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Not step related but I feel I have friends here that can help shed some light on the situation

proud mom's picture

Wow where do I start???? Life I just don't understand it my little boy Bryce has fought in this world since the day he was born when is enough enough? He came into this world and was unable to maintain his body temp and had a high white count so he was given an IV in his little arm and put into an incubator to regulate his temp. Then to top it off he loses more weight than he should have so we finally take him home on the condition that we take him to the pediatrician each week to be weighed until his weight gain is consistent. So after about a month he finally starts gaining properly. Well at 2 weeks old he starts with an ear infection we clear it up and in 2 weeks he gets another well he came down with one in Sept and he had fluid on his ears from Sept until Dec when we see an ENT and they decide to put tubes in his ears that happened in Jan. During these ear infections he also had the croup and was hospitalized with it 2 time in Nov. and had RSV so we came home with a nebulizer and begin daily breathing treatments (actually they were every 2 hrs) Well they send us to yet another specialist for Asthma, he is diagnosed at 15month with asthma and begins taking Singulair daily. During all of this he also isn't hitting his milestones like he should not talking or walking or even crawling like he should be. He finally crawled on all fours at 15 months he didn't take his first step until 21 months. We set up physical and speech therapy once he finally begins walking they no longer felt the need for the physical therapy but continues with the speech. He is very clumsy and when he walks it doesn't seem right so off we go to yet another specialist this time we drove to Erie Pa to the Shriners they check him out an find no orthopedic problems. At the age of three his ped decides that he needs to be seen by a neurologist so off we go again to the Klingberg Center in Morgantown to be tested for Autism. Well he doesn't meet all the criteria for Autism so he is diagnosed Global Developmental Delay, so we continue working with him hoping he will "catch up" well at age 4 we enroll him into the public school system for preschool oh what a year he didn't listen to any thing it was rough. He receives physical, speech and occupational therapy at school. Well we request testing for possible special needs so they do the testing between pre k and kindergarten and his IQ is too high to qualify for special needs. So off he goes to kindergarten and is struggling so we make another appointment with his doctor after going over all the problems he has they diagnosis him with Inattentive ADD and start him on medication this is in December well, in January he begins having horrible temper tantrums, they just get worse and worse. I speak to his doctor and he sends us to a psychiatrist that specializes in ADD. We go to see her and she feels that the tantrum that have now became rages are a result of the medication he is on, so she changes the medicine. Oh the rages get worse and completely out of control so off we go back to see the specialist and come to find out his body can not handle a stimulant medication. She changes him to yet another medication and OMG what a difference it was like I had my boy back. So the new medicine was working wonderful up until 2 weeks ago so needless to say we were back at the doctor yesterday and she had to change his dosage so let’s pray that this works. In the mean time I have requested he be reevaluated for Autism in hopes to find out if he has what is called an Autism spectrum disorder. The pediatrician contacts Klingberg and they don’t feel he needs to be reevaluated they have already diagnosed him Global Developmental delayed. So now what do I do? Where do I turn for help? My child is 6.5 years old and acts like his around 5 years old, all I want to do is to help him.

Thanks for listening I am sure I left somethings out but just really needed to get this off my chest.


Sita Tara's picture

Contact your local MRDD. They have programs for all levels of developemental delay. My son attended an MRDD preschool (where his dad works) as a "typical peer" b/c he didn't have a disability (they put two non-disabled kids per classroom to help the teachers gage what level the disabled kids are at.) It was a wonderful experience. There were a lot of premie kids there b/c they are a little behind in development. Most of them went onto regular public school. I don't know if he can get into the preschool program since he's in K. But they may have resources to help you.

Hey- and from what I hear Jenny McCarthy's book "Louder than Words" is a very helpful read. I haven't read it, but her son has autism and she writes of the experience of trying to find out what was happening with him and what to do to help him.
Good luck, and keep trying.

Peace, love, and red wine

A L Cannuck's picture

while I haven't read the book, I have seen her interviewed recently and her story gave me the same effect as yours Proud Mom...goose bumps. I can't imagine the stress that comes with your situation. The one thing I did hear her say though was that while the road to diagnosis, and proper medicines can be terrible, she waited for the day because she knew that somewhere inside her sons little body was the real him waiting to break out and be free. I think they have found that spot, and you are strong enough to travel this road too. I can't offer any advice more than keep up the great work of being a great mom, and one day Bryce will be free.

Colorado Girl's picture

but I read an article in People Magazine that was kind of a recap. I know that she executed EVERY avenue to figure out what worked for her son, including a "controversial" diet that removed all wheat from his diet. I alos think it would be worth checking out.

My BS11 was really behind as well when he was younger, he had an extremely high IQ but diagnosed with a learning disability and ADD. He actually BARELY qualified for SPED in first grade (had a wonderful SPED teacher that pushed his qualification thru). Maybe talk to the SPED teachers at his school and see if maybe he could get some "extra" attention since he doesn't quite qualify but is really close. If he's right on the line, I would think they would be understanding. I'm so sorry for your struggles. Keep the faith though, when my son finally figured it all out, and God knows it wasn't overnight BTW, all the struggle and heartache was worth it. Good luck, proud mom!

Imustbcrazy's picture

That I was as knowledgable as the lovely ladies above, but I am just not very well versed in all of this. All I can offer is prayers. And CYBER {{{{HUGS}}}}.

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