Sammy update

Discussion in 'General Parenting' started by Dara, Jul 31, 2009.

  1. Dara

    Dara New Member

    Hi all. it has been a long while. here is a brief update of sammy. First in june we went to disney world for 6 days with the whole family. To sum up, we were ready to get back on a plane to go home the first night. Sammy was overwhelmed screaming and going crazy the entire time. He did love epcot and is ready to go back..
    After we came back from disney, we had to get our house ready to move. We moved into a one story house close to the same area where we were. Sammy loves the new house and surprisingly transitioned with ease. He is going to a theraputic camp this summer. It works on social skills. They have kids ages 4-13 and they have "normal" kids, kids with anger issues, kids with family issues, kids with autism...pretty much all varieties! He is doing quite well there. At home however, his behavior is a disaster area. We are noticing quite a lot of regression with memory and tantruming.
    We had his neurologist appointment yesterday and a couple weeks before that we had done a complete metabolic work up and genetic testing. The genetic testing results have not come back however the other bloodwork is in and this is what the dr said:
    I dont know if I can explain it right but let me know if any of you have come across this. Sammy produces too many fatty acids and the times when his body goes through prolonged fasting periods ie sleep, his body does not do whatever it is supposed to do with those fatty acids causing problems with sleep and eating as well as many other issues. We are only at the beginning of this process of figuring all of this out but it seems like we are finally on to something with uncovering some answers and possibly finding solutions to help Sammy out. It is not anything that I expected to hear. I really expected the blood work to be normal and to have Sammy be a "mystery" as usual. Thank goodness his neuro is persistant in trying to figure Sammy out! Any input or knowledge that any of you have on this topic is greatly welcomed!
     
  2. susiestar

    susiestar Roll With It

    WOW! It is AWESOME that the neuro is determined to figure out why Sammy acts this way and how to help him! That is HUGE!

    I cannot even begin to contemplate Disney with a 4yo, much less a 4yo difficult child! You earned your armor, that is for sure.

    The camp sounds awesome, but maybe the problems at home stem partially from holding it together at camp.

    Thanks for checking in - I was wondering how you were doing.
     
  3. ML

    ML Guest

    It's good to have you back. I'm so glad to hear you are actually finding some answers. You're right, most of us seem to get the "mystery" explanation for our kids and it's great to hear you're finding clues at this early stage in the game.

    Take care, ML
     
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