Nothing is ever simple. Not even ear infections.

The unfairness of special needs life

 

Bipolar Girl May 2013

 

For the record, this is not an intellectually-based, change the world type of blog entry.  But that doesn't make it any less important.  This is a blog entry about today.  About Friday the 28th, which happens to be six days before the ninth birthday of a beautiful child that I prayed for before she was even conceived.  When I took my daughter, Bipolar Girl (bipolar/LHON/ADD/pediatric migraines with aura/etc) to the Pediatrician's office because she had been on antibiotics (oral and ear drops) for a week and was still experiencing ear pain.  Our regular pediatrician was busy, so I accepted an appointment with the Certified Nurse Practitioner (CNP). 

 

I think it's important to note, as I cruise social media and am dazzled by all the highly polished blog entries written like doctoral thesis that those are important and absolutely belong in the world of advocacy for special needs.  The parents, caregivers and educators in the special needs world are well-educated and have a passion for this life that few other fields can claim.  I am proud to be represented by well researched, inspiring articles and blog entries that showcase again and again both the beauty and the curse of parenting and educating special needs and autistic children.

 

But this isn't one of them.  Today, I am not a polished writer who has a social theory about autism or special needs that will change the world.  Today, I'm the mother of a medically underweight almost nine year old who had a visit at the Pediatrician's office that neither one of us will ever forget.  The CNP and I talked about her ear infection symptoms and how she had been on strong antibiotics for a week.  I expressed my concern about the infection seemingly not clearing up, her pain, her nausea from the antibiotics and how I thought it might be moving to her chest due to a lot of coughing at night.  My daughter was examined and her ear infection is being resistant to the antibiotics.

 

Then the CNP sat down and asked me about the coughing - did it happen only at night, what did it sound like, etc.  When I inquired about the line of questioning, she explained that my daughter's chest sounded perfectly clear.  She brought up my daughter's online medicine list and said that perhaps we needed to schedule an asthma check-up to make sure her symptoms were controlled.  I corrected her and explained the steroid medications she was seeing were from the croup this past winter and I had repeatedly asked the staff to remove them from the active list.

 

"So your daughter isn't diagnosed with asthma?", the Nurse Practitioner inquired.

 

"No.  She never has been.  Her brother has an asthma diagnosis, but I never saw those symptoms in her." I explained.

 

The CNP explained that my daughter's strong allergies, a sibling with asthma, the coughing so strong it was waking her at night and more indicated the need for asthma testing.  I agreed, on one condition.  We had to be worked into today's schedule.  I knew that between my anxiety and my daughter's constant worrying about developing more health issues that we couldn't take waiting until next week.  The CNP recognized the strong anxiety in both of us and worked with the staff to allow me time to take the children for lunch and bring them back to test my daughter.  My daughter is emotionally and physically challenged, but she's a very smart young lady.  She immediately began questioning the testing process, what treatment would be like, would her activities be restricted.  I played it off as a small chance that she would even test positive for asthma and calmed her.  Inside, I was furious with myself.  I had had the flu for the past week and hadn't woken for most of her "coughing fits".  Nighttime coughing that wakes the child is a huge indicator of asthma and I had failed my child.

 

 

 

We returned after a stressful lunch and immediately began testing.  I knew my daughter's tests results before the CNP gave them to us.  My daughter could barely blow into the tube both before and after being administered the albuterol to open up her lungs.  We moved from the testing room into an exam room and I tried to quickly work out how to handle my daughter.  The CNP entered the room and Bipolar Girl immediately launched into demanding questions about her results.  I begged the CNP's forgiveness for what I was about to say, then asked her to be careful how we discussed these results.  I explained my daughter was intelligent and I would not withhold information from her - but she needed to digest this information slowly and calmly in order to prevent a mental health crisis.

 

I found the CNP to be a very kind, educated woman today who took the time to explain the symptoms and results to me today to any extent I wished to know.  Before we left, she informed me she had checked with the office manager and our service-dog-in-training will be allowed to accompany my daughter on any future visits that I feel the dog is necessary to stabilize my daughter.  That was when I started crying.  I haven't quite quit yet.

 

My daughter is afraid.  She's afraid she won't be able to breath, afraid she won't be able to run around in the backyard or go hiking as we have in past years.

 

I'm afraid.  I'm afraid that the diagnosis will never stop.  I'm afraid as my children age that they will be burdened, both mentally and physically, by more and more disease and depression.  I'm afraid for my children as this divorce progresses.  I called my estranged husband and explained both the diagnosis and how upset my daughter was to him.  He choose to go play cards tonight rather than come comfort her.

 

Sometimes, we need stories from the special needs/autistic world that are raw, painful and powerful.  Writers like myself should feel comfortable allowing the world to know that we spent the day holding our child, praying for the best and angry at a world that has been working on medicine for thousands of years but hasn't healed our children yet.  For all the wonders in this world, today my daughter can't breath.  And that is simply unacceptable.

 

Resources:



http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001985/

 

http://www.aaaai.org/conditions-and-treatments/asthma.aspx

 

http://www.med.umich.edu/yourchild/topics/chronic.htm

 

http://www.jhsph.edu/research/centers-and-institutes/johns-hopkins-primary-care-policy-center/Publications_PDFs/E66.pdf

 



A message to those against Stem cell and genetic medicine for humans

 

 

 

I have a right to choose my life and so do my children

 

 

 

 

As the mother of two special needs/autistic children who writes for a newspaper, an online website: Dandelionmomsdotcom Special Needs Parenting Section  and her own blog - I feel the public needs to understand that when our children are initially diagnosed, it doesn't stop there for every family.  At least not for our family.  Genetic issues and more diagnosis just keep coming as my children age.  Today I'm dealing with a very upsetting situation with one of my children.  I don't have enough information to know the outcome yet, nor am I ready to speak about the details.  However, I can tell you this - whatever diagnosis the Dr. decides upon, I already know from the symptoms it's genetically based.  And I already know it will be a lifelong, incurable condition.

Readers of this blog need to know that it will vary from my writings from the other two publications.  I'm going to be less politically correct, not every story will have a happy ending and sometimes I'm going to be downright snarky and probably a Righteous Bitch.  And I dare the "Neurotypical" who has the perfect suburban house with the white picket fence, the honor roll student who plays football, runs track and baseball in the summer to tell me I don't have that right.

I have a request for the public and lawmakers.  If you oppose Stem Cell research or genetic medicine for humans - please be a guest at my home for two weeks.  I'll clear out a spare bedroom for you and prepare you gluten/oat/corn/preservative/food dye free foods while you watch me struggle to manage to pay for medications or choose groceries instead this week, juggle phone calls with multiple specialists/school administrators/pharmacies and my personal favorite - the collection agencies.  My estranged husband works full-time for the Federal Government.  I worked full-time also until about two years ago when my daughter was diagnosed with LHON (Lebers Hereditary Optic Neuropathy and we were told she would go blind within a year.  We choose the highest option of health insurance plan we were offered and with two special needs children and their medical needs are looking at bankruptcy as the only solution.  LHON is a mitochondrial disease which means my daughter has a 98% chance of passing along a gene that causes permanent incurable blindness to her children or the decision to never know motherhood at all.  The same genetics apply to the convulsions, the migraines with aura that cause her to go blind for 2-8 hours at a time, the food intolerances that cause gastrointestinal issues and a variety of rashes/breakouts and dandruff.  While I was never the perfect wife, none the less I am now another statistic in the estimated 60-90% divorce rate of families with special needs children.

You can also observe me in the role of both medical and psychiatric evaluator as I never know what the day will bring.  Will their bipolarism be rapidly cycling and it will be a non-productive day just trying to deal with the dual personalities?  Will my autistic son who cannot perceive pain like you and I get aggressive and violent because he developed yet another ear infection despite my campaigning with multiple Drs. to put in ear tubes? He's currently ten years old.  This is the first year he's knocked me down with his aggression.  I knew the time was coming.  What will I do when he is 14 and breaks my arm, which will be easy since I suffer osteopenia?  Should I have to suffer institutionalizing my only son because some in our world don't believe in stem cell and genetic medicine?  Autism, ADHD, bipolarism and LHON are all rooted in our genetics.  Stop forcing us to shove 50 pills down our throats a day and let us decide on an individual basis if we wish for a different life. Perhaps I'll spend an hour on the phone with the psychiatrist debating the pros and cons of different mood stabilizers and anti-psychotics.  Then there are the endless trips to the lab for bloodwork to ensure the 101 daily medications aren't affecting liver functions or thyroid levels.  My daughter's bipolarism is so strong it dominates her life.  She is unable to cope and and sits on the floor banging her head and pulling her hair without lithium.  But again, there was a price to pay.  Lithium has a well known side-effect of causing thyroid issues.  So my daughter is sentenced to a life of both daily lithium and thyroid medicine.

This isn't a post about myself as a mother wallowing in self-pity.  My children will do things those "neurotypical" mall-rats & prom queens/kings will never accomplish.  My daughter independently started studying Latin at age 7.  She's attending every writing camp the local literary center offers and has filled pages with her poetry.  Her latest painting was quite remarkable, although I admit the obvious bias.  My Asperger son can look at a structure like a bridge or framing and tell you how it was built and why certain materials were used.  Sometimes he finds flaws and comments the structure will never last. His interest in robotics is remarkable.  He begs me daily for the latest Lego Mindstorms Version and the various add-on sensors - not an option on a budget choosing between medicine or groceries.  I KNOW my children are destined to accomplish greatness in life. 

But at what cost?  We write articles and throw pretty little signs around Facebook about how Einstein, Jefferson, Newton and so many more were probably on the autism spectrum from what we know of their lives through history.  Yet didn't every one of them suffer in some way?  Genius comes at a cost.  And not all of us wish to pay it.  Furthermore, the few names that get tossed around are just a fraction of a percent of the population of people on Earth who suffer from autism, adhd, bipolar, depression, psychosis, etc.  Very few of those who live a life carrying these burdens ever  luck upon greatness in the history books.

Am I actually calling for the genetic recreation of the human race?  Yes.  For any other reasons I would never support this radical idea.  But the bipolarism I suffer along with both of my children is not due to a lack of lithium in our bodies.  Yet we must shove those pills, along with many others down our throats our entire lives and endure the ups and downs of major depression and a 20% suicide rate.  The Mighty Drug War the U.S. Government has been fighting for more years than we can count and spent billions of dollars accomplishing nothing?  The majority of those drug users are self-medicating some condition, some pain in their life like depression, bipolar, psychosis, etc.  Stop wasting billions of our tax dollars and HELP THOSE PEOPLE!

I understand my article is proposing a radical approach to a large segment of the human population.  But if society does not allow those of us who suffer every day of our lives with these intolerable conditions (and many of us have multiple diagnosis) - then it is YOU who are the true monsters.  Society must allow each human individual the right to rid themselves of the demons rooted in their genetics so that the playing board of life is level.  If society does not, you have sentenced us to a life of low-paying jobs, inability to keep jobs, high divorce and domestic violence rates, higher suicide rates and more.  Think long and hard before you decide that millions should be sentenced to a life of poverty and a servant sub-race.

As a mother and a human being, I demand that my children and their children be given an equal chance to create a life of happiness for themselves.  Anything less is not acceptable.



Resources

 

 http://stemcells.nih.gov/Pages/Default.aspx

 

http://stemcells.nih.gov/info/basics/Pages/Default.aspx

 

http://www.studymode.com/essays/What-Benefits-Can-Be-Derived-From-1775215.html

 

http://ghr.nlm.nih.gov/handbook/therapy/genetherapy

 

http://www.nature.com/gt/index.html

 

http://www.mayoclinic.com/health/gene-therapy/MY00105

 

http://www.sciencedaily.com/news/health_medicine/gene_therapy/

 

 

 



A beautiful bipolar pixie who breaks my heart, every single day

 

 

I had to begin somewhere....

and she said the most amazing words.

 

 "Mom, can you look at the braille work I've done and tell me what you use to get it to raise?  I heard the most amazing phrase on Numb3rs! 'Zombie with a gun.  Waiting for words that will never come.'"  This is what my 8yr old Bipolar/LHON/ADD/Anxiety/Possible Aspergers but no one can ever agree/Pediatric Migraines with aura daughter (Bipolar Girl) greets me with as she bounces into my room. She hands me index cards that she has carefully written letters on and above them a very painstakingly copied series of braille dots from a list she printed off the internet.  An interesting set of behaviors from one 8 year old child, I know. I explained to her that to make it actual braille we would need an expensive braille labeler.  Last week I walked past her doing a word find with the word HIPPOPOTAMUS.  She had written down 'mus', as a word.  I tried correcting her and she informed me it was Latin for mouse.  I looked it up.  She's right.  As to her fascination with "Numb3rs", she gets very OCD about t.v. and books.  She insists on science-fiction or crime-dramas that feature extremely smart male figures, like Charlie the math prodigy in "Numb3rs" or Dr. Rush in "Stargate Universe".  Then she talks about them incessantly and drives all of us in the house stark-raving mad (most of us are already there, but still!). 

 

Bipolar Girl has Leber's Hereditary Optic Neuropathy (LHON).  She's lost enough of her sight to be classified visually impaired.   We're currently training one service-dog-in-training that we rescued from the local shelter, Tinkerbelle, a black lab mix sweeter than molasses.  The children and myself all qualify for a service animal.  So it's uncertain who this point who will benefit most from Tinkerbelle and who will benefit from near future dog/puppy choices.  We wish to train them very close together.  I also believe the dog has lifted the depression and doom atmosphere began by the beginning of The Divorce.

I'm also not sure whether the animal will better serve her as a traditional service animal (depending on how her experimental vision treatment, Idebenone, continues to work long-term) and the fact her bipolarism is extremely strong.  When she's in the moment - she puts that little girl with the spinning head in the Exorcist to shame.  Evil.  Stress is her main button.  State standardized testing this year made her suicidal.  I'll tackle that issue in another post.

I've said all these words, but realize I haven't really described my daughter at all.  She's extremely intelligent according to standardized testing and has huge blue eyes framed by black lashes as big as paint brushes.  She started struggling somewhere between ages five and six with depression and rapid mood swings.  She started throwing herself on the floor, banging her head and pulling out her hair to cope with the stress while she begged me for help.  She loves poetry.  At six, she made me buy her a $35 hard-backed volumn that I knew I'd regret.  I never did, she reads it frequently to this day.  I love her more than life itself.  It would be an honor to take a bullet for her.

I fear that my beautiful, passionate daughter who is now beginning to write her own poetry is being ignored by the world.  Bipolarism just doesn't get the press other disorders do, but I assure you - it's terribly disabling and terrifying.  You are trapped in a brain full of negativity and depression, unable to understand or figure out how to help yourself.  Many adult bipolar patients are misdiagnosed for years, sometimes decades.  Even childhood patients who fit the profile usually are diagnosed with an "Unspecified Mood Disorder", because many experts in the field feel hesitant to rush to a bipolar diagnosis.  It terrifies me to watch her rapidly-cycling between hysterical giggles and throwing household items across the room screaming like a mythical creature.  I'll spend the rest of my life fighting for my daughter's quality of care and a cure for this insidious disease.  I won't allow her to fall into it's black pit and never return.  The suicide rate for bipolarism is 20%.  My daughter won't be the one in five who succumb.

Please support my calls that more attention, research and money be put towards Bipolar research, both adult and pediatric.  Contact your local and national representatives in legislature to let them know this terrible disease has destroyed the life of too many beautiful, bright-eyed children for too long. Call and write letters.  Start internet petitions.  Let's raise a little hell, people!

Resources:
http://www.internationalbipolarfoundation.org/

http://www.dbsalliance.org/site/PageServer?pagename=home

http://www.nlm.nih.gov/medlineplus/bipolardisorder.html

http://www.bipolar-foundation.org/

http://pendulum.org/support/support_organizations.html

Finally, a research study!
http://patientinfo.nimh.nih.gov/BipolarDisorderPediatric.aspx