Re: thanks for the nice welcome , here is our story

[Guest guest]

Hi ,

Welcome to the group. My son Cole was 6 months old when I really started to worry about his head shape and do some research on the internet (he's a severe brachy case). He was in his STARBand by 7 months, and he is now 8 1/2 months old. We have seen some good rounding since he began his helmet.

I know exactly what you mean about the guilt... but this happens to so many babies. Try not to be so hard on yourself (I know this is easier said than done). You did a great job, and are doing a great job now in seeking treatment for him. Keep us posted!

Kia (mom to Cole, starband 6/18/02, born 11/20/01)

-----Original Message-----From: Aley [mailto:aleys@...]Sent: Friday, August 02, 2002 3:10 PMPlagiocephaly Subject: thanks for the nice welcome , here is our story

>We would love to hear more about your child and about why you will be coming to OKC for treatment.

Thank you so much for the very kind welcome. It is such a relief to talk to others who have been, or currently are there. I heard about your list form another mom who I was put in contact with. (it is a kind of along story, but really great how it worked out) I must apologize before hand, I got very long winded. Thank you for listening to our story and our concerns.I was in on bedrest at 32 weeks and severe problems with preterm labor. Ourson was in the same position in utero for 6 weeks and was breech. Lucas wasborn premature by 4 weeks and was in the NICU for 5 days. He had so manyproblems at birth, he was one sick little boy. I figured once we went homewe were done with "health concerns". I knew of the risks of SIDS and wasadamant that he sleep on his back. I was diligent in making sure we rotatedhim from end to end so he never slept on the sameside of his head. I still can not help but feel guilty. I keep on going overthose first few months and second guessing myself wondering what did Ido/not do to cause this.I had noticed his head was flat on the back, but didn't think too much aboutit. I figured it will round out on its own. Well, weekend before last myhusband noticed there was a problem and was very concerned. He was coming upwith all these scenarios, form hydrocephalus to cancer to brain tumor. Myhusband does not normally get excited about these kind of things, I do. Hewas wanting me to take him to the ER. I was having to remain the calm onethis time and was refusing to see anything wrong in order to hold ittogether. Although by the time we took him to the Ped. on Monday afternoon Iknew something was terribly wrong.Our Ped was not terribly concerned, took x-rays to rule out cranio. Oncex-rays came back and were fine, she wanted us to just wait it out. (Shefeels the helmet/band therapy is extreme and not necessary). Well, I had beenresearching on the internet in the 24 hours btwn x-rays taken and when weheard the results. I had spent HOURS on the net and I knew there wassomething so wrong, he had all the classic symptoms of plagio. You couldjust list them right off. I have tried the repositioning, the only time he is on his back is too change is diaper.Since he doesn't sleep on his back anymore, it is not really a concern. I donot want to see if it will work out on its own, I am not willing to justcover it up with his hair. His ears are really misaligned, wrong size, etc.The complete right side of his head, forehead, cheek, etc are look to beswollen and are 1/4-1/2 inch bigger then the left side. Some people havestarted noticing on their own that their is a problem and he looks"different". . Our ped told us we could go to St. Louis, but I am from OKC and my Dad is the former dean of the University of Oklahoma Medical School.Well, we basically insisted we would take him to a specialist. I am from OKCand am very familiar with the University of Oklahoma Health Center/MedicalSchool. My father being a physician knows many contacts since he is on thefaculty there. My parents don't really support our pursuing this and ourvery negative. Once they found out I was researching on the internet theyhit the roof! They had comments like "you don't know what you are doing","you are not a trained professional, you can not interpret those results","you are just putting ideas in to your head, causing yourself to worryneedlessly". Well, we do not feel that way at all and had decided that ifthey would not help us, we would take him to where they would. To make along story short, my Dad did get us a appt with a ped. neurologist for nextTuesday, so it is a starting point. A Dr. Park in case you are wondering. Does anyone know her?I know my parents and know they will try and manipulatethe situation. I know that they do not agree with us and they will try tomake it so we do not see the Dr who could help him or make it so we don't do what we feel is right. I don't know how I willmake it possible to let the Dr know our wishes, we want him in a band. Weare not willing to wait around and miss this window of optimal correction.Lucas will be 6 months on Saturday. We would much rather he wear a band for6mths to a year and get itcorrected. We know that kids can be mean and we do not want to give themany extra ammunition.The cost was of course a huge concern. I stay at home with Lucas and hisolder brother, Caleb. Needless to say two in diapers is not cheap.We are five hours form OKC and staying with my parents will be much cheaperthen a hotel. I spoke with an agency here in Missouri who will pay foranything we need that our insurance does not. That is such ahuge answer to prayer. We did not know where the money would come from.I don't know where to go form here. I don't know what to do. I am justdreading next week. I am sure you are probably wondering why we are evenasking my parents to help. I am not really sure, except for the fact that wealways hope our parents will do what is right. I am so grateful you to be in your group. Thanks for you your very sweet welcome to the group, but also thanks for listening to our story. I know I rambled (a lot ),sorry.

mom to Lucas 6 mths and Caleb 2

near Branson MO

For more plagio info

[Guest guest]

Hi !

I'm the one who posted the info about Dr. Fancel and Bill Barringer

(orthotist). In OKC you will get a STARband and Bill Barringer is the only

one who does them. He is associated with OU Health Science Center. So is Dr.

Francel. I don't know the person you referred to, but I hope she knows

something about the program that Dr. Fancel and Dr. Panchal work with. They

are the two that see plagio and cranio babies. They are also with the

University of Oklahoma. They have conducted extensive research on cranio and

plagio so if you don't have any luck with Dr. Park (and I hope you do) then

maybe you could get in to see one of them (Francel or Panchal).

I'm sorry that your parents are not supportive. You are not worrying

needlessly - plagio is a real condition and does require treatment of some

form. There are medical complications that could arise if the plagio was left

untreated and YOU are the one that has to live with the consequences - not

your parents. They do not have to look at that child every day for the rest

of their lives and regret not having done something when the chance was

there. You are doing the right thing and it does not matter what they think.

You CAN get help in OKC and I'm sure that you will. I'm sorry that help is

not available closer to where you are. Please let me know if you need any

additional information. By the way - did you go to OU? I graduated from OU in

1991 with a degree in music education.

Sincerely,

Marci (Mom to )

Oklahoma

[Guest guest]

,

Be aware that some specialists are also anti-band. Since this dr is hand picked by your dad who doesn't support banding, maybe she is also anit-band? Worth checking to see whether she is listed on the plagio-friendly doctor lists on www.palgiocephaly.org or www.cappskids.org. Good luck with the appointment.

-

thanks for the nice welcome , here is our story

Well, we basically insisted we would take him to a specialist. I am from OKCand am very familiar with the University of Oklahoma Health Center/MedicalSchool. My father being a physician knows many contacts since he is on thefaculty there. My parents don't really support our pursuing this and ourvery negative. Once they found out I was researching on the internet theyhit the roof! They had comments like "you don't know what you are doing","you are not a trained professional, you can not interpret those results","you are just putting ideas in to your head, causing yourself to worryneedlessly". Well, we do not feel that way at all and had decided that ifthey would not help us, we would take him to where they would. To make along story short, my Dad did get us a appt with a ped. neurologist for nextTuesday, so it is a starting point. A Dr. Park in case you are wondering. Does anyone know her?

mom to Lucas 6 mths and Caleb 2

near Branson MO

[Guest guest]

In a message dated 8/2/2002 3:12:22 PM Eastern Daylight Time, aleys@... writes:

My parents don't really support our pursuing this and our

very negative. Once they found out I was researching on the internet they

hit the roof! They had comments like "you don't know what you are doing",

"you are not a trained professional, you can not interpret those results",

"you are just putting ideas in to your head, causing yourself to worry

needlessly"

,

You are certainly not alone in hearing those comments. My family was exactly the same way- they thought I was overreacting and wanted "the perfect child"- if it was not for the support and information I received here and online, I don't know that we would have pushed so hard and basically insisted that our ped write a referall for the band. I can tell you that my parents started "seeing the light" as soon as improvement started taking shape. I showed them before and after pics from Cranial Tech- pictures speak volumes, but of course in their eyes, it was still not enough to convince them. Once I started showing them his misaligned ears (much more noticeable with cut outs in the helmet) they started to understand. They went from my biggest adversaries, to my total support unit. Soon they were saying that he didn't look as cute with his helmet off!!! Educate yourself, you probably have it much harder having a father who is a Doctor- but many Docs are not educated about plagio, and will give out information based on what they "think" rather than what they know. If you educate yourself fully, you will have a better chance at making the right decisions for your circumstances- go with that Mommy instinct that is so clear to you right now- its there for a reason- and not even Grandparents can mess with that! Good luck to you and please keep us posted!

' Mom