12/1/15
(I
wrote this to a parent who indicated that enemas are not working as
expected, and who is considering putting her child back on a low dose of
Miralax in hopes of helping her child)
I'm
sure I already asked you if your child was ever tested for the presence
of h. Heilmannii. I feel so sorry for you and your daughter, and hope
that you find the cause for her symptoms....but in case of obstruction,
enemas are dangerous, no matter what the others on this page or your
doctor says.
Because
the saline enema made my son shiver and shake uncontrollably, and
because at least half of the water didn't come back out, as well as not
enough stool, I stopped giving him saline enemas (which work by
irritating the lining of the intestine -- i only administered these
twice);
After
this, i gave my son two very slightly warmed milk and molasses enemas
-- how they work: the slightly warmed milk and the molasses together
form a gas that inflates the intestine just slightly, and then the milk
coats the lining of the intestine and makes it slickery so that the poop
that's in there just slides out. Until the late 1980's, milk and
molasses enemas were the hospital standard.
I
administered the enemas to my son very gently, but the enema liquid can
only go up so far, and if her intestines are already full of poop,
their integrity is being compromised, and your daughter is at risk of
intestinal perforation. On ultrasound, it was shown that my son had "a
large amount of non-specific, free fluid in his peritoneum" and I am
nearly certain it came from enemas. This can lead to peritonitis, which
in many cases is fatal.
Our
experience at the hospital was simply so bad...they pumped PEG3350 into
my son every which way, and none of it had any effect; when they
indicated that they were about to start administering saline enemas, I
really became afraid, and asked the doctor to do a milk and molasses
enema instead -- she seemed surprised, but then when she saw the huge
amount of poop that came out, she performed three enemas on him in rapid
succession, and wow, he became so ill...it was just so dangerous for
him...
A
lot of doctors are looking for a great big obvious obstruction, like a
fecaloma....but I believe that many times the obstruction is actually
being caused by inflammation of the gastric mucosa; when the gastric
mucosa gets inflamed, it essentially thickens the inner lining of the
intestines, causing constriction...impeding the passage of stool through
the intestines; my experience is that radiologists have trouble
discerning this on imaging studies...
This
was the case in our son; he also experienced sadness and anxiety,
because he knew he needed to poop and could not; because he wanted to
poop but everyone kept insinuating he was holding in his poop; the poop
that was in him, when it came out, smelled poisonous, and everyone
around him would wonder where the smell was coming from...so at school
and such, he would just sit very still in his seat in an effort to
contain the smell. There were many days when he was so sick, he couldn't
go to school, all he wanted to do, all he could do was lay on the
sofa....and the fear and trepidation in his eyes and on his face was the
same as the fear and trepidation I felt within me -- i just
instinctively could not bring myself to administer any more enemas to
him.
When
I read people saying that more than one of their children struggled
with constipation, it really makes me wonder if there might be an animal
in the house who has transmitted h. heilmannii to members of their
family, whether child or adult...
I
hear the stress and anxiety in your words, and I pray for you and your
daughter...and I pray that you find the cause. I know I've received all
kinds of hisses and boos any time I say that behavioral withholding is
unlikely, but it is. A kid has a hard time explaining these things just
like adults do: my son said it felt like something inside him was stuck;
it turned out his pylorus was swelled shut, and his entire bowel --
small intestine and large intestine -- was full of stool that he
struggled to pass because it was outside of the realm of his physical or
mental control.
I
praise God we figured out what was really the matter when we did...he
struggled with his stooling disorder for more than three years before it
was all figured out, and when the doctors realized they had been wrong
all along about the withholding thing, I think I already told you, they
ganged up on me, testified against me in court, and had my kids taken
away, claiming I had medically neglected my son by refusing to give him
Miralax...
It
is a small comfort to know that he got the correct medicinal treatment
when he did -- eight weeks after taking the correct medicine, he began
to stool normally again, and I rejoice for that, even from afar...
I advise you to start bringing along a voice recorder to assist you in your recall of your doctor's appointments; regardless of whether you live in a one-party or two-party recording state, it is permissible to record your doctor's visits to assist you in your recall of what you were told. Appointments are short, and doctors are busy, and even if you bring along a list of questions, you might not always remember the answers that were given. So record. For your own benefit and your child's...so that you can double-check the answers your doctor gives you...because doctors can be wrong, and some of them are wrong *often*.The other thing I recommend is that you go to an independent testing facility, and pay out of pocket for them to perform a blood test for h. Heilmannii infection. The infection is easily treated with antibiotics.
And then tell your doctor what up, and ask that the proper medication be prescribed. It will take between 6-8 weeks before you see improvement, but you will see improvement...much faster than you ever saw any change with their crazy "potty chart" behavior modification and poisonous miralax concoctions.
In closing, I hope that your son's diagnosis of autism is not related to his stooling disorder. Our son was seven when his stooling abruptly changed, and he had difficulty articulating what he was actually feeling and experiencing until he was ten. It's hard to explain what you don't understand...kids aren't experts in the digestive process, anatomy, etc...anymore than most adults are, and we are all taught that poop is icky and no-no, no poopie, blah blah blah...it makes us all too shy and uncomfortable to discuss at any age, but a toddler especially will have trouble explaining it.
They tried to say our son was autistic again and again, and that he was withholding and all kinds of other nonsense and it was all quackery. If his diagnosis is in any way linked to his stooling disorder, I urge you to reconsider it...it might very well be BALDERDASH and just a doctor blaming your child for a disorder the doctor doesn't understand and has no idea how to treat.
If it already smells like a "dead animal" then this dead bowel process is already occurring in your child -- stop it now, in its tracks, don't waste anymore time with no-nothing doctors trying to convince you of what you know cannot be right, of what you know doesn't make sense, and of what you know is contraindicated...
And don't waste time arguing with them either, because if you piss them off, they will call CPS on you and accuse you of medical neglect and remove your children. That's what happened to us, and our children have been gone for twenty months...and I am so glad that immediately before his removal, our son finished his regimen of antibiotics and began to stool normally again. But they still blamed me, even though I had the blood tests and the medical evidence on my side, they said I had munchausen's and had refused to give my son miralax and that was why he was sick for so long, when in actuality it was because they had misdiagnosed him for three years. The damage that was done to our family was so deep and really nearly destroyed our lives.
If your home includes dogs or cats, I urge you to rule out helicobacter heilmannii before misplacing your trust with anymore greedy, uninterested doctors.
But definitely trust your "gut"...verify everything that I have said and what your doctor has told you. Just don't let your child fall gravely ill as a result of a QUACK like the ones who treated our son at Childrens Hospital Memorial in Colorado Springs (Dr. Samantha Woodruff) and Rocky Mountain Pediatrics with offices throughout Colorado (Dr. Jose Barrios) as well as Dr. Charles Johnson in Colorado Springs.
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