had some answers for you, but I don't....just (((hugs))). Caitlin has only had fevers when sick (so far!). If I had to guess, I would go with #1, the hypothalumus though, based on what you wrote...

    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!!

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    I really don't know. My guess would be hormones because my body does all sorts of weird stuff when I'm hormonal. I'm sorry Jon is having fevers. btw since both your boys were born with the same thing it could very well be genetic and be a gene that effects a lot of body systems. Again don't really know. Just a guess based on what I read for school etc.
    Last edited by funnylegs4; 06-17-2013 at 02:29 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    Administrator/SYSOP Mike Weins's Avatar
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    My uninformed guess would be the hypothalamus or maybe the thyroid. Is Jon's water filtered or straight from the tap? A typical 2 or 3 stage filtration system does not remove flourides as they are carbon based filters. To filter out flouride you need a filter that uses activated alumina or ummm I forget the other method The reason I ask is that I believe that the flouride in tap water contributes to hyperthyroidism. I have no real proof, just a gut feeling. I'm also fairly certain it's benefits to oral hygiene are negligible. Reverse osmosis (basically turning water into it's pure elements) is considerably more expensive but will remove everything out of the water except for the water
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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Thank You All))))))

    I'll be writing this in spurts, as Jon has a fever again today, and it's up to 101, which is concerning, and not coming down, as it typically does. I posted this thread Saturday. Sunday, no temp, and Jon was in good shape. Monday, early evening, low grade temp, which resolved by bedtime. Today, Tuesday, normal temp in a.m. gradually rose throughout the day to its current 101. But in between, it dropped down to 100.5. Then back up. He's not liking the bathing. Hard to cajole him, when he isn't feeling well.

    Just took Jon's temp, and in 40 minutes, it has dropped to 100.1! A whole degree!

    His SATS are okay at 94, but his heart rate is 98-105. Not good.

    Jon's new bed is being delivered tomorrow!

    We've been waiting for the call to schedule, and the gal offered Thursday at noon. That's no good, because I will be in the dentist's chair, for the first time in 6 years (due to Jon's crises preventing me from going in) having a root canal. So she wrangled a delivery for tomorrow between 11 and 2:00. We just pray that Jon is well enough to get out of bed.

    We have to move his rental bed out of his room and put it in Michael's room (formerly our family room) until Thursday, when the rental DME will pick it up and take it away. We could have done that tomorrow, but the timing is too unpredictable, and we don't have room on our street for both delivery trucks.

    We have to deflate and remove his mattress from the rental bed, and I will be washing the mattress cover at long last after all of those formula spills from the Kangaroo (Court) pump.

    Then Friday, Jon's nurse will visit to change his catheter. I think I am going to ask for a blood work up on Jon. Maybe there will be a clue there. Might do a UA too, just for the heck of it, since our nurse has to go to the lab to drop off blood anyway. However, I have no reason to believe that Jon has a UTI, since he has no symptoms. Output, color, smell ~ all good.

    By Saturday, Jim and I will be in a puddle of utter exhaustion!!!

    It's just a lot to do in one week, especially when Jon's been having these mysterious fevers. We ain't young'uns anymore!

    Mary Grace ~ "Some mysteries never seem to get solved." So true, so very true. After all of these years, one might think that I'd be used to mysteries and the lack of solutions, but alas, I only crave for answers to just one thing. Just one thing. Anything! I'll take anything!

    "I'll take 'Answers' for $400, Alex."

    "The answer is 'Hypothyroid.'"

    Buzzzz. "What is the cause of my son's unknown fevers?"

    Ding! Ding! Ding! "Yes!"

    Applause!!!!!


    Tamie ~ My heart breaks for Tyler and for you and your husband, as this must be so worrisome and wearing for you all. Has Tyler ever had Gelastic seizures, or do you know whether his hypothalamus is involved in his condition? Michael had similar issues with sweating, as he seized constantly, like Tyler. Jon not so much. But I do think it's neurologically related somehow. Unless it's hormone related. Oh, I didn't make any progress there, did I?

    Lisa ~ I'll record your vote for hypothalamus! It is a likely suspect.

    funnylegs4 ~ Your guess is a good one, as Jon is hypothyroid and going through his middle aged manhood changes possibly. Who knows for sure when that starts, but it's typically in the 40's and it seems to last for eternity!

    For women, it's peri-menopause followed by menopause, followed by post menopause. For me, peri-menopause was far worse than menopause, which was worse than post menopause, but all of it was better than the alternative, if you get my drift. And none of it was really that bad. I eat soy and use wild yam, and that has been sufficient to keep me somewhat stable. And Jon does have an enlarged prostate, so that plays into the mix.

    Good point about the genes. Of course, we don't have an etiology, but my boys' condition is presumed genetic, for obvious reasons. And they have been seen by some famous geneticists from around the globe, when they were toddlers and enrolled at a university multi-disciplinary program. Of course that was nearly 40 years ago, and a lot has changed in genetics. We just haven't chosen to pursue it.

    Mike ~ Jon drinks bottled water, to which we add Real Salt to keep his sodium levels in a decent range. We live near a former Superfund toxic waste dumpsite, and I never will trust our groundwater, even though we're told some of it is imported (and I worked in environmental engineering, so I know what's in that) and some of it is well water.

    Lots of theories about flouride, and yours could be right on. Jon has hypothyroid, not hyperthyroid, but any kind of thyroid issue is a major problem. Most people don't realize how vital the thyroid is.

    Any time a person has an x-ray of any kind, a lead cover should be placed over or around the thyroid, as well as the groin. X-ray techs may say, "it doesn't matter," and they most likely will say that, as I've heard it hundreds of times. But it does matter. A LOT.

    Thank you all for your input and observations. Jon's temp remains at 100.1, so it's not going up, and his heart rate is holding in the mid 90's. Meanwhile, we traded out his boomerang pillow for a regular pillow, so he has less covering his shoulders and neck to increase body temp.

    Please keep good thoughts going for Jon's temp to normalize, so that he's able to get out of bed tomorrow for the bed delivery. This bed better be the best thing since the Moon Landing!!!

    I love 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.

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    Hi Rose. Yes, Tyler has multiple gelastic seizures along with 9 other seizure types (single or clusters). Have no idea if his hypothalamus is involved or not, never been addressed. Just know it is neurological with Tyler along with physical decline due to the underlying disease causing the Ohtahara symptoms.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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    ((((((Tamie))))))

    My understanding is that Gelastic seizures emanate from the hypothalamus, so that might be an explanation for Tyler's body temperature fluctuations, as that's the body's thermometer. Bless his heart. What an ordeal he endures.

    Today, Jon's temp is normal, SATS went up to 98, and heart rate is in the 80's. This after a temp of 101 most of yesterday afternoon/evening. That doesn't sound like an infection. It's so inconsistent and unpredictable.

    New bed was delivered and assembled today. Mattress fits snuggly, so less chance of it sliding or moving down in the bed. Headboard is removable, and I should be able to easily pull Jon up with his bottom sheet. The bed practically glides, and it is very light weight compared to the rental bed monster. We're astonished at how much room we have in his bedroom now!

    Jon enjoyed being out of bed. Now that he has a more manageable bed, we'll be able to get him out more often.

    FINALLY! That's taken care of, and we can cross it off of our list!

    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.

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    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Glad to hear the bed is great so far....hope it continues to work out better! I bet it feels nice to have something go right! :) Glad to hear that Jon's fever is gone, hope it stays away for a long while...

    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!!

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