RE: Re: nightmares awake

[Guest guest]

Please feel free to email me off list if you need to vent or talk about this

any further.

It is awful to go through and I understand the dark days. It kind of

reminds me of the kill off phase of the antiviral or antifungal. You never

think you are going to get through it and sure enough one day you realize

that all the stuff driving you wild hasn`t happened for a couple of days!!!!

Hang in there!

Warm regards,

Lori

_____

From: [mailto: ] On Behalf Of S

Sent: August-04-10 2:39 PM

Subject: Re: nightmares awake

Thank you so much for taking the time to write! Both you and ! How

old is your son? As you said its as if no one really talks about it -the

nightmares. Some time back I posted once on an autism forum and got no

response. My son has been having them for a long time- as long as I can

remember. So I was like " okay, I'm the only one with the problem " .

Technically, the neurologist says he has some abnormal activity but it is

not enough to be a seizure nor has he had an actual seizur e but is very

restless and wakes multiple times a night. SHe said " hopefully, he will

outgrow it " . Another mom I spoke with ( we were talking waking up not

nightmares) said her son started sleeping better once he started seeing a

chiropractor and she put him on claritin and iron. Now he sleeps thru night.

SO, who knows.

Its funny that you mention the word " birds " . For months my son would wake up

in the middle of the night talking " blah blah bird " - he was young so that

was the only word I could inderstand. SO, finally I said I want you to draw

it for me- keep in mind he couldn't really draw much of anything at the

time- I'll guess that he was maybe 4. But I thought it might help calm him

down. SO at like 3am he drew not birds but Bert! from sesame street! I

couldn't believe it! All this time it was B urt (Bert and Ernie)he was

afraid of! The picture of Burt was pretty good so he must have had a good

picture of it in his mind. I was so upset that I had missed it all that

time.

Thank you again for writing. Really. I cried reading it -just knowing that

your son is better means mine can be too. Refills the batteries a little

>

> I know your child isn't wacko, nor is mine who has gone through the exact

> same sort of night terrors, although my son does not have a seizure

> disorder.

>

>

>

> What I do know is that for my child, it usually starts when he is ill,

> especially a fever. He will wake up usually 2 - 3 hours after he was

fallen

> asleep and is terrified, muttering, mumbling so that it is difficult to

> understand what he is saying and it usually doesn't make any sense

anyway..

> Sometimes I can get the occasional word out like " birds " , or something

else

> that to him appear to be flying around the room, yet he is awake enough to

> try and protect me, while he ducks and screams and continues to mumble

> incoherently.

>

>

>

> I can wake him enough to answer questions, yet he never fully comes out of

> the sort of trance that he is in. At times I thought he was possessed by a

> spirit it was so bizarre and scary!

>

>

>

> These episodes tend to carry on for nights and nights at a time probably

for

> 2 - 3 weeks, sometimes 2 -3 times a night, consistently at the same

time(s).

> I ask him about it in the morning and he has no recollection at all,

except

> that he does not want to go to bed and becomes extremely fearful and

> stressed at the thought of going to sleep. Then all is fine for months and

> months again until he gets ill again. Sometimes I can tell he is getting

> ill because the night terrors start before there are any other symptoms of

> illness or fever.

>

>

>

> I have discussed these episodes with Dr. Goldberg at great length. He has

> talked to me about neuro inflammation and how the brain can play tricks on

> the child. We talk a lot about it with my son, but little relieves his

> anxiety about it (he is not usually a kid plagued by anxiety at all!) when

> he is going through a phase of episodes. He does know that it is all

coming

> from his own brain and that there is nothing that can really hurt him. We

> used to come up with all kinds of strategies to help ease his bedtime

stress

> when going through this, such as a force field of love all around him to

> protect him and surround him by all good feelings of love and comfort and

> safety, but it is heart breaking as nothing seems to really help but time

> and having everything settle down again. I do now know that especially

when

> he is sick, or getting run down, his diet needs to be cleaner then ever to

> help reduce as much inflammation as possible.

>

>

>

> This is really tough and I have not heard many folks even on this board

> discuss this or answer any of my posts in the past. Going through it is

> hell, for you and your child. Hold on to the fact that it is temporary and

> " this too shall pass " . Have your son drink a lot of water to help cleanse

> any toxins from his body. Have him get some exercise during the day so he

> is good and tired and getting into a deep REM sleep stage each night.

>

>

>

> One thought that just occurred to me is that we did finally start an SSRI

> last January after being on the protocol for 7 years and we have not

> had any night terrors since then. I do know Dr. G talks a lot about the

> SSRI getting a deeper better quality of sleep and waking up fresh and

alert.

> This has definitely happened with my son and it may have something to do

> with why we have not had any of these episodes in 8 moths???

>

>

>

> Hang in there.

>

> This is hard, I know but you must stay strong, for you and for your child!

>

>

>

> Lori

>

>

>

> _____

>

> From: <mailto:%40>

[mailto: <mailto:%40> ] On Behalf Of

S

> Sent: August-01-10 12:12 PM

> <mailto:%40>

> Subject: nightmares awake

>

>

>

>

>

> Let me preface this by saying that my son isn't wacko and he has seizure

> activity that keeps him awake and we beleive is responsible for the

> nightmares but no one knows how to help or control it. Medicine did not do

> it. He has nights where he sleeps thru and otherwise is a pretty regular

> kid.

>

> Does anyone else's child have nightmares that when they wake up they are

> still so scared? My son wakes up and the dreams don't go away. Its so

scary

> for me too. We were up for hours last night while he swatted at bees. I

> don't know what to do. He doesn't seem to be able to distinguish. He knows

> hes awake and he knows that hes having dreams but it still seems to carry

> terror with it. He has been up every night for weeks between 2 and 7 am.

We

> are both exhausted. All I can do today is cry.

>

> The indecision- never knowing if this pill is going to do it or harm him

and

> what about 5yrs down the road? Whay about cdiff and the ABX? It helps him

> now but what about later? All of a sudden his OCDish symptoms are raging

so

> back on ABX he goes. And so on.

>

> I know I have to tow the line but today is a dark day.

>

>

>

>

>

>

[Guest guest]

Hey,

Wow - if it's hours, that doesn't seem to fall into the pattern of night terrors

but I could of course be wrong.

When I would have my friend over to spend the night as a teenager (when they

were the worst), she would be having a conversation with me until she figured

out (by my not answering properly) that I was asleep.  It would really freak

her

out lol.  I would also find myself sitting in another room, dressed, with my

portable radio in my lap, which I would be dreaming I was listening to.  But

the

episodes didn't last long. 

My youngest son used to wake screaming every 20 min to an hour, all night, every

night, writhing around for half an hour as if he was in extraordinary gut pain,

for the first year and a half of his life.  It was suspected that they were

night terrors.  However, after starting diflucan, by the 3rd night, he slept

four hours straight, and by the end of the 10-day course he was sleeping thru

the night, and when the diflucan ran out, within 3 more days it all started over

again.  I think I'm repeating myself there but I never really found out what

was

up with that.  It could have been night terrors, but there's also a kind of

seizure that happens during sleep, or he could have been in pain but why it only

happened during sleep is a mystery to me.  He could have been having a form of

abdominal migraine, but again, I don't know if those are sleep-related or not.

Anyway, if you feel like your child is really awake, you being Mom should know,

so I think you trust your instincts on that.  Seizures can cause so many other

wierd symptoms. 

About antibiotics... I spent the first 25 years of my life refusing to take

antibiotics (except when absolutely necessary, and I rarely finished them). 

They hurt my stomach so much (because I absolutely must have diflucan with them)

that I felt like they were evil.  Still there are types I absolutely won't

take.  But the first time (Dr G diagnosed me by phone w/mycoplasma pneumonia

when I'd been being treated for 'asthma' for 10+ years unsuccessfully) that I 

took doxycycline and connected it to my tics and brain function, it changed my

life.  I had PANDAS (although it was so close to Tourette's that it could have

been), and the very first time I took it, I lost many tics and behaviors and my

mind cleared up so much that I thought something was wrong because my thoughts

weren't racing.  I had thought it was normal.   I know I took it once before

and

I had some significant improvements then, but I didn't connect them that

time.  I also knew firsthand that fevers made me feel absolutely great and I'd

be clearer in my mind and have more energy, but after the fever passed, a week

later I was worse off than before.  Fever does bring about improvement, but I

would only let it burn when you know for sure it's viral, but even then, if you

have the choice for an antiviral for like the flu, I'd choose it over the child

being sick any longer than necessary.  We must do everything we can to relieve

the illnesses that trigger the immune system. 

I really do urge you to try an extended period of antibiotics, but the choices

of which ones is very important.  Dr G only likes a couple for any extended

period and the name is not coming to me at the moment - other parents can help

with that.  I think one is erythromycin, and there's a sulfa mix one if your

kid

can tolerate it - sulfa always scared me because I'm allergic to it but one of

my kids does very well on it.  Cefzil is good for 2-4 weeks but shouldn't be

done longer than that.  Zpacks are ok but can irritate OCD - I don't do well on

it at all but my kids seem ok with it.  If your child is old enough, the

tetracyclines can be very wow.  But this is best if he's under the care of a

doctor that will give antifungals as well - I can't remember if you're seeing Dr

R or Dr G or not? 

Like you, I've seen fevers bring on great symptoms, so when my kids are sick I

let it burn a few hours until bedtime.  Except once when my son was off the

protocol for financial reasons, he had been having CFS symptoms bad for several

months and running a low grade temp of about 100 every night, and then he

suddenly spiked a fever of 106.9!  It was scarey.  I didn't feel like I had

time

to take him to the ER to have it documented - you have about 20 minutes with a

fever that high to get it cooled down, I've heard.  But during it, instead of

seeming ill at all, he was the brightest and cheeriest I had seen him in months

and months.  And after that fever, he had several whole months where his

symptoms were very improved, and he could walk around again (he was only 6!),

and his speech improved (it was regressing badly, as well as his eye-contact),

etc.  I'm certain it was HHV6 that caused the fever, but I believe it was the

immune system finally 'finding' it and responding with fever that helped him the

most, not specifically the fever.  But within a few months he went downhill

again, and this time I took him to Dr asap to restart the protocol, and

I found a way to pay for it later.

I guess I'm just rambling.  I missed my doxycycline yesterday and today and I'm

getting loopy.  I just want to share what experiences changed how I felt about

antibiotics.  They have such a bad rap, and some really are bad choice - like

the 3 " A's " like Augmentin, amoxycline, and another one.  But they are soooooo

important if there is PANDAS, OCD, anxiety ... the positives could very well

outweigh the negatives for him.

HTH

________________________________

From: S <webshopping2009@...>

Sent: Mon, August 2, 2010 10:35:06 AM

Subject: Re: nightmares awake

 

Thanks so much

Its true, my son generally has noticeable improvement after ABX treatment-

usually though he gets ABX due to an illness. He isn't on longterm ABX. We kept

trying to explain to people that he gets better after hes sick.

WHen you say you seemed awake- how long are these episodes? My son will be like

this for hours. Would you have a conversation and eat or got to the bathroom

without waking?

Thanks so much for your help

>

> Hey,

> I had night terrors during some of my very bad OCD periods.  I behaved as

if I

>

> was awake, talked and responded, but I was asleep.

> Anyway, having ocd/PANDAS, I would say that after many years of suffering, I

am

>

> very very pro-antibiotics.  The problems in the body triggering this are

worse

>

> than what the antibiotics do.  But for me, the greatest benefit is when I

have

>

> the antibiotic and the antifungal together, not just either or.  Other

factors

>

> impact it too, though ... allergenic foods can increase it, as well as other

> illnesses.  I cannot take any supplements - they frequently make it worse.

> I have not gotten Cdiff - I've been tested several times.  I do have IBS on

> occasion, but I had it before I had ever taken antibiotics, and it is actually

> better on them than off.  I also cannot take probiotics - they make my

>symptoms

>

> worse - ocd & anxiety.  And although antivirals shouldn't seem to matter, I

>feel

>

> like I've made the most progress in the last year since they were added and

> since I had long-term antibiotics and antifungals with no breaks.

> I do remember several very vivid dreams where I woke and my heart was still

> racing and I had an adrenaline rush going.

> So does he remember the dreams the next day?

> HTH

>

>

>

>

>

> ________________________________

> From: S <webshopping2009@...>

>

> Sent: Sun, August 1, 2010 11:12:29 AM

> Subject: nightmares awake

>

>  

> Let me preface this by saying that my son isn't wacko and he has seizure

> activity that keeps him awake and we beleive is responsible for the nightmares

> but no one knows how to help or control it. Medicine did not do it. He has

> nights where he sleeps thru and otherwise is a pretty regular kid.

>

> Does anyone else's child have nightmares that when they wake up they are still

> so scared? My son wakes up and the dreams don't go away. Its so scary for me

> too. We were up for hours last night while he swatted at bees. I don't know

>what

>

> to do. He doesn't seem to be able to distinguish. He knows hes awake and he

> knows that hes having dreams but it still seems to carry terror with it. He

has

>

> been up every night for weeks between 2 and 7 am. We are both exhausted. All I

> can do today is cry.

>

>

> The indecision- never knowing if this pill is going to do it or harm him and

> what about 5yrs down the road? Whay about cdiff and the ABX? It helps him now

> but what about later? All of a sudden his OCDish symptoms are raging so back

on

>

> ABX he goes. And so on.

>

> I know I have to tow the line but today is a dark day.

>

>

>

>

>

>

>

>