Any ideas/ advice?

[evergreenmom]

The entire side of his head on the left is noticeably smaller and even when he is holding his head straight from the back it looks like his head is tilted left.

I don't want to give you more worries but this is exactly how I described Xander's head before he was diagnosed with cranio. I think you should still push to be seen by a craniofacial surgeon just to be on the safe side.

I agree you should bug the schedulers for a sooner appointment... you could even call every morning and ask if there have been any cancellations and to please notify you if any should arise.

[AxelsMommy]

Has it really been this long since I've checked in with my cranio friends? Man, time flies. This post got saved and not sent yesterday so I'm trying to repost now. Fingers crossed!
Hello my cranio loves. As I am sitting In the Peds office in tears I joy, no first phone call to anyone would bring the understanding of to what normal 21 year old mothers seem small, but I have won the greatest battle in my motherhood. AXEL HAS A CRANIOFACIAL TEAM REFFERAL! Can I get a he** ya? Excuse my language but after phone calls tears 4 specialists, countless bologna diagnosis, and watching my lil man grow in his own special way day on and out, my excitement and profanity is being contained!! These last two months have been rough my friends. To keep it short, my 49 year old mother suffered a major heart attack with me finding her no pulse no breathing in her bed. After 9 days hypothermic induced coma 15 days in ICU and 20 days bouncing around the hospital my mother is home with me with an anoxic brain injury. I am now a mother to a beautifully memory less 49 year old combative angel, my 12 year old type one diabetic sister, 51 year old MS suffering father, and of course my Axel. Well and a full time pharmacy student too! Sheeesh!
Axels dra have kept me busy enough this month we have seen a Nerologist who diagnosed him with cognital bells palsey (from a text book right infront of me!) an optometrist for god knows why, and Beene denied any visits to OHSU, an MRI, or any further specialists for said condition. Oh you bet my appeal letters have been anything but kind. Finally We get referred and approved to meet with the developmental pediatrician from OHSU traveling to bend and at that point I took what we could get and headed to COPA already expecting the "your a MUNCH your kids fine look" and was blessed with a dr who noticed Axel's a symmetry before he even shook my hand, and with a strong accent promised me he'd get us where we needed to be because "craniosyntosis is not his speciality" I almost hugged him. I was is ironic smiles as he measured m, watched, pricked, and had axel in tears! Is that sick? LOL I don't care! We are waiting for approval with the cranio facial team, a hip X-ray, swallow test, MRI and a few other tests as Axs left keg us longer than his right substantially. I no longer am leaning towards cranio but from the wisdom I've gotten here I hope cranio in Portland can help us.
side note. Does anyone else get overly annoyed with people who say a child looks fine and nothing needs to be seen by a dr? I've had multiple people/friends/family tell me (from pics on FB as we love 2000 miles away) that I'm just over paranoid and Ax looks perfect. Isn't their like a shut up rule or something? Hope you all are well!

[maztec]

Sounds like you are taking some great strides forward. Glad to hear that. Good to know that the doctor from OHSU recognized things right off.

I do have to say, as an attorney, I often open up my books (that may appear to be text books) in front of my clients and do quick spot research or confirmation of my suspicions. Doctors and the like cannot know everything, and it is often ideal to pull open the book and double check things - even when the client is sitting right there.

[AxelsMommy]

That's understandable! I think it was the whole "well I'm not a pediatric so let's just look these symptoms up" then "oh definitely bells palsy" made me feel like it was a waste of time! I'm never rude to doctors and I appreciated him seeing us but the whole dr. Google already suggested that was running through my head LOL. I did not know you were an Attourney Maztec!

[craniomommynbaby]

Hi!
I am just reading this whole thread today but am going through such a mix of emotions at your journey so far. I am so glad that you will be seeing the craniofacial team soon. Please keep us posted!

As I read about one leg looking longer than the other, my mind is wondering if Axel may have a tethered cord, too. Sometimes this happens with our cranio babies. They can try to diagnose with an ultrasound or an MRI on the low back, and the neurosurgeon on the team can help you along. At your first appointment with the craniofacial team, it will be good to bring up all of the symptoms you have been sharing.

http://www.ninds.nih.gov/disorders/t...hered_cord.htm

Again, please keep us posted!

[SweetTeaNC]

I am so glad you stood your ground. I'm another one who is just reading your posts for the first time... I instantly bristled up when I read that your ped wasn't listening to you. A mother's instincts are not to be ignored!!

Keep us updated. I'm so glad you got the referrals you wanted/needed!