Ellisa’s Neurologist: Visit 2

Tuesday morning was Ellisa’s year check-in with Dr. Kane, her neurologist. He wasn’t reviewing any new MRIs nor was he examining her. It was merely a check-in, so I wasn’t expecting to hear anything new from him. However, I came armed with a slew of questions. And Dr. Kane patiently sat there answering every one of them.

Q&As

– – – – – – – – – – – –

1) What is she at high-risk for?  How can we decrease risk while increasing her potential?
Cerebral Palsy, learning disabilities, and seizures. There is nothing we can do to decrease her risk for any of these things. As for increasing her potential, all we can do is continue therapy and treat her like a normal child–push her to do things on her own.

2) Can diet, sleep, activity/therapy/games, medicine make a difference? Any unconventional therapies you recommend?
Don’t short change fat. The brain thrives on fat so give her a fatty diet. This doesn’t mean deep-fried foods, but it does mean whole milk, real butter and oils, cheese, etc… As long as she’s not fussy or acting tired, she should be getting adequate sleep. Again, stick with therapy and normal game play for her age. There is no medicine or unconventional therapies that I recommend.

3) What are the early warning signs of things going wrong with her development? By what age will we see these signs?
Signs can appear at any age and the signs are her not meeting milestones. The later you see milestones not being met, the better off the child. For example, if she’s not making sounds by age one you have a more severe problem with language than you do if she’s not pronouncing words well by age 5. (He noted here that by observing a child, even as early as 3 months old, one can tell how severe their disabilities will be.)

4) Percentage of kids with grade III bleeds with/without problems?
He did not have an answer for this but said that he has seen a lot of kids with grade III bleeds and some are worse off than Ellisa while others have grown up to be completely normal. I love these answers (sarcastic tone).

5) When can we do a more extensive MRI and learn exactly what areas had brain damage and the details of those areas?
We can do that around 2 years old. An MRI at 2 years old will look the exact same as an MRI of the same brain at 40 years old (I found this fascinating!). A more extensive MRI will not help us to treat Ellisa’s conditions any differently, ALL it will do is give us more insight to her brain damage. We definitely don’t need to do it but if we want to, the only risk is the sedation, and even that is a minor risk. We’ll decide if we want to do that when the time comes.

6) How does genetics vs environment play a role in cognitive development?
This is an unknown answer.

7) Is her head size growing at a normal rate? If it’s not, why and what at could be the outcome?
Her head appears to be growing on it’s own curve at the 3% mark for her adjusted age. Except, the last month it doesn’t seem to have grown. I’m not worried about the last month as it’s most likely an error in measuring. (I’m worried of course!) If it continues to decline in growth, she probably has more brain damage than thought. However, if she had more brain damage than thought, I don’t think she would be developing as well as she is. Let’s wait and see how her growth and development looks in the next year. (I hate this so much as there is NOTHING we can do but just wait and see.)

8) Last time I was here you said we can mark mental retardation off our list of worries. Do you still stick by that assessment? You also said that severe learning disabilities was our worst case scenario. Do you still stick by that?
Yes and yes. I will say she is not showing signs of severe metal retardation. Could her IQ be below normal? Yes it could. I can see her IQ being somewhere around 85 (75 is considered mentally retarded) but it could also be normal.

9) Is she at high-risk for any other disorders or ADHD, autism, schizophrenia, etc…?
Yes, she is at high-risk for ADHD, just like her brother, due to prematurity. I can tell you right now that neither of your children are autistic and she has no high-risk for diseases like schizophrenia.

10) How does a small brain function differently than a damaged brain?
Once your brain is damaged, it is damaged. The tissue doesn’t rebuild itself. What’s more important to understand is how the brain works. They’re learning more about this all the time. One area doesn’t solely control, let’s say language, like once thought. One area may control the majority of language but networks are made throughout the entire brain to control language. So, even if your language area is damaged, another part of the brain can make connections to compensate for those damaged areas. This doesn’t always happen but it can. Especially in infants since they’re still making new connections within their first 2+ years. A child with Downs for example, can’t physically make certain connections–they are lacking that ability. So their brain my look normal and be a normal size on an MRI, but their brain doesn’t function or work like it should. It’s very complex and something scientists are still trying to understand.

11) Is her life expectancy different because she has hydrocephalus/microcephaly?
No.

12) What type of hydrocephalus does Ellisa have?
Not sure. She may have a combination of communicating and non-communicating. Knowing this doesn’t matter.

– – – – – – – – – – – –

Overall, he was extremely optimistic about where she is at and what we can expect to see from her. He said that he expects her to speak and have normal gross motor skills. He’s still concerned about her head growth but said if she continues to follow her curve on the 3% mark, he’d be happy. Again, worst case scenario looks like severe learning disabilities but she could very well have minimal disabilities or none at all.

At one point he said she’s developing a lot better than he thought she would. Which was nice to hear, but that comment took me for surprise since it seems to me she’s developing exactly as I’ve expected. I wonder what he thought she would be like? I did notice on the check-out form he had circled CP and then crossed it out. Was he sure she’d have CP?

You show ’em Ellisa!

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Comments
7 Responses to “Ellisa’s Neurologist: Visit 2”
  1. Carissa Vermillion says:

    Thank you for including this. It’s great to hear your questions as well as Dr. Kane’s responses!

  2. Grandpa Tom says:

    From a grandpa’s perspective, most of the doctor’s answers to your questions seem
    boilerplate in nature in that he really said little, if anything, that was definitive. From the day Ellisa was born, this is how the doctors have talked. Careful not to say too much or to be too optimistic. Prepare you for the worst. Thank you very much. How about giving us hope for the very best?
    Sure you have to be prepared for the worst, but, come on, I hate the way the medical profession these days all seem to be on the fence and put more emphasis on the worst that could happen, rather than just say,”We really don’t know, but things look good at this point so let’s go with that.” Do you suppose malpractice issues influence this approach?
    I don’t think they should sugar-coat anything, but do they really have to be sure they mention all the bad things that can happen? Do you really want to know all that, when the chances are just as good, or better, that she will be fine?

    All any of us have is TODAY, so let’s enjoy this precious little girl that gives us so much joy and happiness. Who could ask for more?

    • pforpeanuts says:

      You are right. They do prepare you for the worst. And yes, we need hope. But, how completely devastated would I be if I was told only optimistic things only to find out the worse had happened? Would I then be upset at the doctors for not being up front with me? I guess if I had my options, I would rather hear the worst and then feel good about things working out better.

      I do think they have to watch what they say for legal reasons but I also think they have to give you the full range of possibilities. I’m not sure how I would handle it if I were in their shoes. Unfortunately, science hasn’t gotten good enough for them to tell us much of anything other than, “Let’s wait and see.”

      I enjoy Ellisa immensely every day.

  3. Natalie says:

    I love Dr. Kane! And I love that he had such informative and positive things to say. Great news. I hope you feel some relief having your questions answered.

  4. Katy Maurer says:

    That’s all such good news! She’s sounds like a determined little girl who knows what she wants. I definitely have learned that no new news is a good thing!

  5. Joseph says:

    It sounds like there is nothing to cause great concern right now, which is incredible! I know it must be terribly difficult to have to wait to hear on so many things, but try to take comfort in that no news is good news for the time being.

  6. Sarah says:

    This is all very positive, Kenzie! Thank you for sharing in such detail. I can’t wait to visit over the holidays!

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