Did your preemie suffer permanent brain damage?

Are you part of the NICU club? Do you have a child who is still struggling with the effects of being born too soon from preeclampsia? Share your concerns and stories here among parents who have been there.
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hannahsmom
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Re : Did your preemie suffer permanent brain damage?

Postby hannahsmom » Sat Mar 18, 2006 07:41 pm

AmiJo-

Our OT had us watch the "Out of Sync Child" Video. It was great and answered so many questions. When the woman was talking, I just kept saying, "That's my child she's talking about!"

amiejo
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Re : Did your preemie suffer permanent brain damage?

Postby amiejo » Sat Mar 18, 2006 04:01 pm

I am so sorry you are having to go through this. It has always been my fear that my children will have some type of disorder or something. As a psychologist, I always seem to "know to much" and over analyze the tiniest issue in my own kids. I have to put away that hat all the time.

But as some others have said...it really sounds like you are dealing with some sensory integration or processing disorder. There is a really good book written by a parent with these issues. You may find it helpful. It called "The Out of Sync Child" and it has a second activity book also called "The Out of Sync Child has Fun". Alot of parents I work with enjoy these books and use the easy activities to help their children learn to deal with with their sensory input needs (with the help of an OT).

I hope you get lots of answers soon. Please keep us posted and if you need anything, let me know.

cindync
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Re : Did your preemie suffer permanent brain damage?

Postby cindync » Fri Mar 17, 2006 10:26 pm

I do not know anything like some people on here, but one thing I heard a lot of when I was on Russian adoption lists was something called Central Auditory Processing disorder (or something like that). I guess Michelle could probably explain it. I think it fell under the sensory issues.

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hannahsmom
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Re : Did your preemie suffer permanent brain damage?

Postby hannahsmom » Fri Mar 17, 2006 06:42 pm

Hi, Jenn -

What a lot to comprehend! I'm sorry you're having to deal with this. Hannah had a brain bleed and we were told we may not find out what, if anything, it affects until later in life. Well, about a year ago she was diagnosed with Sensory Integration Dysfunction by her occupational therapist. Hannah is sensory seeking and always wants to be in the middle of things. She has trouble listening and focusing, and is very hyper at times, all of which we thought may be ADHD. But our OT said no, it's SID instead. She also has meltdowns in a similar fashion as you described and for similar things. She hates loud noises and just about everything she wears is "itchy." We were also told the whole sensory seeking part may very well be because Hannah was in the NICU for four months and she was always in the middle of commotion - bright lights, loud noises, etc.
Would an OT be able to help at all?
I hope you're able to find out more about the diagnosis and are able to somehow make peace with it. I know it can't be easy. You're in our prayers.

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Re : Did your preemie suffer permanent brain damage?

Postby sweetiesuzy » Tue Mar 14, 2006 04:28 pm

Jenn,

I am so sorry to hear of this news. I am praying for you all and I hope that with time things will become clearer. My Sam has some sensory integration issues we have been dealing with. It is super hard. I am sending huge love you!

Hugs,

mama2twins
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Re : Did your preemie suffer permanent brain damage?

Postby mama2twins » Tue Mar 14, 2006 11:44 am

Hi again Jenn,
I hope that you did not think in ANY way that I was trying to minimize Jai's diagnosis in what I wrote above. I COMPLETELY understand that any type of diagnosis given to your child is devasting news. I just wanted to give a different perspective as to what I sometimes see in the clinic. The words static encephalopathy sound pretty scary to me and to most parents, but often there are other secondary diagnoses that fall under static encephalopathy and give a clearer picture of what you are dealing with and how you can help. I also do not think that your doctor is just giving you a label. The process of identifying exactly what is wrong sometimes takes time the diagnosis can start kind of broad and get more specific. Doctors often do not diagnose children with anything until age 2 or older.
From what you are explaining, it sounds like the neurologist was leaning toward a sensory processing disorder? Did he mention that at all? We see so many children that have behavioral outbursts just as you described because of exactly what you said....to much information to process and it puts them over the top. Is she getting any type of therapy at the time? Occupational therapists tend to be the ones that specialize in SPD (although physical therapists do too) and I do see improvement with therapy.
I am glad that you are getting answers and that you feel confident with you neurologist.

wcarder
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Re : Did your preemie suffer permanent brain damage?

Postby wcarder » Tue Mar 14, 2006 10:38 am

Jenn, thanks for the update. Again, I am so sorry that you guys are dealing with this, but you are right - atleast you are on the road to better understanding Jai, and how to help her. I'm so glad you have a doctor who is finally listening. You sound like you are dealing so well with this.......You are such a wonderful mommy.... ((((hugs)))), sweetie........


jkaay
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Re : Did your preemie suffer permanent brain damage?

Postby jkaay » Tue Mar 14, 2006 01:11 am

Support? Of course. Let us know how we can help. I'm sorry this is happening, but glad for Jai that you are such strong and caring parents. She's a lucky little girl to have you!

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Re : Did your preemie suffer permanent brain damage?

Postby fiona » Mon Mar 13, 2006 07:51 pm

Jenn,

I read this trying to imagine what the world must be like if you can't process visual and aural stimuli easily and I figured I'd probably be having a meltdown too. Poor Jai - I hope the meds help.

It's good to hear your doc knows his stuff - being able to trust his judgement must be some comfort in all this turmoil. I hope you get more answers in a couple of weeks.

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Re : Did your preemie suffer permanent brain damage?

Postby jenn » Mon Mar 13, 2006 07:03 pm

http://dallas.easterseals.com/site/DocS ... docID=1486

The above link is the best piece of info I have found yet.

I'm still taken back by it all... but who wouldn't be?
To hear a Dr. say that your child has brain damage is just devastating in any degree of severity.
In Jai's case it's all still so new that we don't know how severe it is. In fact he (the neurologist) says that it could be a few years before we can get a clear picture from tests what areas of her brain are effected.
He was very thorough and experienced (in other words- old as dirt and completely knows his @#$% ) [:)]

He diagnosed Jai without anything more that an exam (which may be alarming to some) But in Jai's case he says he can see it and from the info we gave it all makes sense.
He put Jai on an antidepressant (aimtriptyline) and that's to help Jai focus and or "pull it together" so she can function.
Her condition (as I'll put it) has gotten to a point that she's just out of control. Lots of meltdowns that consist of whaling, kicking, thrashing, hitting etc. This was happening all most all the time over the silliest thing (wrong color shirt, having to go to school, food was too cold, or Natalia as much as looking at her could set this off.
I couldn't handle walking on egg shells anymore and her dr. agreed sending us to this Neurologist.
Jai had a huge meltdown there and her true colors were flying.
He says this is classic of the condition.
There is just too much stimulation in the world that she can't process.
She pinches her eyes a lot when things are too visually "busy" or holds her ears at loud noises (or has a melt down).
We're also told this could explain what we thought was hearing loss. We now know it's just her inability to process what she hears and how to respond.
It's all so complicated.
In fact I thought the whole world (including this neurologist) was just going to label us as parents with a spoiled bratty lil' kid.
That's how she comes off with her behavior from not having the tools to control this condition of hers.

As I said it's all still so new and each case is very different.
We go back in a couple weeks, I hope to drill our Dr. with endless questions.
I hope it's not just a label they've stuck us with, I really just want to better understand Jai so we can help her and ourselves.
We've spent a lot of time beating ourselves up over this...Just something you can't help but do.

Well I'm being summonsed by my 5 yr old princess, I must go for now.
I'll stay in touch.

Thanks for all your support and understanding... without you guys where would I go?
I appreciate all of you.

All my love, Jenn


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