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Red Tape

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Submit your question below to CUT THE RED TAPE! and your question with an answer might appear here. New Q&A's are posted each week.

My child has Autism as well as Mito.  Between the two conditions, we are spending several hundred dollars on supplements and the Mito Cocktail.  Are there any organizations that can help pay for the medication that our Mito Doc has recommended but our insurance doesn't cover?

 My oldest has been seeing a local Nurse Practitioner in a very large pediatric practice for years.   Everything's been fine as far as the care he's received, but he's very healthy and rarely needs to be seen for a sick visit, and when he is sick it's usually something minor so I don't mind him being seen by any of the doctors or NP's in the practice.  My second child has been sick since birth, is in the hospital frequently, and has just been diagnosed with Mito.  I like our children's NP, but we need to have sick visits frequently and he sees a different doctor each time.  In addition, most of his specialists are in Boston, about 100 miles away, and so far there have been several minor miscommunications and even a few major problems that have led to delays in treating health problems.  I feel that it's time for us to move on to a pediatrician who knows about Mito, is comfortable communicating with all his specialists, and can see him consistently for both sick and well visits.  Where do we start?

BusyMom in Western Mass

Dear Red Tape,

My son is 8 and he has life-threatening food allergies and a clinical diagnosis of Mito.  He needs to drink Neocate Jr. for nutrition.  Our private health insurance doesn't cover it, and we make about $50 over the monthly income limit for Medicaid.  Some weeks I have to choose between buying my son's formula and paying a utility bill, or buying healthy food for the rest of the family.  Is there any way that we can get a discount on his formula?  Help! 

Jen in Texas

Planning to keep your cool?

Spring is on our doorstep, and now is the perfect time to start thinking about ways to beat the heat.  Individuals with autonomic dysfunction generally have a difficult time adapting to the change of seasons, and the first warm day of the new year generally causes a disproportionate number of Mito flares, even if the thermometer only reaches 70 degrees.  The solution?  Be prepared!  This column discusses three types of cooling vests, where to purchase them, and possible sources of financial assistance.

My child uses a wheelchair for mobility and we need a ramp for our home.  Are there any guidelines for how to build one ourselves?  Where can we purchase a ready-made ramp?  Is there such a thing as a portable ramp?  Are there any resources for financial assistance?

What's a good response to the statement, "Call me if you need me?"  Despite the fact that family caregivers are drowning in responsibility or are really confused about what the next step ought to be, they often respond "no thanks" when help is offered. (Respite, advocacy, and support)

 

Asking for and accepting help is a complex issue. Obviously you first need to admit that having some help will make a real difference in your loved one's quality of life, and therefore yours as well. Then you need to define what help you need. Which tasks or chores would be the easiest to ask others to do? Which do you really want to do yourself? And which, if any, can you afford to pay others to do? If this just sounds like more work, know that it doesn't have to be an overwhelming task but rather just a way to organize the thoughts and information you already have. Ready to give it a try?

 

 

Our family needs a wheelchair accessible vehicle, but I don't know what type of vehicle is best for us, where to find new or used vehicles, what kind of adaptations are available, and how to pay for everything. Where should I start?

My doctor ordered some equipment for me/ my child, but it will take months to process the paperwork.  In the meantime, is there a way to borrow the equipment that we need?  Are there "loaner" wheelchairs available while ours is being repaired?  What kind of equipment might be available for me/my child to try out before we pay for Durable Medical Equipment?  Where can I donate equipment that we no longer need?

My child has disabilities and medical needs that are related to his Mito.  Can he still go to summer camp?

My daughter, age  7, has Mitochondrial Myopathy, confirmed through DNA studies.  Her disabilities include developmental delays, failure to thrive, exercise intolerance, severe muscle weakness, and generalized fatigue.  Her disabilities are "invisible" and she receives all her medical care on an outpatient basis.  Her  specialist made a comment that if you had a permanent disability you should be eligible for Medicaid that helps pay what your insurance doesn't.  I have looked into social security and medicaid and absolutely everyone says they are income based.  Is there or is there not a program to help disabled kids and hardworking families that don't fall into that poverty level?

Texas Mom.

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