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Six-Month State of Brain Review

February 5, 2011 at 14:40

Mama Lewis

9

Every six-months, May’s team review her “state of brain” (if you will allow me such a turn of phrase. Actually, this seems pretty minor compared to “half-brained baby” and no one seems to mind that).

It is a developmental review, but “state of brain” sounds so much more accurate. Accurate and ominous. Accurate because they don’t just look at her developmentally, but also review her general health and seizures. Ominous because inevitably someone says something at these reviews that sends me into a minor tizzy for weeks.

We’ve had two other reviews, at six-months and a year. Originally, I thought these reviews were for us, the parents, to learn how May was doing. To be honest, I would find that far more helpful as opposed to what they really are for, which is for the team, to hear how we think May is doing. The positive thing is that having everyone in the room together means that we collaborate on what we need to do next.

Without a doubt, May’s team benefit us. They fight for her funding. They acquire amazing equipment for her. In the coming months – or years – as the government tightens ever further on funding and gives local councils ever more freedom to spend it as they will, we need professionals fighting our corner. That is, if they still have their jobs (see my last post).

But, I am not a saint and I do disagree with the professionals sometimes. During May’s last review, her pediatrician made May’s weight a sticking point. Despite me repeatedly explaining a recent weight loss and May gaining it all back by the time she saw her (within a month), she insisted I see the dietician.

Thus began a vicious “British” argument, which means we didn’t argue but pleasantly disagreed with one another, neither of us backing down. She even called me to discuss it further that evening and I again stressed my “deep reservations” about seeing a dietician – to no avail. She’s made the referral anyway.

I made the following points to her, which she clearly disagreed with, but I still feel are true:

1 – If it wasn’t for May’s brain-damage, we wouldn’t ever have a dietician conversation. If May was a “normal” baby, she would be given a prescription for a supplement to boost her weight. Because she is brain-damaged, it is assumed that her lack of weight is something I need help on (what I will call the ‘Parental Brain Deficiency Syndrome’ when doctors seem to think parents of brain-damaged children are also brain-damaged).

Having said that, she did write in the report that she felt nutritionally May had an adequate diet, but that input into calorie uptake would be useful to the parents. It’s not, but at least I suppose she tried to soften the blow.

2. It is not always necessary to intervene with May’s care. We receive a constant stream of advice from people. We are not allowed to parent on our own. We are not given the room to make mistakes. In this case, if we feel that May’s eating has significantly improved and the pediatrician is unable to look beyond the numbers, who is correct?

I’m a reasonable person. In general, I follow the advice I am given. But, I should be allowed to disagree and make my own choices about how to parent my child over fundamental things like what she eats.

I received the written report for the review yesterday. It contained all kinds of small discrepancies with what I said on the day. The report says she has just begun vocalizing, when she has been doing that for a year. The report says that May doesn’t enjoy bouncing as much as she used to. What?!? Tell my arms that. Finally, the report contains some supplementary advice, I assume given by the dietician of whom I specifically expressed reservations about.

The advice is to change her milk to Aptimal to add calories. Good advice, if it wasn’t for May drinking Aptimal since she was born.

I suppose this may seem petty when compared to the enormous amount of good work May’s team do. And, I’m aware of the irrational streak in me that just wants to tell everyone involved with May to F-off and leave us alone. Or, maybe it is not unreasonable for me to ask that when assumptions are being made about our care of May, the facts should be correct.

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9 Comments

  1. Madge Woods February 5, 2011 Reply

    The facts should be correct. And they should also recognize that you know your daughter May the best. And lastly you are a responsible parent or you wouldn't be getting all this help for May in the first place. Listen to your heart. It has guided you along this journey. May is thriving, I see it in the few months I have been following you.

  2. n0thingbuteverything February 6, 2011 Reply

    We wasted our time and energy seeing a dietician when S was about the same age. Similar story, but I caved and went along to the appointment. The dietician started by asking me questions. After I'd answered them she responded by telling me that she had absolutely no further advice to offer because we were already doing everything she might suggest. So yep, stick to your guns. Mother really does know best.

  3. Brigid Keely February 6, 2011 Reply

    It's kind of scary that there's discrepancies/errors on the report.

    • Stacie Lewis February 7, 2011 Reply

      I suppose it doesn't scare me, but I do think accuracy is important. Especially for a child like May, where the progress she makes is so limited compared to "normal" children, it is important to reflect exactly what she is doing.

      I have contacted the team, and I'm sure they be concerned over any inaccuracies and rectify them.

  4. Paul Saxton February 7, 2011 Reply

    Hello Stacie

    "Or, maybe it is not unreasonable for me to ask that when assumptions are being made about our care of May, the facts should be correct. "

    No, it's not at all unreasonable...


    I just popped in, by the way, to add my new baby congratulations and best wishes. That's bloody marvellous news. Good for you!

    Paul x

  5. Natalie February 7, 2011 Reply

    Sounds just like my week with Frankie! They spend an hour with them and think they as 'proffesionals' no them best! Pushing the fact your child is 'brain damaged' in your face rather than treat them normally when it is actually possible. We see our babys in such a different light as were confident they will acomplish what they say they 'arent capable of' and thats what gets them achieving what they do each day, confidence and faith.
    Natalie.

  6. Jessica February 9, 2011 Reply

    Plus, where was the praise, the encouragement for all you DO do...when sifted from all you've supposedly not perfected. I hate answering to outside parties for any of the elements of my life, it's the worst when the oversight is on the parenting of your children.

    If these people are going to be so closely involved in the care of May, they should be closely involved in ensuring the well-being of the whole family, especially supporting the efforts of your devoted mothering. Have peace, you're doing a GREAT job all around.

  7. Stacie Lewis February 10, 2011 Reply

    Short update!

    I saw May's physio yesterday and she said to me that she'd passed my points on in order for the report to be adjusted. And, she added, "I thought that was weird, about not enjoying bouncing, when I read the report too. I couldn't remember you saying that!"

    So there you go.

  8. karamelissa March 5, 2011 Reply

    I have just recently been experiencing some of these things with Sebastian. We did see the nutritionist as we were referred after Seb lost some weight during the holidays from being sick. It was not a pleasant experience. There wasn't much she could offer aside from a caloric powder to add to his food which we have done and it has helped. He has an excellent diet and loves eating but obviously burns calories when eating since it takes him so long. Not to mention his reflux. As parents we are with our children and these professionals often times put us into the categories based on our child's diagnosis which is ridiculous because every child and parent is different. In think it is ridiculous that the team you spoke to does not think its reasonable to add a caloric powder because of May's brain damage. Obviously you feed her properly already, I love the post about her eating peanut butter! As for the discrepensies in the report, unfortunately almost every time I get one back from a meeting with a professional for Sebastian we have them too. Little and big details that make me feel like they aren't listening or they get my kid confused with someone else. What would they do if we weren't on top of our game?

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