Wednesday, June 20, 2012

Newly Diagnosed: What to do Now

http://instantautotrade.com/wp-content/uploads/2012/04/Check-List1.jpg
I keep telling my family "I wish there was a document that was handed to us when Noah was first diagnosed with Agenesis of the Corpus Callosum that listed all of the stuff we (should know or question or look for) then went into detail about other closely related diagnosis or possibilities."

Well my friends I have decided to go ahead and make one big fat list of links that will guide you to everything I have found regarding Noah's diagnosis's. If I were to create a document myself it would be way too many pages for people to want to read so I am just listing links so you can pick and chose what you would like to read.  I have listed them by diagnosis so you can get where you want to get faster :)

****keeping in mind I still am just learning about stuff myself and may not have everything listed that I should. But I would love to add to this list so please let me know what I am missing and can learn for myself too).

What to do right now:
  1.  For ANY disability your child may have please look up your local "Early Intervention Program (EIP)" and if you qualify get started with this program as soon as possible. This program only goes up until age three and then there are other programs for older children.(this is a federal program (in the states) and does not work off of insurance but rather your family income amount to see how much you have to pay each month).
  2. If you are fortunate to have insurance or unfortunate to have to deal with insurance...Contact your provider and see what your plan covers, what facilities they cover, and what doctors they cover.  Doctors will not know or care what your plan is so many of them refer you to places or specialists that may not be covered by your insurance so be on top of this at all times. You may also want to find out what your out of pocket costs are with your plan and if co-payments count towards this out of pocket amount.  Every insurance provider is different than the others so every plan is different.  Get to know the ins and outs of your specific plan. 
  3. Find a FANTASTIC pediatrician who has experience working with special needs children.  They will be your best resource and support in taking care of your child and getting you in to see specialists. 
  4. Start to make appointments for your child to see "Specialists" as soon as possible because the waiting list for such doctors can be months away. 
    • Neurologists (seizure disorders, MRI's, EEG's, ect)
    • Endocrinologists (diabetes, hormone's, adrenal gland, monitoring growth ect)
    • Geneticists (chromosome or hereditary abnormalities, ect)
    • Special Needs Clinics (Utah has one up at PCMC but not sure about other states)
    • Ophthalmologists (eye to brain connections)
    • Optometrists (vision and degree of eye sight)
    • Therapy Facilities (Physical, Speech, Occupational, Vision)
    • ***most facilities have a "quick list" you can get on once your child is starting to show  signs of certain disorders (seizures symptoms, abrupt weight loss/gain, dehydration, choking, ect).  Have your pediatrician call the specialist themselves so you can be seen much sooner.  
Caregiving 101, by: Kris Hansen
 I found this resource on the internet at www.caregiving101.org with some ideas on how to prevent “Caregiving Burnout”.
  1. Choose to take charge of your life, and don’t let your loved one’s illness or disability always take center stage.
  2. Remember to be good to yourself.  Love, honor and value yourself.  You’re doing a very hard job, and you deserve some quality time, just for you.
  3. Watch out for signs of depression, and don’t delay in getting professional help when you need it.
  4. When people offer to help, accept the offer and suggest specific things that they can do.
  5. Educate yourself about your loved one’s condition.  Information is empowering.
  6. There’s a difference between caring and doing.  Be open to technologies and ideas that promote your loved one’s independence.
  7. Trust your instincts.  Most of the time they’ll lead you in the right direction.
  8. Grieve for your losses, and then allow yourself to dream new dreams.
  9. Stand up for your rights as a caregiver and a citizen.
  10. Seek support from other caregivers.  There is great strength in knowing you are not alone.


Agenesis of the Corpus Callosum - Description


Septo-Optic Dysplasia Description / Optic Nerve Hypoplasia Description
Epilepsy Description


Infantile Spasms (aka West's Syndrome) Description


  • This a an article we came across that scared us to death but then I found out that the data is really old and according to our neurologist is not longer "catastrophic".I only list it because you will come across this in your search and I want you to know that Infantile Spasm treatments have changed dramatically and my neurologist has not had a single child die from it.  Here
Sandifer's Syndrome (aka Acid Reflux Disease) Description


Dysphagia (feeding tube stuff) Description

Hypotonia Description


 


Other links I found that I found helpful (even just for DIY ideas)

No comments:

Post a Comment