Cognitive Disabilities in Preemies

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Re : Cognitive Disabilities in Preemies

Post by resmom » Tue Aug 25, 2009 06:46 am

Hi for the 1st time. I just became a member, after trying to do some research for myself (My son was born in April 2000 & was induced early due to my HELLP)

He's in 4th grade now... and I REALLY don't want to alarm ANYONE...trust me there!... but it took more than 5 years to get a good diagnosis of his Learning Disability/Cognitive issues.

That's what I wanted to share:

RE is diagnosed with NVLD (also referred to as NLD) That stands for "Non-Verbal Learning Disorder"

If I can save any other mom the time, frustration and heartache... you see it is as simple as this: most LD's are left-brain hemisphere issues... NVLD is right hemisphere...and a whole different set of circumstances (mostly the social cognitive piece, but handwriting, math calculation & writing composition).

VERY highly verbal in the manner in which they interact w/their worlds (talk, talk, talk!!!)

If you (like me) are out there trying to get medical pro's to define that "difference" you know your child has...and you feel like you've gotten no where...ask about NVLD (it was never mentioned to me) There is a BIG professional debate over is NVLD actually Asperger's , or are Asperger's actually NVLD..but after MANY eval's the only thing said would be "He's not Autistic"

No, He's a poster child for NVLD...now finally we can be more effective on his behalf.


I have survived these years by knowing:

"As RE's mom, it is my job to seek and understanding of which therapies he would benefit from... and then make those therapies available to him"

Once you can filter out the guilt...there's a pretty big job to do, and no time you can afford to waste by focusing on ANYTHING else.

I hope this saves someone..even one of you... the years of wasted time & frustration I went thru the last 5 years :)

Re : Cognitive Disabilities in Preemies

Post by deerhart » Tue Oct 18, 2005 11:01 am

While preemies do encompas a number of children with disabilities, most of the kids diagnosed aren't micro preemies. Though I am sure the percentage of micro-preemies with problems is rather high in comparision to other children. The real interesting note is the genetic component in many of these conditions that is starting to come to life. I know they are starting to do studies that are tracing autistic tendancies in families of children that have been diagnosed with autism (I would probably meet the diagnosing criteria for aspegers even today and most defenitely would have as a child). As for many of the neurological disorders, I haven't seen much that points to them having a huge increase in diagnosis due to prematurity. I just don't think the data is there yet as they still don't know the cause or why some kids get it and some don't (versus things like CP, and even motor skill delays). ALso worth mentioning is that many LD's also tend to run in families (dsylexia etc..). The genetic trend is one reason wny i think the percentage of siblings that are also diagnosed are fairly high.

Another idea I have thought of is that many of these type of disorders kids end up with multiple diagnosis. Part of that may simply be that the main problem makes you less capable of coping with the world and thus you compensate incorrectly bringing about another condition (a lot of anxiety issues with kids with things like add, autism, etc..)

As for my family, I had the 2 pih/pe pregnancies and I had one aunt on bedrest for 7 months with PTL due to ovarian cysts. No other issues at all and we have at least 6-7 people who are already diagnosed or may meet the criteria for diagnosis of a neurological disorder. If you think about it, in older generations people were flighty, spacey, unorganized, wallflowers etc... today we see these same exact traits in terms of ADD, Autism etc..

Re : Cognitive Disabilities in Preemies

Post by ekc » Tue Oct 18, 2005 10:04 am

Wow, that statistic seems so high! Maybe it is so high because when you average the very early micro-preemies and problems they suffer from with preemies it bumps up the % much higher.

Just a thought.

My son was born at 33 wks. and I was told there would be a chance that he would have LD and it would most likely surface around age 2. He just turned 2, though, and developmentally he is right on track at this point (thankfully).

Re : Cognitive Disabilities in Preemies

Post by deerhart » Mon Oct 17, 2005 09:07 am

I think the reason why it seems to be so much more prevelant is that people are actaully more aware of these things and aren't writting off kids behavior as simply poor discipline. With that said, ADD/ADHD still only occurs in roughly 5-10% of the population (though medication rates are in the 15-17% range).

Also add into that further demands by the school system mixed with issues of boredom/lack of interest for some kids and harder less diagnosed and even less recognized learning problems with other kids and things start to come together on WHY. Think of it this way. Our educatinal system is designed for auditory learners yet roughly 10-15% of people are strictly visual learners with another 30% mixed visual/audial learners. The type of classrooms we have aren't conductive to the best learning environemnt for roughly 30-40% of the students.

Also alot of these things do seem to have a genetic component of some sort with traits running through families. The degree and severity seem to be what really vary. Also remember that different docs view the same criteria differently, so people that are more borderline cases could fit one doc's diagnosis but not anothers (if you ever read the DSM VI there aren't any concrete defenitions for what excatly things like severe are.. what is severe and inturpupting one persons' life may not e severe and dsirupting to anothers.. for example both of my children's hyperactivity could be deemed severe and disrupting to a person who is used to very well behaved, quiet and calm children where in my family its consider perfectly normal childhood behavior after generations of hpyer/extremely active children!)

There is a large amount of fear when it comes to these types of diagnosis. My guess is its not the fear of the diagnosis, but rather the fear of the unknown. We DON'T know what our kids future will be like because of this, how people will react to them, what will b harder, easier, impossible.

As for ADD/ADHD, I actually have 2 cousins with that diagnosis. The oldest is now almsot 14 years old. When he was first diagnosed he was extremely violent, impulsive and almost uncontrollable (from age 2-6). Now he is getting to the point that he is starting to back down his medications and it looks like he may be successful at being able to come off his meds or have a very low dose of meds in his future. He does well at school and plays sports with no problems! I think the hardest part of any diagnosis is getting past the fear and then sitting down to figure out what the true expectations is for your unique situation (instead of the worst case scenerios you will find out about or stereotypes that come to mind) and then going from there.

Re : Cognitive Disabilities in Preemies

Post by seamus » Mon Oct 17, 2005 07:58 am

I wonder what the percentage rate of full-term babies with ADD or ADHD is. As a teacher I see an awful lot of teenagers with either. It is rather scary, actually. I guess what I'm trying to say is that learning disabilities and ADD/ADHD are pervasive in our culture. I don't know why - something in the water? too many video games? culture of immediate fufillment of desires? I dread ADHD because while there are far worse things to deal with from a medical standpoint, it is so frustrating to have a child so near, but yet so far.

I have a 5 year old, ex 33-week preemie. He caught up very, very quickly. He is a summer baby and so is young for his grade. At K4 and K, you can see how a few months can make a huge difference. Seamus is definitely less emotionally mature - but then, he's a guy! Enough said .. ha ha. Sometimes I think I should've held him back, but he is very bright. He just gets antsy. This year, he is a little less "afraid" and acts out a little more, however, the past year has been * for us all. He basically lost his mom from January - August between bedrest and almost a 5 month hospital stay for Malcolm (26 week preemie). I think he is having a really, really hard time with it. I hope we can get both of them through this.

Malcolm had intraventricular hemorrages (Grades 1 and 2) and has a PVL (periventricular leukomalacia). PVL is damage to the white matter near the ventricles of the brain and generally is the etiology for CP. So he is at risk for CP. The neurologist said basically there isn't a lot of connection between the amount of brain matter damage and the amount (or any diagnosable) disability. I, of course, am very worried for him, however, there's nothing I can do but sit and wait for those developmental milestones. He is in Early Intervention (GA's Babies Can't Wait) and has an OT and a ST. We are still waiting on the PT. None of the services can hurt ... so if you qualify, it's a "good thing."

Re : Cognitive Disabilities in Preemies

Post by paige_va » Thu Oct 06, 2005 10:22 am

I appreciate you sharing your stories. I know that it's early to worry about Meredith's development, but I guess that's part of being the neurotic first-time mom of a preemie! [;)]

Re : Cognitive Disabilities in Preemies

Post by deerhart » Thu Oct 06, 2005 08:38 am

I am going to jump on that article a bit because things like ADD, ADHD are more neurological issues and not cognative issues (same with many developmental delays, ASD and physical delays). Big differnce as cognative tends to be dealing more with the person's intelligance and none of the neurological disabailites have cognative abilities as part of the diagnosis (though something like 60-70% of all person's diagnosed with actual autism - Autism is actually a subset of the autism spectrum disorders which ASD incompasses autism, PDD-NOS, Asperger's, and childhood regression something or nother. There is also another catagory that docs used which is HFA (high funcitoning autism) which some use as a subset of PDD-NOS and some use as a subset of autism, when its been used as I have seen under the actual autism catagory it is often used to indicate a milder form and no cognative problems)

Cognatively, both my boys (37 and 36 weeks) are advanced. We suspect that at least Alex will come out to highly or even higher on the gifted scale if not overall at least in several areas.

Also remember that many delays and such are normalized by age 5 and even with what is more serious conditions 9like add/adhd, ASD, CP etc) they come in a variety of degrees of severity and do not define what the child's future is.

The numbers for all disabilities are rather scary. 1 in 155 children are diagnosed with some form of autism. Boys are also diangosed with alost all neruological disabilities at a rate of something like 3x more then girls.

One of my boys is special needs and the other is developing normally. Most would only notice something was off when my son acts up some, otherwise he has learned to compensate for his weaknesses. while now he still has some areas of extreme difficulty, we anticipate that in the future many will not have a clue of his diagnosis.

Re : Cognitive Disabilities in Preemies

Post by jenandtheboys » Wed Oct 05, 2005 02:15 am

Our birth to three program in SC is called BabyNet, and both my boys went through it. We received free evals and services from a nutritionist, PT, OT and speech. My youngest "automatically qualified" for the program due to his very low birthweight (I think the cutoff is any baby under 1000 grams). But my oldest was referred by our high-risk pediatrician....we only see her maybe 4 times a year, and I think our regular ped could have done the referral too.

Anyway, the original question about cognitive disabilities:

Andrew (born at 29 weeks, 2 lb. 15 oz., now age 4) has been bounced around a lot in terms of what kind of diagnosis he will be given. He didn't begin really talking (more than just a word or two) until age 2 1/2, and early on was showing some of the warning signs that point to autism. He was thoroughly tested, and fell just short of meeting the autism criteria. The high-risk ped started out by saying he has PDD--pervasive developmental disorder, which is a milder relative of autism. It affects speech development, and social interaction. Kind of hard to explain, I don't even fully understand it myself. After subsequent tests and Andrew began making such great progress, the docs started even backing away from a PDD diagnosis, and began saying "expressive speech delay" or other such labels.

Today Andrew is in regular K4 preschool, and receives both private and school-district based speech services. He is extremely bright (can I brag?[:)])....he can count to 100, sight-reads more than 30 words, knows all letters and their sounds, knows his own home phone number and address, etc. Now it is mostly about the "abstract" with him: if something is concrete and can be memorized, he can do it. If it involves inference, drawing conclusions, interpreting social cues, it's harder for him. We don't know what additional help he will need when he enters school--he has come so far and surprised all of the experts up until now.

Certainly the statistics are scary, but I still consider my boys as success stories despite the difficulties. Hard as it is to do, try not to worry too much until there's reason to....if there ever IS a reason too. We all hope that Meredith will ace the evals and won't ever show a need for special services, etc.



Re : Cognitive Disabilities in Preemies

Post by paige_va » Wed Oct 05, 2005 01:32 am

Alex,
Thanks for the information on EI. I've heard of it, but don't know that much about it. However, if an eval is free, it only seems to make sense to avail myself of the service. I'll ask our pediatrician at the next appointment. [:)]

Re : Cognitive Disabilities in Preemies

Post by youtan » Wed Oct 05, 2005 01:05 am

I know - its terrifying thinking about all the posibilities. A couple of days before Nathanial was born one of the neonatal docs explained all kinds of scary statistics.

I've always just tried to be extremely proactive with the medical care that my boys have received, making sure that the docs don't miss anything. I want my boys to have the best chances for success as possible in case something like this were to pop up.

We've hit school age for Nathanial which is a milestone - because most of these kinds of disorders are not especially apparent until they start school, Early Intervention programs of course are important or OT or any PT needs early on. But, attention disorders are especially difficult to diagnose. We're confident that Nathanial doesn't have any of these needs - and I think for hopefully the last time, we are letting out a huge sigh of relief. Jonathan however, has had some speech problems, and it has been suggested that as he reaches school age, we'll need to follow-up on these issues, just in case. But, in any case, both my boys are (in my humble & biased opinion [:I]) exceptionally intelligent. Nathanial is doing awesome in school....

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