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….
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.
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!