Samantha's spine issues continue to be a main source of her pain. We are in constant touch with her mitochondrial doctor in Jacksonville. We will be travelling soon again, as her mito dr tries to coincide his appt with Samantha and an appt with spine specialists who are friends/colleagues of his. He has requested overseeing all of her care due to a mishap with another dr prescribing a wrong medicine which could prove to be very detrimental to her already fragile health. This will mean more travelling. If she ends up needing spine surgery, it will be done six hours from home, where we will be required to stay for over a week at least. Between travel expenses, meds not covered by insurance and the special diet, costs are mounting again. Praying we get a break soon!
We went back to the spine specialists up in St. Petersburg yesterday. Horrible appointment. The back brace Samantha has been wearing for 3 months was the wrong one. I am so angry. So now she has to be fitted for the correct brace next week and we seem to be back at square one - waiting to see if the CORRECT back brace will help. Then we go back up to St. Pete in 3 months. Her mito dr up in Jacksonville also wants to talk to his spine doctor colleagues as well to get their input. The spine doctors wanted us to go back up there this Thursday. I told them its expensive to keep travelling and I simply couldn't bring her right back. Samantha is in so much pain right now and cried so hard at this appointment. Its like being on a hamster wheel. We keep moving and moving with doctor appts only to get no where! So frustrating to watch my child suffer and not much can be done. They keep trying to do anything right now to avoid doing surgery. Yes, surgery scares me, but if the end result IS surgery, cut through the chase and help my child now!
As one of the doctors watched her cry her eyes out in so much pain, he decided to prescribe strong pain patches for her back. I got the dreaded call that her insurance has denied this medicine. I will do anything to make sure her pain is lessened and will be trying to pay for these out of pocket. I need to. I cant watch her in pain any longer.
These are the things we are constantly up against with medical bills, etc. Its never ending. I wish I could wave a magic wand and take it all from her. In the mean time, we will simply keep plugging along and I will do the best that I can for her.
Again, thank you so much for all who have given to help out. For those who simply cannot - we would appreciate prayers for strength and healing.
Well, its been three months since we last went to the spine doctors up in St. Petersburg. We go back this Monday the 28th and we shall see what happens. They will take several standing xrays and will see if anything has improved with Samantha's spine fractures since wearing the new brace. I have a feeling things really havent changed or have probably gotten worse. Her pain seems to be worse and worse with each passing day. It breaks my heart to see someone so young suffer so much :(
I will update when we return. Fingers crossed they come up with a plan to help her pain. Enough is enough already.
Thank you to all who have been there and helped us on our journey! Please, if you can, share her link. It truly does help with expenses!
I haven't updated this in so long, and unfortunately the time has come to try to do something. Samantha's medical issues are mounting. We find ourselves having to travel to Jacksonville and St. Petersburg frequently.
We finally found a great mito doctor in Jacksonville and he has been wonderful to Samantha! Taking the drive six hours north is costly. He has also changed and increased meds for her mito cocktail which insurance does not pay for.
We travel two hours north for her spine doctors. Samantha is suffering from severe spine issues which include two fractures in her back, disc herniations and bulges and degenerative disc disease - just to name a few. She is currently wearing a special back brace in hopes that this would help. So far it has not and she continues to suffer immense pain.
Im trying to work on a local fundraiser soon to help offset some of these costs.
Its with a very heavy heart that I even have to do this. We've always done fundraisers to help organizations such as the Cured Foundation and the MDA (Muscular Dystrophy Association). Both organizations help Samantha's diseases and have been wonderful. We love helping other people, but when it comes to helping ourselves, it proves very difficult.
Perhaps it is my pride. I don't know. I hate having to do a personal fundraiser to help with something I should be able to do as a mom.
Many of you know that Samantha suffers from Eosinophilic Esophagitis and Mitochondrial Disease. Some may not know what those diseases are. I have included two links at the end of videos we have made to help inform.
In addition to the EoE and Mito, Samantha has been diagnosed with spondylolysis and spondylolythesis (fractures in her spine and slippage), Scheuermann's Disease (which is an upper curve of the spine), Carnitine deficiency, Ehlers Danlos Syndrome (which is a connective tissue hypermobility disorder) and a host of other issues.
This has taken a huge toll emotionally and physically on her, yet through it all she remains strong and postive and smiles her beautiful smile.
If you cant help, we truly understand. Perhaps you can simply share her link or say a prayer. All are truly appreciated.
Well, the holidays have come and gone. On to a new year. I hope it finds us all in a much better place than 2012 proved to be. So much has happened in the past year. While we've been able to add in a few foods to Samantha's diet, we opened up another chapter of heartache as we venture down the road to uncertainty with the Mitochondrial issues. When we saw the mito/genetic doctor in Atlanta, she put Samantha on what is called the "mito cocktail". This is a variety of things compounded into one medicine. The dr gave us a script for 2 months, while we were waiting the outcome of testing. The dr recently called in a new script for one year. This broke my heart. It indicates that she still wants Samantha on the cocktail. We received bad news from her buccal swab testing and it indicates a mitochondrial problem. We have completed all labs and results are in. We are currently waiting to talk with the mito doctor to see where we go from here. It's so hard dealing with a specialist out of state. Insurance refuses to help out financially because it is an out-of-state doctor, even though I have explained to them that there is no other doctor like this in Florida. We still have the site up and running for anyone wishing to donate to help Samantha. We truly appreciate everyone who has been able to help at this point. More out of pocket expenses are coming for doctor appointments, meds, etc. We seem to have a handle on Samantha's EoE at this point. The G tube was such a blessing, allowing us to start with a "clean slate" and trial food slowly one at a time. We're still not where we want to be and EoE has reared it's ugly head last night. But overall, I think this Mito stuff is going to be much more of a challenge. We are trying to take things one day at a time. That's all we can do.
I haven't updated in a bit because life has been crazy. We took the tiring trip to Atlanta to see the specialist and Samantha has been clinically diagnosed with mitochondrial disease. The trip took its toll on Samantha and once we got home, she became really sick. We have already done some testing that takes approx a month for results. Other tests will be coming up soon. I can't thank everyone enough for their donations. Please share Samantha's link if you can. Your help, donations and prayers mean more than we can say.
Yay for Friday! The weekend is finally here! It's been a long week. Can't believe we go to Atlanta Monday! Praying all works out for the best. Thank you everyone who has donated so far. We aren't close to what it's going to cost but we'll get there one way or another. Keeping the faith.
I've had many ask why we are making this trip to Atlanta. It's such a hard story to explain. But the short version is that Samantha has become sicker and sicker and we have no idea why. She is always tired, has developed very low blood pressure, low blood sugar, sleeps a LOT, has memory issues and a ton of other things not associated with her EoE. There is a genetic mito specialist in Atlanta - one of only a few in the country that is familiar with mitochondrial diseases. Now what is mito you may ask? I have copied a short version from www.mitoaction.org but their website has so much more info.
What is Mitochondrial Disease?
Mitochondrial disease is a chronic, genetic disorder that occurs when the mitochondria of the cell fails to produce enough energy for cell or organ function.
The incidence about 1:3000-4000 individuals in the US. This is similar to the incidence of cystic fibrosis of caucasian births in the U.S.
There are many forms of mitochondrial disease.
Mitochondrial disease is inherited in a number of different ways
Mitochondrial disease presents very differently from individual to individual.
There may be one individual in a family or many individuals affected over a number of generations.
Affects multiple organs, affects multiple family members, affects multiple generations.
Lack of awareness and understanding of the disease
Families are continuously forces to expend their very limited energy to explain their disease, advocate for themselves and fight for services.
Mitochondrial disease is often an " invisible disease."
Good day - patients look fine and healthy. They have more energy and appear rested.
Bad day - - patients appear tired to significantly ill. They are obviously fatigued and/or have significant illness. Repeated "bad days"often lead to decompensation and patients have difficulty returning to baseline.
Mitochondrial disease is unpredictable. Day to day, hour to hour patients can develop symptoms and their stability can be threatened.
We appreciate all of the help we received so far to get Samantha to Atlanta and get the help that she needs.
Samantha is a beautiful teenager who suffers from many health issues. Her main problems are:
Mitochondrial disease and Carnitine Deficiency which is a form of Muscular Dystrophy. This causes major fatigue, muscle pain/weakness, memory loss, heat/cold intolerance, hypoglycemia, etc. Mito affects all organs in the body.
POTS/Dysautonomia which is Postural Orthostatic Tachycardia Syndrome. This causes very low blood pressure, extremely high heart rate, tremors, brain fog, exercise intolerance, etc.
Ehlers-Danlos Syndrome. This is a connective tissue disorder that causes extreme joint pain, heart issues, etc.
Eosinophilic Esophagitis. This is a white blood cell disease that causes the body to think food is a parasite and attacks itself. Samantha had a G tube in her stomach for two yrs and lost ALL food. She has slowly been adding a few foods to her diet.
Fibromyalgia. This causes severe muscle pain and weakness and decreased energy as well.
Spine problems. This includes pars defects/fractures, scoliosis, kyphosis, arthritis, herniated and bulding discs.
She also suffers from way too many other things to list. As you can see, she has been through so much all of her life.
Samantha is simply amazing. Through all of her struggles, she doesn't complain and always manages to stay upbeat and positive. She is always willing to share her story in hopes of helping others by bringing awareness. She is actively involved with the MDA (Muscular Dystrophy Association) and is a local ambassador.
She strives one day to be a motivational speaker and to let others know, who suffer from severe health problems, that life is still worth living and always hang on to hope. She hopes to someday change the world. I believe she's already accomplished that...
I know it is not much, but hopefully it can help in whatever way you need. My heart aches for you guys and wish I could be there for you to lean on. You are doing a FANTASTIC job as a mother, never - ever doubt that...you have a great kid!!!!
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