Thank you all for sharing in the lives of our three amazing children- Mairead, Jack, and Ben. We hope you visit often!

Wednesday, July 14, 2010

MRI results

I finally heard back from the neurologist. I was literally 10 minutes from calling a patient advocate. Anyway, here is the deal. The good news is that there is nothing seriously wrong. No malformations, no tumors, no lesions, cysts, etc. That is hugely helpful. He said that he can see the damage done by the clot, but that it is not serious damage and it is the only damage. All good.

The fact remains, however, that there is damage, and as we all know, her brain does not work the way most kids' brains do. He said that it is certainly reasonable to assume that her delays are a direct result of the stroke, but that there is nothing in the brain to actually SEE that would give us any concrete explanation.

He also noted 'incomplete myelination.' She is very young, so that is to be expected to some degree, but it is something he wants to watch. Of course, I googled everything after I talked to him and one analogy for disrupted myelination is that if the brain is the internet, brains with complete myelination operate on DSL, but incomplete myelination can be like dial-up. The information is all there, but it doesn't connect as quickly as it should. This makes perfect sense to me, actually, because I feel like that is how M's brain operates. It's in there.... it just doesn't connect the way it should.

He wants to set up a blood and urine collection (fun times) to run a complete biochemical panel to look for and/or rule out anything genetic, metabolic, hormonal, etc. He also wants us to follow up with a neuropsychologist- mostly in the hopes that s/he might be able to help us on the educational side of things. If a stroke is not a disability (which it is not, according to the schools), she may end up with a diagnosis of PDD-NOS or something, just so she has a diagnosis the schools will accept.... we'll see.

I was talking to him about how the schools don't see a stroke as a disability and that she operates on just about a 12 mos delay, and he was actually laughing at the ridiculousness of what I was saying. He is incredulous that they won't qualify her for a preschool program. I was actually glad about this since he, a neurologist, validated everything I think.

He wants to continue to follow her "for some time." No idea what that means. He agrees with her original neurologist that she is a complicated case and there is no clear cut answer to how she will progress. Neo-natal stroke is under-researched and the outcomes vary to a huge extent. Not super helpful to me, but that's how it is.

I am relieved that nothing is seriously wrong. I am relieved that he agrees that we can reasonably surely trace her problems to the stroke and not to a whole new problem. I am glad he is going to follow her, and I am actually glad that he can see brain damage because I KNOW her brain doesn't work right, so I am glad to know that my instincts are right.

I am not super excited about the biochemical panel because I will stress about her having some crazy disease I haven't even thought of. I am anxious about the neuropsychologist because I fear an ASD diagnosis when I truly believe that is not the case. The only good thing about an ASD diagnosis is that the schools would HAVE to help her.

I guess that's it for now... thanks, everyone, for all of your support. On to the next steps...


Joseph "Connor" said...

I'm glad you finally heard back! I'm happy to hear Mairead has no serious damage- that is a relief. Your explanation of her brain was so perfect- DSL v. Dial-up. I feel that way about Connor sometimes. Don't stress about the bloodwork- Mairead is a healthy little girl! Can't wait to see you guys Friday!

Caitlin, Al, and Brielle said...

I am glad that you got results and that there is no serious damage. I completely understand your thinking that you don't want her diagnosed with something that she doesn't have, but if it gets her the help and services she needs, then it's a good thing. Oh, and your instincts as a mother are usually correct, so good for you for advocating for Mairead. You are an incredible mother. I saw that last week when you were here with your three adorable kids.

Terry Family said...

It's wonderful to hear the positive MRI results, and that the Dr. is in totally agreement with your assessment of Mairead's abilities. Let's pray for a quick appointment to the neuropsychologist (I think that was the term you used).

I just can't imagine the emotional roller coaster ride you and Dave are on. Like all roller coaster rides, there are ups and downs but at the end of the day, it's a great trip. xxxxoooo