More No's and More Stress

So now we are back at CHOC hospital and feeling better, the Endocrinology department was great, they jumped right on it.  The doctors started our kids on Glucometer testing 3 times a day to try and get some baseline information on their sugar issues.  But this was not finding the issue and they decided to place a monitor on their hips that would stay in them for 5 days to track their sugar levels moment by moment.  This was hard my wife was the one to take the kids to the doctors to have the monitor placed.  The kids did not do well with this it was a very painful procedure and they both started throwing up and were in tears.  But the monitors were on for 5 days, after that they could tell us that they were not diabetic but that there was something else going on the Endocrinology department could not figure out.  So we were then referred to Metabology  to fallow up with the kids situation. 

Things went pretty smooth getting to Metibology and they also saw the need to test further to find the causes of the sugar level issues.  By getting to see the new doctors we were able to find a great method of feeding our kids every 2 hours with high Proteins and fibers to help the kids through their day.  They also got us set up with one of the best medications, Cornstarch with a little bit of juice. Sounds crazy but what they had found with all there testing was this, they do not slowdown in their sleep.  For a normal person who sleeps at night there bodies go into fasting mode, slowing down and repairing itself, as well as conserving sugars.  Our kids don’t they sometimes speed up and do to this lack the ability to repair at night as well as burn to much sugar from time to time.  This is good,, but still not a diagnosis, so back to the testing.  This time the find that my son is low in an enzyme called Levocarnitine, and luck us there is a medicine for this.  After going round and round with insurance we were able to finally get this medication and once my son starts it we see his whole world open up.  He is comes to us about 6 weeks later and say’s I can hear better, everything is brighter and I understand what is going on in school now.  Oh my goodness, this is so cool, now we try it with my daughter, but the medication does not work the same for her, so we have to take her off.

This happened just in time for us to have more issues with the medication; surprise the insurance decided they would not cover it.  We never told our insurance that we may one day need heart medication.  This Levocarnitine, I guess is used for heart issues, so please tell me how are we to know that one day in our early years that someone let alone our kids would need heart medication.  So they refuse and we are left to look for other methods, which turn out to be paying for it out of pocket, $300 a month.  We are screwed we are going to need to bit the bullet and just buy it and so we do, and now we are sinking deeper in debt due to doctors’ visits, medications and now there new diet.  And guess what we still do not have a diagnosis, which means no help from anyone we are just left to more testing and more doctor visits, medications,  and more stress for us……….

I will continue as soon as I can as of now we are working on some fun raisers for that Micro Ray Test that we have been ask to do and the isurance refuses to cover, we will keep everyone posted in this.  Plus we have a new method of donation, we still except PayPal, but now there is a link at the top right corner "Gofundme"

Thanks

Our Medical Insurance Struggles

            First let me start by saying thanks to everyone for viewing and donating for our needs.  We are set for our trip to Texas now, mostly because of you!  We just need to get ourselves set up for the long trip.  We will be sure to share with everyone any information that we receive from our visit to Texas and the doctors working on our kids medical problems.

I wanted to share with everyone the problems that we have had with our insurance and receiving the help that we need for our kids.  Now please don’t take this as if I am bad mouthing our medical insurance, but this has been the other problem we have had to work with over the past 11 years.  But having unique medical conditions has made dealing with insurance overwhelming at a time when our energies need to be focused on the children.

The problems started for us at the very beginning of our children’s problems.  We were treated well at local Emergency Rooms, and had been transferred to Children’s Hospital in Orange County.  We spent quite a bit of time there and really had not had many problems in the beginning.  We were talking to a doctor one day who mentioned that he felt we needed to talk to the Endocrinology doctor.  He felt endocrinology was our issue, not diabetes which we all were looking at as a possible answer.

 The appointment was set for us and we were looking forward to possibly finding an answer.  This is when we started to have our problems with insurance.  We received a call from our insurance company that proceeded to tell us that we were going to the wrong hospital; we were supposed to be at Children’s Hospital in Los Angeles not Orange County.   This did not seem right to us, but I thought okay, however we need to handle this will be fine.  They told me to just set up an appointment with CHOLA to be seen by them.  This is easier said than done.

So after making some calls we were basically told that we would have to start all over again with the testing of our kids.  By this time, the kids had gone through nearly two years of medical testing and we certainly did not want then to endure starting from scratch.   If you have ever heard a child cry as medical staff started an I.V. on them, you would understand why we did not want to put them through this again if it was not needed.  We tried to appeal to our insurance company and we tried to have our kids’ doctor help with setting up the appointment for CHOLA, but it was just more run a-rounds and more dead ends.  Finally after just being completely frustrated I called the Endocrinologist that had all our kids’ labs and I was hoping an idea of what might be the issue.  I talk to the Dr. and explained the issue and asked could I just pay cash to see you and see what you think, and what they feel we need to do for our kids’ health.  He said that was not possible, “sorry but I cannot do that Good luck with this problem.”  After spending another year or so trying to figure this out and find some way of getting back into CHOC or even get into CHOLA at this time we just got discouraged, we just kind of gave up. 

Things seemed to be okay with our kids for a while until about 2 year later we started to see issues happening again just like before.   It was back to the fight now and with a new insurance company, we fought and fought, until my wife had a great idea to switch the kids’ doctor to a one who was connected to CHOC Orange County.  She started looking into this and after a few months found a doctor that we could try.  Luckily after seeing this new doctor and explaining the story to her, she was able to get us referred back to CHOC and back to the Endocrinology department we tried so hard to get into.  After getting into the Endocrine department our kids were seen and we were treated very well.  We were feeling good and thinking we were going to be okay but little did we know we were just getting started in an even bigger, more arduous journey...

Bruce and Katie's Store

At the age of 18 months, my youngest son was found in his crib lifeless and looking as though he needed CPR.  It was a very frightening event, but we were able to identify that he was still breathing­–– just very out of it at the moment.  We rushed him to the hospital where I worked at the time and testing there revealed that his blood sugar was dangerously low.

 Next we were sent to Children’s Hospital of Orange County for more tests. But the new tests failed to show us anything new, significant or helpful and we were left with no answers to his problem, which clearly was not going away.  Time passed and we coped the best we could.

Then his sister–– at the same age of 18 months­––presented with the same thing.

Now we knew there was an issue! We took her to the same hospital to see the same doctor.  Tests were run and quick results came back. Our daughter’s blood sugar was high—500+ but everything else about her seemed to be just the same as her brother at the same age.  Then the doctor compared her brother’s lab results to hers and noticed that they were identical with the exception of the blood sugar.  So now we knew there was something strange going on with both kids.  

We left CHOC (who treated us very well) and started looking for answers they couldn’t give us.  We knew from the results it wasn’t diabetes, and that it appeared to be a metabolic issue­­––we just didn’t know what.  We needed to see a specialist to get better information.  

And here’s where the nightmare of healthcare comes in. The insurance company figured we’ve seen the doctors, we’ve been to CHOC; that’s enough. Our insurance company pulled the plug. We have two children who need care but because of the rareness of it, we were at an impasse. We had only two glucose monitors, our own limited knowledge, and a feeling that more must be out there somewhere.

.  My wife is a savior. She stepped up and started to understand the better ways to feed them to help keep their blood sugar in check.  It’s not perfect and we are still dealing with low or high sugar on occasion––but through her tireless efforts we are managing. But any kids’ metabolism doesn’t stay the same forever and things started to worsen for both kids despite our efforts. We had to fight our insurance company once again and the original doctor and finally find our way back to CHOC and to see a doctor more specialized in this. That was great.  

We now know that what they have is still very new and unknown so there are no diagnoses as of yet. But the kids are being helped through medication and more testing. It’s been along time since those 18-month presentations of illness. Now the kids are 11 and 9 but we are still dealing day in and day out with the same issues in many of the same ways. 

Through all the testing and new innovations we’ve found out that they have an additional issue: The CHRNA7 Gene. Again, this is new territory for the medical establishment as well as for us. There are very few known cases of people with this in the world and no true diagnosis or help exists for this one as well. But there is a glimmer of hope—if not for treatment, then at least for answers to solve the mystery of our children’s health problems.

 Texas Children's Hospital is doing a study of the CHRNA7 Gene, and we have been asked to take part in it. This trip for our family is well out of our budget, both due to the economy and due to how many expenses we incur daily which our insurance never covered.

We are asking you to help us in any way you can. We are asking you to consider helping us defray the cost of some uncovered medications and the cost of taking our family to Texas for this opportunity to unravel the mystery of these disorders.   We are hoping to find a link between the CHRNA7 Gene and their Childhood Mitochondrial Disorder, or some answers that will help us manage their care more efficiently and effectively.

An established diagnosis will eventually help us to receive more help from the CHOC specialists, the constant doctors’ visits, and the kids’ medication expenses.

I’m sure if you’ve ever had to deal with a medical issue, you can understand our dilemma and the frustration and anxiety dealing with medical issues brings to a family. Our family budget is dictated by illness.  My wife cannot work outside the home as she has to be there for the kids 24/7 even when they are at school! Anything can happen at any moment in their metabolism and she cannot be too far from them in case something goes terribly wrong. I have been working hard to keep things going in the right direction and provide for my family, but feel the weight of all we have going medically has finally caught up with us.  

We are stressed to the breaking point, so I am starting this blog to let people know what we are doing. It’s time to include the community in our trials. We need to try and get to Texas and get our medical bills and medication bills under control. We don’t want to have to choose between a roof over our heads and life-saving medication for our children. It’s a choice no American should have to make. 

We have a wonderful church community that is planning a few fundraisers for our family. The first one is a yard sale to be held on February 9^th at the church (flyer of event below) . All proceeds from the yard sale will go to helping our kids with all of the above. There is also a PayPal link below for your convenience if you aren't able to travel locally to the fundraisers. Thanks so much for your generosity.  Your help literally will make a difference in our family’s health and happiness.