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When good news hurts?

NHmommaNHmomma
in Special Needs
Has this ever happened to any of you? You get ?good news? and it feels more like reminder of how bad things really are? I know that I should be falling down grateful that A.?s infant spasms seem to have stopped with the help of the ACTH. What I thought were still the spasms are apparently a different type of seizure (who knew spasms are worse than siezures?!) So while I know I should be relieved, the whole thing seems more like semantics than I thought it would. I thought bringing the IS under control would sort of temporarily solve our issues. For the crazy money that this cure costs, I was thinking if it worked it could buy us a small stretch of smooth sailing. Not so I guess. At least weaning off of this set of drugs will hopefully make DD less irritable...
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Re: When good news hurts?

  • beachbride5beachbride5 member
    i hate being reminded by the ped neuro that ds's childhood epilepsy might be just in the "honeymoon" phase since he is responding to meds. lady, he is freaking seizure free. does she not think that thought penetrates my brain daily?! like, whenever the poor boy stares at something?!
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  • suzymariesuzymarie

    oh, hugs.... it is rough sometimes isn't it.

     

    I hate it when the geneticist brings up things that the regular pedi says not to worry about.  It is just depressing that in a normal kid (pedis perspective) this would be no big deal but for DS (geneticist perspective) we need to be worried.

     

    bah!

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  • AB&TBAB&TB
    I totally understand.  ACTH is a biotch, and should work for everyone and every type of seizure.  At least it got the IS under control, which are much worse than other seizures, try to remember that.  Epilepsy is a long long road.  Hugs!
    imageimageimageimageimage 9/07 m/c baby boy @ 18wks, 4/09 m/c @ 4.5wks
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  • EnglishMajor03EnglishMajor03 member

    Hey NH

    I wanted to mention, as you spoke a bit about the cost issues, that you can apply for Katie Beckett Medicaid in NH and your DS will probably be approved as long as it's a chronic condition.  Katie Beckett (also known as Healthy Kids Gold) means  you will have no copays at any doctors offices (including out of state docs) and you don't have to pay for prescriptions.  They also cover costs associated with Early Intervention, which has been helpful for us.

    ave you  heard of the organization Partners in Health?  Please let me know if you'd like more information.  PiH can help with the application process and providing some financial relief for some things in the meantime.  

    image
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  • EnglishMajor03EnglishMajor03 member
    imageEnglishMajor03:

    Hey NH

    I wanted to mention, as you spoke a bit about the cost issues, that you can apply for Katie Beckett Medicaid in NH and your DS will probably be approved as long as it's a chronic condition.  Katie Beckett (also known as Healthy Kids Gold) means  you will have no copays at any doctors offices (including out of state docs) and you don't have to pay for prescriptions.  They also cover costs associated with Early Intervention, which has been helpful for us.

    ave you  heard of the organization Partners in Health?  Please let me know if you'd like more information.  PiH can help with the application process and providing some financial relief for some things in the meantime.  

    Edit: DD not DS...sorry!

    image
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