Topic: A Major Breakthrough Theory on My Son...please read and comment.
2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Hey Family,
I have been posting a lot here trying to learn abut Central Diabetis Insipidus (CID).
My son does not pee all the time, and he does tend to drink more then some, but so does my niece, and so do I. My Dad did to0. We sweat a lot as well.
His urine concentration was high (osmolality), and that should not be with CID. His plasma concentration was also...that is indicative of CID. But both....weird. Can signal deydration though. He was in camp and not drinking much. His blood electrolytes including sodium were normal at the time.
I do think it is an anti-diuretic hormone issue, but not for the reasons of the brain I suspect. I have read that when you don't sleep for an extended or maybe deeper period of time ( not specified) you do not increase your ADH levels, which should go up at night as compared to the day.
My son has fragmented sleep (arrousals) all through out the night. My contention is that once he does get into deep sleep, he does not have the buildup of ADH, and he is exhausted, so he pees.
Last night he came home from a trip at 1:00 am. He went to bed and I awoke him at 8:00 am for camp. He sprung up (unfortunately), but atleast he did not wake up on his own. I commented that he didn't get much sleep, but he said back to me that it was a good night because he closed his eyes and when he opened them it was morning. That never happens anymore, it's rare. Interestingly enough, his pullup was still in his pj's and it was DRY. He even stopped at 11;00 pm for dinner at IHOP before coming home, hence he drank late.
It also explains why some nights he drinks late he doesn't pee all that much, and other nights he drinks very little, but soaks the pullup and the bed.
So, I believe it is sleep pattern related. So, what do I do with this?
Well, at this point I cannot fix whatever happened to him, but I have to try to improve the quality of his life, and rule out secondary symptoms due to sleep.
I do not want to give him pills. i want his brain to do what needs to be done.
I know he did not sleep well the night before last, as he spent it on a blow up mattress, with time change, late bed-time and a room of family members. So, in essence, he may have been slightly sleep deprived. Why is this important.....
Well, I'm looking into the concept of sleep restriction therapy. I know it's extreme, but if his brain can be kick-started into sleeping more soundly, it's all I got.
It involves measuring how long he does sleep, through a journal, preferably an electronic device i"m trying to find. If he is in bed 10 hours but only asleep a total of 7, then that's the total amount he gets to start off with. He will hopefully feel tired, and as his body works to get that deeper sleep, it will reprogram the brain centers, so to speak. This may mean intitally going to bed at 12 and getting him up at 7......suckage, I know. But if his efficiency increases, the duration in bed is to get increased by 15 minutes. If it decrases the duration decreases by 15 minutes.
The goal is deeper sleep, less arrousals, and getting the hours your body will maintain.
Ok........please give me thoughts family.
REALLY NEED YOUR INSIGHT.
THanks,
Hugs
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
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- Re: sleep restriction therapy
I am not sure how to say this. In all kindness, though: please do NOT put any more attention on his sleep. That kind of thing can be interpreted by the psyche as invasive and by the body as torture.
I know you mean well.
And, for an adult, retraining themselves, this might have some place (but I still think not. If one does not have to get up and is in a good sleep cycle, it is best to let that run its due course).
It could make him a very messed up young man (as I recall he's about 5th grade? so he needs to listen to the needs of his body as it goes through major growth changes about this time).
As kids get closer to teen years, they have a harder time going to bed early but need to sleep in late . . . really. Some schools even adapt, making starting time for teens an hour or two hours later than the younger kids.
He may not be there yet but please do not put him on a sleep diet.
I cannot even tell you just how very miffed I would have been at either parent trying to micro-manage my sleep.
Actually, I still am affected by my mother awaking me up from a deep sleep to "finish doing the dishes" if I had overlooked a broiler pan in the oven or such.
Maybe a dozen times in my youth / teens - but, I never knew when I went to sleep if she would awake me. That was a terrible way to try to fall asleep, knowing SHE had control over even my sleep.
now, decades later, I still can't go to bed with any dish in the kitchen that is not in perfect order. While that is a good thing, to a reasonable degree, it the fact that my body took that all in has me cautioning you to step back.
And those horrible memories come up every night - dozens of years later -- oh, they don't grab me but they cross my mind and it's not seeing my mother in good light at all. Mess with a child's sleep and your run huge risks.
If anyone messes with our sleep, I think our cells hold on to that and it can affect us later. Sleep is VERY personal.
He seems to be doing just fine but he won't if there is any more attention paid to this . . .
other than just to either adapt or continue good sleep practices (best to avoid all light of TV, computer, etc. an hour before bed. Maybe read or look at travel photos, magazines in low light, sing, etc.
Short conversations - in general - with the family talking about sleep, in general or some interesting aspects of it would be fine. Wish I had known as teen how important it was to instill good habits. But beyond that, beyond making sure lights are out at a good time, etc., he should have the privacy of his nighttime to himself and not to be put under a microscope.
best to have dark blinds, no light in the room and nothing plugged in next to the bed. If there is a clock, it should be RED light and not right next to the bed.
Some things we all are learning:
These are some things that help everyone. But actually clocking his time and trying to manipulate that, I fear, could lead to some serious bad side effects for years to come - every time he has sleep trouble, he may think back to being regimented.
Other than asking if how he slept, as we might ask anyone in our home as a morning greeting, let it go. His body seems to be doing this okay.
I know you mean very well and there are many things that go unanswered. Still, messing with his sleep is not the answer in the way it may seem, anyway.
However, a good atmosphere to allow all family members to sleep is always helpful. Maybe put on certain relaxing music about a certain time each evening, turning off the TV. Just talking, like around a campfire sort of atmosphere can bring the family closer or allow for hobby time.
You might even get various kinds of music to explore as to what is most soothing and captivating. Mozart's Clarinet sonatas? Harp? New Age? Brian Eno's "Music for Airports" . . . singing songs? Just let him / other family see what works for them.
Creating a relaxing atmosphere can have far more positive effects. From there, just let him find his way in dreamland, listening to his body tell him what is needed . . . and know that it's not going to be the exact same each night, that's normal.
If he can't sleep for some time over night, he can figure out what to do that will not wake him up. Maybe look out the window at a tree in the moonlight. I loved that as a child, still love it.
Yoga, light singing, writing poetry, reading in dim red light . . . but he needs to have the space and not have to report on all his hours, or having someone ask him to recount the night.
Again, I know you mean well. I know I can't be as concise or two the point as I'd like so this may not "read" well. I just had to speak out, though, as I think sleep restriction is dangerous. -
[ 06-23-2014, 04:33 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Razzle
Frequent Contributor (1K+ posts)
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I agree with Keebler 100%.
I wet the bed until I was in my late teens (college). Fluid restriction was tried, wet-the-bed-alarms were tried, special herbs were tried...nothing worked.
Then my Mom got into magnetic therapy. I got a magnetic mattress and magically, this was the fix for my overnight issues...no more bedwetting, no more waking up in the middle of the night in a puddle.
I don't need to sleep on the magnetic mattress anymore - the magnets "fixed" whatever it was about my brain-bladder connection that was broken before.
I don't sell magnetic products...just explaining what helped me with sleep/bedwetting issues when I was younger.
Also, consider looking into methylation issues if you haven't done so already...that may balance out his electrolytes, neurotransmitters, etc.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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GretaM
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2Roads-I completely see how one would reach the conclusion you did via brainstorming.
That being said, Sleep Deprivation is Torture.
Please do not do it.
The worst thing anyone can do is disturb someone when they have finally got to sleep.
Lyme makes the first half of my sleep very light, the second half very very deep.
If someone was to wake me during the last half I would be an emotional wreck.
I firmly believe that those of us with lyme need to awake naturally-on our own.
Otherwise we are undoing any rest or treatments from the day prior.
I see your sleep theory. Can you go the other way, and encourage your son to go to bed earlier?
Perhaps adding half an hour to the front portion of his sleeping cycle will help to align the ADH hormones?
Many hugs, Greta
2Roads-I edited my post. It sounded like I was criticizing, which am not, just in a neuro lyme day and words aren't easy to find. Wanted to be sure I didn't hurt your feelings. XOXO
[ 06-23-2014, 07:25 PM: Message edited by: GretaM ]
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Marnie
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Alpha wave intrusion?
With work...can "reprogram".
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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Judie
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Member # 38323
posted
I agree with Keebler and Razzle.
I do think you're on to something though with the liquids at night not making a difference.
I'd lean towards some neurotransmitters being off. I don't believe sleep deprivation fixes that.
Posts: 2839 | From California | Registered: Jul 2012
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------ It could make him a very messed up young man (as I recall he's about 5th grade? so he needs to listen to the needs of his body as it goes through major growth changes about this time).
As kids get closer to teen years, they have a harder time going to bed early but need to sleep in late . . . really. Some schools even adapt, making starting time for teens an hour or two hours later than the younger kids.
------------------ If anyone messes with our sleep, I think our cells hold on to that and it can affect us later. Sleep is VERY personal.
He seems to be doing just fine but he won't if there is any more attention paid to this . . .
- Agree... let the boy sleep and please do not go in his room during the night unless he calls you.
Sorry .. my personal opinion on this.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
'Agree... let the boy sleep and please do not go in his room during the night unless he calls you.'
I also agree.
I was at Target today, and my youngest girl, who loves the movie 'Frozen', and has a British father,
saw a t-shirt w/ a princess from the movie that says: 'Keep Calm and Let it Go' she made me buy it for myself :-)
(the song 'let it go' the Oscar winning hit from the movie Frozen), the English saying: Keep Calm and Carry On.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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2roads
Frequent Contributor (1K+ posts)
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posted
I thank you all for your genuine thoughts.
I just want to explain that it's not the urinating that is upsetting because it may seem I feel inconvenienced.
It's the fear of how his body is malfunctioning without deep sleep. There are several metabolic and functional complications that occur when one does not sleep right.
This doesn't even touch the fact that his memory and logic are poor, as well as he is fidgety and unsettled. I don't know if this is apart of the sleep disorder, or just more primary symptoms. But if I don't work to rebalance his sleeping, I'll never know.
I agree so much about waking him. I argued with my husband to stop doing so in the middle of the night to pee because I knew that any rest he got was a blistful moment. But, I guess I thought if we let him sleep through the night but tackled it at both ends, it would recalibrate his sleep mechanism with less interuption.
He truly is not sleeping properly. His breathing gets heavier and he rouses. It's not sleep apnea, been tested. He even has started to breathe deeper and faster during the day. I don't know why. But it's very loud, like he just ran up some stairs, but he's reading a book.
I will get more answers when I speak to the sleep neuro next month. I believe he is not achieving Stage 3-4 sleep properly, but we will see.
Also, if I cannot correct this now, he may be peeing on his wedding night. That would suck. I'm not sure about giving any natural derivatives except if I can do so through food. I'd like to think I've been doing that already....but no change here.
I have to reread everyone thoughts, but I feel at a loss. I really do want to help him. I don't mind washing sheets until hell freezes over. But his frame of mind not sleeping right and all the things that may be wrong because of it seems a low price to pay for trying to readapt sleep until things may recalibrate.
It may not work, and it may make things more complicated. But, atleast I would have tried.
Greta, you didn't offend. I want you guys to each know how much I appreciate the time you have tiresly put into me and my son's situation. You are all so precious to me.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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beaches
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posted
No no no! Please do not restrict his sleep! Sick kids need MANY more hours of sleep and REST than well ones!
If his memory and logic are poor and he is fidgety and unsettled, he STILL has LD symptoms IMO and needs to be re-treated.
Put that thought of his wedding night out of your head...that's so very far away. You just need to stay focused on the present.
Have you tried melatonin for him? Has any doc recommended an anti-depressant med to help with sleep?
Posts: 1885 | From here | Registered: Jul 2012
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Razzle
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posted
Sleep restriction won't work. I've tried it many times...it fixes nothing, and just contributes to the lack of sleep symptoms.
Need to look at neurotransmitters, organic acids (urine test), hormones, stuff like that...
Possibly it might help to use a light box...this is daytime treatment that won't restrict sleep. It helps to reset the internal biological sleep clock.
And I agree, these things may be indicative of a lingering infection...
The "audible" breathing during the daytime may be Asthma...has he been checked for that?
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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beaches
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Ditto what Razzle posted!
Posts: 1885 | From here | Registered: Jul 2012
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beaches
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2roads your mailbox is full FYI...
Posts: 1885 | From here | Registered: Jul 2012
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Thanks guys,
I cleared my mailbox.
I have been updating Doc J's office on all these things. Have yet to hear, but hope I will. Trying to cover all bases.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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surprise
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Member # 34987
posted
It's very difficult to give advice about children on a public forum with many members- we don't know all the details on his history, etc.
Is he functioning fine? In school during the year and doing okay? Is he growing and thriving? Behavior? See? All this background counts-
Not asking you to type that all out! All I know is he was previously treated by Dr. J.
Are you taking him back for treatment? A re-check of some sort?
The breathing sounds type thing while he is awake could be a tic- do you see others? Urine issues can be a PANDAS/ PANS thing, too.
Here is a list, but this does not mean you should go and freak out over it. In fact, I hesitate to post. If he is doing okay in the other questions I asked, try and relax.
PANDAS/ PANS (3) Presence and/or history of certain psychiatric symptoms. OCD symptoms (intrusive thoughts, anxiety, different phobias, unfounded fears; repetitive physical and mental behaviors, behaviors or acts aimed at preventing or reduscing some dreaded event, coprolalia) are present in virtually ALL cases.
Sleep Disorder(s) (insomnia, inability to fall asleep, fright full sleep, nightmares) in some form is present in 84% of patients.
Behavioral regression (separation anxiety, insistence to remain at or close to home, "baby-talk", temper tantrums) in some form has been indentified in 98% of patients.
Aggressiveness (present in 62% of patients).
Hyperactivity and inattentiveness (present 71% of patients).
Learning disability particularly affecting mathematics' skills (present in 62% of patients).
Inability to concentrate (present in 87% of patients).
Hallucinations (9% of patients).
Eating disorders (17% of patients) are among the other less frequently present psychiatric symptoms of PANDAS.
(4) Presence and/or history of certain characteristic physical signs and symptoms. Adventitious movements have been identified in 31% of patients. Wide pupils (patient appears "terror stricken"; present 83% of patients).
Various and evolving tics (present in 72% of patients).
Deterioration in fine motor skills and handwriting (dysgraphia)(89% of patients).
Short-memory loss (62% of patients).
Enuresis and/or urinary frequency (88% of patients).
Increased sensory responses (increased sensitivity to light, and/or sound, and/or touch, and/or smell) reported in 39% of all patients.
Non-specific gastro-intestinal complaints are commonly reported.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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MannaMe
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Has he seen a chiropractor to be sure his spine is in place? Depending on where the spine is out of alignment, it can cause pressure on nerves that may disturb sleep.
Chiropractic care also helped stop the bed wetting for several of my siblings.
Posts: 2251 | From USA | Registered: Aug 2011
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Carol in PA
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Member # 5338
posted
Berberine helps to reduce the excess urine output when I am asleep.
.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
Lemongrass tea, anti-parasitics, pemf, detoxing, herbs, bolouke,blood thinners, homeopathic, colloidal silver, wheetgrass, juicing, etc.
Posts: 697 | From CA | Registered: Dec 2011
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Hey Family,
I've made a little headway.
I managed to order the ZEO sleep system. It is supposed to quantify deep, light and rem sleep patterns. If it works, it will help me gain info, and monitor good or bad change. (Not that it can get much worse). It's pretty user friendly. It is a band worn around the head which emits signals to an app on your Ipod.
It's not something for every night use like the wristbands some wear but to measure motion and quantify sleep. it's just a data collecting tool for an initial assessment, and here or there later on.
Knowledge is power. I know it will say frequent awakenings, and likely significant REM loss sleep. maybe some deep sleep too. Pretty much the ADHD sleep disorder, except ours was headed under toxin related. Likely, it is very unique to other reasons for ADHD.
I read a study about theanine used in ADHD boys, between 9-12 for sleep eval. My sons age. Sleep effiiciency and lack of motion were improved, the first somewhat signicantly. Sleep onset and duration not changed. His onset isn't as big a problem usually, as he has adapted to playing a lullabye in his mind to get to sleep.
I found the theanine brand used in the study. It's now sitting in my cabinet. I got the crazy idea of trying Matcha tea instead for him. Orgnic of course. I've located that at our health food store, but it's out of stock. I worry about radiation as it's from Japan. Asked hubby if we could use a survey meter at work to test it.
That led me to contacting a Buddhist Monastary to delve into matcha tea and meditation, and that may lead me to Chicago to pursue western medicine.
I know Keebler.....
But, it's GABA/glutamate and norepinephrine disregulation that has occurred. He is that failure to a "T". On the bright note, the man at the monastery suggested the doctor more so then the willy nilly tea (we knoow that's where I got into trouble before), and sleep deprivation therapy is off the table (courtesy of my more reasonable and intelligent Lyme family members).
This tragedy that occurred two years ago has taken me places I thought I'd never go, and I have a feeling it isn't over yet.
Indifferent-----
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Methylation is needed for detox. and for neurotransmitter balance.
Many with ADHD have methylation issues.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Marnie
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Member # 773
posted
When we sleep (and when animals hibernate) we/they still produce glucose in order to stay "alive".
When we sleep, gluconeogenesis kicks in (burn fat to supply an ongoing source of glucose).
We need an ongoing supply of glucose...esp. our brains.
It is also a constituent of hyaluronic acid (also called hyaluronan or hyaluronate, HA)
Hyaluronan is a major component of the synovial fluid, and was found to increase the viscosity of the fluid. Along with lubricin, it is one of the fluid's main lubricating components.
Glycerol = sugar alcohol which is the backbone of triglycerides (some saturated i.e., loaded with hydrogen, others not). VCO contains medium chain triglycerides...saturated.
When the body uses stored fat as a source of energy, *glycerol* and fatty acids are released into the bloodstream.
Bb appears to be VERY dependent on N-acetyl glucosamine - esp. when "he" is in the ticks and is likely in "hibernation mode". See my mitochondria post re: N-acetylglucosamine and rhodopsin.
When Bb goes from the tick to the mammal, it looks to switch carb. sources to glycerol use and triggers a response in us to feed "him" yummy glycerol. But if conditions become hostile, "he" may switch back to utilizing N-acetyl glucosamine.
From spore to active, infective, spirochete.
I would NOT suggest that ( N-acetyl glucosamine)as a "cure".
The above may explain why a lyme patient I know doesn't tolerate certain swimming pool chemicals.
Mitochondrial damage = lithium helps or PQQ (natural) + additional nutrients can do the same.
Berberine and minocycline look to work from a different perspective...both look to impact the KYN (tryptophan metabolism) pathway with Berberine upstream of Minocycline.
Candida also gets NAD from tryptophan.
As we age, we normally make fewer mitochondria and the ones we have are damaged due to oxidative stress as we continually fight off invading pathogens. Lyme disease speeds up the process. Bb triggers mitochondrial dysfunction which...
TLR9 is present on our cells in a circadian rhythm cycle. That protein receptor RECOGNIZES...UNDER METHYLATED bacterial DNA and triggers an immune response to it.
P.S. PQQ augments the expression of IFNGR1 (interferon gamma receptor #1) which encodes the ligand-binding chain (alpha) of the heterodimeric gamma interferon receptor,
which is found on macrophages
and enhanced the IFN--mediated janus kinase(JAK1) and signal transducer and
I'll let you figure out the STAT 1- VDR receptor connection.
And the Bb-calcium connection.
Hypercalcemia is common in several other diseases too...lupus, sarcoidosis (Hi, Trevor!), tuberculosis...
Never give up...there ARE ways! I'm esp. excited (and hopeful about) PQQ (in conjunction with CoQ10) to HELP our defense cells. It looks very promising.
Under this patent, see the list of functions of PQQ:
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