Re: Just out of curiosity...

[Guest guest]

Becca--My daughter only had deformational plagiocephaly-- from pre-birth--it

must have happened during the last few months of womb development --I had lower

than normal amniotic fluid--but nothing to worry about--it was only upon birth

that we noted this and thought nothing of it--but it meant she had not much to

protect her skull pressured by my pelvic bones for many months.  And also her

ears were also off a little and different in size as well--they were pulled by

the back pressure which caused the fontanel on that side to boss up and pulled

and flattened the left side. She definitely had clear signs of motor

difficulties--but had a good  APGAR and so the docs dismissed my concerns over

her appearance the way they always do--wanting to reassure parents everything is

OK--even if it isn't--they only look at things superficially --and my doc kept

insisting that it was a deformation from the birth canal--as if the birth canal

during a normal unassisted

birth could ever cause such a cranial malformation and different size ears no

less-just as the diagnosis of deformational plagiocephaly predicts--but my

doctor very likely had never heard of it--or if he did he was convinced it was

purely aesthetical --and told me not to worry.

Of course my maternal instincts were right and i should have worried plenty--and

done more---she obviously couldn't stimulate my milk properly ----but doctors

love to just blame the mom for inadequate milk supply and give formula which I

refused to do.  she  was however wasting away in spite of being at my breast for

hours at a time--still hungry--the milk was there--just not enough--she couldn't

get enough of it out---until 3 m when I got a lactation consultant-----a real

one--not the kind the hospitals have that are there to help you not feel bad if

you can't breast feed your baby--I pumped and used lactation enhancing herbs and

she immediately gained the weight and was able to maintain my milk supply once

it was adequately stimulated.  if only I'd known about this sooner--if only

pediatricians were trained to test suction and know that 90 % of the time when

the mom has low supply it is because the baby can't suck properly--and the

intervention is

done to the milk supply to stimulate it until the baby ccan maintain it---but

formula has made giving up so easy--just a few decades ago most docs were not

even recommending breastfeeding at all--just passing on the formula samples and

giving the milk suppressing medication to the mom as they handed her the baby on

the way out of the hospital.

So we did not have torticolis--but she does have verbal apraxia--once quite

severe--- upper trunk hypotonia---along with other things--soft signs on and off

toe walking, mild SID, primitive reflexes have not cleared yet--so this affects

her ability to sit still, sit at a desk, concentrate and it will impact learning

for sure as she enters first grade. We've been doing OT and speech intensively

and biomed.  all have helped--i only wish i had known about the deformational

plagiocephaly--what it was and how cranio scaral therapy can help--and done it

at that time---because her issues are oxidative stress on the brain--as is the

case with all these kids--and it was from both physical and chemical

stressors--inflammatory events---she is also intolerant to wheat, casein, eggs,

etc.  I did a quick check on pyloric stenosis and it is believed there is an

allergic component to it for sure----what the mom eats affects the baby in many

ways---doctors need to

learn more about that--and in newborns it is so hard to tell-because most

doctors will tell you they all spit up and have GERD--etc--not so--not to that

extent--looking back i think most if not all of the kids with food intolernaces

have a history of excessive spitting up.  My daughter is the exception--but her

sensitivity was so off--she never even teethed--her senses were very much

off--and while she was hyper sensitive on her face in general--her mouth and

other parts of her were definitely way hypo-sensitive.  She still has a weird

mix--but is a completely different child since biomed--literally withing days of

the B12 shots she had amazing mouth awareness and began to control her

speech--began to say her first bisyllabic constructions and has been on an

upswing since

Anyway--it is a possible contributor to your children's neurological

issues--even if not the main factor. Biomed helps these kids a lot-you just need

to identify their things to avoid and how to optimize absorption and

neurological functioning as they are often missing vital brain nutrients--Omegas

and carnitine and B12 and many others---all impede brain function and sensory

function--it manifests differently in different kids.

So yes, definitely check the allergic/intolerant factor--my daughter is not

allergic to anything --in fact she tends to be under-reactive and does NOT get

fever--has an under-reactive immune response--which appears good on the face of

it--but when she encounters pathogens---viral/bacterial/parasitic--it just means

her immune system is not able to put up a fight so she does not readily display

the symptoms of infection--but her body suffers in other ways--long term and in

more complex though not immediately apparent ways.  many of our kids have immune

issues as well--there's a lot to learn and do.  Any history of autoimmune issues

in your family or your husband's?---any neurological issues in the family?--the

two are most often connected scientists are now discovering more and more...

Good luck!

Elena

From: volybal_2 <volybal_2@...>

Subject: [ ] Just out of curiosity...

Date: Sunday, August 15, 2010, 10:22 AM

Both of my sons, age 4 & 2, both have apraxia, but at different extremities. As

babies, they both had surgery to fix pyloric stenosis, both were born w/

torticollis causing plagiocephaly. Today, they have a flat spot on the right

side of their heads, again, to different degrees. Does any parent out there have

a child that had these as babies? I just think its odd they both have everything

the same, considering when we found out we were having a 2nd child, our dr said

there was a less than 3% chance that he would have pyloric. Let me know guys!

And as always, thanks for being there everyone!

~Becca

------------------------------------

[Guest guest]

This was very interesting reading both of these posts. Noah, my 4 year old

grandson, who has apraxia, had both torticollis and was operated on at 4 weeks

of age for Pyloric Stenosis. His father had that as well as an infant. We were

told at the time that the majority of babies they see with Pyloric Stenosis are

first born white males and there is a tendency for it to be hereditary. The more

I read and educate myself about Noah's condition, who has the condition apraxia,

the full blown apraxia, from not only the verbal aspect but has hypotonia(feels

like he weighs a ton when you pick him up) and has also been diagnosed with

Sensory Integration Disorder, the more I know these are all linked somehow. My

daughter is reading a book now called " Raising a Sensory Smart Child " that talks

about the Torticollis in infants that have SID. On top of the other conditions

he has, he also has to wear glasses for his eyes turning in a bit, he's far

sighted, his depth perception is off, and his ankles turn in, so he falls a lot

(not nearly as uch as he used to). With having had the torticollis, his little

head still always seems to fall a certain way when he falls so his little

forehead stays black and blue and he has a knot that pops up like a big goose

egg every time he falls. He doesn't know to throw his arm out to help catch his

fall. They are going to fit him again for orthotics to help with the ankles

turning in. Noah had a very difficult birth, he eventually was born via

C-Section with a huge cone shaped head that was so sore that he would scream for

2 days when you touched his head to put the cap on. He actually lost at least a

half inch in length when the head went back to normal. He too, couldn't breast

feed. My daughter was so disappointed as she tried so hard and they (doctors)let

his weight fall down to below 6 pounds when he was over 7 pounds at birth. He

had just gotten back up to birth weight when he developed the Pyloric Stenosis.

I could go on and on.....

He currently now has speech therapy 3 times a week, occupational therapy one day

a week and physical therapy one day a week. The other day, my daughter was so

excited when he actually squatted to pick up something from the floor, he's

never been able to do that. Noah's in Head Start and my daughter was very

excited to find out that his new teacher this year specializes in communication

and apraxia is her favorite type of communication disorder to work with. He's

very, very active, she's going to have her hands full, as we all have.

We read and continue to educate ourselves, give him all the therapy that he

needs as well as give the fish oils and the Nutriiveda. The sad part is that you

have to go to such lengths to seek out help, it doesn't fall in your lap, you

have to research, ask and keep asking for additional help to help your child.

There's just not enough known about apraxia at this point. I keep saying I'm

going to take a copy of " The Latetalker " to my grandson's pediatrician. I pray

that some day they discover what is causing all of this in our children. The

saving grace in all of this is that Noah is a very happy child, he is not aware

yet that all his problems are not what a " normal " child has to endure, at least

we don't think he's aware.