It's like shouting down a well
I hope everything's ok. That's quite a lot you have on your plate.
What finally happened with your baby's metopic stenosis? I think my grandson has this. I too am finding it very hard to work, to eat, to sleep. I love him.
I hope your baby has had a good outcome.
Amy,
His case has turned out to be mild enough that it has yet to require surgery. He's almost 20 months old now, and it still could lead to surgery, but so far so good. He just has a little Klingon ridge down the front of his forehead that is accentuated (at least to us) by the fact that he still doesn't have much hair.
If you think your grandson has it it needs to be checked out ASAP. If it does develop into something warranting surgery, the sooner it gets dealt with the better. For us, Baby P was young enough, and the case not yet pronounced enough, so they chose to monitor it at 6 month intervals.
I wish nothing but the best to you and your family.
We have an appointment. I'm a little distressed that the doctors didn't recognize this sooner. I've seen it since he was a month old but I was so ignorant I just thought, "Well, that's just the way his head is made." It didn't worry me until it kept getting worse and worse.
I just don't know if I can wait until the appointment.
Amy,
Though it might sound counter-intuitive, I recommend reading as much as possible about it. Treatments, diagnoses, accounts on-line from people who have had the surgery, or parents of kids who have had it. We also had a wait that was stressing both of us out. I found that reading other accounts helped alleviate some of the worry.
The broader knowledge can also help arm yourself, so you can ask more pointed, informed questions of the doctor.
The metopic ridge is a hard thing to detect. My wife and I had both noticed it, and she is the one that wound up pointing it out to our pediatrician. Looking back, we can even notice a little bump in his newborn pics. Even though we are acutely aware of it, most people that don't spend so much time with Baby P. have to have it pointed out to them. So it's a little understandable for your pediatrician to miss it.
How old is your grandson now, and how long until the appointment?
He'll be 4 months old next week. The appointment is tomorrow.
One of my bigger concerns is that we may not be able to get him the best treatment possible. My 22 year old daughter who has worked continuously and successfully since she was 17 was laid off when her employer decided to ship their call center jobs overseas. She hasn't been able to find employment with insurance benefits. Her insurance runs out the 13th of June and the Cobra payments if we can scrape them together are over $900 a month and the coverage isn't good so we'd still have 20% of everything to pay.
Still I'm glad we don't have socialized medicine. I talked to a mother in Canada who had to wait from the time her son was 8 weeks old until he was 8 months old before she could even get an appointment with a CS/NS team. By that time, in her sons case, the deformation of his face and pressure on his brain had become pronounced.
How can I send you a picture of my baby?
Best of luck at your appointment today, Amy. Hopefully the doctor will take a "wait and see" approach, and this will work out for you like it did for us.
I do wish we had universal healthcare, though. Do you honestly think waiting a little bit longer for treatment is worse than bankrupting yourself and your family to take care of your grandchild?
Every person from Canada I've ever known and talked to about health care is relatively appalled at the American "system."
But that is completely beside the point. I hope your grandson is okay.
If you'd like, you can e-mail a pic to praxxus@gmail.com.
The appointment was disappointing. The doctor really wouldn't commit as to what she thought. She seemed really nervous and kept saying that she was sure everything would be okay but she did refer us to a pediatric neurosurgeon. On the way home her office called me to say that they were refering us to a different group that had more experience in this. So more waiting and worrying.
Thank you for your kind wishes.
I love talking politics. For some reason my best friends are already on the other side. They know what I think, I know how they feel, we spar. It's fun.
Well for what it's worth, that's kind of the way our pediatrician acted, too. In fact, she still fusses over his head during wellbaby checkups.
She might be nervous because it's something not a lot of general pediatricians know a whole lot about. They can diagnose it, but it really does take someone with more cranial expertise (and possibly some X-rays or CAT scans) to determine how bad the case is.
How long off is the appointment with the neurosurgeon?
We will see the neurosurgeon they refered us to next Monday. From talking to some of the ladies on craniokids.com I've gotten some negative feedback on him. I had planned all along to get a second opinion.
I had written some plastic surgeons in Memphis and someone, I don't know who, forwarded my email to the chief of Plastic Surgery at the University of Tennessee Medical Center. He leads a set of comprehensive teams (craniofacial surgeons, plastic surgeons, neurosurgeons, developmental specialists, opthamologists, etc.) that manages the care of children with this type problem. He has invited us to attend their next clinic where they assess kids and create the management teams. He said that insurance (or the lack of it) is no problem. I talked to his assistant yesterday and I am very hopeful about this avenue for treatment. Unfortunately their next clinic isn't until July 24 but we're on the books for it.
Sincere regards,
Amy
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