January 30, 2012
by marfmom


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New Pulmonologist

On Wednesday I took Baby J to meet his new pulmonologist. His former doctor was very insistent that we see This Particular Doctor, and it turns out for good reason!

Usually, I have It together when it comes to doctor and therapy appointments. Everything is scheduled out in my ical and in the 18 months of M being in therapy I have only double-booked an appointment once. And then we got to Dr. P’s (P for pulmonologist!) office, 5 minutes late for J’s 1:00 appointment. Except the receptionist informed me our appointment had been for 10:00 am instead. No idea how I missed that! Another receptionist asked if I had the paperwork they’d mailed me last month but of course I’d forgotten it at home…packed away in some box.

“I’m really sorry, we just moved, it’s in a box somewhere. But, I’ve got all of his medical records from every single specialist right here!”

I got The Look of Disdain. You know the one. Then she informed me the doctor certainly would not be able to see me today without that paperwork because it would take sooo long to fill out. So, I apologize for the 3rd or 4th time and then, because I’m desperate (these appointments book way in advance), called out to her retreating back “Can you tell the doctor my son has severe sleep apnea with destats and we’ve been 3 weeks without a CPAP now and I doubt (insert name of crappy oxygen provider here) will give it back to us without her help?”

And that is how we still got an appointment that day, folks. Thank. Goodness.

Also, the paperwork took me a couple of minutes and then the doctor told me it wasn’t even necessary anyway. So there.

Dr. P is, so far, terrific. Turns out our former hospital really does not have a great sleep apnea program. Dr. P, however, is nationally known. She looked over all of J’s records (which she’d actually gotten several weeks ago) and said that she’s not sure his sleep apnea is as severe as we were made to believe, though she is concerned about his destating (dropping of oxygen levels) at night. He went down to 75% during his sleep study last month, whereas during his June sleep study he only went to 87%. In terms of overall severity though, I guess doctors who are less versed in sleep apnea consider anything more than 10 events an hour to be severe (J has had 12). Dr. P considers 30+ events to be severe. The CPAP mask doesn’t fit that well because of his size and it’s hard to get a baby that young to sleep well in it, so it might actually be causing more problems than it’s helping. Her guess is that J only needs oxygen, like he’s been getting.

In order to be sure, however, we need – you guessed it! – another sleep study. Dr. P will actually be around that evening, so she is going to have the techs check in with her all night long so she can tweak procedure as we go. J will start off with no oxygen or CPAP and we’ll go from there. She’s not promising that he won’t need the CPAP but we’re keeping our fingers crossed. Then, we’ll work on figuring out why his oxygen levels are dropping so much during sleep.

In the meanwhile, she said to forget trying to get our CPAP and pulse ox back from the oxygen company. She is going to see if she can get our insurance company to let us get supplies from someone else instead. Seriously…every doctor or patient I’ve talked to hates this company and we moved from tanks to a concentrator just so I have to deal with them less.

I’m feeling pretty lucky to be so happy with Baby J’s specialists thus far! Once the boys have started back up with their other therapies (hoping to hear back from J’s Help Me Grow coordinator this week & am finishing up some paperwork for M’s county services application), I can get started finding some local specialists for myself! Most of my Marfan care will be at a well-known clinic out of state, but I want to be in with some local people too, just in case.

January 26, 2012
by marfmom


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Friday Favorites

It’s Friday, so you know what that means!

Come on over and link up the favorite post that you wrote this week. I promise I’ll come over and comment on each of your posts (but it might take me a little while; we’re *still* unpacking!). I hope that you’ll spread the love and visit the blog or two above yours too. I’ll leave the linky up through Sunday night.



January 25, 2012
by marfmom


14 Comments

New Specialists

The past two days have found us meeting with Baby J’s new GI and pulmonologist.

Because our previous GI wouldn’t give us any recommendations for a doctor up here or any guidance whatsoever, I resorted to paging through all the doctors the local children’s hospital had to offer until I found a general GI that “felt right.” My gut told me to go with the doctor who from here on out will be known as Dr. Armisen, as in Fred Armisen, because that’s who he looked exactly like (just maybe 15 years older).

Dr. Armisen looked over all of J’s records and then pronounced two things. 1) Our former doctor was completely wrong in advising us to cut J’s prevacid in half and grind it up. Like, first year med student wrong. Apparently the medication is not evenly dosed throughout the pill. This means that on any given night J could have been receiving no medication, or twice the dose he needed. Awesome. 2) Because most kids outgrow reflux by 10 months, if a child J’s age (almost 14 months) is still having reflux, especially since he’s on the max dose of medication for his age/size, then a doctor should be looking for another cause. Dr. Armisen thinks that J has a dairy allergy.

Now, I agree with his conclusion but disagree with how he arrived at it. In kids with Marfan, the tissue that keeps food in the stomach is most likely going to take longer to strengthen than it does in kids without a connective tissue disorder, because floppy tissue is a hallmark of the syndrome. So, I don’t think it’s reasonable to say that because a child with Marfan has continued reflux at 14 months, it must be caused by something else. Also, Dr. Armisen said something about the stomach not emptying properly due to inflammation caused by an allergy, and that’s why reflux occurs, but I’m 95% certain our former GI said that Baby J’s stomach *is* emptying properly.

That said, I first suspected J had a problem with dairy when he was 4 months old and I noticed some blood and mucus in his stool. I asked the pediatrician and she told me it was normal. There have been blood and mucus in his stool off and on since then. He’s also had major problems with constipation (may Teenage J forgive me someday for writing that) since he was about 6 months, even before we introduced solids. That’s not common for a breastfed baby. There have been some minor eczema episodes as well (though all 4 of us have eczema). I really should have stopped dairy for awhile months ago, but I wanted to believe that the doctors were right. (And they may still be right, and I hope that is the case, but the allergy route is definitely one that is worth exploring based on his symptoms.)

We go back to the GI next Tuesday. I’m not sure we’ll be able to detect results by then, but we’ll see. I’m game for giving it a few more weeks and if there is real improvement then I’ll be dairy free till he weans. It’s actually not terrible – except that I miss cheese and CHOCOLATE – and maybe it’ll help me kick those last 5 lbs of baby weight. ;-)

All in all, pretty happy with this new doctor! I was going to write about the pulmonologist tonight too but J has already been up once so I’m worried it may be a long night…better catch the sleep where I can!