Monday, August 10, 2009

A little reassurance, but a lot of "wait and see."

Brooklyn saw Dr. A, her pediatrician, on Friday afternoon. This visit was of course due to the fact that she has stopped saying all of her words except for "Dada," and we are worried about the possibility that she could be autistic.

Dr. A said that we did the right thing by bringing her in to see him. But he said that Brooklyn is too young to be diagnosed with autism or any other type of pervasive developmental disorder. He is concerned that she is no longer talking. He told us that it is not normal and it is not what you want. However, it "just happens" to babies sometimes, and it is possible that any day her words could return and everything would be back to normal. But the longer she goes without speaking, the more worried he will be.

Dr. A told us that his gut feeling is that Brooklyn is NOT autistic. This is mainly because she is continuing to socialize in ways other than speaking. During the appointment, Brooklyn got my keys out of my bag and kept bringing them to Dr. A. He said that this was the most positive thing he saw during our appointment, because autistic children will not do this because they don't care about involving others in their play. That was really encouraging. Brooklyn brings us her toys and books and things all the time. She always has.

Dr. A said that he will not tell us that some type of autism spectrum disorder not a possibility. He said if you took 100 babies who were going through what Brooklyn is going through right now, 90 of them would turn out fine, and about 10 of them would probably fall somewhere on the autism spectrum. I'm sorry, I know that was supposed to make us feel better, but I just really don't like those "10 out of 100" odds. There is not any kind of test that they can do at this point to give us an answer. Dr. A said that a lot of behaviors that are normal for a 16 or 17 month old would be considered autistic behavior in a child who was closer to two years old. He said that many times, when parents come in with similar concerns, he just tells them to relax and not to worry about it. But he said that he wasn't going to tell us that because of everything we have already been through with Brooklyn, the amount of medical problems she has had already that are not "the norm," and because of Dave's family history of autism. He called the genetic component of autism "huge."

He doesn't think that it is a neurological problem because Brooklyn hasn't regressed in any other areas of her development. But he will order a head MRI and refer her to a developmental specialist in a month or two if she still isn't talking.

So I asked, where did her words go...why would this just happen? Dr. A didn't have an explanation. Sometimes it happens after a severe infection, like encephalitis. But Brooklyn hasn't been sick. There is controversy over whether this can occur after immunizations, and he said that unfortunately Brooklyn falls into the post-MMR immunization window, when some people believe autistic behavior can begin. But then he talked about the research that showed that autism is not linked to the MMR vaccine. So I was confused...he brought up the immunization issue as a possible cause, then said that the vaccine and autism aren't related. I need to read more about this, and I will probably freak myself out more in doing so.

I guess the bottom line is that Dr. A doesn't know why this is happening.

He said that there wasn't much we could do right now besides wait. We are to verbalize everything we are doing all the time to her, talk to her constantly. We have already been doing that. I asked about the evaluation with Early Childhood Intervention, and Dr. A said that we could move forward with it if we wanted to, but that it wouldn't do much. He said that they would come and evaluate her and tell us that she is on the level of about a 10 or 11 month old, which sounds really bad, and put her in speech therapy. He told us that there is not much evidence that speech therapy is effective in babies Brooklyn's age. I think that I am going to go ahead and do it. I sent in the referral 2 weeks ago, and I haven't heard anything back yet. Hopefully they will call us soon. I need to feel like I am doing something for my baby besides just waiting and watching.

We go back to Dr. A in a month. So that's pretty much it for now. Wait and see. Or, in my case, wait and fret and worry and stress and overanalyze.....


MrsSpock said...

Wait and see" is sometimes one of the hardest gameplans to live with...

Jennifer W. said...

Oh man, I am praying for you. The waiting and seeing is sometimes the hardest part. That being said, I have heard story after story of kids just like Brooklyn who just stopped talking for a while, and one day just started blurting out full sentences. I am holding out that hope for you. Also - please don't go poking around on the internet for info about vaccinations and autism. A LOT of it is meant to scare you, and isn't based on anything. Crossing my fingers and toes for you guys.

Beth said...

I've been thinking of you! I'm glad you got a little reassurance today... so sorry you have to go through all this, though. I agree with what the last commenter (Jennifer) said. I have also heard of early talkers who stop talking.... and then start talking again. Sometimes it can be a speech/language issue, too. The fact that Brooklyn is still affectionate, showing joint affection (sharing things with you), etc. are all very positive signs. Keeping you both in my thoughts and sending lots of xoxo to you both.

Cibele said...

I am glad that you got some reassurance and I hope tha soon she starts using her little words again soon. I will keep praying and being here for you. HUGS

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