Saturday, February 28, 2009

The elusive village of LP strikes again

So we are waiting on a 2nd opinion from Dr. Pauli next week as Bryan has been recommened to have a shunt placed to drain the increasing fluid from his 3rd ventricle. It has been a long week, which started with a simple neurology check up with a new neurologist who apparently treats the hidden village of LP that Tonya speaks so fondly of. At least, according to her - she has treated many LP. However, she took a look at Bryan and after asking us about his breathing (normal for him, I state) and his development delays (he is making great progress now, I state) and his head control (he is tired, and has been fighting allergies, and doesn't particularly want to look at you as white coats scare him, I say) she sent us immediately to the hospital for a CT, then had us check into the E.R. saying it was too risky for him to leave the hospital as his spinal stenosis was so bad that any minor accident could leave him paralyzed or worse.....

After several hours in the E.R., a much more experienced neurosurgeon (who has agreed to treat Bryan from here forward - no more new dr.s) came in and said that although this certainly was not an emergency and the neurologist jumped the gun, he believes Bryan needs a shunt as his head size is increasing at a rapid rate. (2.5 cm from 12/19 to 2/23) Before leaving the e.r. to be admitted for an MRI the following day, Bryan also had an exam by an opthomalogist who states that Bryan has VERY mild pressure on his optic nerves...which means the fluid in the ventricles is causing pressure on his eyes.

We have sent Bryans MRI and CT scans, along with HC to Dr. Pauli and are waiting on his comments. Hopefully we will know something by next Tuesday.

It is so frustrating. I wish we lived closer to some of the other seems no one in Texas has much experience here with dwarfism medical issues. At least this time we have a neurosurgeon involved who respects our decision to get a second opinion and doesn't chastise me for speaking to him in medical terms.

It amazes me how many people have children with medical conditions and don't bother to educate themselves. I wonder where we would be now with Bryan if it weren't for the internet. Although both my children were extremely healthy growing up....if a doctor told me to do something or that my child needed something, I took it for granted that he/she knew best and did exactly what they said. Boy, are those days over.

A quick update on Bryan's stats:

HC 23.5 cm
Weight 23.4 lbs.
Length 28 inches

Bryan is rolling everywhere and army crawls - and has just started bearing weight on his legs and is learning to climb (really quickly). After one month in PT - he is making GREAT progress. His ear tubes have made a huge difference, no infections since they were inserted...but his nose still runs like a faucet and due to all the congestion he snores heavily at night. Oh, and Bryan alos has 5-6 words he uses on a daily basis...and we are working on more!


Tonya said...

Thinking about you guys and hoping Pauli suggests NO SURGERY!!

Destini said...

We'll be thinking about you guys this week! Trace had an ETV at 8 mos (the ETV worked, so no shunt for us), and while scary as heck for us, he was only in the hospital 2 nights and they only gave him regular old tylenol for pain. Sounds like Bryan is definitely making some progress developmentally, so that's great! So glad that the neurosurgeon came to your rescue - we've never even messed with seeing a neurologist, just straight to the neurosurgeon.

Bobbi said...

Doctors can be so frustrating! I work with them everyday, and think that many have this "god-complex." Those are the ones who know it all, have seen it all, experienced it all and have treated it all. And, to hear a suggestion or get questioned from a patient (gasp!!!), it is almost demeaning to them in their eyes. On the other hand, there are just as many GOOD docs that will listen, take your word, admit their lack of expertise or experience, etc. The hard part is finding the docs in the second grp I mentioned. At least this neurosurgeon is willing to work with you. I'm learning that if I don't feel comfortable with what I'm being told, a 2nd opinion is WARRANTED. Best of luck. Bryan sure is a cutie!!!

Caden and Mommy said...

Tonya's post about the village had be laughing! So true ... as we are in the hospital this weekend I am being constantly reminded of those idiots :0)
I hope things work out for Bryan ... it is SO frusterating getting different opinions froms
Doctors and not knowing who's opintion to trust!
It sounds like Bryan and Caden are doing about the same things developmentally ... Caden is climbing EVERYWHERE!
Keep us posted with what Dr. Pauli has to say!
... and where are the pictures? :0)

Katie said...

Hi Candi, I just have to suggest speaking to my nuerosurgeon...he DOES have experience with Achons and has treated many over the years. A lot of the kids in the Dallas LP chapter go to him and I ran into a lady the other week (achon) who couldn't say enough great things about him and he did all of her daughters surgeries. His name is Dr. Swift and he is very knowledgable about achons. Cole has a very large head and so far we haven't needed intervention. He takes a less is more approach and likes to monitor before jumping in. We are going to see him on Tuesday to talk about Cole's last MRI. He is at Neurosurgeons for children here in Dallas...

Sarah said...

We will be thinking of you....hopefully you get some good or better news from Dr. Pauli. Keep us posted!

Kim said...

I am thinking about you guys-please keep us updated. I am glad Katie gave you the name of someone in Texas. I wish I had more input, but we have never seen a neuro. Keeping you guys in my prayers!