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teen fasting and I'm worried and other stuff that won't make sense


MamaBearTeacher
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Thank you Pen! I forgot to say that his urine is very dark in the morning. It is an orange-brown color. This makes sense though. We don't give him or drink after dinner because otherwise he pees all over his bed and that prevents him from falling asleep.

 

The anxiety about sleep happened as an infant. Why would an infant react that way? he did have sensory issues from birth and he was fussy.

 

Now he has the usual anxiety people with bad insomnia have. Though many nights he sleeps fine. We often have to remind him to lie down and not keep his head up with his hand.

 

We have tried battling dysbiosis and constipation most of his life and have not succeeded.

 

Sleep hygiene: yes, we do that. Routine, quiet time before bed. No videos, computer. Soft music before bed.

 

Vitamin D: He used to be normal and last year he tested low and I am supplementing.

 

He did not test low in vit b and c. B vitamins make him hyper and give him bad moods so I don't give him those. I have given him vitamin c a lot. I have seen no effects. It is his minerals which are low.

 

Exercise sometimes causes constipation because then he is too tired to have a bowel movement. Sometimes it causes bad moods. Otherwise I have not seen any effects other than he likes it. The only exercise he can do much is walking so we go on hikes a lot.

 

I tried melatonin years ago at low dose and it did nothing. he might need a very high dose and I am afraid.

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Thank you Pen! I forgot to say that his urine is very dark in the morning. It is an orange-brown color. This makes sense though. We don't give him or drink after dinner because otherwise he pees all over his bed and that prevents him from falling asleep.

 

The anxiety about sleep happened as an infant. Why would an infant react that way? he did have sensory issues from birth and he was fussy.

 

Now he has the usual anxiety people with bad insomnia have. Though many nights he sleeps fine. We often have to remind him to lie down and not keep his head up with his hand.

 

We have tried battling dysbiosis and constipation most of his life and have not succeeded.

 

Sleep hygiene: yes, we do that. Routine, quiet time before bed. No videos, computer. Soft music before bed.

 

Vitamin D: He used to be normal and last year he tested low and I am supplementing.

 

He did not test low in vit b and c. B vitamins make him hyper and give him bad moods so I don't give him those. I have given him vitamin c a lot. I have seen no effects. It is his minerals which are low.

 

Exercise sometimes causes constipation because then he is too tired to have a bowel movement. Sometimes it causes bad moods. Otherwise I have not seen any effects other than he likes it. The only exercise he can do much is walking so we go on hikes a lot.

 

I tried melatonin years ago at low dose and it did nothing. he might need a very high dose and I am afraid.

He sounds as if he may be chronically dehydrated. Orange-brown urine is a sign of extreme concentration. (Or maybe even a bladder infection, but since he sleeps so much and eats little,I suspect dehydration). This could affect his sleep as well. Some people have a zero thirst reflex, so maybe trying to get him to drink more would help the constipation as well.

 

Many pediatricians think limiting fluids before bedtime to stop bedwetting is not a great practice. It makes kids wake thirsty.

 

Hope all gets better <3

Edited by Sandwalker
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The age he got the problem with sleeping and eating issues and the description of his sleep patterns really really make me think of depression.  There is no test for depression.  I would think in a minimally verbal person like your son is the only treatments would be medication.  I think looking for a psychiatrist who has experience with special needs of the sort your son is would be important.  
 

Does your son have a regular doctor who overseas his care?  IF so, maybe he could make enquiries to find a psychiastrist who has that experience.

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Dark brown urine can be a sign of muscle breakdown due to a metabolic condition. I assume, though, the color you are describing is more dehydration. 

 

He's sleeping a lot, sleeping at the wrong times, or not sleeping at all? 

 

Sleeping a lot--would strongly think metabolic condition, such as mitochondrial (UMDF.org) or a more common one that wasn't detected. My son does have a metabolic condition. Many of these cause excessive sleep. 

 

Sleeping, but at very wrong times, I would think about a severe delayed sleep phase disorder. My son has this. His body clock gets way off. He's being treated. For reference, in case it helps. He had a sleep study (one of many for him) two weeks ago. They hooked him up at 7:30, hoping for sleep by 9:30 with melatonin. He finally fell asleep at 4:30, and they woke him at 5:30--after letting him go a sleep cycle to rule out apnea (he had surgery for that). He will routinely stay up until early morning like that, resulting in chronic sleep deprivation and insomnia. He is now on a medication to augment the other work we're doing for the sleep phase issues. The sleep medicine doctor told me this disorder generally gets really bad around 13, give or take a year. That is what happened with my son.

 

Not sleeping at all--I would still think major sleep disorder, but I have not encountered this. There may be other things to consider. 

 

To sort either of the last two out, do consider taking him to a children's hospital sleep medicine clinic if you can. Those people, at least here, really know what they are doing. Your son clearly needs help to sleep. I feel for all of you. 

 

Just to mention what we do for the sleep phase/circadian rhythm disorder, in case it helps:

small dose 0.5 mg of melatonin at 5 pm (this is most important and helpful for him),

blue light blocking glasses in the two hours before bed/at least avoiding screens or other heavy blue light,

bright light therapy with a light box 30 minutes in the morning after waking at a consistent time, within an hour (theoretically very important, but it alone doesn't fix my kid/he needs the afternoon melatonin to feel at all tired at an appropriate time; I know waking is impossible for you right now),

After this latest study, he was just prescribed a medication called Rozerem to give more of a boost to what we're already doing to reset that really messed up body clock. 

 

My son has some straight up insomnia as well due to his experiences, and we do some things (exercise, night routine, relaxation techniques etc) for that as well. The chronic insomnia can also keep a person up. The difference, for my son, is during insomnia he at least feels tired at a normal time, even if he struggles to sleep. With the sleep phase issues, he doesn't feel tired until closer to morning time, feels tired most of the day, and then finally has energy in the late afternoon or evening (and it can be worse I am sure). His body clock is just shifted.

 

 

Edited by sbgrace
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I had insomnia issues last year and earlier this year due to migraines.  Is it possible that he suffers from headaches and doesn't know how to tell you?

 

Also, the migraines make even tiny sounds exponentially loud.  One of the kids tapping her fingers on the table in another room jars me like someone banging a hammer on the desk that I'm sitting at.  Sometimes someone clicking the computer mouse on the other side of the room is enough to make me feel bonkers.

 

I have similar problems with light.  Sometimes just the tiniest bit of light (even less than a nightlight) is enough to send my migraine out of control.

 

And, yes, sometimes depression starts to creep in.  People I know wouldn't have any idea that I was suffering with depression symptoms (I've not been diagnosed), but there were days when I didn't want to do anything and didn't want to be with anyone.  Nothing seemed worth doing.  Except sleep, which often eluded me.

 

I hope that you find answers for your son.  I wouldn't rule depression out and I would see if you can figure out if there are sensory triggers that are contributing to his issues.

 

:grouphug:  :grouphug:  :grouphug:

 

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Thank you Pen! I forgot to say that his urine is very dark in the morning. It is an orange-brown color. This makes sense though. We don't give him or drink after dinner because otherwise he pees all over his bed and that prevents him from falling asleep.

 

...

Exercise sometimes causes constipation because then he is too tired to have a bowel movement. Sometimes it causes bad moods. Otherwise I have not seen any effects other than he likes it. The only exercise he can do much is walking so we go on hikes a lot.

 

 

I was asking about urine colors and odors, and changes that might happen after it sits because of PKU possibility (or something very similar to PKU but that might have passed the screening tests, yet still had similar effects), or a few other things that have ways that a lay person can see or smell something with regard to the urine that could help to know whether or not to get a doctor to follow up further.  If you look things up on some of the conditions i had asked about, you can see things about urine appearance, changes, smell...

 

 

 

 

 

I've been under the impression that for many people lack of exercise causes constipation. 

 

Have you tried  fecal transplant therapy from a healthy sibling (assuming he has a healthy sibling) donor?  I gather that sometimes works for resistant dysbiosis.  (Actually, I think I've heard it has a pretty much total success rate, but probably your ds would be an exception for whom it would not work or would be impossible to do for whatever reason.  I think I've got the gist now, that nothing is possible with him, or works opposite of expected, or cannot be done because of some reason.)

 

 

So, sounds like you have a nonverbal kid with dysbiosis, dehydration, low mineral status, night time insomnia, daytime sleeping,  bed-wetting, clothes removal so perhaps impossible to keep an adult Depends like thing on, eating inedibles, bad moods, low exercise, extreme sensory problems, probably headaches (likely with dehydration), and constipation (ditto), possilby stomach pain, possibly untreated PKU-like type issues so possibly some brain damage, low vitamin-D, and where pretty much anything you try to do seems to make things worse.    ?????

 

 

And no doctor, conventional or alternative whom you've tried seems able to help.    ??????

 

 

 

Did I make errors in that summary?  Is there more ??????

 

 

 

 

This seems terribly hard!  How are you managing, and how are your other children doing?

Edited by Pen
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for example:

 

"Alcaptonuria is another inherited disease involving this pathway. ... homogentisic acid accumulates in the blood. The kidney excretes this excess in the urine, and oxidation of homogentisic acid by the air turns the urine black. "    sorry the source for that is lost.

 
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He sounds as if he may be chronically dehydrated. Orange-brown urine is a sign of extreme concentration. (Or maybe even a bladder infection, but since he sleeps so much and eats little,I suspect dehydration). This could affect his sleep as well. Some people have a zero thirst reflex, so maybe trying to get him to drink more would help the constipation as well.

 

Many pediatricians think limiting fluids before bedtime to stop bedwetting is not a great practice. It makes kids wake thirsty.

 

Hope all gets better <3

 

 

I agree..

 

 

No matter what else is happening, and no matter what SN problems the child has, dehydration sounds like it is probably quite serious for him.

 

 

I wonder if maybe he needs to be hospitalized for a few days so that he can get hydrated and get his sleep and other problems evaluated with staff able to do bed changes or other things that may be needed.

 

A lot of the symptoms mentioned could be due to dehydrations including his moods, bad, depressed or otherwise. Sleep problems, constipation, headache, etc.  It could be that dehydration is key, and certainly it is something that could be alleviated.

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He isn't sleeping too much overall.  It is just that his sleep is all over the place.  Some nights sleeps 11-9 am.   Other nights he sleeps for 5 hours.  Other nights he stays up all night.  Last night, he stayed up until at least 3 am when we discovered he was wet.  Then he slept past 1 pm.  He stays dry once he falls asleep but often pees all over his bed if he is lying there a long time.  The sleep issues coincided with the time his diapers started leaking.  The sides of the diapers are not waterproof and he sleeps on his side.  Also, he started taking his diaper off while sleeping.  For a while I would wake in the night to change his sheets.  

 

He has been tested for all metabolic and mito disorders though there are some doctors who believe that a person can still have a mito disorder that is hard to detect.  I find it very hard to take his temperature.  My basal body temperature is on the low side.

 

I am finding it hard to fathom depression right now.  Lately he smiles a lot of the time.  For years, especially as a preschooler he was serious and screaming all the time.

 

I really doubt they would admit him to hospital and if they did they would drug him a lot because they would not be able to handle his behavior.  He has reacted so badly to so many supplements that I don't know what drugs would do to him.I wonder about dehydration though.  Is there a urine test for this?  His blood also looks dark when we do blood tests.  The nurses just tell me that different people have different color blood.  I do give him about 8 cups of water a day and more in the summer.  For years, before and after he was born I struggled with a dehydration feeling.  The doctors did not know what i was talking about and just told me to drink more water which did not help.  I felt really good each time after I gave birth and they gave me those IV fluids.  

 

 

"So, sounds like you have a nonverbal kid with dysbiosis, dehydration, low mineral status, night time insomnia, daytime sleeping,  bed-wetting, clothes removal so perhaps impossible to keep an adult Depends like thing on, eating inedibles, bad moods, low exercise, extreme sensory problems, probably headaches (likely with dehydration), and constipation (ditto), possilby stomach pain, possibly untreated PKU-like type issues so possibly some brain damage, low vitamin-D, and where pretty much anything you try to do seems to make things worse.    ?????

 

 

 

And no doctor, conventional or alternative whom you've tried seems able to help.    ??????"

 

YUP!  

 

 

 

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You mention the diapers being an issue. Can you call the diaper provider and ask them for several other brands/styles to try? Have you added pads inside the diapers? If he goes to a special school, ask them for ideas/samples.

 

I work at a school where many/most of the teens and young adults are in diapers or "briefs" as we call them. There is a huge variation in quality between brands and styles. Many of our young men also strategically placed pads in their briefs. Another option is to double brief and tear the lining of the first brief a bit.

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He isn't sleeping too much overall.  It is just that his sleep is all over the place.  Some nights sleeps 11-9 am.   Other nights he sleeps for 5 hours.  Other nights he stays up all night.  Last night, he stayed up until at least 3 am when we discovered he was wet.  Then he slept past 1 pm.  He stays dry once he falls asleep but often pees all over his bed if he is lying there a long time.  The sleep issues coincided with the time his diapers started leaking.  The sides of the diapers are not waterproof and he sleeps on his side.  Also, he started taking his diaper off while sleeping.  For a while I would wake in the night to change his sheets.  

 

He has been tested for all metabolic and mito disorders though there are some doctors who believe that a person can still have a mito disorder that is hard to detect.  I find it very hard to take his temperature.  My basal body temperature is on the low side.

 

I am finding it hard to fathom depression right now.  Lately he smiles a lot of the time.  For years, especially as a preschooler he was serious and screaming all the time.

 

I really doubt they would admit him to hospital and if they did they would drug him a lot because they would not be able to handle his behavior.  He has reacted so badly to so many supplements that I don't know what drugs would do to him.I wonder about dehydration though.  Is there a urine test for this?  His blood also looks dark when we do blood tests.  The nurses just tell me that different people have different color blood.  I do give him about 8 cups of water a day and more in the summer.  For years, before and after he was born I struggled with a dehydration feeling.  The doctors did not know what i was talking about and just told me to drink more water which did not help.  I felt really good each time after I gave birth and they gave me those IV fluids.  

 

 

"So, sounds like you have a nonverbal kid with dysbiosis, dehydration, low mineral status, night time insomnia, daytime sleeping,  bed-wetting, clothes removal so perhaps impossible to keep an adult Depends like thing on, eating inedibles, bad moods, low exercise, extreme sensory problems, probably headaches (likely with dehydration), and constipation (ditto), possilby stomach pain, possibly untreated PKU-like type issues so possibly some brain damage, low vitamin-D, and where pretty much anything you try to do seems to make things worse.    ?????

 

 

 

And no doctor, conventional or alternative whom you've tried seems able to help.    ??????"

 

YUP!  

 

 

 

a minimal check for dehydration would be to see how his skin bounces back or doesn't when you do a squeeze test, but I can't explain that in writing well enough.  Maybe it is on web somewhere.  w/ the color of the urine and the constipation though dehydration seems likely... he may need a hydration formula with electrolytes, not just water...  water, some salt, banana is one example, some people use coconut water...google it.

 

Generally dark urine like you described sounds like over concentrated urine / dehydration.   IME if a person has had lots of water they will have urine that is nearly clear UNLESS they have something that is causing it to be a different color. And generally neither dehydration nor something causing the urine to be dark like that seems IME to be okay.  When I worked in a medical situation that would have been a thing to bring to a doctor's attention, not to dismiss as just something that some people have.  

 

I suppose that there is a range of normal color for blood, but too light and too dark would tend to be indicative of various problems. (anemia otoh, or lack of O2 otoh, for example)

 

If you can get the diaper situation improved, that would probably help him and you both, a great deal, with more ease and comfort at night and maybe daytimes too.  

 

And if he does have dehydration and you can get that turned around, that would be great.  Maybe it would turn out to be a t root of some other issues like constipation and head pain that could then start to get turned around too.  Dehydration also can cause bad moods, so maybe it could help with improved mood which then could help make it easier to get him medical care.

 

I do think he needs you to make another effort to get him some suitable medical help.

 

Even if he doesn't now go to a special school, maybe visiting one and getting ideas about how they could help him would be useful, might get some people on your team, and might not only get some diaper brand help like Ottakee suggested, but maybe also referrals to doctors who deal well with SN kids.

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