Saturday, June 22, 2019

What Now...?

I've been struggling guys.  I'm not sure we have been properly armed.  For my kids' ENTIRE LIVES...we have been seen by Children's Hospital.  Even the kids without Neurofibromatosis.  It was out one-stop-shop.  We felt safe there....and all of our issues for the most part were addressed, in some form.

But now...Bailey is 23, Braden is 21...And basically we are being told 'Good Luck' and pointed to directions that aren't as helpful.

I, myself don't have an 'NF DR."  No one sees me specifically for the symptoms of Neurofibromatosis....Same goes for my adult children.

I wish there was a proper transition -

What are we supposed to do....?

Lately, Bailey has been complaining of headaches....Like call-in-sick-to-work headaches.  And I struggle with how serious to take it.  On one hand, it could be something serious...Like her tumors are starting to grow...or a new tumor....or any number of things....But on the other hand...she has been stable for so long...maybe it's nothing...!? 

Parents of adults with medical needs....How do you do it..?  How serious do you take things...?  How serious do doctors take things..?

I, like you am just trying to figure things out as I go...And HOPEFULLY get some answers along the way.

Kinda Frustrated here...

LMK If what you guys do for your adult children...I'd love to hear some ideas!


  1. First of all, YOU MUST GET YOUR KIDS ON MEDICAID AND SSI NOW. Go to a for profit lawyer if you need to they do not charge unless they win. Second go to disability rights in whatever state you live in and the state developmental disbility board once again sue if denied. There are doctors in the childrens hospital or a regular hospital that see NF petients that are adults.

  2. There are clinical trials for a drug to shrink NF related tumors called selumtinib and binimetinib. You have to look this up on the website and your children may have to travel on their own to the site of the clinical trials. I am glad the NF societies finally funded a sucessfull drug after doing very little for decades.

  3. We go to the Judson hawk clinic at choa in Atlanta. My son is 16.. he has had 5 surgeries to debulk a plexiform on his spine. After hearing nothing could be done, I researched what are international doctors doing about nf. Bee propolis, tumeric, magnesium, vitamin D every day. He has grown over a foot in those 5 years... Everything is stable.. No growth. Dr Wolff, the neurologist, put him on 500 mg of magnesium for migraines. He rarely has them now.