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2 1/2 y.o. diagnosed last week with Autism: I can't sleep, wake up every hour, obsessing about Autism

Posted by on Jul. 5, 2009 at 6:08 AM
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My son who is 2 1/2 was diagnosed last week with high functioning autism. I feel so overwhelming now with questions, I WANT answers, I want more information; so much so that I can't sleep.

It is as though I am obsessed with Autism. I am either reading a book about it, reading about activities to do with my son, looking at websites, researching toys, or just thinking about my son and what his future holds. I am exhausting myself, yet I can't stop!

I run through ideas like, "He must have got this through being vaccinated", or "I must have the gene that I read about", or "Will ever speak in full sentences", or "Will he ever be potty trained?" Ohhh my gosh I am running around in my head quicker than I ever have before...and I am really giving myself a head ache.

I realize that I will not have all of the answers to my questions just yet. I realize that this is a long term process that will unfold in all due time; yet I just can't stop thinking about it.

I know that I "Should" read a little bit each day to educate myself, but I am reading A LOT. I think I'm obsessing about the fact that I WANT ANSWERS. Answers that I don't know anything about; I want to understand more than anything in the world.

by on Jul. 5, 2009 at 6:08 AM
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dcowen1234
by on Jul. 5, 2009 at 7:39 AM

You are going through what us other Moms have and omg I remember being obsessed and being overwhelmed too. There is a lot of information out there and soooo much to learn. But remember to take things day by day or moment by moment if you have to. There is so much to deal with and take in that it makes your head spin. Take a lot of deep breaths and remember to take care of yourself too.

hugs

mustbeGRACE
by Member on Jul. 5, 2009 at 9:17 AM


      Hello,


Maybe this will help.


Google"developmental milestones".

Find milestones for a 2 1/2  yr. old.

Be really honest with yourself  and compare your kids development with the milestones.

Should be a list of some size, short, long,  look at a few.

Google autism symptoms.

Look up Aspergers, though you wouln't be able to tell if it's Asperger,  an especially high functioning autism, probably for a year or two, maybe.

Be honest and compare your kids symptoms.

With high fxning, stims tend to go away in early elementary.

You can't understand completely now because he's so little.

Each child with autism is different.

Pick out somethings from the dev. milestones list that are stand-out problems, try to get their "formal, medical names"  to be able to google the words or phrases, and work on them. Do the same with the symptoms list.

One thing that is so interesting to me is that some autistic kids have minds that fxn at age level,  yet they have little to no speech.

Wild.

These are ways to get a handle on the situation.

My kid, 9,  has Aspergers and I keep bragging that he won 1st place in his tennis tournament last week out of 30  typically developing,  neurotypical (NT) kids, gotta be politically correct here.

He now says that he wants to play baseball, and I think he will!

He is in a mainstreamed classroom, makes straight A s, and has never had  extra help in class.

He does have some personality issues,  but don't we all , but he is smart and we'll work on them very hard. He respects authority quite a bit and always minds his teachers. I'm the one he gives a hard time, like a teenager. Very  irritating sometimes.

This is a process and at the other end, could be a couple of years, you will feel better, because it DOES get better.  It's going to be a lot of work for you, but you get into a routine, watching your kid do things that he's not supposed to be able to do!

You have got to relax. You have got to calm down.

I know how you feel, we all do.

This is going to be life a little different than expected , not NO LIFE!

There  is still A LIFE TO LIVE  and YOU  have to make one for your kid.

YOU are going to make it good or  just an existence.

A tall order.

Read this, very important and, and come hope with us:






mustbeGRACE
by Member on Jul. 5, 2009 at 9:23 AM


                                         

Experimental drugs that are said to “correct” symptoms of Fragile X, Rett Syndrome, and tuberous sclerosis complex are now in early-stage human trials, the MIT Technology Review reports. The drugs reduce the activity of a receptor called metabotropic glutamate receptor 5, or mGluR5, and have previously been tested on mice, as reported in the June 25-29 issue of the Proceedings of the National Academy of Science. From the MIT Technology Review:

People with fragile X, the most common form of heritable mental retardation and a leading cause of autism, have a mutation in the FMRP gene, which normally inhibits protein synthesis stimulated by a receptor called metabotropic glutamate receptor 5, or mGluR5.

Last year, [lead researcher and MIT neuroscientist Mark Bear] and Gul Dolen, also at MIT, announced that they could correct abnormal brain development and faulty memory and reduce seizures in affected mice by decreasing mGluR5 activity by 50 percent. “The idea that you could reintroduce function is a sea-change event,” said Emanuel DiCicco-Bloom, a neuroscientist and physician at the University of Medicine and Dentistry of New Jersey, at the neuroscience conference.

Bear has founded a company, Seaside Therapeutics, at which human trials of one of the drugs are now underway. He also says:

“We may have our finger on a biochemical pathway that is applicable more generally in autism.”

More about the STX107, the “lead drug canditate, can be found at the Seaside Therapeutics website.

mustbeGRACE
by Member on Jul. 5, 2009 at 9:28 AM


            

UCLA researchers have discovered that an FDA-approved drug reverses the brain dysfunction caused by tuberous sclerosis complex (TSC); because half of TSC patients also suffer from autism, the researchers are hopeful the treatment can address associated learning disorders. The journal Nature Medicine published the findings in its June 22 online edition.

The scientists used the drug rapamycin on mice models of TSC; rapamycin is well-known for targeting an enzyme involved in creating proteins needed for memory. The same enzyme is also regulated by TSC proteins.

“This is the first study to demonstrate that the drug rapamycin can repair learning deficits related to a genetic mutation that causes autism in humans. The same mutation in animals produces learning disorders, which we were able to eliminate in adult mice,” said lead investigator Alcino Silva, professor of neurobiology and psychiatry at the David Geffen School of Medicine at UCLA. “Our work and other recent studies suggest that some forms of mental retardation can be reversed, even in the adult brain.”

The researchers studied mice bred with tuberous sclerosis complex and confirmed that the animals suffered from the same severe learning disabilities as human patients. The learning problems were tied to biochemical changes and abnormal functioning of the hippocampus, a brain structure that plays a vital role in memory.

“After only three days of treatment, the TSC mice learned as quickly as the healthy mice,” said first author Dan Ehninger, postgraduate researcher in neurobiology. “The rapamycin corrected the biochemistry, reversed the learning deficits and restored normal hippocampal function, allowing the mice’s brains to store memories properly.”

Source: rapamycin


All kinds of great things on the horizon!

MamaRita
by Group Owner on Jul. 5, 2009 at 12:26 PM

clapping

You Mom's are amazing! What a Great Group we have for information & support, I am honored to be a part of it. Thanks for all you do for all of our precious children.

Rita, Group Owner




Thanks Nat - bamsmom2001

MamaRita
by Group Owner on Jul. 5, 2009 at 12:35 PM

Maybe this will help.

  • Google"developmental milestones".

  • I just went to the chart & Lane is around the 4/yr old level at age 10. WOW! Been doing this research for 8/yrs & still learn something new everyday. Thanks for the info. Rita

    turtlechic
    by Member on Jul. 5, 2009 at 12:41 PM

    it is so hard because no matter how hard you look or read, there are no answers. I was the same way in April when Dylan was diagnosed, I became obsessed with it. Try to take a step back and realize it is out of our control. All you can do is work your best to do theraputic things with him to help him improve. All books say the same thing ....I bought Understanding Autism for Dummies.   Read one or two books, and then try to do something for yourself and son instead. Go to the park, have a glass of wine, read a book that has nothing to do with autism. I know it is hard. It does get better. Please try to take a deep breathe and do something non-autism related! a big hug to you.

    mum2one
    by Member on Jul. 5, 2009 at 12:58 PM

    This is completely normal, it's pertaining to your child so you want to know everything. I was on the internet all hours of the night when I found out, reading up on tons of theories and reasons, joining groups, trying to find answers. There are some answers I found, a lot I haven't and the same will happen for you, but most importantly just keep looking until you find the right course of action that works for your son. My son was diagnosed at 2 1/2 also and was put into early intervention through the regional center. My prayers go out to you that you'll find what works best for your family.

    Snu
    by Member on Jul. 6, 2009 at 11:34 AM

    Boy, do I remember that phase.  I think it's perfectly normal for you  to be obsessed with autism right now-- you've just gotten the dx!  Heck, you'd be a pretty clueless/neglectful parent if you were NOT reading a ton of stuff right now.

    Personally, I found that reading everything I could made me feel more in control and empowered.  You can spend lots of time, $$ and effort pursuing worthless therapies out there if you do NOT study carefully all the "cures" & therapies that are out there for autism.

    It's so funny you posted this.. just this morning, I was thinking about how I haven't read anything about autism in a while, and it feels so good.. my daughter, w/ PDD-NOS, is 11 now, in the right school, on the right track [finally], with the right therapies,  and I am experiencing a peace I have not known in a long time.

    I know it is hard to believe this right now, but this state of panic and anxiety will pass.  As you get the right therapies, etc., in place, you will feel a sense of relief that you are doing all you can to help your son fulfill his potential.

    Katie520327
    by Member on Jul. 6, 2009 at 4:06 PM

    You are not alone.  My son was also diagnosed at 2 and a half.  I spent countless hours doing research and a lot of crying.  I still do both from time to time.  When we got out diagnosis, I took almost a week off of work to digest the information.  It is hard to hear even when you already know... and you are doing exactly what any good Mother would do... you are doing the best thing for your son by educating yourself.  But do yourself a favor and take a break from it.  Take him to the park for the afternoon and focus on him as a child and not a child with autism.  I am certainly not criticizing in anyway, only saying I know exactly the place you are coming from and it is you have to remember that it doesn't change anything about who he is or how much you love him.

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