Month: March 2018

Family · Self

The Last Part… To Be Continued Pt. 3

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When my phone rang on a very windy, snowy weekday I expected to hear my son on the other end crying or begging me to come.  It wasn’t.  It was one of the therapists telling me they were going to discharge my son from the program. What?  It was only five days! We removed him from another program track to get him into this one. I have no place to put him.  So my husband drove the hour to go pick him up in a winter snow storm.  Two hours later my son was home.

They told us he did not have an eating disorder.  We couldn’t believe it. All the previous therapists told us how sick he was.  This facility said that although his BMI is less than 15, his weight is in the 50th percentile.  So he doesn’t qualify for weight restoration.  In addition, they said they were doing more harm to him than good.  His anxiety and depression ramped up lot.  He was still talking about suicide. They felt he would only be more damaged if they continued.  So he is now home, not in school.  I have been rushing to try and find a new place for him.  He really hasn’t had enough therapy to make much of an impact. I feel like we wasted more than a month for nothing.  It didn’t help him one bit.  So frustrating!

I immediately got him on the wait list for the last PHP (Partial Hospitalization Program) he was in.  There are over 20+ children a head of him.  He may not get in till summer.  In the meantime, he is not in school.  So I have him seeing his regular therapist twice a week and his psychiatrist every month.  We are also once again changing his medication.  As of tomorrow,  he will be on his third med so far.  I hope this one works. We are a bit desperate for something to work.

I have also contacted his school district about enrolling him in his school. We are trying to get him home bound instruction now.  It’s where a tutor will come to the house to help him catch up. He is behind since January.  I hope we can get him caught up.  Fortunately, he is very intelligent.  The classes that matter are Math, English, and Science.  So those we will be working on.  Getting home bound, they told me takes time.  I just want to pull my hair out.

I will be meeting with some teachers and advisors from his school to discuss his IEP on Tuesday.  I will have to see where we are then. I also need to get tutors for the summer.  I also need to make sure our therapy is the best it can be. So much to do with no clear direction to relief.

 

Family

To Be Continued, Part 2

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When we drove our son up to the inpatient hospital he was okay.  I don’t think he could comprehend what was about to happen. Upon arrival, they informed us that they were running behind schedule.  This would turn out to be a huge problem.  Our son would get so overwhelmed that he would have major meltdowns.  We were there for over 5 hours.  During that time, my son cried, dry heaved, screamed, grabbed me and begged me not to leave him. He kept crying saying “Mom, don’t leave me, I can’t do this without you. I need you.”  It killed me.  It was so painful.  I felt absolutely horrible.  I just didn’t know what to do.  I pride myself on always knowing what to do.

I went to visit my son everyday.  My heart went out to the other children on the ward.  I would go days without seeing another visitor name in the sign in logs for the children.  I realize other families have responsibilities and children.  I just thought I would see more visitors.  Every time I went, “E” would beg me to take him home.  He had great difficulty participating in the groups they did.  Each day before I came “E” would call me crying asking me when I was coming up.

Finally after ten days he was released.  From what I understand people are released when their insurance runs out.  We questioned them, (the doctors) about this once they told us that insurance was not going to pay.  They assured us he was fine. I didn’t quite believe them. However, I saw no indication my son was improving, so we decided to take him home.

The doctors advised us that “E” has an eating disorder. I have for years tried to get my son to alter his eating habits.  He doesn’t eat fruits or veggies.  He has sensory processing disorder. Food and dress are his biggest areas of problems.  If you try to force him to eat he will vomit or gag the food.  He will also just not eat at all. If his food has spices he cannot eat them, the spices must be taken off. His food cannot touch, he needs separate plates and utensils.  I had tried for years to get his food issues fixed to no avail.  So when they said he had an eating disorder I thought, ” finally”! They then sprung on us a new inpatient program.

They said that he would have to go to a three week in patient eating disorder clinic.  I resisted a bit saying I thought it would be outpatient.  My son is only 11, how is he going to handle three weeks?  The doctors told me he was very sick.  They said his BMI had him ranked as malnourished.  I guess anything under 15 qualifies for that. So within a few days I drove him to the new facility.

The intake was so long, my son cried and screamed and begged not to stay.  While this was a much nicer place than the lock down facility, it still wasn’t home. In addition, all the kids there were so much older than my son.  He’s 11.  The next youngest was 14.  His roommate was 17.  It was another day of mental, physical, and emotional exhaustion. While leaving him at this facility was slightly better than the lock down facility it is a lot for a young child to deal with.

Unfortunately, the next day I came down with an illness and could not go to visit him.  He would call me daily in tears and crying begging me to come visit him.  I really wanted to.  The illness I had would be detrimental to kids in an eating disorder clinic.  I couldn’t risk passing this along to others. Then six days later I get a phone call…..

 

Family · Self

What’s going on.

nschristineLeave a comment

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Hello Everyone,

I am sure you are wondering if I gave up on my blog.  No I haven’t but outside circumstances have put a temporary halt to things.  Let’s see, as many of you know our home remodeling from hell has finally ended.  The last day of construction was in December.

Also in December I had a breast cancer scare.  I had a routine mammogram in early December.  The results came back with some specious lumps.  Since I get breast cancer from both sides of my family I pay attention to my health in this area.  So I went in for an ultrasound right before Christmas.  Once lump came back as a cyst, the other lump was undetermined.  So I would next have to go in for a die contrast MRI. The day before Christmas Eve I went in.  The results would not be back till after Christmas.

It made for a rough holiday season.  Luckily, the second spot was another cyst and I was given the all clear.  Whew!

The biggest source of stress has been my son “E”.  Normally, he is the most kind, gentle, bright, shy and happy child.  During this past summer this started to change a bit. We figured that he was going into junior high school (so getting older, teen angst) and with all the home construction stress, he was just moody.  When school started, he was under a lot of stress. Normal right?  In many ways he was also better.  He seemed to be more responsible and his ADHD was better managed.  His grades were high too.  While a lot of his friends didn’t go to that school, there were a few that did. So he wasn’t completely alone.

As the year progressed we noticed him becoming more and more anxious. He started to get ill and began to miss school.  He was getting difficult to wake up.  He was starting to cry, shake, and have meltdowns.  It was like someone flipped a switch on his personality.  He has his first panic attack in the Fall. I knew right away what it was.

I took my son into his pediatrician to get him started immediately on medication. He also started seeing his therapist more often.  I was able to get him some accommodations at school for his anxiety too. Unfortunately, he started to self harm.  As the desire for self harm began to increase we removed him from school and enrolled him in a PHP.  PHP stands for partial hospitalization program.

“E” would attend the PHP from about 9-4 Monday-Friday.  Then he would come home on nights and weekends.  At PHP he would receive therapy, medical treatment, and schooling to help him overcome his anxiety and depression. He attended for several weeks when we received a phone call from the staff psychologist saying “E” was very suicidal. The decision was made on advice of the staff to place my son in a 24 hour lock down facility for adolescents.  It was the hardest decision I’ve had to make.  I knew it needed to be done. However, now I look back and question it a bit more.

To be continued…