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WOO HOO!!! Very long, but worth the read! Please get excited with me!!!! :)

Posted by on May. 29, 2013 at 7:10 PM
  • 13 Replies

Okay, a little back story for those who may not know...

Dante, now 5, was born with Agenesis of the Corpus Collosum, Microcephaly, and Colpocephaly. Basically, he is missing his Corpus Collosum (middle part of your brain), his brain is underdeveloped, and the ventricles in his brain are dilated. I randomly requested an extra ultrasound when I was 37 weeks just because I wanted to see him, my dr made it happen, just to send me to an ultrasound specialist that same day..They then noticed something wrong with his brain. They induced me at exactly 38 weeks to make sure all specialists were there in case it was something serious (they said 2 of the 3 things it could be were life threatening). After he was born he got CT scans, MRI's, the works..and that is when it was determined what he had. He was in the ICU for about a week with a feeding tube because he wouldn't eat. And when I saw his neurologist for our first appt after he got out I was told due to the brain problems he would never walk or talk and would be in some kind of special school for his whole life. I wouldn't accept it and he started physical therapy at 2 weeks old. 
At 6 months he started sitting on his own, and by his first b-day he was walking :) Fast forward to now, 5 years old...He is doing amazingly! He is obviously delayed, and probably always will be, he is at a 24-30 month level in speech, gross and fine motor skills, cognitive, everything...BUT he is doing everything they said he would never do :) 
Main problem---His behavior...all Dr's that I have ever brought him to have just chalked it up to 'ADHD' or 'go see a behavior therapist'...nothing has worked. I refused meds for the 'ADHD' simply because I don't believe he necessarily has ADHD and don't want him on meds for something he doesn't have, even if it were ADHD I would try every other avenue before resorting to meds. He does have ODD (that one I definitely believe haha). His behavior has just got completely out of hand, and he is becoming violent :/ I have ended up with numorous bruises, bite marks, open wounds, etc from his 'tantrums'...I have tried everything his psychologist and behavior therapists have suggested and NOTHING is working, he just continues to get worse..Now he is becoming violent with his little brother (age 3), if he gets mad at me for something he goes for his brother, if we are in the car (which he HATES, it's always worse in the car) I have to pull over every 5 minutes because he will hit, pinch, smack, throw toys at-, pull hair, all to his brother...I am at the point where I feel legitametely lost..I brought him back to his Dr last week (he sees a behavioral pediatrician) and we saw a different dr this time, one he has never seen before..This Dr REFUSES to agree with the ADHD diagnosis!! He gave me the behavioral assessment sheets to refill out, one for me and one for DS's teacher, and wants to start at ground zero. No assumptions about what it is, no looking through previous dr notes, nothing. He was completely shocked when he found out what Dante has (the ones he was diagnosed with at birth) and said that all kids he has ever seen with the ACC are exactly like Dante's neurologist said he would be. The fact that Dante was climbing and jumping all over the table, talking, and running around the room left him speechless. He is now officially curious about the whole situation and is very excited to get down to the bottom of everything, including the behavior issues, and figure out a way to help Dante and I both while doing his best not to tack on even more, unnecessary diagnoses!! I am pretty excited about it :) No dr that he has ever seen in the past 5 years has seemed to truely care or be the least bit interested in much of his care, I honestly believe this one is actually going to help us. FINALLY! Baby #3 is on the way, due in September, and I have been truly terrified of Dante having one of his outbursts around the newborn, now I may not have to worry AS much!! Sorry, it is soo long, I had to share with others that would understand and share my excitement about this dr :)

by on May. 29, 2013 at 7:10 PM
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Replies (1-10):
darbyakeep45
by Darby on May. 29, 2013 at 7:40 PM

Hugs mama!  Glad you've found a doctor who is willing to help you figure out what's going on with your son!

LilDsMomma
by on May. 29, 2013 at 8:20 PM
Thank you!! It has been a very long journey so far getting him to where he is at, and I really don't want to see him fall even more behind or lose progress just because of his behavior getting worse :/ he even 'attacked' (for lack of a better word) his teacher last week, biting, punching, kicking, pulling her hair, all because he didn't want to sit down and watch a movie with the other kids :(

Quoting darbyakeep45:

Hugs mama!  Glad you've found a doctor who is willing to help you figure out what's going on with your son!

SamMom912
by Silver Member on May. 29, 2013 at 9:19 PM

I am excited for you... I think your son has made amazing strides! Physically, he sounds unstoppable! What a dynamo! 

That being said, behaviorally and socially and emotionally, it sounds like he is struggling. I REALLY love Dr Ross Greene.. He wrote the explosive child... And it sounds like your son, is exploding all over.. Exploding over you, your 3 year old.. Exploding over his teacher.., and its messy! 

But I want to express that regardless of what any Dr. tells you, youll benefit from this book. dr greene talks about how our kids have a learning disability in the areas of social and emotional regulation. A disability in learning how to handle frustration, how to solve problems, how to manage unmet expectations.. Etc.. And whenever anything taps into this disability causes an explosion... And Dr greene explains how to handle explosions.. And its counter intuitive to what we are taught as parents... And IT WORKS! My son, since following Dr Greene (under direction of his Psych) has grown ans stretched and responded appropriately and been so happy! 

If its easier for you then borrowing from your local library Dr Greene has a non profit website-www.livesinthe balance.org that has all his info. On the left side, there is a section with 4-10 minute videos that explain his theories, and how to apply them. 

I wish your son and your family tons of success! 

LilDsMomma
by on May. 29, 2013 at 9:40 PM
1 mom liked this
Thank you soo much!! :) I actually JUST got that book last week and haven't had time to sit down and open it yet :/ I will definitely make time now, it sounds like it is a great book. I'm glad to hear that your son is doing so well now, and I can only hope mine will respond the same :)

Quoting SamMom912:

I am excited for you... I think your son has made amazing strides! Physically, he sounds unstoppable! What a dynamo! 

That being said, behaviorally and socially and emotionally, it sounds like he is struggling. I REALLY love Dr Ross Greene.. He wrote the explosive child... And it sounds like your son, is exploding all over.. Exploding over you, your 3 year old.. Exploding over his teacher.., and its messy! 

But I want to express that regardless of what any Dr. tells you, youll benefit from this book. dr greene talks about how our kids have a learning disability in the areas of social and emotional regulation. A disability in learning how to handle frustration, how to solve problems, how to manage unmet expectations.. Etc.. And whenever anything taps into this disability causes an explosion... And Dr greene explains how to handle explosions.. And its counter intuitive to what we are taught as parents... And IT WORKS! My son, since following Dr Greene (under direction of his Psych) has grown ans stretched and responded appropriately and been so happy! 

If its easier for you then borrowing from your local library Dr Greene has a non profit website-www.livesinthe balance.org that has all his info. On the left side, there is a section with 4-10 minute videos that explain his theories, and how to apply them. 

I wish your son and your family tons of success! 

mandee1503
by Amanda on May. 29, 2013 at 9:45 PM

*hugs*

suebee3
by on May. 29, 2013 at 9:51 PM

Good luck and keep fighting for all the answers you need!!  

I was having issues with my middle daughter when she was 2 and all the doctors kept telling me she was PDD.  I knew she wasn't!  After many appointments and meeting going through early intervention she had a processing issues that was worked out with some speech thearpy and finding out she had a ton of food sensitivities (and removed those foods from her diet)  we have a normal 6 year old girl!  You know you child better than any doctor you fight for what you know is right Good Luck !!!   

Elyssa414
by Elyssa on May. 29, 2013 at 11:16 PM
I'm so glad you found a good Dr! Congrats, and keep us posted
LilDsMomma
by on May. 30, 2013 at 12:37 AM
Thanks ladies! It's really nice to have others that understand the need for a good Dr in these situations, everyone IRL looked at me like I was crazy because of how excited I got haha
angduse1
by on May. 30, 2013 at 1:31 AM

His progress is awesome even with the out bursts, praying he sees how important his siblings are to him soon..


..so glad you found the help you need

sometimes we take things for granted.. Bless your heart for always 

staying strong and taking the right steps to help your child.. 

You hang tough.. and keep that smile on your face even through

the roughest times.. Keep us posted... And take care of you sometimes when you can

bow down

RobinChristine
by on May. 30, 2013 at 3:55 AM

way to go, hope all works out

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