Infantreflux.org | another update

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January 12, 2009 at 12:07 pm #60260

Anonymous
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Hi everone!!

Just another little update on one of my boys, this time Kade.

We took him to his well check the other day and our pedi, as thorough as she is noticed a lot of the things I’ve been noticing for a long time. I guess when you deal with these things as a mother, you just can’t shake that feeling that something isn’t right and you are searching for answers and just waiting for the right diagnosis…that is the only way I can describe life with my boy since he was 2.5 yrs old.

Some of the things he is doing that are much more blatantly obvious now that he is 4 is having trouble socializing with kids his own age. He does fine with babies or toddler landen’s age and adults, but when he is around a child his age it is awkward. He doesn’t know how to communicate so he will just get in their face and laugh or stick his tongue out and annoy them. It’s really heartbreaking b/c I know he will have trouble in school at this point unless he gets help socializing. He is still having trouble eating (really bad ocd behavior with food, selectivity, etc). What I thought was just an aversion that was stemming from reflux may or may not be, it could be related to something else. Also, he is constantly making repetitve noises. He is a car. A garage door. A song he heard on tv. He memorizes entire movies. He is a 4 year old artist! I am not joking you that he has a savant ability to draw!!!!

Our pedi thinks he may have Aspergers. We will be taking him back for a follow up with the dev. pedi in February to see what they think, but like I said, it’s far more obvious this year, than last and I think we’ve found our answer. I was not at all upset to hear any of this in fact relieved to hear it. I think when you go through something like this for so long, you get to the point that when you get to the bottom of it you are so happy to know what it is and feel validated when you hear what you though it might have been all along. Besides, Kaden is still the same little boy we’ve always known, he is AMAZING! Most people don’t know right away upon meeting him there is anything different.

Sheri or Leo, if you are reading this, we will probably be starting the GFCF diet, but only if I get a definitive diagnosis of Aspergers in Feb. Until then, I am going to let him go nuts spending his McD’s dollars and take him on a few last trips to some of his favorite gluten places to eat. LOL I am not even sure if going GFCF will make a difference for him, but our pedi said some kids have good outcome with the diet.

that’s about all I have for now. Just happy to think I might finally have answers.

January 12, 2009 at 12:20 pm #60261

Anonymous
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Hang tough Jill! you are an AMAZING mother and Kade and Landen are SO lucky to have someone as great as you! It is very validating to have an answer!!!! and they are sitll the same little boys with lable or not.

January 12, 2009 at 2:28 pm #60263

Anonymous
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oh Jill … I can only imagine how “relieved” you feel now that you know what it really going on. Good Luck with the dev ped appointment.. I can’t wait for an update.

January 12, 2009 at 9:43 pm #60278

Anonymous
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Oh Jill,

i don’t know what to say. I am “glad” you are getting a diagnosis; at least it helps him get the “right” treament as soon as possible.

If you have any questions about the GFCF diet, just ask away. I’ll try to help.

January 13, 2009 at 3:46 pm #60294

Anonymous
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Jill,

It is amazing what a mother is capable of doing when it comes to their kids! Nothing stands in the way of trying to find help when you know inside of you there is something not right. My little one Taylor was diagnosed with mild to moderate Autism Sept. 18th 2008, a date I have not quite forgotten yet. There has been so many improvements from that date to today! I hope you find answers to help your little boy…What I have learned is Mommy Instincts are always right, no matter what degree that specialist has, 1 hours with a child is much different than a lifetime. You are the best judge of what is going to be right for you child. In regards to teh GFCF diet, Taylor had a lot of GI issues so we tried gluten free prior to her offical diagnosis and we saw improvements within 3 days then eventually we went casein free as well. You are an amazing Mom!

January 13, 2009 at 3:57 pm #60297

Anonymous
Inactive

Jill,

Hang in there… you are such an amazing woman & mom for all you are doing for both your boys.

As others have said (& you) – a label doesn’t change your little guy – it just helps you & others find better/other ways to help HIM. (if that makes sense).

Keep us updated w/ the dev ped appt & hope K enjoys all his gluten food stops 🙂

January 13, 2009 at 8:39 pm #60305

hellbennt
Keymaster

way to go Jill!!!

have you posted any artwork anywhere, you’ve got me curious!

please keep us updated; we’re all here to cheer you and your boys on!!!

~laura

January 15, 2009 at 10:04 am #60334

Anonymous
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Jill, I understand what you mean about knowing for a while that something is wrong. Sometimes having an answer actually helps, even mentally I’ve found. Where we live there are so many resources, financial and therapeutic, that you can get with an Asperger’s or Autism diagnosis. I also believe that the label doesn’t define our children, it just gives further insight into how to get them what they need. They already are who they are. Hopefully getting the right help for Kaeden will help him to reach his full potential. You are a great mom. Hang in there.

January 15, 2009 at 9:17 pm #60356

Anonymous
Inactive

Oh Jill!!! I already know that Kade is an amazing little man! Hopefully this will only help him to further reach his potential! HUGS!!!

(I’m with Laura too…I’d love to see his artwork!!)

January 16, 2009 at 12:01 pm #60367

Anonymous
Inactive

Hello Jill

I just wanted to offer you a HUGE .

Take care

January 17, 2009 at 7:52 pm #60405

Anonymous
Inactive

jill, i thought something wasn’t right with my son from the time he was a baby, but i was going through a nervous breakdown at the time and could barely deal with just living from one day to the next.

i had worked in special ed and had been to a seminar on autism, so i knew some of his behaviors looked like autism—then i had several people say how much he reminded them of so-and-so’s child who had just been diagnosed with autism—-and they were all referring to different people’s children, not the same child.

ian attended a developemental preschool for 2 years, and then my mom offered to pay for a private preschool if we would keep him out of school for one more year. i also did some “programming” with him. we put him through crawling motions and did exercises and something with a flashlight (been too long to remember everything).

he went to kindergarten and did fine. he always read well, but after 2nd grade he struggled in math and still does. any other class he didn’t do well in was because he chose to not do well. he is also an excellent artist.

he obviously was not autistic, but i sometimes still wonder if he could have asperger’s.

January 19, 2009 at 12:26 pm #60432

Anonymous
Inactive

Thanks to everyone for your kind words & support. 🙂 I will def come back with the “final update” re: the diagnosis when we get back from his follow up appt on 2/19.

For those that asked about his art I will def take some pics and upload them. I did take one last week that he did really fast (I mean in like 30 secs!) on his magna doodle, and I was showing some ladies in a local moms group I’ve belonged to since I was PG with kaden…it’s pretty neat. It also involves his amazing memory b/c when he showed DH and I he said “it was the little boy at the dr’s office who had the rash on his face…and he was sad” I will try and find it here in a few minutes and show you. He’s better on paper than on his magna doodle though..

Christine, I recall a lot of posts about Ian and remember you never got a diagnosis for him but also know he’s done very well in life. I think these kids do very well and some even have an advantage in life with their special talents and amazing minds. I was watching extreme makeover home edition last night and the boy with aspergers just blew me away with his artistic ability! he was such a great kid.
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