Links between excessive urination and kids with DS/autism and/or Hinman syndrome

[Guest guest]

IT seems so unbelievable that major studies into children with DS and the many

physical diversities are not studied! Kids with autism/urological abnormalities

and hinman syndrome seem to be so unknown as to what is really going on?? Kids

with PKU disease and even recently fragile X now know what causes the

intellectual problem in these kids! BUT I just can't seem to find others that

are connecting the dots for our little angels! Maybe writing this not will help

me connect with others who feel that we need to work to connect the dots to find

answers to what is really going on with down syndrome kids and medical problems!

If we begin to make connections and want to STOP the illnesses/intellectual

challenges in our kids we must look at the connections and begin to piece it

all together!

has been such an ongoing concern for more than 3 years now. He has

severe polyuria and kidney swelling. He was born with kidney swelling and it

never seemed to go away. pees far too much! He empties between 3.5

and 5 liters in any given day! YET he only drinks 1.5-2 liters!!!! At times he

develops severe dehydration and has even shown signs of severe shock due to

dehydration!

NO doctor has been helpful in stopping any of these problems! TWO different

doctors asked me to cut back on the amount he drinks. BUT after 5 emergencies

caused by dehydration after doing this it is clear this idea is very dangerous

and clearly these doctors don't understand what is going on!

Jezeriah had kidney swelling enutero and at birth. Swelling seemed to go away

when they did an ultrasound at about 1 year old. BUT for the past few years

Jezeriah will soak his diaper and entire cloths in minutes all of a sudden with

NO fluid intake!!!!!

FOR me my GUT tells me this maybe a kidney problem that has YET to be

discovered! In fact I have heard of other kids that end up with all kinds of

complications due to major urological issues including a neurogenic bladder.

What was more interesting is that many of these children all have excessive

peeing like my boys! Kids with autism seem to have problems with excessive

peeing too!

So I went to a naturopath who is also an expert in kids with autism! She

recommended a few things for . With the cost of all the supplements I

chose a few to begin with. Last week for birthday I got the remainder

of the supplements. One that seemed to work to finally slow the pee sometimes

is cordyceps! My naturopath recommended starting Jezeriah on this because of

his weird excessive pee patterns! THIS pill supports kidney detox and kidney

healing! Well...from the first pill Jezeriah stopped peeing so much!!!! HIS

pee output returned to normal levels! Maybe there is more in the kidneys for

many of our kids with DS/autism and kids with so called hinman syndrome??

People who take lithium end up with a neurogenic bladder! This is often

accompanied with excessive peeing! Clearly the lithium causes great harm to the

kidneys! So what causes great harm to our kids????

HOW is it that No one bothered to look into these aspects further! It is

commonly known that our kids with DS have swollen kidneys! BUT why can we

figure it all out and try connecting the DOTS to save so many kids with DS and

spare them a life with dialysis and even death because of kidney failure! Why

do we seem to ignore and fail to connect the dots!!!

had swelling of kidneys since birth! He has grade 3 hydroneuphrosis

since I can remember! BUT after seeing a NEW urologist I began to take more

NOTE of 's amounts of peeing!!! NOW I clearly believe the problem may

in fact begin with excessive peeing that goes unnoticed and unchecked for

years....until it is all too late!!!

was lucky, I saw very subtle changes and acted fast! BUT when I look

back swollen ureters, huge bladder and kidney swelling was clearly a

sign of too much urine passing thru HIM! HIS bladder soon became immune to the

HIGH volumes and he developed a non feeling bladder! THIS is known as a

neurogenic bladder. BUT what was most interesting was that when we finally got

a bladder scanner has over 300ml's to empty each and every hour!!! IF

I emptied it hourly his bladder and kidneys slowly began to look more normal!

In fact at the last ultrasound 's bladder and kidneys actually decreased

in size after emptying his bladder just once! The kidneys and bladder decreased

in size like I was never able to see in past ultrasounds! The kidneys were at a

grade 1 down from a grade 3-4 for the first time in his life! His ureters were

not even visible anymore! All because I stepped up the peeing top hourly!

Clearly the real problem for was the excessive amount of pee he was

generating!

HOW is this missed or skipped by??? HOW many other special needs children would

never have the chance to measure pee volume JUST because it is complicated to

measure output in a special needs child easily! WHY is this vital factor being

left out of the equation for so many kids! I believe once we treat this problem

we will see that in fact other issues clear and the child can heal! Most

importantly the KIDNEYS can have the CHANCE TO HEAL! ONLY then will our kids

having a fighting chance at living a long and healthy LIFE!!!!

Questions to be asked to support this change and better understanding are...

Do you have a child with urological challenges?

Do you have a child with autism.DS or hinman syndrome?

Could your child be peeing too much even when they are not drinking?

Does you child have swollen kidneys?

Did your child have swollen kidneys inutero or at birth?

Does your child seem to pee at any time on demand?

Are you having troubles toilet training your child because he just seems to

always have to pee?

Does your child pee very long pees?

Do you feel your child holds far too much pee?

Do you feel your child's amount of peeing may have made his bladder STOP

feeling?

Does you child have ureters, bladder and kidneys that are HUGE?

Did your child ever have a bladder/kidney infection?

Do you feel your child gets dehydrated very quickly in the summer?

Do you feel you need to bring liquids wherever you go to support your child's

health?

Do you feel your child needs to drink throughout the day?

Do you feel your child can not do without liquid for a day or he/she will be

ill?

Do you feel even if your child pees far too much, he can go for a day or more

without drinking at all?

Do you feel your child stops and starts when he/she pees?

Does you child have specific signs of prolonged dehydration?

Does you child have a small head size/dry skin/dry scalp/

If oil is put on the head does it soak in his/her head in minutes?

Does you child sweat?

Does your child cry tears?

Does you child have constipation/runs?

Does your child have cracked lips?

I am looking to have these questions answered by as many families as possible!

It could develop into the break we need to find answers to support our kids

health challenges! If your son/daughtercould possibly have excessive urination

autism/down syndrome/urological abnormalities/ or hinman syndrome, please answer

these questions for me and forward this to me! I will bring this info forth to

several kidney specialist to help them understand our children better to make

better studies and find answers for these children. There are so many

correlations missing because the volume of pee is not considered at the primary

problem for our children! Maybe we can discover the real issues and heal our

children's kidneys before it is too late! With your willingness and answers so

much can become possible!

My email address is kiarra52002@... FOR the love of our children's future

PLEASE JOIN Me in connecting the dots and finding the answers to heal our

children!

Thanks so much!

Pamela

MOM to two with autism/down syndrome!

20 and Jezeriah 4!