I’ve felt unheard and rushed at L’s two visits to the pediatric neurologist. I didn’t like it, but didn’t complain the first time because I got what I wanted out of the visit: orders for blood work to see if they could determine how severe L’s hypotonia was and if there was a cause.
But the second visit left me feeling confused and extremely upset. Once again I was trying to convey L’s developmental progress, which was delayed but within range. I had to talk over both kids who didn’t want to be there. The neurologist spoke over all of us trying to relay what I was saying to the student doctor who joined our visit. She watched L take three steps and deemed his stance was too wide and he must be doing a lot of falling and tripping when he walked and ran.
The neurologist wasn’t happy L was no longer seeing a physical therapist, though she seemed pleased I at least had him enrolled in a weekly gym class. She was not pleased that he is only seeing a speech therapist twice a month. She was not pleased when I told her that I knew for sure L was saying 20 words, but wasn’t sure if it was more than that. She wasn’t very thrilled that he was only starting to string two words together instead of three or four.
She said L had a delay and told us she was ordering an MRI to see if that would determine why and possibly give us a reason for his hypotonia. She said if the MRI showed a brain abnormality it would give us leverage to insist on physical and speech therapy services on a weekly basis. She essentially told us that Early Intervention was doing things half-assed for L.
Our appointment with the neurologist seemed to be over in a blink of an eye. I knew an MRI was a possible step in determining why L has hypotonia, but it seemed like a big leap for a second visit. He would need to be sedated and we’d need to go into Washington, DC. As much as I want an answer, I had reservations on whether this was the next step that needed to be taken, especially because L still had a couple of weeks to meet his 50-word vocabulary milestone.
It turned out, L already knew 50 words. I sat down the next day and wrote down every word he was saying (or trying to say; it’s still hard to understand him). His verbal explosion happened around 23.5 months, just before this neurology appointment. It was later than I had hoped, but still before his second birthday. And it’s normal for kids who walk later to talk later, it shouldn’t be surprising his verbal explosion happened closer to his second birthday. I also know that children won’t start stringing words together consistently until they have a 50 word vocabulary. L has a few phrases (“Need help!” is a big one), but I can’t expect him to start doing that until his vocabulary blossoms.
His comprehension got a lot better during his 23rd month as well. When we started speech therapy in December he honestly didn’t understand us when we asked him to bring us a ball or throw something in the trash can. Now he has minimal problems understanding one-step directions; if he doesn’t do what we ask we know it’s because he doesn’t want to, not because he has no idea what we were saying.
In light of this, I emailed the neurologist and asked if she still recommended the MRI. We spoke on the phone and her suggestion was to see a pediatric psychologist for a full evaluation to determine where L is developmentally. If the psychologist didn’t see any problems we could hold off on the MRI, but she made it sound like we’d do one at some point. I was given the number of a psychologist to call, but it turned out she’s in limbo at the moment. She’s moving from one office in the suburbs to one in DC – a city I’d really rather avoid – and no one knew when she’d start working.
“We’ll have someone call you by the end of the week,” I was told.
I’m still waiting.
I hate knowing L would benefit from extra help, but not knowing just how much. I hate being told to trust my instinct but then get told my instinct is telling me L needs too much. I hate that the pediatric neurologist and Early Intervention don’t agree on therapies. I really hate not knowing anyone who has been in a similar situation as us.
I’ve been walking around for several weeks stressing over many questions. Wasn’t the neurologist supposed to be able to determine where L was developmentally? As much as I want an answer for the hypotonia, do I really want to put L through sedation for an MRI which could very well tell us nothing? I see how weekly therapies can be beneficial, but Early Intervention doesn’t see the need and I have an anxiety attack at the thought of spending hundreds of dollars a month for private therapy services. Are we holding L back in any way by following EI’s suggestions? Who do I listen to? Who is right?
It was during this time I decided L needed to see a different doctor within our pediatric practice. From what I understand, L is considered special needs at the moment because of the hypotonia. He doesn’t need intense interventions like children with Down Syndrome or autism, but clearly there have been some milestone delays and he needs a little extra help. I decided to find a pediatrician who has some knowledge of special needs children.
Thankfully, the practice we use just hired a doctor who has just that. L had his Two Year well visit with her yesterday and it went extremely well. This doctor let me cry and tell our story. I felt like she was a third opinion, a tie breaker of sorts, to help me figure out what the eff to do next. We spent about 50 minutes with her (with a couple of breaks for L who suddenly decided doctors are the absolute devil and needed a moment to calm down with just Mommy in the room). She wrote notes on his chart and on the paper covering the exam table trying to get the entire picture. In the end, this is what I got from our visit:
More than likely, there is no underlying reason for L’s hypotoina. She said if there was a bigger issue at play, it would probably be apparent by now. The pediatrician watched him walk around the office and thought he was doing very well walking and balancing. She reiterated speech can be affected by low tone in the face, so that could be a possible reason for his delayed speech, but she wasn’t too worried about speech just yet.
She said the pediatric neurologist should be the one determining where a child is developmentally and the fact ours was referring L to someone else didn’t seem right. I immediately asked for a referral for a new one; this was the second time our pediatricians have questioned the neurologist’s methods (the first being the fact we were asked to see the pediatrician for a re-test for L’s CBC levels the neurologist asked for). That coupled with how rushed the neurologist visits have been clearly told me she wasn’t a fit for us.
L’s new pediatrician suggested coming back in two months to see where he is developmentally then. Is his vocabulary bigger? Is he speaking in sentences? She said we could discuss a new neurologist at that point and already had one in mind. I got the feeling she might not want L seeing a neurologist at all if he is doing well, but I think I’d like to see a new one just to see what they’d suggest for therapies.
I cried at the end of L’s well visit. This was the first well visit I felt like the doctor let me talk and actually listened. I wasn’t immediately told “he’s fine” or “here’s a number to call.”
As it stands now, we won’t be switching to a private therapy practice. I will try not to stress too much about physical therapy (L has his final visit with Ms. Mary tomorrow), though it might be something I push for again after our follow up visit with the pediatrician, and we’ll continue to see his speech therapist twice a month.
And I think I need to take the next couple of months to try and enjoy L’s accomplishments. He’s doing a little more than just saying 50 words and putting trash in trash cans when asked 🙂