Re: It's been a loooong time!

November 10, 2007

Hi it is great to hear from you. I have also had another little one since talking to you. i have not heard of that before. I am sorry Tiernan is having headaches. Please keep us updated on how you guys are oding.

Angie and Jenna

It's been a loooong time!

Hi all... I haven't been on here in about four years... my son, Tiernan, wastreated for plagio by the DOC clinic in Charlotte, after having anunsuccessful experience with an ortho in ton, SC. ANYWAY, alot has happened... we had a daughter and then got divorced (it'sfine, really) The kids and I moved to Florida and spent two yearsthere, now we're finally back in PA. I just thought of something... when Tiernan was 2 or 3, he came to meand said he swallowed money. I took him to the ER to make sure hisairway wasn't blocked, and was called by the NACC in Groton sayingthey thought his heart looked enlarged. Then we went in to consultwith his ped, and he said he wasn't worried about that as he was abouthis back. So we had scans and went to Hasbro up in Providence for anMRI after visiting an amazing Ped. Neurosurgeon in R.I. Tiernan hastwo hemivertebrae in his back, AND level 1 Chiari Malformation. (Smaller than usual space for the cerebellum at the back of the skull,causes internal pressure on the cerebellum and affects the flow ofspinal fluid) Does ANYONE else have this ocurring, or think it couldgo hand and hand with the plagio? Just curious... he's beencomplaining of headaches quite a bit lately, and I'm just trying tofigure things out. Thanks!!Mommy to Tiernan, age 5and Rhiannon age 3Coplay, PA

November 10, 2007

Hi :I'm sorry that Tiernan is having headaches. What, if anything, have the doctors done since he was diagnosed with these two things? When I looked up hemivertebrae it looked to be a form of scoliosis. Is that what it is? I can say that the plagio most probably happened because of the other things (not the other way around), but they also may have been totally unrelated. My son is 7 (almost 8), and in January he was diagnosed with a rare connective tissue disorder. But he also had a rare head shape -- long and narrow (dolichocephalic), we always figured this was caused by his breech position, however know now that his breech position was probably because of his low muscle tone, which can be a part of this connective tissue disorder. I'm sure that you've been given a lot of infomation in the past few years, but wanted to share the website of the National Institue of Neuorlogical Disorders about Chiari. http://www.ninds.nih.gov/disorders/chiari/chiari.htm perhaps they have some information there that can lead you in the next direction.I've spent the past 2 years "putting puzzle pieces" together, so I understand how you are trying to find answers. Feel free to email me off list any time if you have any questions about what I've just posted tnt@...Take care.mom to Quinn, born 11/99, DOCband graduate 10/00>------- Original Message ------->From : tiernansmum[mailto:stephanie.keiser@...]>Sent : 11/10/2007 12:53:59 PM>To : Plagiocephaly >Cc : >Subject : RE: It's been a loooong time!>>Hi all... I haven

't been on here in about four years... my son, Tiernan, wastreated for plagio by the DOC clinic in Charlotte, after having anunsuccessful experience with an ortho in ton, SC. ANYWAY, alot has happened... we had a daughter and then got divorced (it'sfine, really) The kids and I moved to Florida and spent two yearsthere, now we're finally back in PA. I just thought of something... when Tiernan was 2 or 3, he came to meand said he swallowed money. I took him to the ER to make sure hisairway wasn't blocked, and was called by the NACC in Groton sayingthey thought his heart looked enlarged. Then we went in to consultwith his ped, and he said he wasn't worried about that as he was abouthis back. So we had scans and went to Hasbro up in Providence for anMRI after visiting an amazing Ped. Neurosurgeon in R.I. Tiernan hastwo hemivertebrae in his back, AND level 1 Chiari Malformation. (Smaller than usual space for the cereb

ellum at the back of the skull,causes internal pressure on the cerebellum and affects the flow ofspinal fluid) Does ANYONE else have this ocurring, or think it couldgo hand and hand with the plagio? Just curious... he's beencomplaining of headaches quite a bit lately, and I'm just trying tofigure things out. Thanks!!Mommy to Tiernan, age 5and Rhiannon age 3Coplay, PAFor more plagio info

November 10, 2007

OH MY GOODNESS!! I was so worried we'd never get in touch again...

gosh, Jenna must be getting big now.. and another baby to lvoe... you

must be exhausted, too...lol...

>

> Hi it is great to hear from you. I have also had another

little one since talking to you. i have not heard of that before.

I am sorry Tiernan is having headaches. Please keep us updated on how

you guys are oding.

>

> Angie and Jenna

> It's been a loooong time!

>

> Hi all...

> I haven't been on here in about four years... my son, Tiernan, was

> treated for plagio by the DOC clinic in Charlotte, after having an

> unsuccessful experience with an ortho in ton, SC. ANYWAY, a

> lot has happened... we had a daughter and then got divorced (it's

> fine, really) The kids and I moved to Florida and spent two years

> there, now we're finally back in PA.

> I just thought of something... when Tiernan was 2 or 3, he came to me

> and said he swallowed money. I took him to the ER to make sure his

> airway wasn't blocked, and was called by the NACC in Groton saying

> they thought his heart looked enlarged. Then we went in to consult

> with his ped, and he said he wasn't worried about that as he was about

> his back. So we had scans and went to Hasbro up in Providence for an

> MRI after visiting an amazing Ped. Neurosurgeon in R.I. Tiernan has

> two hemivertebrae in his back, AND level 1 Chiari Malformation.

> (Smaller than usual space for the cerebellum at the back of the skull,

> causes internal pressure on the cerebellum and affects the flow of

> spinal fluid) Does ANYONE else have this ocurring, or think it could

> go hand and hand with the plagio? Just curious... he's been

> complaining of headaches quite a bit lately, and I'm just trying to

> figure things out.

>

> Thanks!!

>

> Mommy to Tiernan, age 5

> and Rhiannon age 3

> Coplay, PA

>

November 10, 2007

,

Well, fortunately, when I found out about all of this, I did the same

thing I did when Tiernan was diagnosed with plagio... I did all the

research I could!! Really, what it looks like on his scans (the

hemivertebrae at least) is like he has two that look like little

doritos in his back, if you can imagine that... just the simplest way

to describe it. One faces one way, the other one the other, so we're

lucky, I think they kind of balance eachother out. As for the chiari,

I've visited that webpage, and think it's not a result of his

treatment or even of the plagio,more or less, I was really wondering

if it's shown up in other plagio kids, perhaps because of their unique

head shapes... we got really amazing correction from his treatment,

but was wondering if maybe there was some sort of connection. Every

now and then, he complains of a backache or headache, but I think

he'll be okay. The doctors we've seen (lots of them. Tired of

doctors!!) have said that if it was going to be a huge problem, it

probably would already be obvious there's something wrong... kind of

like when we noticed some very obvious facial asymmetry before he was

diagnosed with plagio.

Was really curious to see if anyone else has had the same experience

post treatment with their plagio kids..

>

> Hi :

> I'm sorry that Tiernan is having headaches. What, if anything, have

the doctors done since he was diagnosed with these two things? When I

looked up hemivertebrae it looked to be a form of scoliosis. Is that

what it is?

>

> I can say that the plagio most probably happened because of the

other things (not the other way around), but they also may have been

totally unrelated. My son is 7 (almost 8), and in January he was

diagnosed with a rare connective tissue disorder. But he also had a

rare head shape -- long and narrow (dolichocephalic), we always

figured this was caused by his breech position, however know now that

his breech position was probably because of his low muscle tone, which

can be a part of this connective tissue disorder.

>

> I'm sure that you've been given a lot of infomation in the past few

years, but wanted to share the website of the National Institue of

Neuorlogical Disorders about Chiari.

http://www.ninds.nih.gov/disorders/chiari/chiari.htm perhaps they have

some information there that can lead you in the next direction.

>

> I've spent the past 2 years " putting puzzle pieces " together, so I

understand how you are trying to find answers.

>

> Feel free to email me off list any time if you have any questions

about what I've just posted tnt@...

>

> Take care.

>

> mom to Quinn, born 11/99, DOCband graduate 10/00

>

> >------- Original Message -------

> >From : tiernansmum[mailto:stephanie.keiser@...]

> >Sent : 11/10/2007 12:53:59 PM

> >To : Plagiocephaly

> >Cc :

> >Subject : RE: It's been a loooong time!

> >

> >Hi all...