Do it for Dahkota

this all started five years ago when Dahkota came down stairs and said she was sick Dec 7th 2012. I tell you we were not ready for this one. We went from Dr to Dr and no one could diagnosis her! Finally after visiting the hospital for a year she was diagnosed with visceral hyperalgisa and visceral sensitivity and CRPS. But this was only some of it. Finally after being referred to a Gastroentrologist he said i cant help you but i know who can we were ecstatic. We were sent to California where the Dr is the head director of the pediatric pain  hospital she diagnosed her with Mast Cell Activation Syndrome which very few drs know anything about.So we were sent back home to follow up with these Drs. 1st a allergist ,neurologist,dermatologist,cardiologist,rheumatologist,and endocronologist,and hemotologist.This where the diagnosis begin: Mast Cell Activation Syndrome,P.O.T.S,Fibromyalgia,CRPS,and severe gasroparesis.So with these diagnosis comes lots and lots of medication on a daily basis.Dahkota ended up getting a NJ tube that went through her nose which after 38 time of drs reinserting this tube through her nose we finally recieved a GJ tube which is permanentlly inserted through her stomach where she is on a continous flow of nutrition 24/7. Since she has not had any food go through her mouth since Sept5th of 2016 dahkota cannot get enough fluid so they inserted a port in her chest where she get 2 liters of fluid daily. Not the life for a 15 year old, she hasnt been in a public school in 3 years. Along with this come a basket full of medication which is benadryl,pantoprazole ,cromolyn ,gabapentin,ketotifen ,ratanidine,periactin,regland,amitriptyline,quercertin!! We now are waiting for Janurary to have this Gastric pacer put in Dahkotas stomach which is only done in five states so once again we have to travel to Colorado. Hopefully this will allow Dahkotas stomach to digest food so that she can eat. Once put in we have to stay in Colorado two weeks incase of an adjustment to the pacer.  In August we are forunate enough to get in the the well known Hemotologist Dr Lawerence Afrin in New York which we have waited about two years for to finally get the whole scoop on this Mast Cell Activation Syndrome. This is a very rare diease also drs dont know how to diagnosis. Any smell,or being scared,stress any histamines in food,medications anything can set off a release and dahkota is broke out with hives all over her  body which can put her in anaphalytic shock. During granulation period of this her hips become very bruised and full of hives. This is an on going battle with traveling from state to state, i hope our story will help other people find the encouragement to keep traveling to drs to get the answers they need and to keep Dahkota going in her battle to survive.
  • Anonymous 
    • $200 
    • 25 mos
  • Tammy Mangun 
    • $25 
    • 25 mos
  • Jerilyn Jackson 
    • $25 
    • 26 mos
  • Scott Jackson 
    • $25 
    • 26 mos
  • Anonymous 
    • $50 
    • 26 mos
See all

Organizer

Traci Jo Pinkerton 
Organizer
Maricopa, AZ
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