Menu
Jump to content

What's with the ads?

MamaBearTeacher

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

Recommended Posts

I have posted about my special needs son and his trouble sleeping before.  Sometimes he just cannot fall asleep at night.  I don't know what happened last night.  He seemed asleep when I woke up at 3:00 am but it's hard to tell in the dark with blankets on his face.  Anyways, he slept until 5pm this evening.  There are reasons I cannot wake him up which I don't want get into and anyways he won't get up.  He has not eaten in over 24 hours now and will not sit up to drink.  This has happened before.  He has been tired the past couple of days and took a couple of hours to get up each day.  We have done blood tests in the past and nothing came up.  Maybe we missed something.  We have tested thyroid, blood sugar.  Anything else?

 

He is pale, even in summer.  He loves food and eats really healthy most of the time, though this sleep problem is cutting into his eating time.  He is thin, I think because of this.  On the days he is awake I make him an extra meal.  

 

I want him to be healthier!  I worry about this "fasting".  I worry about him.  Please pray.

 

Anyways he has been in his bed since 11 pm last night, lying down and seemed to be sleeping most of that time.  Now he will not get up and drink water and he still looks really tired.

 

We have seen doctors.  I have yet to get anything useful from them.  They will run most blood tests though if you have suggestions.

 

I am getting tired and depressed because I never know when we will have a day like this, when there will be an "all-nighter" and I have to be quiet all day.  It's draining on the whole family.

 

 

  • Like 1

Share this post


Link to post
Share on other sites

He sounds depressed.  Is he on any anti-depressant?  If so, perhaps the dose needs adjusting, or he needs a different med?  The only clue I  had to my son with autism's depression (he is pretty much non-verbal now) was him losing interest in things and not eating much - 6 feet tall, normally 170ish, he got down to 134 before generic Celexa helped perk him up.  His fraternal twin, his depression (part of bi-polar syndrome) also makes him waste away from lack of eating and sleep as much as possible (hibernating to avoid life). 

 

AutismMan also can  get badly constipated when depressed/not eating.  But it takes a CAT scan to figure this out, since he won't tell anyone how he feels.  Oh, and I can often get him to drink or eat some if I ask does he want the doctors to have to stick a tube in his arm to give him drinks, or a tube into his tummy to feed him.  I ask him kindly, not like a threat, but to make him aware what not eating/drinking can lead to. 

 

These "kids" are not easy to figure out sometimes :-(   good luck!!

 

 

Edited by JFSinIL
  • Like 5

Share this post


Link to post
Share on other sites

He just drank 2 cups of water! Hooray!  He is eating some crackers.  

 

I CANNOT wake him up for reasons I do not want to post about.

 

This is not a depression issue or a typical teen wanting to sleep in or lying around.  This is medical.  You see the fatigue on his face.  

 

His behavior has been good lately.  He is smiling more than usual.  He is as cooperative as possible for him.  His senses have been bothering more than usual and they are always awful.  He is quite congested lately.  I don't think it is a cold.  I wonder if it is from lying down do much in a stuffy room.

  • Like 2

Share this post


Link to post
Share on other sites

It sounds like it could be depression, though not knowing what kind of special needs he has might mean I'm way off base.  I would definitely be concerned because you mention 'on days when he is awake' as if this is a regular issue. 

 

I would not worry about being especially quiet when he is sleeping.  He can use earplugs if normal noise bothers him. Anyway, the goal is to get him on a normal schedule, right? 

 

Perhaps he needs a sleep study done. 

  • Like 2

Share this post


Link to post
Share on other sites

I have devoted the past couple of years to trying to get him on a regular schedule.  Whenever things seem to be getting better they get worse.  He will not wear earplugs and if I gave them to him he would eat them.  Seriously.  It is a weird life.

 

If we brought him to a sleep study he would not sleep.

 

I need to be quiet when he is asleep.  His body needs sleep.  He is really not well.  You would understand if you were here.  Him waking is not an option.  

Share this post


Link to post
Share on other sites

He just drank 2 cups of water! Hooray!  He is eating some crackers.  

 

I CANNOT wake him up for reasons I do not want to post about.

 

This is not a depression issue or a typical teen wanting to sleep in or lying around.  This is medical.  You see the fatigue on his face.  

 

His behavior has been good lately.  He is smiling more than usual.  He is as cooperative as possible for him.  His senses have been bothering more than usual and they are always awful.  He is quite congested lately.  I don't think it is a cold.  I wonder if it is from lying down do much in a stuffy room.

 

When you say you cannot wake him up, do you mean that if you accidentally wake him up there will be unfortunate consequences, or that waking him up is impossible, or close to impossible.

 

My son was in the latter category, difficulty sleeping at night, but when he was asleep he was out like a light.  I could rouse him enough to get him to make a "mom get off me" noise, but if I turned away for a second he was sound asleep again.  He'd also fall asleep anywhere if someone wasn't keeping him stimulated.  Like, he'd sit down to put his shoes on to go somewhere he'd been looking forward to for hours and bam asleep!

 

For him, it was depression, with a touch of sleep apnea caused by allergies.  That doesn't mean that he wasn't fatigued or he didn't really need the sleep, because he absolutely did.  Depression sapped the energy out of him.

 

Not saying that's the situation with yours, of course.

Share this post


Link to post
Share on other sites

Would he be able to do an at home sleep study or would the test stuff set him off?

  • Like 1

Share this post


Link to post
Share on other sites

Can't sleep study evaluators learn something if someone doesn't sleep during the evaluation?

Share this post


Link to post
Share on other sites

Can't sleep study evaluators learn something if someone doesn't sleep during the evaluation?

Not much. A sleep study looks at brain waves during sleep. If you don't actually sleep then you won't have the kind of brain waves that they are looking for.

  • Like 1

Share this post


Link to post
Share on other sites

Maybe he needs a very full work up somewhere like Mayo clinic that specializes in finding what might be wrong.

  • Like 2

Share this post


Link to post
Share on other sites

:grouphug: I feel for you- it sounds like you're doing what you can and really need a doctor who will do what it takes to get to the bottom of this.  Finding that mythical doctor is the problem, though.  I hope someone here has some good suggestions for you to try.  Have you been to a doc for yourself? You have to take care of yourself, too, and it sounds like you're overwhelmed. Totally understandable. 

 

  • Like 2

Share this post


Link to post
Share on other sites

If you really can't wake him up take a look at Kleine-Levin syndrome. My DS has this and goes through periods wher he sleeps for 18-20 hours a day or more.

  • Like 1

Share this post


Link to post
Share on other sites

Is he capable of communicating in words?  If so, what does he say is going on?

Share this post


Link to post
Share on other sites

That sounds very concerning! Without knowing what his SN are, I think you should really be pressing his doctor(s) for more testing and answers!

 

I also agree with the suggestion of a sleep study - you say he wouldn't sleep, but THAT would be a huge indication to the doctor that something is wrong! And your son would be hooked up to monitors, etc., so maybe they could figure out why he wasn't sleeping. And also why he sleeps and cannot wake for extended periods.

 

You could ask for a full iron workup (if that hasn't been done). Iron problems can cause paleness and disturbed sleeping patterns - and docs are less likely to test males for iron issues.

 

I hope you get some answers soon. Hugs and prayers for you and your son.

Share this post


Link to post
Share on other sites

When you say you cannot wake him up, do you mean that if you accidentally wake him up there will be unfortunate consequences, or that waking him up is impossible, or close to impossible.

 

My son was in the latter category, difficulty sleeping at night, but when he was asleep he was out like a light.  I could rouse him enough to get him to make a "mom get off me" noise, but if I turned away for a second he was sound asleep again.  He'd also fall asleep anywhere if someone wasn't keeping him stimulated.  Like, he'd sit down to put his shoes on to go somewhere he'd been looking forward to for hours and bam asleep!

 

For him, it was depression, with a touch of sleep apnea caused by allergies.  That doesn't mean that he wasn't fatigued or he didn't really need the sleep, because he absolutely did.  Depression sapped the energy out of him.

 

Not saying that's the situation with yours, of course.

 

I was mostly referring to bad consequences.  That said, when he has these problems falling asleep and finally gets to sleep, he tends to sleep lightly and then sometimes the sleep issues go on for a few days.  When he sleeps well, he tends to sleep deeply and even loud noises do not wake him.  When he sleeps well he might sleep 11 hours a night and it is like he has relearned to sleep.

 

I can ask him a few yes/no or multiple choice questions at a time.  He said he did not sleep last night.  He does not think he is sick.  His throat is not bothering him.  

 

We could not attach things to his head for a sleep study.  He would refuse. 

 

I am feeling relieved he just ate a substantial amount.  I am concerned about the long periods he goes without eating because of these sleep problems.

 

Also, I just hate these days!

Share this post


Link to post
Share on other sites

If you really can't wake him up take a look at Kleine-Levin syndrome. My DS has this and goes through periods wher he sleeps for 18-20 hours a day or more.

 

Yes, maybe it is time to look at unusual diagnoses. the above, epiliepsy, brain lesions.....

 

On unusual diagnoses, how about Klüver-Bucy which often include putting inappropriate things in mouth or eating them since you said that he would eat earplugs.  (Woohoo, I made an umlaut!)

 

If you look up some of these odd ones, you may get further names of things that they can be distinguished from.

Share this post


Link to post
Share on other sites

If you really can't wake him up take a look at Kleine-Levin syndrome. My DS has this and goes through periods wher he sleeps for 18-20 hours a day or more.

 

Thanks!  I just looked this up but I don't think he has this.

Share this post


Link to post
Share on other sites

Yes, maybe it is time to look at unusual diagnoses. the above, epiliepsy, brain lesions.....

 

On unusual diagnoses, how about Klüver-Bucy which often include putting inappropriate things in mouth or eating them since you said that he would eat earplugs.  (Woohoo, I made an umlaut!)

 

If you look up some of these odd ones, you may get further names of things that they can be distinguished from.

 

I just looked up Kluver-Bucy and it does not fit. Thanks anyways.

 

He has had the most up-to-date genetic testing.  Would these things have come up?

 

He was not always this way.  It started around age13-14.

Share this post


Link to post
Share on other sites

I really don't think that it is depression, but I do think he is influenced by strong emotions.  I have learned that I have to be careful not to talk about what we are doing the next day because then he gets excited and can't sleep.  I am thinking I might have been too excited last night when talking with DH.

 

Another thing.  Turkey contains tryptophan and it's supposed to make you sleepy and relaxed.  Works for me!  DS loves turkey on holidays and eats tons but he is upset afterwards. It doesn't seem to help him sleep.  Maybe he is upset because he is tired?  

 

 

Share this post


Link to post
Share on other sites

I just looked up Kluver-Bucy and it does not fit. Thanks anyways.

 

He has had the most up-to-date genetic testing.  Would these things have come up?

 

He was not always this way.  It started around age13-14.

 

 

Kluver Bucy has to do with brain lesions, I think, and would probably not be genetic.  And there could be something neurological that is not KB and better fits his situation that is also not genetic.

 

Did he have genetic testing looking for anything testable, or just certain things that someone though of to test?

 

The other thing that someone suggested, Kleine-Levin I think has no known cause???, not sure about that.  But it does start up in teenish years, and I guess vanishes in early adulthood. ????

 

Maybe contact NORD  (National Organization for Rare Diseases I think is what acronym is for) and see if anyone has any suggestions for you?

 

Has he been evaluated by a diagnostic psychiatrist, endocrinologist, allergist or environmental health specialist, and neurologist?

 

There are so many things that could be going on, it really seems like someplace able to do a complete, all systems evaluation would be of help.  Also perhaps where he were in patient during the evaluation so that they could see more of him than just an hour or two visit time.

 

Autism, some form of ADHD, doing drugs of some sort, depression, bi-polar,   unusual neurological illness, brain tumor, sleep disorder,.... so many possible things could be going on.  Or multiple.

  • Like 1

Share this post


Link to post
Share on other sites

Is he getting enough sunlight for Vitamin D?  Could he be depressed?  Is he drinking enough water?  I know you said nothing showed up on tests, but have you heard of hemochromotosis.  It is high iron, but can register as low iron anemia on tests.  The only way to determine for sure is a certain DNA test, but you can look up the symptoms.  The best thing for someone with this disorder is to give blood or have semi-regular dialysis; both can make one feel instantly better.  It is much more symptomatic in males than females for obvious reasons.

  • Like 1

Share this post


Link to post
Share on other sites

Does he go to a school for kids with special needs? If so, one thought is to talk with the nurses there and see if they have any great ideas or thoughts on what to check. Often these nurses over the years have more experience with special needs kids and their unique needs than many doctors.

  • Like 3

Share this post


Link to post
Share on other sites

If you are also on the special needs boards here, ask if the other parents have had depression diagnosed in their teens with special needs, in particular the less verbal ones, and what did depression look like in their kids?  That so many of us think that is a possibility given what you have told us here makes me wonder even more about it.

 

And I would want to look into and rule out a more likely culprit  (depression) than a less likely (but not impossible) rarer problem.  Trick is how to determine depression in one of our unique kidlets!

  • Like 2

Share this post


Link to post
Share on other sites

I have posted about my special needs son and his trouble sleeping before.  Sometimes he just cannot fall asleep at night.  I don't know what happened last night.  He seemed asleep when I woke up at 3:00 am but it's hard to tell in the dark with blankets on his face.  Anyways, he slept until 5pm this evening.  There are reasons I cannot wake him up which I don't want get into and anyways he won't get up.  He has not eaten in over 24 hours now and will not sit up to drink.  This has happened before.  He has been tired the past couple of days and took a couple of hours to get up each day.  We have done blood tests in the past and nothing came up.  Maybe we missed something.  We have tested thyroid, blood sugar.  Anything else?

 

He is pale, even in summer.  He loves food and eats really healthy most of the time, though this sleep problem is cutting into his eating time.  He is thin, I think because of this.  On the days he is awake I make him an extra meal.  

 

I want him to be healthier!  I worry about this "fasting".  I worry about him.  Please pray.

 

Anyways he has been in his bed since 11 pm last night, lying down and seemed to be sleeping most of that time.  Now he will not get up and drink water and he still looks really tired.

 

We have seen doctors.  I have yet to get anything useful from them.  They will run most blood tests though if you have suggestions.

 

I am getting tired and depressed because I never know when we will have a day like this, when there will be an "all-nighter" and I have to be quiet all day.  It's draining on the whole family.

 

 

I agree with and would like to "like" many posts above, but my "like" feature and others like paragraphing seem not to work right today.

 

 

 

I understand that you don't want to reveal much info, so it is hard for me (us) to understand much or make very good guesses about what is wrong.

 

 

As presented and without your saying it isn't depression etc. that you think you ruled out already, my first guess would be autism, my second depression or some version of that like bi-polar. Or if I knew other info like that he was adopted from certain backgrounds, maybe my first guess would change to FASD.  But again, it could be a huge number of possible things or combo of things going on.

 

Including lack of sleep itself could lead to other issues.  I assume you have tried various things already like good sleep hygiene regimens, supplements for sleep, and so on, as allowed by his doctors and other conditions, with no success.  ???

 

I pray for him and you and your family. And add in my prayers that you will find a way to get him adequately evaluated medically and mentally.

Share this post


Link to post
Share on other sites

On turkey, maybe he is allergic or sensitized to it and so reacts in a stimulated way. Or maybe he is afraid of falling asleep.  Again, maybe you could ask him.

 

Also, maybe check things like use of internet that could be affecting his sleep patterns.  If he was up / awake all night on a particular night, what does he do while up?

 

 

Does he eat foods containing sugars, processed and refined foods, anything with artificial dyes or flavors

Share this post


Link to post
Share on other sites

Thanks!  He is not low in iron but is often low in zinc.  We have supplemented in the past.  Last year when I supplemented it did not seem to help sleep.

 

I don't think any depression or sadness he feels is causing the sleeplessness.  I really really really believe it is physiological.  I think feeling excited can make it worse but he is not bipolar.

 

He has really really really bad sensory overload.  All the time!  Even in the quiet and the dark!  

 

He doesn't have an eating disorder and loves food and is open to eating all kinds of food.  He eats only healthy food, no sugar, no dyes or processed food except the occasional cracker or bun.

 

Another weird thing with the turkey is that we did food sensitivity testing years ago.  According to the testing he was sensitive to all food containing protein, except turkey!

I have not seen him react badly to the other foods, just turkey!

 

He hardly uses the internet and when he cannot sleep he usually just lies there, sometimes with his eyes closed.  Occasionally there will be days where he goes downstairs.

 

 

 

 

Share this post


Link to post
Share on other sites

As for the turkey, I wonder if he's sensitive to the injected broth.  A relative gets extremely bad stomach pain and upset from many injected turkeys because the broth contains casein.  

 

Have you tried giving your ds melatonin to help with sleep?  It comes in drops, if he can't take pills.  Some require several squirts to get the labeled amount, so you have to read carefully.  This one is one dropper for 3 mg, so you can easily experiment with giving less:  https://www.amazon.com/gp/product/B002MFOO3A/ref=oh_aui_search_detailpage?ie=UTF8&th=1 

Edited by klmama
  • Like 1

Share this post


Link to post
Share on other sites

Thanks!  He is not low in iron but is often low in zinc.  We have supplemented in the past.  Last year when I supplemented it did not seem to help sleep.

 

I don't think any depression or sadness he feels is causing the sleeplessness.  I really really really believe it is physiological.  I think feeling excited can make it worse but he is not bipolar.

 

He has really really really bad sensory overload.  All the time!  Even in the quiet and the dark!  

 

He doesn't have an eating disorder and loves food and is open to eating all kinds of food.  He eats only healthy food, no sugar, no dyes or processed food except the occasional cracker or bun.

 

Another weird thing with the turkey is that we did food sensitivity testing years ago.  According to the testing he was sensitive to all food containing protein, except turkey!

I have not seen him react badly to the other foods, just turkey!

 

He hardly uses the internet and when he cannot sleep he usually just lies there, sometimes with his eyes closed.  Occasionally there will be days where he goes downstairs.

 

Sensory overloaded in what way and to what?

 

Has anything been tried for sleep such as melatonin, Deep Sleep, NutriSleep...?

 

The sensitivity to protein is causing some, tip of my tongue feeling, but nothing quite coming...

 

Check out (google) Carl Pfeiffer and the clinics that exist following his death.  I knew a kid who was in terrible, but weird, shape, and got fixed up through one of them.  Google: Doris Rapp, Environmental Health Center Dallas,  orthomolecular medicine, electrosensitivity -- these are getting more toward alternative diagnostic and healing modalities, rather than possible conditions.  See if anything seems to click as maybe an approach or direction, since it sounds like you have largely exhausted standard medical routes.  Possibly even something like homeopathy might be worth checking out--I have found, whether placebo or not, that a very small dose of "homeopathic" arnica at night can be helpful for sleep.  As can things like a warm shower, hot milk with a dash of cardamom...

 

Porphyria?  

 

 

 

Could he be affected by something that is so omnipresent or frequent you don't even think about it?

  • Like 1

Share this post


Link to post
Share on other sites

As for the turkey, I wonder if he's sensitive to the injected broth.  A relative gets extremely bad stomach pain and upset from many injected turkeys because the broth contains casein.  

 

Have you tried giving your ds melatonin to help with sleep?  It comes in drops, if he can't take pills.  Some require several squirts to get the labeled amount, so you have to read carefully.  This one is one dropper for 3 mg, so you can easily experiment with giving less:  https://www.amazon.com/gp/product/B002MFOO3A/ref=oh_aui_search_detailpage?ie=UTF8&th=1 

 

 

Someone with PKU would also have a problem with turkey, very probably. That would probably have been screened for, but maybe not.

Share this post


Link to post
Share on other sites

How about a hormone /endocrine related issue given that it seems to be a problem with possible changes of hormones as a teen?

Share this post


Link to post
Share on other sites

Are you sure thyroid was properly checked?

 

Is he thin because of sleep issues, or does he have sleep issues due to anorexia?

 

Well, I'm off to bed and hope to sleep myself now.

Share this post


Link to post
Share on other sites

As for the turkey, I wonder if he's sensitive to the injected broth. A relative gets extremely bad stomach pain and upset from many injected turkeys because the broth contains casein.

 

Have you tried giving your ds melatonin to help with sleep? It comes in drops, if he can't take pills. Some require several squirts to get the labeled amount, so you have to read carefully. This one is one dropper for 3 mg, so you can easily experiment with giving less: https://www.amazon.com/gp/product/B002MFOO3A/ref=oh_aui_search_detailpage?ie=UTF8&th=1

e is not sensitive to casein. Do they inject all turkeys? He reacts very badly to MSG.

 

I

Tried melatonin years ago and it did not help but I think he needs a very high dose and I have been afraid to try that.

Share this post


Link to post
Share on other sites

Sensory overloaded in what way and to what?

 

Has anything been tried for sleep such as melatonin, Deep Sleep, NutriSleep...?

 

The sensitivity to protein is causing some, tip of my tongue feeling, but nothing quite coming...

 

Check out (google) Carl Pfeiffer and the clinics that exist following his death. I knew a kid who was in terrible, but weird, shape, and got fixed up through one of them. Google: Doris Rapp, Environmental Health Center Dallas, orthomolecular medicine, electrosensitivity -- these are getting more toward alternative diagnostic and healing modalities, rather than possible conditions. See if anything seems to click as maybe an approach or direction, since it sounds like you have largely exhausted standard medical routes. Possibly even something like homeopathy might be worth checking out--I have found, whether placebo or not, that a very small dose of "homeopathic" arnica at night can be helpful for sleep. As can things like a warm shower, hot milk with a dash of cardamom...

 

Porphyria?

 

 

 

Could he be affected by something that is so omnipresent or frequent you don't even think about it?

He is probably affected by something omnipresent - his own body!

 

We explored all the alternative medicine you mentioned and way more. He reacted badly to homeopathy, even though it is supposed to be harmless.

 

his sensory issues are bad. he covers his eyes and ears and face and sits in corners or leaves the room or when he is really bad he takes off his clothes. he refuses to do things for sensory reasons

Share this post


Link to post
Share on other sites

How about a hormone /endocrine related issue given that it seems to be a problem with possible changes of hormones as a teen?

I wonder about this. People in other threads have talked about cortisol and adrenaline and other stuff. I also wonder about serotonin and dopamine. Can these be tested?

Share this post


Link to post
Share on other sites

Are you sure thyroid was properly checked?

 

Is he thin because of sleep issues, or does he have sleep issues due to anorexia?

 

Well, I'm off to bed and hope to sleep myself now.

He does not have anorexia! He loves to eat and has so many problems he cannot care what his body looks like.

 

Our whole family is thin even though we eat a lot. We are not super thin and doctors think we have a healthy weight. I am concerned about the days where he eats dinner at 5:00 pm and does not eat again until the next evening because the first 15 hours he is lying in his bed awake and then the next hours he is as.eep. This is why I used the word fasting though he is not doing it on purpose.

 

His thyroid has been checlked more than once.

Share this post


Link to post
Share on other sites

Someone with PKU would also have a problem with turkey, very probably. That would probably have been screened for, but maybe not.

He had all the normal baby tests and has had extensive genetic testing. But when I google PKU it so very describes him. Could the test have a false negative?

Share this post


Link to post
Share on other sites

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1647561/?page=2

 

so according to NIH  it could happen....might be worth having him rechecked?  Sounds very rare, though, for a false negative to get by without being caught if having it makes an infant vomit enough to cause concern and get them rechecked as a baby. Still, I'd insist on a recheck.   If he was not retested as a baby, then later on doubt it would have been retested when other work-ups done since everyone would have assumed no need to do so since he "passed" as a newborn.

 

 

Edited by JFSinIL
  • Like 1

Share this post


Link to post
Share on other sites

Depression is physiological, it is not about feeling sad though it can result in a feeling of sadness for some people.

 

Here is a list of symptoms:

 

 

People may experience:

Mood: anxiety, apathy, general discontent, guilt, hopelessness, loss of interest, loss of interest or pleasure in activities, mood swings, or sadness

Sleep: early awakening, excess sleepiness, insomnia, or restless sleep

Whole body: excessive hunger, fatigue, loss of appetite, or restlessness

Behavioral: agitation, excessive crying, irritability, or social isolation

Cognitive: lack of concentration, slowness in activity, or thoughts of suicide

Weight: weight gain or weight loss

Also common: poor appetite or repeatedly going over thoughts

 

 

 

I really hope you are able to find some answers for your son.

 

You say he has had all genetic testing done. Does that include whole exome testing? It is quite new and not normally included. Crimson Wife recently had it done for her daughter and they discovered a rare and only recently known genetic condition that is behind many of her symptoms.

  • Like 2

Share this post


Link to post
Share on other sites

Depression is physiological, it is not about feeling sad though it can result in a feeling of sadness for some people.

 

Here is a list of symptoms:

 

 

People may experience:

Mood: anxiety, apathy, general discontent, guilt, hopelessness, loss of interest, loss of interest or pleasure in activities, mood swings, or sadness

Sleep: early awakening, excess sleepiness, insomnia, or restless sleep

Whole body: excessive hunger, fatigue, loss of appetite, or restlessness

Behavioral: agitation, excessive crying, irritability, or social isolation

Cognitive: lack of concentration, slowness in activity, or thoughts of suicide

Weight: weight gain or weight loss

Also common: poor appetite or repeatedly going over thoughts

 

 

 

I really hope you are able to find some answers for your son.

 

You say he has had all genetic testing done. Does that include whole exome testing? It is quite new and not normally included. Crimson Wife recently had it done for her daughter and they discovered a rare and only recently known genetic condition that is behind many of her symptoms.

I will ask about the whole exome testing? We did the genetic testing 2 years ago. It is hard to know if he has depression because of all his other problems BUT he has had very bad moods since he was two years old. They are actually better lately. Whenever I ask him to point to what is bothering him he points to the word "senses" and sometimes "stomach" or "headache".

 

if depression is physiological is there a blood test I could do on him?

  • Like 1

Share this post


Link to post
Share on other sites

Unfortunately there are no blood tests for depression; it is associated with both biochemical and structural changes in the brain but is diagnosed by symptoms.

 

I will be praying for you and yours, I know you will continue to advocate for Your boys and seek answers.

  • Like 1

Share this post


Link to post
Share on other sites

He is probably affected by something omnipresent - his own body!

 

We explored all the alternative medicine you mentioned and way more. He reacted badly to homeopathy, even though it is supposed to be harmless.

 

his sensory issues are bad. he covers his eyes and ears and face and sits in corners or leaves the room or when he is really bad he takes off his clothes. he refuses to do things for sensory reasons

 

Interesting.  Okay. Everybody who disbelieves in homeopathy and thinks it is a bunch of hooey, please skip the next paragraph.

 

Yes. It is quite possible to react badly to homeopathy (and I've experienced it myself)--this would probably be known as "proving" a remedy (sometimes there are also other things like healing crises, but that seems unlikely in his case, and it could also be that he could not handle even a tiny bit of lactose, but you probably have some idea of whether the bad reaction was similar to a lactose intolerance if he has any).  Finding out how well/normal/healthy people react to homeopathic remedies is most of how Hahnemann originally came up with what would potentially work for what.  IME in using homeopathics, if there is a wrong one taken, while it usually simply has no effect at all, sometimes it can have an appearance of helping, but then that comes to an end and there is a relapse, or, it can cause its own proving reaction which exists alongside one's own illness.  When this happened to me, it felt like I had my own illness symptoms, and also someone else's similar but not quite the same illness symptoms at the same time. Reacting to remedies strongly and thus having a bad experience with that probably fits well with him being hypersensitive and sensory, generally.  If your ds can react badly to a homeopathic remedy though it probably means he can react at all to them, which means that trying that again, but in much more small doses and easy to tolerate potencies and with probably different guidance could potentially be of help.  Especially if no actual diagnosis can be found and you need to work on a symptom basis.  If he is sensitive to homeopathy, then also flower essences may be able to affect him, and they are usually gentler still.  IME.  

 

 

Sensory:

 

I gather he cannot describe things to you, only multiple choice choose, or maybe answer yes or no to questions?

 

Does he understand and communicate well enough to be able to ask him if his skin feels like it is hot/burning/tingling (like a sunburn, but without actual sunburn) when he is having troubles (or some of the time--esp if he is pulling off clothing)?  Can he give any more details about head and or stomach in any way?  Pain? Nausea?  Possibly migraine sorts of symptoms where light bothers?

 

Would he be capable of learning some mindfulness meditation?

 

 

Do chemical or exhaust fumes bother him?

 

What does he do for exercise, and when and how much?

 

 

 

I wonder about this. People in other threads have talked about cortisol and adrenaline and other stuff. I also wonder about serotonin and dopamine. Can these be tested?

 

I know that a lot can be known about them for research purposes, but not sure about what's available as just a regular patient.  They are strongly related to depression  physiologically.  I'd like to recommend the book The Hacking of the American Mind, by Robert H. Lustig, MD. (Audible has the author reading it himself.) It has some parts on serotonin and dopamine and also on sleep, and equally my reason is that if its author's way of ...anything...explaining...writing, resonates at all with you, he is, I believe, still a practicing researcher at UCSF in pediatric endocrinology and could be worth your while to contact.  I've never met him, but have had good personal experiences with getting help from people at UCSF medical school. 

 

 

He does not have anorexia! He loves to eat and has so many problems he cannot care what his body looks like.

 

Our whole family is thin even though we eat a lot. We are not super thin and doctors think we have a healthy weight. I am concerned about the days where he eats dinner at 5:00 pm and does not eat again until the next evening because the first 15 hours he is lying in his bed awake and then the next hours he is as.eep. This is why I used the word fasting though he is not doing it on purpose.

 

His thyroid has been checlked more than once.

  

Thyroid well checked at least once?  Or only cursorily main stream medicine sort of checked (like ran one blood test) more than once? 

 

What you could maybe do yourself would be check his basal body temperature and see how that runs to help yourself with a personal gauge toward whether thyroid fine is a correct assessment or not.

 

anorexia does not mean it need be deliberate (that is anorexia nervosa)    

 

anorexia |ËŒanəˈreksÄ“É™|noun               a lack or loss of appetite for food (as a medical condition).

 

Though he may only eat once per 24 hours, is he getting all needed food and nutrients in at that time and maintaining weight or is he losing weight?  If he is awake during night, can he eat then?  

 

Have you ever noticed anything unusual about his urine?  smell? color change or darkening  if it is left to sit in sunlight?

 

He had all the normal baby tests and has had extensive genetic testing. But when I google PKU it so very describes him. Could the test have a false negative?

 

 

I guess anything can have a false negative.  If it strongly fits, then if it were my dc, I'd consider it worth having that rechecked and looked into, and also anything that would closely resemble it.

 

 

 

 

Also take a look at Wilson's Disease and see if anything about it might seem to fit.

 

 

 

 

I assume he was checked for possible lead poisoning and found to be okay as far as that goes?

 

 

 

Could you clarify a time line of what started when?  

 

And are there any things that came before whatever is going on such as injury/accident, head injuries, fevers, viral infections, etc. ?

 

 

 

To the extent that lack of sleep and being off a good sleep cycle can itself cause other problems (in this case, not only for him, but also rest of family), what has been tried to get him on a good sleep routine?

Share this post


Link to post
Share on other sites

Is it possible he cannot sleep at night due to pain?

 

head, stomach, skin or other pain?

Share this post


Link to post
Share on other sites

Yes, he is very sensitive! e reacted badly to several types oh homeopathy. higher dose was worse but low dose was bad when it was a special homeopathy aimed at detoxification. He has reacted badly to a variety of supplements that have helped others. he has reacted badly to lots of alternative medicine and healing. it really makes me scared to try anything else

 

When he was an infant he slept through the night but he would not like to nap. he would sometimes sleep with one eye open. sometimes when he fell asleep he would look at me like I had betrayed him.

 

I think there have been times when stomach pain kept him awake. I think this can be a contributing factor but I think that it is more his sensory problems and maybe just an excited feeling that keep him awake. I think his main/root problem is dysbiosis but probiotics really constipate him and constipation makes sleep problems worse.

Share this post


Link to post
Share on other sites

sounds like he has anxiety about sleeping     ???  or about something bad happening to him while asleep   ???

 

things like constipation usually can be worked out IME by balancing constipating and the reverse foods / supplements...    If dysbiosis is the main / root problem, you can probably get good help for that and for constipation from probiotics

 

someone on Learning Challenges had some info possibly related to that

 

several of us asked about sleep hygiene and if you've tried anything like melatonin to help him sleep

exercise

vitamin D

etc.

 

I'm curious about those.

 

Also B and C vitamin status and trials in re orthomolecular which you said you have tried.

 

 

 

Anyway, prayers for you and your family.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...