Tag Archives: support

Trust takes time

Last year was one of the most difficult years of my life with Bridget. The diagnosis of catatonia came with an inpatient drug treatment, followed by almost 8 months of titrating drugs up and down, adding medications, weaning off medications and having to trust the medical professionals that they knew more than I did.

In Massachusetts we had a tragedy a few years ago where a mom murdered her three children and then attempted to kill herself. Her case is currently underway in our Courts and being played out nationally on the news and social media. I have been hesitant to “join the bandwagon” because her case is currently a criminal case, not a civil one.

I am not writing about her guilt or innocence. I am not writing about if she was criminally responsible or not due to mental illness.

I am writing because the some drugs Lindsay Clancy were on are the drugs that Bridget was treated with over the past 14 months. The drugs that had me pulling over on the side of the road, because Bridget was so out of control that she was ramming her head against the side window of the car.

The drugs that had her shouting she hated me, while also hugging me. The drugs that due to her medical condition, we did not know if it was the drugs or the condition of catatonia, combined with an intellectual disability, combined with being quasi-non-verbal, combined with autism and PACS1 and puberty emerging.

There were many instances during that time period, when brought to tears, I questioned what I was doing to my child. Maybe it would be easier to let her slide into catatonia and her own world rather than fighting to stay in mine.

The difference between Lindsay Clancy and Bridget are vast. Lindsay could verbalize how the drugs where effecting her, how they were making her feel and to advocate for herself. With Bridget, I had to go on behaviors. The tears for seemingly no reason. The balance issues. The up all night stimming versus the inability to wake her up because she was so snowed. The vacant stares versus the hitting her head on the floor.

The similarities between Lindsay Clancy and Bridget are also very minute. Both have a mental illness. Both were (are) being treated with selective serotonin reuptake inhibitors (SSRIS) and benzodiazepines (benzos). Both had strong family advocates, crying for help for their loved ones. Both had to trust their healthcare providers to stay the course, to trust that the doctors knew what they were were doing.

The devastating factor that is the biggest difference is I could trust Bridget’s neurologist because we had been under her care for 16 years. When she diagnosed Bridget with catatonia, she did not just transfer us to psychiatry, but took time out of her day to go to the appointment with me. When Bridget was hospitalized, this neurologist visited her in the hospital to make sure she was okay. When the effects of the drugs were more than we could handle, we had trust in her team because they knew her.

This is the heartbreaker, for me, about Lindsay Clancy. Her team did not know her, she did not know them so she did not trust in their treatment of her. Her team let her down, because they (per testimony) never consulted or spoke to one another. They did not review one another’s medical entries. In the world of electronic records, this is mind boggling. They had to trust what Lindsay was reporting to them, of course, but they also should have provided the extra care Bridget’s neurologist showed, but talking with the other treating providers. I honestly believe, if it was not for Bridget’s neurologist, her psychiatric team may not have trusted what I was telling them.

I know, in my heart of hearts, I would not have trusted the psychiatric team if I did not have trust in her neurologist.

There are those that look at this case as “doctor shopping” or not following through with the prescribed plan of care. I want to shout at everyone that until you live through what medication and mental illness does to a family, you need to listen to this case and to the entries in this woman’s diary. Lindsay was crying for help (in my opinion) and seeking care from anyone who would listen to her.

Just as I did, in the beginning of Bridget’s catatonia. I went to her pediatrician, I went to her gynecologist and to her school team. Not ever thinking that she was having a mental disease, I asked her pediatrician to if she could consult with Bridget’s neurologist, and thankfully there was no ego involved. Instead, the pediatrician but a call into neuro that day. When neuro called back and our pedi was in with another patient, she allowed herself to be interrupted to take the call. We had a team working together, not working as individuals.

I firmly believe, that Bridget’s care was successful because she has a rare disease and has been in multiple specialist’s care since birth.

Had she not? Had we not been entrenched with Boston Children’s Hospital for 17 years? Had I not had faith in her current team to consult with psychiatry? It is not blind faith, when Bridget needed spinal surgery, I got a second opinion at another facility. I have always questioned the therapists, the school system, the pharmacy and the doctors when it comes to Bridget’s care.

It is because we had a history with providers, that we were able to trust in the treatment.

Yes, there was tears, some days too much wine and whining on my part. Yes, there were times I questioned if I was making the right decisions for my child’s plan of care. When I had to trust in those who have always treated Bridget with compassion.

But I have 17 years experience in living this life. Lindsay Clancy and her family only had months. Yes, she is a nurse, but there is a difference between living with disease and treating others with it.

We were lucky. It took almost 12 months to get the drug combinations to bring Bridget back to our world.

My girl, with love, patience and yes medications, is almost back to the girl she was before catatonia entered our lives.

Any of us can Monday quarterback or second guess exactly what Lindsay Clancy was experiencing during the months preceding that horrific night. I will never know what was happening in Bridget’s brain as we were finding the right mix of prescriptions and doses. She, to this day, is unable to tell me how the drugs make her feel. If when she was trying to jump out of the car, she had suicidal idealizations or when she screamed she hated me, she really felt that way or the drugs were making her lash out at me.

I’m just grateful I had trust in Bridget’s doctors that allowed me to question what we were doing but provided me the answers I needed to not lose hope.

Unless you love someone with mental illness, or live with it, hate that Lindsay Clancy murdered her children.

And be thankful that you have never experienced whatever she did that led to tragedy.

I had another post planned…

Today I was going to participate in the Finish The Sentence Prompt hosted by the fabulous Kristi of Finding Ninee and her friends Mardra  and Kenya. Instead I am sitting here with goosebumps, sick to my stomach.

We lost another person to Suicide, Anthony Bourdain. Continue reading →

Finding your way

When your child is diagnosed with cancer, mental illness, a Syndrome, ADHD, Autism, (put your child’s struggle here) or PACS1 a parents first thought is usually a variation of HOLY CRAP to what the heck do I do now?

The truth is, there is no road map to parenting a child who has more than typical needs.

  • Whether it is learning that your child is not suffering from normal teenage angst but a serious mental illness.
  • Whether it is learning that your child just isn’t making milestones but is seriously behind their peers
  • Whether it is learning the worst news a parent can receive, that their child may have a terminal diagnosis
  • Whether it is learning that your child has ADHD, something too many people think is a made up word for bad parenting
  • Whether it is learning that although you always fed your child healthy meals, that child is now bulimic or anorexic
  • Whether it is learning that your child committed a crime, even though they are a straight-A student
  • Whether it is learning that your child was killed in a drunk driving accident, even though they were sober in the car

When a parent learns any of the above (or worse), that is sometimes all they learn. They may be given a pamphlet of with website information. Their child may be placed on medication. Yet from this moment on, that parent is facing the battle to have their child survive without any clue of how to start. Continue reading →

We came, we shared, we joined together

I’m finding it difficult to put into writing. Go figure, here is usually where I just let it all out. Last weekend our family traveled to Virginia to meet our PACS1 family. The weekend should have been an absolute disaster. We had 14 families traveling from around the world.

One PACS1 family traveled from Australia. The trip with their 2-year old son took 36 hours and upon entering the lobby the poor thing suffered a seizure. Being PACS1 parents meant that while the dad checked in to the front desk the mom gave medication and handled the situation. I’m sure the front desk clerk almost puked in her mouth. But PACS1 parents continue on with their lives.

Another child began vomiting and had to be admitted overnight. Again, the PACS1 parents handled the situation. One stayed at Busch Gardens with the older sibling while the other parent handled the ER. Then they switched off.

The hotel messed up 5 of the 14 reservations. Again, some would have thrown their hands in the air and gone home. Not our PACS1 families. We traveled from 4 countries to be together. Three families traveled from Texas. One family drove from Michigan. Two families from New York and another two from New Jersey. A family crossed the border from North Carolina, while still another flew from Kansas. A newly diagnosed family from Ohio was lucky when one parent couldn’t make it a friend said I’ll drive with you and became our weekend photographer. Bridget met her new best friend from Tennessee. Families from the US, Canada, Australia and Spain. Oh and our family from the Cape.

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It was different than I had expected but so much more than I could have imagined.

It should have been an epic failure, but it was more awesome than I can fully describe.  Continue reading →

Want to change the world? Make it personal

Warning…I’m on a bit of a soapbox.

I just finished reading a book about WW2 (Escape from Davao). A quote from the book resonated in me as it applies to everything: Natural and man-made disasters, the horrors of the news, the treatment of our elderly, 9/11, Ferguson, police being killed, domestic violence, the drug war and (insert horrendous thing here). I honestly think words from 1944 are still true. Until it becomes personal,until we understand that WE must feel we cannot win.

“We’ve got to have the nature of this war drilled into us Day after day before we sense the whole horror of it, the demands of it, the danger if it….This War has not yet become personal with us…But if we hear the truth day by day … We’ll silence the babble, sober the feather-minded and fight like hell” (Palmer Hoyt page 332)

Continue reading →

TBT–Kaylee is determined to Pay It Forward

Today’s Throw Back Post is about my friend Kaylee. A girl who is an incredible hero. Once again she is participating in the Polar Plunge to support Comfort Zone. The camp that allowed her a safe place to grieve and to grow. Please consider to once again donating to her cause. No child should lose a parent, but if they do then they need places like Comfort Camps. Her plunge is coming soon, Feb 28, 2015. Given the current arctic winter we are having, I am hoping she doesn’t have blizzard conditions!

I am in awe of children. Children who want to make a difference in other’s lives. Whether it is a huge movement like Malala or providing comfort for another child. I would like to introduce you to a beautiful seventh-grader named Kaylee.

Continue reading →

It’s only 7 days old and 2015 is kicking our butt

On Dec 31st we all made resolutions: more me time, more patience, more living and (a favorite) to enjoy 2015 to the fullest. But it seems that 2015 is going to be very difficult to tame.  As a friend of mine recently posted: she is done with 2015.

For many of us 2015 hasn’t begun well. Back to school and back to Every Day Freaking Math. The amount of life changes in just 7 days seems overwhelming.  Friends have received deployment orders (so much for no more boots on the ground). Another special friend has suffered a tremendous loss. Still one more has lost their job.

Even Mother Nature is picking on us. Did I mention it was only 18 degrees this morning? Continue reading →

My Challenge: Kerri, yes me

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Today’s Challenge is one of my own. I have to admit I love the Christmas season. Not the season that starts the day before Halloween, but the true Christmas season that begins at noon on Thanksgiving day when Santa appears in the Macy’s Day Parade until the evening of Christmas Day when we sit around with our families and just connect.

Then I had children. Continue reading →

Name change

At the beginning of the summer we took Bridget to see a Specialist 20 hours away from our home in the hopes to find an answer to Bridgetitis. We had gone on a search for our own Dr. House. We allowed them to perform Exome sequencing, where Bridget’s DNA would be (in layman’s terms since I really am not a scientist) broken down and reviewed by computer strand by strand allows the scientist to discover where the gene may have gone awry.

We got the results. Finally. Continue reading →