Alex Update

[Anonymous]

Hi all…especially Lori,

Just wanted to let you know that Alexander has been formally diagnosed with Autistic Spectrum Disorder. I believe we had discussed this in our last posts…

We had finally come to accept this so it’s not such a shock. The specialist believes that his feeding aversion has far more to do with ASD than with GERD. I would have to agree. I’m only telling you this because getting a diagnosis as early as possible gives your child the best chance. I guess I sat around in denial for a few months before I accepted it. I even did the MCHAT on him when he was 18 months and it came up that I needed to have an assessment on him for Autism but I denied to myself thinking that the reflux had caused him to be slightly anxious, etc.

He is very intelligent and high functioning so we are hopeful for him. The very first thing that was recommended to us was to put him on Neocate so that he isn’t trying to cope with digesting long-chain proteins. This is something that often exacerbates the symptoms of ASD. We have seen a dramatic change in him since making the switch. I’m just letting you know in case it may help someone else.

He has started eating meals!!! He actually will eat a couple of slices of ham and 6 or 7 big strawberries for dinner! Yay! Changing his milk made all the difference for him. He’s still drinking a lot of milk but he’s gradually loosing the desire for it.

Hope you all are well.

Darla

[Anonymous]

Darla,

Thank you for the update. I’m sorry to hear about the diagnosis, but firmly believe that most of these diagnoses are just labels, not destinies.

It’s interesting, because I asked about having Hailey assessed, and three different people here each told me that a diagnosis before age three would be inaccurate as they can’t truly tease out sensory issues, stranger anxiety, etc. that are also present in babies. Did you hear that as well? Do you know what assessment they used?

Interesting about the neocate. Great that he’s started eating!!! I’m surprised that you were able to get him to drink that stuff at this point (yuck), and maybe that’s why he’s losing his taste for milk, as you said. LOL.

I’m so happy to hear that he’s eating, and hope that he continues to make gains and improvements. Please keep in touch, if you ever get a chance. I will be thinking of you guys.

[Anonymous]

Hi Darla – I’m also sorry to hear about the diagnosis but SO glad that
the Neocate is helping and that he’s eating. With a fantastic mom like
you I bet he’ll continue to make great improvement!

[Anonymous]

Lori,

Early diagnosis is somewhat controversial, after all, psychological diagnosis are subjective, not concrete. We are fortunate to live very near to some of the top pediatric diagnosticians in the UK. The one that Alex saw specialises in early/complex diagnosis and she works ONLY as a pediatric neurodevelopmental diagnostician. His pediatrician and other consultants wouldn’t diagnose a two year old for anything, they just don’t have the clinical expertise. I wouldn’t trust their diagnosis anyway!!

I spent a lot of time in denial but now that we understand our son so much better he is coming along leaps and bounds. His eating is improving almost daily.

Yes, I agree with you, the diagnosis is only a label and not a destiny. Having the diagnosis has helped us to help our son mitigate his environment in a much better way, he is much happier now that *we* understand him.

All the best to you, Lori.

Thanks so much Karen for the kind words!

Darla

[Anonymous]

I’m so glad to hear that, Darla. Best of luck to you and Alex.

[Anonymous]

Darla

Thanks for the update. I am part of another forum and you woudl really be surprised at how little diagnoses mean for children!! I am glad that you caught it this early and will be praying that your little one does great. You know, i have been doing some research into feeding clinics and there is a study that just came out that was released by Kennedy Krieger (part of John Hopkins) that says that they think they can indeed diagnose it at age 2 (and if you look at research, even earlier on) and that A WHOLE YEAR (ie vs making it at 3) makes a WORLD of a difference… it is on the intro page for Kennedy Krieger, may want to take a look. Let me know if you cannot find it

the other forum is http://www.parent-2-parent.com/forum

there is a section on Asperger and ASD…. some of those children are high functioning and doing really well…. may want to take a look.

BTW – i love london… i lived there for 4 years and DH and i tihnk we want to go back eventually…. where are you??

[Author]

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