Re: Oh, what is happening to us? Frightened.

[Guest guest]

Oh what a scary time for you-our posts could have been identical when we started our plagio journey. My thoughts and prayers are with you and I am so very happy you have found this board you will find a lot of support and answers here. Your son-likely has plagiocephaly and you are fortunate to have caught it early and it is easily treatable painless process-but can be emotionally exhausted for Mom and dad at the start.

To start please take some pictures of your son from all angles-his head shape that is from t he top the side the back, etc., so that you are able to see his head shape and then continue to take pictures regularly to see if there is any change. He is still young enough and experiencing so much head growth that repositioning him may be very beneficial. Here are some repositioning links and some product links that might make it easier for you

Click here: Boppy Nursing and Infant Support Pillows, Play Mats and Activity Gyms

Click here: One Step Ahead Online Store

Click here: Snuglbuds Inc., Innovative Infant and Toddler Products

Click here: Repositioning Techniques

Click here: Sleep Positioners

Click here: : Plagiocephaly Files (repositioning)

Click here: Repositioning Techniques

Also here is a web site link so that you can look at your sons head shape and see if he matches any of them- which may help you better understand where you will be headed

Click here: : Plagiocephaly Files (head shapes)

There are various types of treatment available for you and your son- attached are links to some helmet therapy companies and a comparison chart for you to review

Click here: Types of Treatment

Click here: Plagiocephaly Information Web

Click here: Compare cranial molding orthosis (CMO)

Click here: Orthomerica - The Global Orthotic Solution

Click here: Cranial Technologies, Inc., Manufacturer of the DOC Band for Positional Plagiocephaly

I hope I am not overwhelming you. The term pediatric neurosurgeon or cranial facial specialist can be very scary-but rest assured your pediatrician is doing a great thing by referring you. They will be checking out your son to make sure he has not experienced any suture fusion in his skull-although your description does not sound as if this is the case- Youare very fortunate to have a ped that is aware of plagio and has been a resource for you. As you read other experiences on the board you will see that is not always the case.

Call the neuro' s office and ask to be put on a cancellation list for appointments or better yet call every morning first thing and ask if there have been any cancellations that day that you could slide into. You can also check around to see if there may be another neuro with a sooner appointment-as time is of the essence and the sooner you start any treatment the better off you and your son will be.

This is a very scary time but it gets easier I promise. Start repositioning now. You sound like a very wonderful mommy doing very good by her son. Please keep up the great work. I am so happy you have found us-ask as many questions as you like and please let us know-how things are going. We would love to know more about your son. How do we all handle this you ask-one step at a time.

Beck

Mom to

Memphis, TN

doc grad

[Guest guest]

,

First let me say welcome and second let me say everything is going to be ok. If

your son has plagio (which it sounds like from your description) then the

specialist may suggest a CTscan or x-rays to rule out craniosynostosis. After

that you will probably be referred to an orthotist for a helmet or band. Babies

adjust to the band/helmet amazingly fast - I was shocked at how quickly my

daughter adapted. Although it was sad to think of her wearing the helmet for

several months, I quickly adjusted to seeing her in it and thought she looked

adorable. Plus I knew that it wasn't hurting her or even bothering her and that

I was doing the right thing for her - so I held strong and today I'm very

thankful that I did that for my baby.

Your baby is at a good age to start - I was shocked to read that you have to

wait 3 months for an appointment. I would suggest doing whatever you can to get

that changed! 4-6 months would be the ideal time to start. Seeing the specialist

at 7 months and then having to wait another month or more for the helmet would

be pushing it back a little farther then you might like. Can you call your

specialist and try to get on the waiting list for cancellations? Or maybe you

can get your ped to call the specialist's office and explain the importance of

EARLY treatment for plagio (hopefully your specialist already understands

this!!!!).

We have a few members from your area and I hope they read this - they may know

something about your specialist or could give you more information about

treatment in your area. Hang in there - you and your baby are going to be just

fine. Stick with us - we will do all that we can to get your through this!!

Marci (mom to )

Oklahoma