Tag: Mito Sucks

Prayers Needed

For all you prayer Warriors out there I would appreciate one for Daphne on Monday she is getting Tube Surgery on her ears.

She has been suffering from ear infections almost weekly and we had this scheduled once before but had to cancel it because she got croup. 

This is a standard normal procedure for normal kids but for Mito kids the stress of the anesthesia, surgery can all throw her Mitochondria into a panic.

I had to dictate to all docs involved how it is going to go and I will still have to make sure the pre and post op bloodwork and drugs used are all kosher, since they screwed it up for her last appointment. Geesh, healthcare these days is bad, bad. Once I calm down from the week I had I will write about it but write now I have nothing nice to say, so I won’t say anything at all. 

The Insurance Fight

For those of you that are reading this and are not living and breathing the many struggles of the Mito World, here is a little explanation as to why this post is so important to me:

There is no cure or treatment for Mitochondrial Diseases, so drug companies rarely spend the dollars to research drugs that will help improve the lives of those living with a Mitochondrial Disease.  This means over the counter vitamins/supplements are the only options for the “Mito Cocktail”.

Today I had some time and decided to pick the “fight” back up with the Insurance company that I started Jan 1 when I tried to REFILL a prescription that I had been getting for months for Daphne.

Dec 2016 the Rx was $0

Jan 2017 the Rx was $50

We could get a similar drug over the counter for $15 but it is 500mg and Daphne is prescribed 300mg.

Your probably saying not a big deal just split the capsule and call it a day.  Yeah we did that until I found a compound pharmacy to make the EXACT dose that she needed and ladies and gents I worked hard on that so I was not going to be told different now in 2017.

*Note a capsule cannot be perfectly divided as the contents inside are not guaranteed to be equally distributed.  So you see my driver here?  I want it to be perfect for my child, she deals with enough crap we cannot control, this I can.

Well I had a great experience with Gloria from Georgia at the end of 2016 figuring out why insurance would not cover this drug and how the pharmacy was running it incorrectly and how a filler they use was not an allowable cost and she got the pharmacy to just give me the $9 filler for free.

*Note I have a little history with this pharmacy, they screwed up a very, very expensive prescription for my dog and I did not flip out on them so yeah basically they owe me big since they didn’t lose their license over that.  My only comment with a smile on my face was, good thing it was just my dog and she is still alive and you know my daughters Rx is filled here so don’t screw that up or we will have a problem, love mama bear.  So yeah I basically get whatever I want from them.

So when I started having issues I wanted Gloria back but Jessie didn’t want to give her to me and he wanted to help and said I understand and will call you back in 45 minutes.  Over a month later and yeah I was real busy in that time….nothing from Jessie.  Don’t worry Jessie I will never ask for you so you will never have to deal with me.

Today I called and spoke to a few people and a few different numbers and was frustrated as this was not how things were handled in 2016 and then had to hang up on them when a coworker came by (probably someone watching out for me above did that) and so I called back and spoke to the most lovely of humans and I forgot her name.  Anyhow she was with Express Scripts within our insurance.

Lovely lady in Express Scripts let’s call her “G” walked me through, answered all my questions, probably appreciated my knowledge to date and gave me the tools to be even more informed and have all kinds of access at my finger tips.

  • I learned my In Network out of pocket max (OOPM) which includes Prescriptions not just Medical ( I did not know that, you will see why that is important in a min)
  • I got access to express scripts online which shows me the out of pocket stuff, all prescriptions filled and the cost since we have had the plan, mail ordering, etc.
  • I learned that the drug in question was $0 to us in 2016 b/c our out of pocket max of $7,000 was met (I took a big gulp and said what, wait, how, I did not pay that much)*
  • I learned that our doctor can call in a larger quantity of her prescription and I can get more for the $50 for now until our OOPM is met.  UMM YEAH!
  • I also asked how I can get other supplements we buy that are not a prescription to go towards our out of pocket max and its simple….well kind of, our Doc has to file an appeal on our behalf and ask for an exception to include the cost of the over the counter meds towards our OOPM deductible.

*You may have known this and maybe I did since I answered the questions that I asked but basically if you get a RX filled that costs $5,000, insurance pays $4,000 and your EOB says you owe $1,000 (eventhough we never pay what the EOB says) that $1,000 goes to my out of pocket max.

SO….I called her Mito Doc Nurse, explained my craziness, she was excited and said let me put the request into the doctor.  I am asking right now for a 3 month supply for the $50 versus the 1 month supply and I also asked for him to appeal the ubiquinol and for him to provide a larger quantity for the other Rx she gets so we have a buffer.

I am going to UMDF on the hill this summer and didn’t know what or how I was going to talk to our congress person about health care, insurance and prescriptions and present and defend something that is obtainable but I believe this is it.  This is one step to helping Mito Families.

To get Over the Counter Vitamins and Supplements to count towards In Network Out of Pocket Maximums!

The company I buy Daphne’s Ubiquinol (CoQ10) from is fighting the Mito Cocktail be covered by Insurance so I am sure this will be a start and have some backing.

The ultimate message here is:

Don’t give up or give in, talk to people, talk to doctors, talk to your pharmacist, talk to the insurance company to learn as much as you can.

Be polite and nice, it’s never the person on the other end that made health care the way that it is, it is however their job to ADVOCATE the best that they can for you.

My dad always said “You will attract more bees with honey”

I am not a person that is easily defeated, I do not take NO for an answer.  There is always more than one way to skin a cat.

There is only one person that will be the best Advocate for your child and that is YOU!

xoxo desiree

 

 

Army Crawl

We take Daphne to PT 4 days a week. 

Since she is able to sit for a couple minutes unassisted her therapist has moved on to teaching her how to army crawl.  

I have tried but felt like I was just getting her in a frog position and she was trying to move her arms but her mama was failing guiding the legs.  

Here is a short video of her therapist showing me how to do it, this is at the end of her session so she is a little tired.

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Proud of My Girls

Both of my girls this weekend accomplished something and succeeded at something they have never done. 

This is something every parent wants to say and experience. 

You may look at these two videos and think they are on different scales but they were equally hard for both with all factors included.

I will never smile bigger than when I watch my kids do something amazing. 

I hope this makes you smile.

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xoxo Desiree

Follow-up on Gluten

Back in August I wrote a post on “To Gluten or Not to Gluten” and promised to follow-up.

Trust me when I say I have been reading and asking and looking and posing questions to the doctors and just now got somewhat of a direction.

The skeptic in me, tells me this will change just as the advice on when to give peanut butter does but for now this is what we know….

Daphne does not and should not go Gluten Free.

The diseases that are autoimmune diseases (type I diabetes, celiac disease, and multiple sclerosis, etc.)  benefit from this diet but Daphne does not.

Whew…thankful!

xoxo Desiree

It’s a Christmas Miracle  

Well…

Not really, but I have always wanted to say that and this is probably as close as I will get, but it is after almost a year of therapy.

Miss Daphne Poo is doing really well with unsupported sitting.

Rich was able to capture it on video today

One Whole Minute!

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The little things for me are being able to sit her on her changing pad while getting dressed and button the back of her shirt or comb the back of her hair, it’s really just great!

XO Desiree 

Little Inchstone

So as I have mentioned before Daphne had a regression in April of 2016.

What that means is, it is a form of brain damage.

It is unknown if the skills lost will be regained or get worse.

For Daphne she lost the ability to use her hands, she could not even open them, they were in clinched fists all the time, unless she was sleeping or completely relaxed then they would open slightly, also her arms and legs became very stiff and she also lost the ability to rollover. 

She was about 10 1/2 months old and this was so hard for us to see. We continued therapy, working with her and at this point in her life she really loved massages all over her body to help with I think sore muscles.

So now that most of her skills have been regained but glimpses of the regression still exist and she is definitely much weaker in those areas which were already her weakest areas, any little inchstone makes us all so happy and we cheer “Yay Daphne, good job” she gets so excited and is so proud of herself, she has this little grunt/laugh that she does when she has accomplished something. 

Earlier this week she had a dentist appointment and we did not have any oatmeal made so she and Rich were going to have a breakfast date at our local breakfast spot but while getting ready to leave I tried one of Adelaide’s pouches of applesauce. 

Note, neither one of my kids liked purées or mashed potatoes as toddlers (guess it was a texture thing) and Adelaide did not like applesauce or oatmeal for years, probably not until she was in elementary school, so this was super cute to see little miss poo poo eat from a pouch and hold it all on her own.



Thrushstrated

I’m waving the white flag!

I surrender, I’ll be good, I got it, I don’t need anymore examples of how different Daphne is than Adelaide, health wise at least.

We all know they both have the same stubborn personality that likes to challenge their mama!

I am thankful for that, well most of the time.

I am thankful that hopefully all of he stubbornness is strength for Daphne as well.

The poor girl from her super duper antibiotics developed THRUSH! 

I was giving her more probiotics than usual to help prevent a diaper yeast infection but did not think I would have to worry about the other end!

She is rather miserable but we have started the anti-fungal and grapefruit seed extract and extra probiotics. 

I hope she has relief tomorrow 

Sick Days

The past few days have been a little scary with Daphne.

She has been sick.

To most people with kids, sickness comes and goes and yeah it’s tough and nobody likes to see their kids sick or deal with the sleepless nights but with Daphne it’s very different.

Most if not all of you will never be able to understand the stress a sickness brings to us when it hits Daphne.

How is her body going to be able to handle it, how long will it take for her to get over, will she loose weight, what antibiotics can she take, how will her body respond to the medicine, how many doses of Tylenol or Motrin can she take before…we don’t know the answer, will she have a seizure, will she have, dare I say it and please say a prayer and send a good thought or whatever you believe in before I write the the next part….

(I did)

a REGRESSION!

Is the temperature right, will she spike a fever at night, is the house temp right, her body temp, her room temp, should she be in cotton Jammies or fleece or a sleep sack or should she be sleeping with us or us in her room on the floor so we can monitor her closely….

Let me tell you those are just a few of the questions that run through my head.

We hear so many stories of hospitalized Mito kids and (say another prayer) we have avoided that so far.

Well this sickness caused a high fever last Sunday after a few days of yet another ruptured ear drum that we were treating with ear drops and decided to hold off on the medicine since it had only been 1 week since she was cleared from her previous ruptured ear drum. She has had approximately 3-4 ruptured ear drums in the past couple months.  

She is teething, and I mean really teething, she has gotten 8 teeth in 6 months and is working on 3-4 more all at once. I blame the teeth but with her you never know.

So when she spiked a fever of 102.5 on Sunday I called the doctor and started an antibiotic. Monday we went to the doctors to follow-up and her fever was 103.5.

My girls and I run high fevers so it’s not something I used to get too worried about until Daphne, like I said earlier it’s very different.

Fevers are very dangerous to her disease.

We don’t want to give the Mitochondria any more reason not to function properly.

After consulting with the Medical Director of the Metabolic Group that provides the care for her Mito Disease and per the Pediatricians recommendation we started a 1 -3 series set of daily shots of rocephin. 

* I had a little anxiety as the pediatrician who saw her was not her doc, a new doc to the practice that had never met Daphne and clearly knows nothing about Mitochondrial Disease.  I was very nice to her but a skeptical nervous nelly all at the same time as she was comparing Daphne’s illness to her 14 month old daughters cold.

FYI please NEVER compare your “normal”, “healthy child” even if sick to my daughter with an extremely rare disease, I have a normal child and the two are incomparable. Nothing gets my blood boiling more than that!

But with a cool head I kept going on but said any thought or direction you want to take has to be cleared by her metabolic group first. 

She tried to get them on the phone via the physicians line but they are smart and took my call first, point for the Metabolic Director.

The Metabolic doc asked all kinds of questions on her appearance and suspected cause and when the ped doc said this is my first time meeting Daphne you could literally hear crickets on the phone so I interjected before he lost his cool and answered all his questions and explained our doc was on vacation and this doc is new to the practice.

All seemed okay after that and the Metabolic doc agreed with the treatment and to treat the fever as aggressively as possible.

The antibiotic selected is apparently very painful, they even mix a little lidocaine to help with the pain and had to give it to her in both legs since her dose was too large for one leg.

When the nurse said normal walking patients complain that it hurts to walk and often will not my heart broke for poor Daphne but hopefully she would not have that level of pain with her immobility.

So I took a VERY fussy baby home and she was what we call in a FRAGILE state. Any little thing can set her off so we all walk around on pins and needles.  I thought that night was going to be better because she had a dose of medicine in her but it was the worst night of all. 

Her sleep was already bad with the illness, she was not napping during the day and was not sleeping much at night, up 3-4 times.

Monday night she managed to sleep in her bed and Rich woke her to give her, her normal 1:30am bottle and her temp was 103, we woke her fully, gave her Tylenol and I held her on my chest, she was burning up but I know when I get a high temp I am freezing and when the temp starts to go away I then get really hot.

But that was not it, her heart rate was elevated and her breathing was labored and I was so close to dialing 911, talked to a sleepy Rich who thought she was normal, and the started texting my dad at 3am knowing he was up on the east coast and getting his thoughts since it had been about 20-30 mins since her Tylenol and the fever had not dropped much and googled labored breathing and elevated heart rate due to fever and sure enough a babycenter article appeared that on average in a child the heart rate will increase 5-7 bpm with each degree elevated… 

A sigh of relief that I was not crazy, all though me trying to record a pitch black video of the sounds of her breathing for my dad to listen to, with a humidifier running in the background was a little nuts. Sorry Howard!

So Rich took her in for dose #2 and her temp was still high and the ped doc said if she spikes a temp tonight she needs to be admitted to the hospital and to treat any temp over 100.4. 

Umm I was freaking out and expecting the worse because even with Tylenol her temp did not go down to 100.

Rich gave her Tylenol at 2pm on Tuesday and I watched her fever and checked it periodically in the middle of the night and it only got to 100.2, talk about lucky.  Even the next day it was low grade just under a 100, I took her back in for dose #3 and the final dose and asked what to expect and how to clear her for good.

What I didn’t mention yet is the suspicion is that all of the ruptures were the same ear infection that had not gone away but the ear drum healed but this stayed behind the closed drum and continued to fester, but the doc also saw puss on her tonsils (maybe strep).

I pointed out to the ped doc on day 1 of her fever she got a red spot on her forearm. Spots/Rashes and fever together can mean something.  They said NBD.

Ok so on day 1 of the antibiotic she got a red spot on her head. They looked at it and just said watch but didn’t think it was a reaction to the medicine.

On dosing day 2 spot on head stayed but everything else was normal.

On dosing day 3 in the room waiting for the ped doc she broke out in a rash all in her hair. I pointed it out to the doc and I said maybe a contact dermatitis…it happens to us sensitive skin folks all the time. She said maybe roseola or viral rash, NBD.

Well day 4 normal day the rash spread down her neck a little, ok I just watched it.

Day 5, Adelaide and I went Black Friday shopping (all day basically) only to come home and see a rash all over her back, under her diaper waist line, on her belly button and a little on her chest. 

Geesh, seriously?! 

I FaceTimed with my parents, took a picture, sent Rich to the store for Benadryl. 

Benadryl is not well received by Adelaide and I, it makes us super hyper. I know Daphne will be the same and was really dreading this right before bed. 

Rich brought home children’s Benadryl not infant so I said let’s just both go back to the store, Daphne needs to get out of the house.

Guess what. They don’t make Infant Benadryl. So I called the ped doc on call line, to find out Daphne’s pediatrician was on call… thank you Jesus!

Her doc is the sweetest most kind and caring doc I have met. She said so I have been out of the loop with her but have read the notes, and she asks what do you see is going on? I explain everything, text her pictures of Daphne, examine the rash for smoothness, when you press on it does it go away, etc.

She mentions measles (eek don’t even say it, she is not vaccinated against it) , Roseola, viral rash….basically it is unknown but it sounds like roseola and I google and it sure does. 


One thing I also read about was febrile seizures and Monday night during her really high temp and while I stayed up with her from 2-5am she was doing a really weird clenching with her hands and kept her arms high and tight and moving (honestly rich and I both thought it was the signs of a regression) but usually don’t say those things out loud to one another, but I started to this time and he just said I know. I watched videos of kids going through these and think this is what was happening.

I had training on seizures a long time ago as a Disney life guard and had a cat who had them regularly and was medicated so I watched a video tonight on how to care for them. 

1. Remove anything that can hurt them

2. Cool the environment (temperature wise)

3. Do not restrict movement

4. Wait until it is over

She is not out of the woods. We avoided a hospital visit and I hope to keep it that way but this “rash” needs to go away and we are following the doctors orders on how to care for it.

I decided to write this blog post as we got into bed to sleep probably because I can’t sleep and have to watch her and constantly go check her  in addition to watching the video monitor which is requiring a trip to the chiro and massage for my tight neck.

Worried Mama Tonight, even more than usual!