Thursday, June 13, 2019

Caregiver Woes with the need to live forever and Fun in the Sun

I am a hot mess over here.  I do mean that in the metaphorical and literal sense in that it is hotter than Satan's. . . oh wait.  Kid's blog.  Just know that it is ridiculously hot and that I could cut the air with a knife given the extreme humidity and I could fry an egg on the hood of my car.  Or driveway.  We were able to escape the heat last week as we took a family vacation to Seal Beach, California. The weather was beautiful and cool.  Ellie enjoyed frolicking in the ocean and we had a great time visiting the Santa Monica Pier and returning to Irvine Park.  Last year, The Wish Connection sent our family to California and hosted an event at Irvine Park.  I guess Princess Twinkle Toes of the Turkey Bears made quite the impression because the train conductor remembered us!  Actually, he remembered Andrew and Ellie and especially the part where Bear stole the microphone from Princess Elsa and started to "sing" on the train.

Riding the train at Irvine Park


1 year ago at Irvine Park


One of my greatest fears and greatest desires is quite morbid, but I am going to try to explain the best that I can.  My greatest fear is to lose my daughter and yet, my greatest desire is that I outlive her.  Now I mean this when she is close to 60 years-old (this is the average life expectancy of a person with Down syndrome in the USA) and I am in my 80s.  My greatest fear is that she will out live me and end up not getting the care and love that she needs.  That she will end up in some unlicensed care facility where she is neglected both medically and emotionally.  That she is all alone.  The idea of this happening causes me great anxiety while at the same time, the thought of losing her cripples me.  



The past few months have opened my eyes a bit and have resulted in me having a new goal.  Yes, what is it about these goals that I have no control over?  Not only do I need to live forever, I need to be healthy - both physically and of sound mind.  There are people in my family who have lived to be over 100 so longevity is entirely possible, but there are also those who died "youngish" (80s is young, right?) and had dementia.  These past few months have been trying and made me realize that I can try to eat healthy most of the time and work out, but I can still suffer from illness.

With the exception of my annual physical and a fair number of visits to my sports rehabilitation doctor for my spinal issues a few years back, I have been to the doctor more these past few months than in the past 10 years combined.  I had a whole slew of nonspecific symptoms that I ignored for a while as I was chalking most of it up to stress and later my neck issues.  Nurses really do make the best patients!  



I was suddenly sleeping 10 hours a night and taking on average, two 2 hour naps a day.  I also had malaise which is where I felt blah, just not right, and almost like I was coming down with the flu. I assumed that the fatigue and malaise were initially due to stress.  Up until early March, the Bear was having major psychiatric issues, self harming, and multiple doctors' appointments.  It was stressful and I had trouble making sure I was taking care of myself.  I have a history of having that extreme fatigue where it would last a few weeks a few times of the year.  So I ignored it.  Only 2 weeks turned into 3+ months.



During this time, I was having excruciating headaches that would only disapate with laying down.  They were odd.  It would start on the left side, the back of my head and then travel up along the back side of my left ear while looping around my forehead.  I was also having some radiation down my left arm and I had significantly decreased mobility of turning my head to left.  I have a history of cervical spine stenosis (where arthritic vertebrae push into the spine cord and surrounding nerves) and I just assumed my steroid injection from 3.5 years ago wore off.  So I requested a script for physical therapy and unfortunately that turned into a disaster after just one session.  I've had vertigo (the sensation of spinning or dizziness) for a long while now and I just assumed it was orthostatic hypotension which is where your blood pressure drops when you go from sitting to standing too quickly - many people call it a "head rush" only after physical therapy, it changed.  I started to have vertigo while sitting, with various head movements bending over, etc.  Again, I attributed this to my neck. The fatigue, headaches, and the vertigo led me to no longer working as a substitute school nurse and I was having to depend on Andrew to take off work to drive Ellie to some of her therapies.

With the vertigo - I couldn't even watch her on the carousel with nearly falling over and extreme nausea let along ride it with her.


The thing is, whenever you have a whole bunch of vague symptoms, you tend to think it is one issue. . . not multiple.  I got in to see a new sports medicine doctor who told me that the vertigo was not from my neck and to see my PCP for the fatigue.  I then started a round of doctor roulette.  I've had a ton of blood work to rule out anemia, hypothyroidism, Vitamin B12 deficiency, electrolyte imbalance, Lupus, kidneys issues, etc (that isn't everything but you get the idea) and then a neck and a brain MRI.  I finally got a steroid injection into my neck which helped with my head/neck mobility and the pain down my arm but did nothing for my vertigo or headaches.  The fatigue and malaise suddenly went away and I don't know if it is related to the fact I had to take high dose steroids before getting IV iodine contrast or if it was just a flare up of something, but I am not complaining!!!  I am currently seeing a neurotologist - a neurology ear doctor- who specializes in vertigo.  There is still some testing, but it looks like it is related to BPPV or benign paroxysmal positional vertigobenign/idiopathic intracranial hypertension (hence the headaches, vertigo, ear issues but I am not totally sold on this diagnosis), and possible a temporal bone issue at one part of ear as seen on MRI. Basically, I am a hot mess, BUT things are finally getting better. 

So all of this brings me back to my greatest fear.  It is one thing to say I need to live forever so that I can care for Ellie, but what happens if it is me that needs to be looked after?  


Monday, May 27, 2019

Happy Memorial Day!

School is out and I officially have a 4th grader on my hands.  Can you believe it?  I feel like I am not old enough to have a child that is almost 10 years-old, but my white hairs and fine lines say otherwise. 

I've been dealing with some major health issues these past few months which is why I have been neglecting the blog and the The Chronicles' Facebook page.  Things seems to be better these past few weeks and I will keep y'all up to date on Princess Twinkletoes' adventures.  I am slightly better about adding pics to my IG account so be sure to follow The Bear there: https://www.instagram.com/atheurer/

Photos: Andrew Theurer at Elizabeth Milburn Pool











Tuesday, April 30, 2019

How to prevent your child from pulling out their g-tube / cecostomy tube

For those of you who have been following along on this blog for a while, you know that some of my friends and acquaintances have referred to me as the 'poop guru' - yeah, not exactly what I want to be known for!  Thanks to Ellie's unique gastrointestinal system, I have learned just about everything there is under the sun to relieve constipation and get a child to defecate regularly. . . except my daughter, that is.  Anyway, this blog post comes about because on Friday, I get this call from the Interventional Radiology nurse.

IR: Anna, remember when Ellie pulled out her [cecostomy] tube?

Me: Unfortunately.  I'd like to erase that experience from my memory.

IR: She hasn't pulled it out lately (*me: Thank goodness!) and I need to know how you what you are doing because we have a child who keeps trying to pull his out.


Well okay then.  Here are a few easy strategies that have barricaded the Bear from deftly removing her indwelling colon tube:


Check that out!  I think that this is the first pic that I have shared where the  tube isn't infected and there is no granulation tissue.  Gorgeous!

For all of you The Chronicles newbies - this is a Chait Trapdoor aka cecostomy tube.  It is a button/tube goes into the ascending colon and is used to administer very high volume enemas.  Twinkletoes here thought it would be fun to only have a bowel movement every 12-22 days even with multiple dietary, lifestyle, and pharmacological help.  Puking because you have stool squashing your stomach generally isn't a good thing. That is what happens when your colon has moderate -to -severe delayed colon transit.


Moving on to what this blog post is actually about!  After Ellie pulled the tube out, I tried using those belly bands that you could get off Etsy for kiddos with g-tubes and I tried making them myself.  As adorable as they were with their fun cartoon characters and bright patterns, they didn't work for the following 2 reasons:

1. The belly band would either bunch up with movement or completely ride up on her stomach above the tube.  I think that it would have been fine if it was a g-tube, but since the cecostomy is lower on the abdomen, it just wouldn't stay covered.

2. She could take them off.  Mainly because it was fastened with wimpy velcro.

What I am about to tell you will just blow you away - okay, it most likely won't.  I went over to Amazon, my online addiction, and looked at those surgical abdominal binders that people use after pregnancy and gut surgeries.  These things are full on elastic and have the industrial strength velcro.  The problem was that I bought the generic one-size-fits all and I had to cut it in half width-wise and remove a significant portion of the length.  Then the edges would fray.  The link below is for the brand that works best for Ellie and has various option sizes. It is latex-free and it is available on Amazon Prime. (heads up: while it is Amazon Prime, it usually takes 1-2 weeks to arrive, but hey, you get free shipping!) Ellie wears the small. She is currently the size of a very skinny 6 year-old child at 44 lbs, but she did wear the same size when she weighed 7 lb heavier [someone explained to me why no one is concerned about her weight loss?! Yes, she lost weight a year ago when she stopped taking Risperdal, but still!].



That would be crayon all over her binder.  Once upon a time, I labeled her binders with a sharpie for Camp.  She now thinks all of her binders should say "Ellie" so she grabbed crayons and wrote her name all over it.  

Ellie loves the binder and I think it is because it provides a bit of compression - sensory input.  

But what about when my kid is in the bathtub or shower, you ask?  Turkey Bear wears a one-piece swimming suit for bathing.  Now I know that for all the boys out there, it wouldn't exactly be fashionable, but I will tell you it works!



There is one more thing that helps detour her from yanking out the tube.  Ellie's tube is too big for her and so it is moves around a lot and leaks horribly - gross!  Because of this, we keep a piece 4 x 4 non-woven gauze folded into quarters and secured with paper tape over it.  (if your kiddo has sensitive skin like Ellie Bear - use Critic-Aid AF around it before covering and stick with paper tape).  Notice that I said non-woven gauze.  Woven gauze, which is most commonly used in the hospitals, tends to get stuck on the tube and then you are at risk for accidentally pulling it out when you go to remove the gauze. 


Look at that horrible bandage job of mine!  Did y'all know that I used to be a pediatric ICU nurse?  That means wound care was in my job description!  No one said it had to be pretty.


Fingers crossed that some of these tips will help prevent your kiddo from yanking out his/her g-tube or cecostomy tube!





   



Thursday, April 4, 2019

Organized Chaos

Well okay then. . . I'm doing pretty good since it is only 3 weeks since my last blog post!  I'm just going to toss out some general updates because we are experiencing our usual organized-disorganized chaos over here.  Of course, I am still flying by the seat of my pants and I am pretty sure things shall continue that way until I am 6 feet under . . . or in an urn.



Psych Update:

Oh yeah, that's right. . . I talked about Ellie's self-harming behaviors a little ways back.  After many sleepless nights, feeling of like a parental failure, and incessant worrying,  I would like to report that after adjusting her mood stabilizer, adding in another baby dose of Adderall, and increasing her strattera, I have a totally different kiddo.  The emotional crying and sobbing in the morning is now more of a rare occurrence.  The agitation with hitting/biting/head banging herself or me in the afternoon has resolved.  She is a little less impulsive.  All in all, Ellie is the HAPPIEST that I have EVER seen her in her entire 9 years of life.  It breaks my heart to know that she had probably been feeling unhappy and out of control for so long.   Now it isn't all roses over here.  The Bear is still her usual toot.  That's just her - Miss Sassypant McToot Turkey Bear - and I wouldn't have her any other way.



Feeling Brave:

I had this brilliant idea that once Bear was off the nighttime oxygen, I would take a trip with her to my hometown of St. Louis, Missouri.  I kid you not, that day in October when they said we could stop the oxygen, I booked a spring break trip back to St. Louis.  Just the two of us.  Yep.  Ellie Bear and me.  As in without Andrew or another adult to help me corral the hyperactive monkey.  Up until a few weeks before our trip, I was having mini freak outs, but in the end, she was an angel [ see psych update above]   It was great to spend time with my family and I got to see some aunts, uncles, and cousins that I haven't seen in 5 years and that haven't seen Ellie Bear in about 7 years.  I have a ton of pics, but I can't share them because I forgot to ask permission.  


Someone was very excited about getting on an airplane



Just Going to Have to Hold It:

Well the Bear is a clever little thing.  E is well aware that the scissors are off limits after the one time I came out of the bathroom and discovered that her doll was missing hair and was sporting a gazillion hair bows.  I thought that I put the scissors high enough up . . . 

Last week Ellie was watching this YouTube video of a little girl getting her haircut.  So we gave her the play-doh scissors . . . obviously that's not good enough because she waited until our respite care provider went to the bathroom to take the real scissors.  You know, the sharp ones that actually cut?   (cheeky thing dragged a chair over to reach them!) Let's just say it is fortunate Barbie got a lop-sided chop and not Ellie's hair.  Needless to say the scissors are in a childproofed locked cabinet. 

Ellie's antics are not only limited to hairstyling.  Nope, yesterday it was the paint.  Girlfriend was aspiring to be a member of The Blue Man group. Clearly it is not safe for any of us to use the bathroom.

Noble Pig is now apparently a beauty salon






Dermatological Fun:

Don't forget your sunscreen, y'all!  Even if it is cold, cloudy, you're only riding in the car, etc.  I'm in my 30s and just had my first pre-cancerous growth removed from my nose on Monday.  I look like I have this nice crater on the side of my noise.  It itches like crazy, but I'll take that over cancer.


Vertigo and Neck Issues:


Once upon a time I got rear-ended 3 times within a 16 month period.  That was the beginning of my lower back issues and my neck issues.  About 3.5 years ago, I had decreased mobility of my neck with significant pain radiating down my left arm with numbness in my hand.  Two steroid shots into the disc space fixed that.  Sadly, the arthritis and cervical spine stenosis will never go away.  I think with Ellie's flop and drops, I re-pinched a nerve as I can barely turn my head to the left and I have pain starting on the back of my head radiating along my left ear to the front of my head.  I have gotten some sports massages and chiropractic work done which significantly helped my headaches, but physical therapy triggered vertigo.  I am pretty much dizzy if I change position too quickly, move my head funny, or stand for too long.  Needless to say I stopped physical therapy and went back to my sports rehabilitation doctor.  I will be getting an MRI tomorrow so wish me luck!

Unable to find photo credit other than Pinterest
Photo: myhealth.alberta.ca

Tuesday, March 12, 2019

Say What?! - Pediatric Hirsutism and Stress!


Hi y'all!  Can you all feel the stress radiating from me and hear my screams from Texas?  Just when my stress and anxiety levels start to taper down, something happens to send them skyrocketing again.  Seriously, can this kiddo have anything else?  It is like Ellie is the poster child for random, non major (thank goodness!) medical conditions that always leave health care providers stumped.  Why?!

*Please note that aside from Ellie's low thyroid, these medical conditions discussed in this blog are not related to Down syndrome.*


Hirsutism:

Yesterday was Ellie's neuropsychology appointment (more on that in a later post).  I brought to the nurse practitioner's attention abnormal hair growth - something that started a few months ago.  My thought was that it may be her Trileptal (mood stabilizer/antiseizure medication).  Yes, it isn't listed as a side effect, but. . . "it's Ellie".  This led to the other neuropsychologist evaluating her and saying it's odd followed by the Comprehensive Care doctor also saying it's odd.  All said - "I am not sure what the cause is.  This is atypical.  Perhaps it is the Trileptal, but that makes no sense.  However, this is Ellie".

Abnormal hair growth or hirsutism is not often seen in kids.  For Ellie, she has increased and darkening hair along her arms and legs as well as fine hair, also darkening along her spine. Some people refer to it as lanugo.  The Princess refused to cooperate for a picture so check out the one from a Dermatology journal below.  Often times, the hirsutism also occurs on the face along upper lip and occasionally the chin and side burn area.  Thankfully, we are not seeing that . . . yet. . . hopefully never.  The anxiety over facial hair makes me want to puke.  I don't want to shave my 9 year-old's face!  I don't know if it is transient and will eventually fall out or if it will be permanent.  Cue: Mama Bear crying, screaming, and having a heart rate of 180.

Photo Credit: Our Dermatology Online Journal
Hirsutism is most common among woman who have polycystic ovarian disease.  Ellie is too young for that and there is no family history.  Four, yes, I said FOUR, healthcare providers (including endocrine from a few months ago) and myself have concluded she is not in puberty.  Plus, the distribution of hair would be more along the lines of the usual puberty patterns - think legs, underarms, and genital region.

Other causes include long-term use of steroids such as prednisone and Cushing's Syndrome.  All of these increase one's cortisol levels.  Cushing's Disease, which can develop suddenly, is rare in children and is often the result of an adrenal gland, which sits above the kidneys, tumor which also causes increased cortisol levels.  

Testing for Cushing's Disease is a pain in the butt and not all that accurate.  One test involves analyzing cortisol levels via blood draw in the morning and at midnight.  Oh yes, midnight.  What lab is open at midnight?  A 24 hour urine collection.  Yep, you read that right - you are basically going to deliver a gallon of pee to the lab.  Also a dexamethasone-suppression test, which I don't completely understand.



Symptoms include:

-moon face/round face
-truncal obesity: excess fat along the back, abdomen
-high blood pressure
-high blood sugar
-striae/purple lines 
-hirsutism 
-absent menstrual cycle
-males: increased breast tissue
-poor wound healing


All of us have concluded that Cushing's Disease is very unlikely since her only signs are the hair growth and the high blood pressure.  The high blood pressure is also atypical in that it is in her left arm only and she has high renin levels (produced in kidney).  Ellie has her follow up with the nephrologist this afternoon so I plan to talk to him about it.

As it stands, the Comprehensive Care doctor is going to do an extensive literature review as well as consult with endocrine.  I for one would Like to have for harmonium levels drawn especially testosterone. 

Not-So-Fun Fact: hair along the spine is is slightly more common in Down syndrome than in the general population, BUT not even close to people Ellie's age.

I hope to get in a blog post soon on Ellie's strabismus surgery from the end of January as well as a psych update.  In other news, I managed to re-pinch a nerve in my neck which is causing left-side neck, head, should, and the upper back of the arm pain.  It isn't intolerable, but the headaches and shoulder get pretty bad and I can barely turn my neck to the left.  So, hello PT twice a week because I totally have all the time in the world for that.  

Thank you everyone who offered up prayers, good vibes, positive thoughts, etc after my last blog post.  I would very much appreciate if you would continue to think of Ellie Bear.




Thursday, March 7, 2019

Ellie Bear Fashion Through the Years

I think it is time for us to do a fun post!  I was going through some photos the other day and came across several where Ellie was wearing various outfits as a way of expressing herself.  For people who have been following the blog for a while, do you remember the multi-headband stage?  

Her latest, which I do not have a picture of, is wearing a medical mask.  I had to explain that one to school.  Her bus aide has been wearing a mask as means to prevent catching the flu.  Of course, the Bear thinks it is a fashion statement.

I wish I had a picture of the time where she wore a nightgown, leg warmers on her arms, and fireman rain boots. . . to Top Notch.




The year of the Chewy Tubes
How sassy does she look with her hand on her hip?





Not pictured - when she pulled leg warmers over my socks



She went through a hat phase

















Friday, February 22, 2019

Self Harm and Emotional Rollercoaster: Pediatric Psychiatric Illness

Things have been quite stressful and chaotic over here to the point where I feel exhausted and really need break.  To see my child struggling and not being able to help her is devastating.  I am begging you readers for any advice that you can give me - you can respond in the comments section.

I know that mental illness is something that is not often discussed and that there is a major stigma, especially when it comes to mood disorders.  I write about these issues so that people can become more aware and so they may feel like they are not the only parents out there caring for a child with mental illness.  We all need to support other as it is so easy to feel alone.

She has 8 barrettes and bows in her hair.  She is fashionable like that!


Out of all the random medical issues that Ellie has, the psychiatric stuff is the worst and most stressful.  Being developmentally delayed and mostly nonverbal makes it difficult to know what is going on in that head of hers.  A while back she was diagnosed with a "mood disorder related to general medical condition", but let's just call it what it really is - bipolar disorder.  After an extensive google search for Down syndrome and bipolar, all I found was that there is a significant decreased incidence of mood disorders within the Down syndrome population.  Yippee! There is a strong history of bipolar in my family so there was always the chance that she would have an Axis 1 disorder (depression, anxiety, mood d/o).  To be truthful, I feel like the significant adverse reaction to Vyvanse turned on the gene and triggered this brain change in her.  Add in the fact that both the  neurologist and psychiatrist have determined Ellie's case to be "complex" as she has atypical responses to the typical medications used to treat ADHD and bipolar disorder and an odd way of metabolizing medications.  I mean, of course she is complex.  That is her thing.

I think we wore her out


For the past two weeks, Ellie has been extremely emotional in the mornings.  She may wake up crying and trying to lock herself in her room (a bit of humor: the lock on her door is on the outside so that she can't lock herself in. However, she thinks by pushing in the button before shutting the door that we can't get in) or in the bathroom.  There doesn't appear to be any trigger.

After her morning medications of Adderall (ADHD stimulant) and Trileptal (mood stabilizer), her mood is more stable and her ADHD is well under control.  She takes a lower dose of Adderall late morning, but I do not believe it is a high enough dose as her hyperactivity and impulse behaviors comes back full force.  

Immediately upon getting off the bus in the afternoon, it is like a switch has flipped.  She is extremely hyper, impulsive, oppositional and agitated.  For the past few weeks, if I tell her "no" she screams, cries, and kicks me.  Occasionally, she shoves my face away and has caused me neck pain from the force.  Afternoons and evenings are the worst for her aggression, defiant behaviors, and anger, but then after getting her bedtime dose of Trileptal, she seems to do okay for the bedtime routine.



On Wednesday evening, I saw something that I have not seen before - self harming behaviors.  We were at horse therapy and we told her that she couldn't use a certain horse saddle.  She started to scream and cry while using her fists to hit her head and face and then bit her hand.  Afterwards, she wanted a strong hug from me while crying.  This is not normal behavior for her, even with her psychiatric issues.  This scared me because she could have really hurt herself. 

I have been in near daily contact with the neuropsychologist this week and we determined that she is having trouble regulating her moods and emotions (think a mixed state of both mania and depression) and then she is having rebound ADHD after the stimulants wear off.  Med changes are tricky.  We can only change one medication at a time and I have to do them on a weekend so that I can observe for side effects.  We had to change her blood pressure medication so the psych med adjustments had to be delayed.  We have discussed a few options and we now have a plan in place.  I am hopeful that we will eventually find something that will help her, but I am worried about how long it may take.

My heart breaks for her and I am asking for prayers, positive vibes, and good thoughts so that we may get through this.  I can have my Ellie Bear back.

We are hoping that this mini trampoline will help Ellie.





Caregiver Woes with the need to live forever and Fun in the Sun

I am a hot mess over here.  I do mean that in the metaphorical and literal sense in that it is hotter than Satan's. . . oh wait.  Kid...

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