Second, pediatric neurosurgery referral, not neuro.
Third, I do want to go on record agreeing with the basic concept expressed that if a test and a “defintive diagnosis” would not change management then it should not be ordered. Lots of misadventures get started that way. Finding a tethered cord before symptoms occur (which I am not saying your child has, just saying that as described it might cross the line as something that needs to be ruled out) though would possibly allow something to be done before symptoms and once the symptoms occur some damage may be irreversible. Most of peds is doing nothing and letting things resolve, having to spend some energy to talk people down so we can do that; a few things are not.
Hmm. So apparently the doctor was mistaken and they will perform this ultrasound locally and that’s where he wants to start. I’m also told if they can’t get a really good picture of what’s going on, or if the ultrasound is otherwise inconclusive, we and our insurance company will not be billed and we’ll move forward with an MRI.
Any insight into why ultrasound is not used after 3 months? He’s four months on the 16th. Why not just go straight to the MRI then?
I still haven’t talked to anybody. I got this info from a receptionist reading a note the doctor had left in my son’s file. He mentioned the distance when he brought up ultrasound vs MRI. Yes, the hospital I’d go to for that is pretty far away but who cares? I would have thought his concerns would have been more “let’s not sedate if we don’t have to” than “well, it’s a long drive…”
Ultrasound can’t be done once bone gets in the way too much. Under 3 months there is enough space that a skillful experienced ultrasonographer can get a good look. After that bones have calcified and grown enough that it typically is a much more difficult exam to perform.
At the risk of being too directive allow me to suggest that you* insist* on speaking to the doctor directly even if it requires a call or so a day to get it. If you do go with trying the ultrasound then request/insist that it be done at the pediatric specialty center where they have done many of these; done by a less experienced technician you can have a false negative. MRIs are not so technician dependent. Explain that you do not mind the drive. Also request that they verify with the radiologist there that they feel an ultrasound is the right test at this age. If they feel their tech can do it then givig it a go and avoiding the sedation would be great, but if they say it will unlikely to be a good enough study to rule out tethered cord then you know to go directly to MRI or to the neurosurgeon (who might possibly say it is not needed based on an actual exam).
BTW a more precise criteria sometimes mentioned is distance from the edge of the anus, greater than 2.5 cm is suspicious and less is reassuring, and depth of the dimple, more than 5 mm more worrisome.
Most imaging by those criteria and with only one skin finding will be normal, something like 19 out of 20, but that 1 out of 20 is important not to miss. The rate of something really being there goes up if there is more than one skin finding.
Here’s a typical bit used to teach pediatric residents about it.
Sigh. From the top edge of the anus to the dimple is the length of my pinky finger from tip to second knuckle, or just under four centimeters. Depth is harder to determine.
Thanks again for all the info. I’m definitely going to take your advice about speaking to the doctor directly. It’s long past closing and nobody ever called back.
Read your link, great resource! I really feel like I can’t thank you enough because without your replies in this thread, I’d still believe that it’s not something we need to investigate.
I’m going to skip the local ultrasound. The doctor didn’t even realize they do them here so my assumption is that they don’t see this very often at all. I’ll be calling again in the AM for a referral to Children’s.
Your link says ultrasound after six months is “not possible.” A friend told me today that one of her twins, born at 32 weeks IIRC, has a dimple above his crease also and that he had an ultrasound at 9-10 months. :smack: I passed on the information.
IMHO, more information is always better. You can do something with this information-better observe your child in the future. Lets say the diagnosis tells you there is no problem-and something happens in the future. You will immediately know to investigate further. To me, this is a no-brainer. If there is no treatment, then that information is also useful-you will be on your guard if in the future someone tries to push a possibly unwise treatment option on you. Knowledge is power.
DSeid gave a MUCH better and more effective input than I. I am glad. Good luck and let us know how it turns out.
Children’s, which I called directly today, doesn’t require a referral but the woman I talked to just a moment ago said she isn’t sure they’ll order imaging on my request or if the provider wants the baby’s primary to call down to schedule that. I imagine most people get proper referrals so she’s looking into that and promised to get back to me before lunch.
I also have a call in to the local clinic for a referral because I may need that anyway for insurance. And that’s my next call.
I’m so glad you’re pursuing this, and that you’ve gotten good advice. At the very least you’ll have a baseline for comparison in the future.
My SO has spina bifida (I don’t know the details except that his spinal column is very twisted), and has quite a lot of back pain. I don’t know if it was correctable or would be now, but I was going to push you like Hell to have this checked out.
My son has spina bifida occulta and it can be completely asymptomatic. We only learned he had it about four years ago (when he was 10) while he was getting x-rays for something else entirely. It’s never seemed to be any problem!
So today was primarily a consultation but they scheduled an ultrasound and x-ray first, I suppose just in case it worked and they got good pictures.
Nothing though, just a bunch of shadows.
The pediatric neurosurgeon we met with was very patient with all of our questions, even when they weren’t necessarily relevant (like the nystagmus thing; he thinks probably not related), and seemed to be very thorough. He said the dimple is too high and also asymmetrical and “I don’t want you to worry” but he’s scheduled for a physical (locally) on the 10th and an MRI down at Children’s on the 14th. We don’t get to follow up with that until the 20th. That’s going to be a long week, I think.
He’ll have imaging of his spine, of course, and of his brain. His brain came into it because I mentioned muscle tone – when I brought him to my doctor for nystagmus, the doctor said he felt a possible increase in tone but Orwin (that’s the baby) was so mad at that point that it was hard to be sure – and he agreed that it was just slightly increased. And that “could be nothing, could be something” and we shouldn’t lose sleep over it just yet (“that’s easier for me to say than you to do, though”).
I am impressed you got in to peds neurosurg so fast! 9 days for an MRI is pretty fast too … as forever as it will feel, as will waiting for results. It sounds like you are in very good hands.
Oh my gosh, I was so shocked today! The receptionist said she’d talk to the provider and call me back by lunch time. She called 10 minutes later and said, “I know it’s really short notice but can you make it today at 11:30?” This was at about 8:40 and it’s an hour and a half drive there and I have two other kids to find last minute care for and then meet up with my husband who has to bail on work… but I said sure, I’ll figure it out. Then she called me back again and said radiology could push it to 12:45 instead of 11:30 since the consultation with the doctor wasn’t until 1:30. That was a good thing. Making it by 11:30 probably wouldn’t have happened, as much as I wanted it to.
We weren’t supposed to have to wait for results. The receptionist was initially told an hour for the MRI and scheduled both the procedure and the appt with the doctor on the same day. Then they were told to schedule in a 2.5 hour block (added time for recovery from sedation, maybe?) prior to meeting with the doctor. There apparently isn’t one, at least not soon, so they scheduled them separately.
Mostly copied from a Facebook update because I am exhausted.
Home again. I’m pretty proud of us. We did okay today. Orwin was so sad and hungry and in pain and we kept it together even though we couldn’t do much to help him except blow bubbles (they have bubbles in the sedation rooms) with him and try to distract him from everything.
He finally gave up and fell asleep in Ben’s arms just before the ICU doctor monitoring his sedation came in to go over everything. He woke up a few moments later when Ben had to put him on the board and started crying. Then the doctor, who was fantastic, gave him the first little dose of propofol. He started screaming, because it’s painful, and we held him as close as we could and told him we love him and would see him really soon and ten seconds later, like a light switch, he was out.
So we held it together until that point and then sort of lost it. Went outside for some air, walked around, looked at an I Spy book together… the time actually went pretty fast. And then we got our Orwin back and he did such a good job and now it’s just waiting for results.
Fingers crossed.
We got a late start. We were supposed to be down there at noon for a one o’clock appointment but first they had a hard time getting vitals and then there was some kind of emergency imaging situation so they were running behind. Then they went through three of his little veins before getting an IV placed, and that took a bunch of time. It was nearly 2 pm before the intensivist came in. The MRI itself took nearly two hours and, aside from the standard supplemental oxygen they provide everybody, he didn’t need any help at all.
The wait for him to wake up seemed to take longer than the MRI but it didn’t. I’m not sure how long that took. Maybe 20 minutes? A quick bottle and some paperwork and we were out the door.
His follow up isn’t until Thursday but everybody in radiology (except one person who said results would take 7-10 days, WTF) said I could call up to neurosurgery and have results by Tuesday so I’ll give that a shot.
Here he is finally eating. This was at, like, 4:30 and he hadn’t had anything since about six o’clock this morning. Whenever the baby cries, my three year old gets super concerned and calls him a “poor little honey.” Little guy was definitely a poor little honey today.
Then the doctor, who was fantastic, gave him the first little dose of propofol. He started screaming, because it’s painful, and we held him as close as we could and told him we love him and would see him really soon and ten seconds later, like a light switch, he was out.