We saw a neurologist today.

lujain · March 2011

This morning DH and I took our 18-month-old DD to her first appointment with a pediatric neurologist. We got 4 diagnoses:

1) infant of diabetic mother. (I had GD.)

2) expressive language delay, mild. (According to the EI folks, her language delay is severe.)

3) pseudoesotropia (Sometimes she has appeared to be cross-eyed, but her eyes are fine.) and

4) motor hypotonia.

According to the doctor, DD's hypotonia is mild and may improve on its own. She does not have oral hypotonia, so her speech delay is related to her brain, not her low tone. (The SLP says she does have low oral muscle tone.) Her hypotonia is benign and is not a symptom of some disorder.

I've been worried that DD may have apraxia, but the neurologist says she doesn't have it. The dr. says that sometimes Regional Center specialists may label a kid as having apraxia to help the kid get more services, and if that happens to DD we should just go along.

We are going back to see him after DD's second birthday. If she has not made sufficient progress, the neurologist may want to do a muscle biopsy.

We also have a referral to a geneticist. We've seen so many specialists and therapists, and no one knows why our kid is delayed. Unfortunately I don't think we'll be getting any answers anytime soon.

ToastieSimons · March 2011

Would it be helpful to get another opinion?

Our 1st neuro was very laid back, well lets do an MRI and then in 3 months we'll see what goes next. Normal MRI, 3 months later, well lets make an appointment for a microarray, it takes up to 3 months to get approval from insurance.

At that point we went to another neuro in another hospital and all of a sudden they threw a list of tests at us to rule out syndromes that have treatment available. We got it all done in a matter of a week, versus stretching it out for years. We have one test left but he's too little. Despite not having any answers it feels better that anything that could be treated has been ruled out.

duchess0727 · March 2011

I'm not sure what your daughters symptoms are but my daughter sounds very similar. She has microcephaly and global development delays. She has hypertonia and low tone. She also has the condition where her eyes look crossed but they aren't - her eyes are very small so that is generally why it looks that way. We saw a neurologist because of the microcephaly. We did an MRI which showed some potential causes (certain areas of her brain appear smaller) but the bottom line is that if there is a problem, they could be a contributer, but there isn't any way to necessarily associate the findings from the MRI with a specific problem. We already know her head is small so the fact that certain parts might be smaller than normal isn't really a surprise. We also did an EEG to check for seizures but there weren't any. Generally the neurologist will address anything acute and anything else they will just monitor to see what they can find and then refer you to the appropriate place - doctor, therapies, etc. I would definitely recommend seeing a geneticist - we see one and they definitely believe that she has a genetic issue although it has not been identified. But geneticists have seen a lot of kids, so they may be able to figure it out better than a neurologist. And I hear you on the specialists and therapists - it is exhausting!

sare_bear · March 2011

The geneticist may have something to add. I would certainly get a second opinion though, because I'm surprised they would tell you that her hypotonia is benign if she hasn't had genetic testing done.

I would also question why they think her hypotonia isn't causing speech delays, espeically if your ST says she has oral hypotonia.

You are her biggest advocate. If her doctors are giving you conflicting advice, it's best to get another opinion.

cranberry27 · March 2011

Just a few pieces of info in case it helps...

A neurologist would typically have a very different definition of apraxia than is commonly used in speech therapy. This is part of the debate over the use of the diagnosis. For a neurologist, apraxia is a specific neurological condition in which there is neural damage causing a loss of speech, and because is is a-praxia, many consider it a complete loss rather than dys-praxia, a partial loss. This would be a diagnosis that goes along with stroke and other brain injuries.

In the speech community, apraxia is used to talk about a more vaguely defined delay of speech that often resolves with therapy and time. To me, it is a delay in building the appropriate pathways to control/coordinate speech. Others would define it differently. This is part of why I dislike the apraxia diagnosis - it's overused and underdefined, especially considering that it's really supposed to be a neurological diagnosis like I described above. Maybe your neuro is going from the speech definition as well, but I just wanted to alert you that there may be an issue with how you both define apraxia!

Many SLPs are heavily invested in oral motor and the diagnosis of muscle weakness or low tone. Many are excellent professionals and know what they're talking about, but many are also using fuzzy popular thinking and buzzwords that are sketchy, disputed areas of speech. I don't know your therapist or you child, so I have no clue. But I tend to raise an eyebrow to most claims of "they're too weak to talk" claims, especially if the child is a good feeder. Just know that SLP diagnoses of oral weakness or low tone are not embraced by the whole field.

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We saw a neurologist today.

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