Re: Re: ObsessiveDrinking/Peeing

[Guest guest]

Hi

I read all the messages on drinking & peeing obsessivley with interest.

also consumes large amounts of water & pees obsessivley.

Has anyone asked Dr. G about this & do you think he knows it is a common

pattern in so many of our kids?

Regards

Sharon

Re: ObsessiveDrinking/Peeing

> Hi

>

> It is so odd that this was mentioned. My son pees constantly it

> seems, at times. Far more than his peers. But, he drinks a lot more

> than his peers as well.

>

> I've often feared perhaps Diabetes but b/c this has now been going on

> for some time, I find that highly unlikely. I will of course mention

> it at his appt but I suspect his glucose/insulin are just fine.

>

> I have no idea what this all even means, but I find it more than

> coincidence.

>

> He pees like 4 times in a hour after he drinks about 12oz of water

> (with 1-2 oz juice mixed in). And even then I think he probably pees

> at least two more times in the following hour.

>

> He drinks at least 50 oz of fluid a day, primarily water - b/c he

> asks for it. I also suspect if I gave him more, he would drink up.

> He never refuses! (He is about 38inches , 33lbs and just turned 3.)

>

> At night, he gets one last drink (8 -12 oz) and by morning his dipe

> is extrememly full and often leaks.

>

> I always figured it was just b/c he drank so much . . . but now maybe

> I should be wondering why he drinks so much and is the output really

> in proportion to the input, so to speak?

>

> Just thinking out loud here, I guess . . . but if anyone has any

> thoughts please share!

>

>

>

>

>

>

> Responsibility for the content of this message lies strictly with

> the original author, and is not necessarily endorsed by or the

> opinion of the Research Institute.

>

>

>

[Guest guest]

Hi ,

All the posts today bring me back to last year when we had no idea what was

wrong or where to turn for help.

My son also had inappropriate laughing during the night. He would wake up and

giggle and act like he was high on drugs. This started at the same time that his

hair and eye color changed and his pupils were always dialated.

We noticed that his breath has a sweet smell but glucose level was fine, the

onle thing that was abnormal was that he had ++2 protein show up in his urine

during this time? This was a consistent problem.

Of course his ped. did not know what to make of the odd behavior or medical

issues. We had him tested for hypoglycemia as well as hyperglycemia. This was

inconclusive. The Dr. did say that he had trouble regulating his glucose and

recommended many small meals high in protein and lots of healthy snacks(this was

a major challenge because my son never liked to eat, meals were always full of

stress and tears).Lots of GI problems in the past.

The problem resolved when we started the protocol. We now know if he

wakes in the night laughing he will be " off " for about 3-6 days. I cringe until

he starts to talk every morning still. If his first words are good morning

Mommy, I'm thristy. Then I know he's o.k.. If he wakes and starts to video talk

or laugh, it's going to be a long day, especially if he has no preschool.

I wonder if he had the problem with excessive urinating before the age of 3?

We didn't notice it until he was potty training. He had soaking wet diapers in

the morning and I remember washing lots of crib sheets also.

There has to be a connection if so many of our kids have the same symptoms!

Sorry to go on and on like this, but the similarities astonish me. I'm sure that

someone can help with more information?? Take care. I'll talk to you soon.

Re: ObsessiveDrinking/Peeing

Hi

It is so odd that this was mentioned. My son pees constantly it

seems, at times. Far more than his peers. But, he drinks a lot more

than his peers as well.

I've often feared perhaps Diabetes but b/c this has now been going on

for some time, I find that highly unlikely. I will of course mention

it at his appt but I suspect his glucose/insulin are just fine.

I have no idea what this all even means, but I find it more than

coincidence.

He pees like 4 times in a hour after he drinks about 12oz of water

(with 1-2 oz juice mixed in). And even then I think he probably pees

at least two more times in the following hour.

He drinks at least 50 oz of fluid a day, primarily water - b/c he

asks for it. I also suspect if I gave him more, he would drink up.

He never refuses! (He is about 38inches , 33lbs and just turned 3.)

At night, he gets one last drink (8 -12 oz) and by morning his dipe

is extrememly full and often leaks.

I always figured it was just b/c he drank so much . . . but now maybe

I should be wondering why he drinks so much and is the output really

in proportion to the input, so to speak?

Just thinking out loud here, I guess . . . but if anyone has any

thoughts please share!

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

Sharon~~

Haven't asked, but will certainly do so in my consult tonite.

All the best~~

Rose

Re: Re: ObsessiveDrinking/Peeing

Hi

I read all the messages on drinking & peeing obsessivley with interest.

also consumes large amounts of water & pees obsessivley.

Has anyone asked Dr. G about this & do you think he knows it is a common

pattern in so many of our kids?

Regards

Sharon

//message thread truncated//

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

Hi Rose I have missed most these posts regarding obsessive peeing but wanted

to mention that Dr. Swedo of the NIMH, head researcher into PANDAS,

published a paper within the past few years in which urinary frequency

and/or obsession with urinating is listed among the characteristics of this

type of OCD. I no longer have it at hand and so can't cite this reference,

but you could probably come up with it with some searching. My child is a

PANDAS kid, former pt. of Dr. G's 3 years, her dx is OCD +tics rather than

autism spectrum. She had this sudden, out-of-character urinary symptom at

her original onset of symptoms at age 4 years, 11 months. It's such an odd

thing I about fell over when I read it in Dr. Swedo's research paper.

Kathy IN

Date: Sun, 14 Sep 2003 11:17:00 -0400

From: " Rose Derkay " <Momusic40@...>

Subject: Re: ObsessiveDrinking/Peeing

So Jon~~

What am I to do????????? In talking to Dr. G Friday nite, he believes it

to be behavioral, but wanted us to track the behavior and our son's reaction

to our admonishments/disciplinary measures. I wish I had thought to bring

up the fact that many Mom's have been commenting on the same behavior in 3

yo's on this list. This can't possibly be a learned behavior at that age.

I will mention it in my weekly report. But otherwise, am hoping newly

implemented SSRI may relinquish some of this behavior.

Jon, I also have been struck by the fact that this behavior came on the

tail of removing milk/casein products from his body. Do you think this

correlation has any impact on the obsessive drinking/peeing behavior.

Thanks so much~~

Rose

______________________________________________

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

Kathy~~

Thank you so much, I'll check it out. Sounds like your daughter is doing good.

All the best~~

Rose

Re: Re: ObsessiveDrinking/Peeing

Hi Rose I have missed most these posts regarding obsessive peeing but wanted

to mention that Dr. Swedo of the NIMH, head researcher into PANDAS,

published a paper within the past few years in which urinary frequency

and/or obsession with urinating is listed among the characteristics of this

type of OCD. I no longer have it at hand and so can't cite this reference,

but you could probably come up with it with some searching. My child is a

PANDAS kid, former pt. of Dr. G's 3 years, her dx is OCD +tics rather than

autism spectrum. She had this sudden, out-of-character urinary symptom at

her original onset of symptoms at age 4 years, 11 months. It's such an odd

thing I about fell over when I read it in Dr. Swedo's research paper.

Kathy IN

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

Cheryl~~

Wow, this is a lot of information. So...my son's strep titers were three

times the normal range, does this point to him having PANDAS?? As for the last

statement about constant lower urinary tract problems being related to MS, WOW,

I'm stunned. Would anyone of the testing Dr. G did/does be able to point this

out? What are the differences in therapies for & PANDAS?

Thanks so much~~

Rose

Re: ObsessiveDrinking/Peeing

> My son is 10. It started happening after the Eurythromiacin was

added. He seemed thirstier, etc.

> Rose

Hi Rose,

The thirst/urinary problems are common to CFS, MS, etc. My younger

son has the severe problems that were mentioned earlier. Whenever

he had an OCD flair the bladder problems could get pretty bad. For

whatever reason......erythromycin helped at first but he seems to go

downhill after about two weeks on it. With a few other antibiotics

his response was pretty dramatic. He also goes downhill if we try

to increase SSRI's past a minimal dose.

Below is a previous message (click on link) that's more detailed and

I've also included info below on the bladder problems.

Cheryl

/message/17456

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

Kathy~~

Thanks again, I've looked into PANDAS and the urinary problem connection and

have a few more questions for you, if you don't mind. Have you used any of the

treatments: penicillin, cephalosporin, PEX or IVIG? Do any of these work? My

son has verbal tics, grunting & barking noises, etc. after a sore throat or

illness. I think we have just struck on something. How does all of this work

in conjunction with ? Is there a PANDAS website or list where I can more

parent reaction and information.

Thank you so much~~

Rose

Re: Re: ObsessiveDrinking/Peeing

Hi Rose I have missed most these posts regarding obsessive peeing but wanted

to mention that Dr. Swedo of the NIMH, head researcher into PANDAS,

published a paper within the past few years in which urinary frequency

and/or obsession with urinating is listed among the characteristics of this

type of OCD. I no longer have it at hand and so can't cite this reference,

but you could probably come up with it with some searching. My child is a

PANDAS kid, former pt. of Dr. G's 3 years, her dx is OCD +tics rather than

autism spectrum. She had this sudden, out-of-character urinary symptom at

her original onset of symptoms at age 4 years, 11 months. It's such an odd

thing I about fell over when I read it in Dr. Swedo's research paper.

Kathy IN

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

My 4 yr.old son also has something similar to this. We began potty training him

the " ABA " way this past May. He was doing well with a " habit " schedule (he's

non-verbal) of staying dry 2-3 hrs in between bathroom breaks, with some

accidents. As of late summer, it has completely fallen apart. He doesn't seem

to have the ability to stay dry anymore, peeing small amounts every 10 minutes,

usually right after he gets off the potty. He is in a new school (full day,

which is new too). They no longer will allow him to stay in underwear (want

pull-ups). His urinalysis was negative. He does stay dry all night though. I

don't know what to do. We have tried taking him to the bathroom every 15

minutes, pants checks with reinforcement for dry. Nothing seems to work. He

also takes his underwear off if they get wet and pees a little throughout my

house. Do I need to stop completely, go back to pull-ups and start from scratch

or continue putting dry underwear on every 10 minutes? He likes to drink a lot

too, not obsessively, but usually diet pop,soy milk, or sugar free lemonade, not

water. Thanks, Kathy

Re: ObsessiveDrinking/Peeing

> My son is 10. It started happening after the Eurythromiacin was

added. He seemed thirstier, etc.

> Rose

Hi Rose,

The thirst/urinary problems are common to CFS, MS, etc. My younger

son has the severe problems that were mentioned earlier. Whenever

he had an OCD flair the bladder problems could get pretty bad. For

whatever reason......erythromycin helped at first but he seems to go

downhill after about two weeks on it. With a few other antibiotics

his response was pretty dramatic. He also goes downhill if we try

to increase SSRI's past a minimal dose.

Below is a previous message (click on link) that's more detailed and

I've also included info below on the bladder problems.

Cheryl

/message/17456

Arch Pediatr Adolesc Med. 2002 Apr;156(4):356-61. Related Articles,

Links

Prospective identification and treatment of children with pediatric

autoimmune neuropsychiatric disorder associated with group A

streptococcal infection (PANDAS).

ML, Pichichero ME.

Elmwood Pediatric Group, University of Rochester Medical Center, 601

Elmwood Ave, Box 672, Rochester, NY 14642, USA.

BACKGROUND: The current diagnostic criteria for pediatric autoimmune

neuropsychiatric disorder associated with group A streptococcal

infection (PANDAS) are pediatric onset, neuropsychiatric disorder

(obsessive-compulsive disorder [OCD]) and/or tic disorder; abrupt

onset and/or episodic course of symptoms; association with group A

beta-hemolytic streptococcal (GABHS) infection; and association with

neurological abnormalities (motoric hyperactivity or adventitious

movements, including choreiform movements or tics). OBJECTIVE: To

assess new-onset PANDAS cases in relation to acute GABHS

tonsillopharyngitis. DESIGN: Prospective PANDAS case identification

and follow-up. RESULTS: Over a 3-year period (1998-2000), we

identified 12 school-aged children with new-onset PANDAS. Each

patient had the abrupt appearance of severe OCD behaviors,

accompanied by mild symptoms and signs of acute GABHS

tonsillopharyngitis. Throat swabs tested positive for GABHS by rapid

antigen detection and/or were culture positive. The GABHS serologic

tests, when performed (n = 3), showed very high

antideoxyribonuclease antibody titers. Mean age at presentation was

7 years (age range, 5-11 years). In children treated with

antibiotics effective in eradicating GABHS infection at the sentinel

episode, OCD symptoms promptly disappeared. Follow-up throat

cultures negative for GABHS were obtained prospectively after the

first PANDAS episode. Recurrence of OCD symptoms was seen in 6

patients; each recurrence was associated with evidence of acute

GABHS infection and responded to antibiotic therapy, supporting the

premise that these patients were not GABHS carriers.

The OCD behaviors exhibited included hand washing and preoccupation

with germs, but daytime urinary urgency and frequency without

dysuria, fever, or incontinence were the most notable symptoms in

our series (58% of patients). Symptoms disappeared at night, and

urinalysis and urine cultures were negative.

CONCLUSION: To our knowledge, this is the first prospective study to

confirm that PANDAS is associated with acute GABHS

tonsillopharyngitis and responds to appropriate antibiotic therapy

at the sentinel episode.

PMID: 11929370 [PubMed - indexed for MEDLINE]

Shimizu I, Kawashima K, Ishii D, Oka M. Related Articles, Links

Urodynamics in a rat neurogenic bladder model with a unilateral

electrolytic lesion of the basal forebrain.

BJU Int. 2003 Jun;91(9):861-7.

PMID: 12780849 [PubMed - indexed for MEDLINE]

Sakakibara R, Uchiyama T, Yoshiyama M, Yamanishi T, Hattori T.

Related Articles, Links

Urinary dysfunction in patients with systemic lupus erythematosis.

Neurourol Urodyn. 2003;22(6):593-6.

PMID: 12951670 [PubMed - in process

Eur Urol. 2003 Sep;44(3):I-XV. Related Articles, Links

Neurogenic Voiding Dysfunctions (NVD).

Jonas U, Castro- D, Bemelmans BL, Madersbacher H, Lycklama a

Nijeholt AA.

Department of Urology, Medizinizche Hochschule Hannover, Carl

Neubergstrasse 1, D-30625, Hannover, Germany

Neurogenic lower urinary tract dysfunction continues to represent a

diagnostic and therapeutic challenge. Many different conditions

affecting the vesicourethral system have their origins in the

nervous system, and it is important to recognise that lower urinary

tract symptoms (LUTS) may sometimes be one of the first signs of

neurological disorders such as multiple sclerosis (MS). A sound

urodynamic investigation forms the basis for both the diagnosis and

the therapy of neurogenic voiding dysfunction, the treatment of

which is usually symptomatic.

PMID: 12932941 [PubMed - in process]

_____________________________________________

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

Could it be sensory/yeast related? My son's ability to control his bladder is

very related to whether there is an overgrowth of candida in his system. When

we switched antifungals, (it was time -- he'd been on Nizeral for 6 months; we

switched him to Diflucan), the problem disappeared.

Donna

Re: ObsessiveDrinking/Peeing

> My son is 10. It started happening after the Eurythromiacin was

added. He seemed thirstier, etc.

> Rose

Hi Rose,

The thirst/urinary problems are common to CFS, MS, etc. >>>>>

//message truncated//

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

Rose,

The point I was trying to make is that a malfunctioning brain can cause the

symptoms. With MS the bladder infections are a secondary issue that can

develop in that disorder. I doubt that would apply to other disorders that

don't involve that type of damage.

Only some people are genetically susceptable to developing PANDAS. For

many, strep and other infections may be just one more thing adding to the

immune dysfunction. The PANDAS symptoms are pretty unique and hard to miss.

My son had immune dysfunction and symptoms of ASD. He didn't develop OCD

until he was seven and it's a completely separate problem. What helps his

ASD, doe's nothing for his OCD. When the OCD hits, antibiotics are the only

thing that helps.

What has been extremely difficult for us is that my son's OCD is triggered

by a bacteria other than strep. When it hits his sedrate always goes up and

different markers like C-reactive protein, thyroid antibodies, anti-nuclear

antibodies, etc have been elevated. It's definitely an acute reaction as

opposed to chronic.

Cheryl

----Original Message Follows----

From: " Rose Derkay " <Momusic40@...>

Reply-

< >

Subject: Re: Re: ObsessiveDrinking/Peeing

Date: Mon, 15 Sep 2003 09:11:56 -0400

Cheryl~~

Wow, this is a lot of information. So...my son's strep titers were three

times the normal range, does this point to him having PANDAS?? As for the

last statement about constant lower urinary tract problems being related to

MS, WOW, I'm stunned. Would anyone of the testing Dr. G did/does be able to

point this out? What are the differences in therapies for & PANDAS?

Thanks so much~~

Rose

_________________________________________________________________

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[Guest guest]

Kathy~~

I agree, no behavioral intervention seems to work.

Rose

Re: Re: ObsessiveDrinking/Peeing

My 4 yr.old son also has something similar to this. We began potty training

him the " ABA " way this past May. He was doing well with a " habit " schedule

(he's non-verbal) of staying dry 2-3 hrs in between bathroom breaks, with some

accidents. As of late summer, it has completely fallen apart. He doesn't seem

to have the ability to stay dry anymore, peeing small amounts every 10 minutes,

usually right after he gets off the potty. He is in a new school (full day,

which is new too). They no longer will allow him to stay in underwear (want

pull-ups). His urinalysis was negative. He does stay dry all night though. I

don't know what to do. We have tried taking him to the bathroom every 15

minutes, pants checks with reinforcement for dry. Nothing seems to work. He

also takes his underwear off if they get wet and pees a little throughout my

house. Do I need to stop completely, go back to pull-ups and start from scratch

or continue putting dry underwear on every 10 minutes? He likes to drink a lot

too, not obsessively, but usually diet pop,soy milk, or sugar free lemonade, not

water. Thanks, Kathy

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

Thank you, it could be, we've been on amp.B for over 6 mos. Kathy

Re: Re: ObsessiveDrinking/Peeing

My 4 yr.old son also has something similar to this. We began potty training him

the " ABA " way this past May. He was doing well with a " habit " schedule (he's

non-verbal) of staying dry 2-3 hrs in between bathroom breaks, with some

accidents. As of late summer, it has completely fallen apart. He doesn't seem

to have the ability to stay dry anymore, peeing small amounts every 10 minutes,

usually right after he gets off the potty. He is in a new school (full day,

which is new too). They no longer will allow him to stay in underwear (want

pull-ups). His urinalysis was negative. He does stay dry all night though. I

don't know what to do. We have tried taking him to the bathroom every 15

minutes, pants checks with reinforcement for dry. Nothing seems to work. He

also takes his underwear off if they get wet and pees a little throughout my

house. Do I need to stop completely, go back to pull-ups and start from scratch

or continue putting dry underwear on every 10 minutes!

? He likes to drink a lot too, not obsessively, but usually diet pop,soy

milk, or sugar free lemonade, not water. Thanks, Kathy

//message thread truncated//

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

Hi -

I remember reading on a CFIDS group about glucose

intolerance and following the modified Zone diet to

help with it. It was about having not true diabetes,

but still experiencing some of the symptoms of it, and

I believe increased urination and thirst to be one of

these. Unfortunately I did not save it, but you might

be able to do a search about glucose intolerance and

Chronic Fatigue syndrome - unless it was in one of the

chat groups I visited briefly. But if you could find

it, it might help locate some similarity to that. I'm

sorry - I wish I could help more on that. Your post

just reminds me of what I had read.

Also, I tend to increase visits to the bathroom and

get much thirstier when I am feeling " off " (I'm quite

too with a somewhat resolved history of CFS). I

think it may be pretty common in the adults although I

don't read about it as much here. Also, my littlest

one went through some periods where he soaked

even his over-sized overnight extra-exorbant diaper so

bad in the night that it flooded over, and I can't

even say that he drank that much more than normal. It

was just a brief spell that went away before I had

time to worry much about it.

No advise on it - sorry. Just a suggestion of

something to read about.

Take care-

--- ajsera2001 <AJSERA@...> wrote:

> Hi

>

> It is so odd that this was mentioned. My son pees

> constantly it

> seems, at times. Far more than his peers. But, he

> drinks a lot more

> than his peers as well.

>

> I've often feared perhaps Diabetes but b/c this has

> now been going on

> for some time, I find that highly unlikely. I will

> of course mention

> it at his appt but I suspect his glucose/insulin are

> just fine.

>

> I have no idea what this all even means, but I find

> it more than

> coincidence.

>

> He pees like 4 times in a hour after he drinks about

> 12oz of water

> (with 1-2 oz juice mixed in). And even then I think

> he probably pees

> at least two more times in the following hour.

>

> He drinks at least 50 oz of fluid a day, primarily

> water - b/c he

> asks for it. I also suspect if I gave him more, he

> would drink up.

> He never refuses! (He is about 38inches , 33lbs and

> just turned 3.)

>

> At night, he gets one last drink (8 -12 oz) and by

> morning his dipe

> is extrememly full and often leaks.

>

> I always figured it was just b/c he drank so much .

> . . but now maybe

> I should be wondering why he drinks so much and is

> the output really

> in proportion to the input, so to speak?

>

> Just thinking out loud here, I guess . . . but if

> anyone has any

> thoughts please share!

>

>

__________________________________