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Saturday, September 11, 2010

Seroxat Sufferers Readers Stories: Lola's Story

Over the course of the next few months I am going to be working hard with my book editor. Editing work that has been read a thousand times over is a laborious procedure but one that has to be done. It means that I will be spending less time on here and more time editing and preparing my manuscript for print [should be November time]

I would like to keep this blog active so decided to give you, the reader, a chance to tell your story.

Here is the first of those stories sent in by Annie

Send your articles to me at fiddaman64@blueyonder.co.uk

More info HERE

LOLA'S STORY

I'm Lola, of Lola's Diner blog. Both my ex-husband and my daughter have been on anti-psychotic medications, both initially for psychotic breaks.

They say a psychotic break often comes after extreme life stressors. In my daughter’s case, a month before her break we had a tornado touch down on our block. A week after that I began having health problems for which I went to the ER several times. I was hospitalized several times and was scheduled to have surgery the morning of my daughter’s psychotic break. Her behavior that morning was bizarre and she was saying things that didn’t make sense. I was sure that this was a psychotic break, even though I never actually saw the beginning of my ex-husband’s break. I had read so much on the internet and read so many books on mental illness, I had no doubt what was going on with my daughter. My ex partner had gone to work for a couple hours, then would take us both to the hospital. While my ex partner was at work I called my doctor, the children’s counselor, the school counselor. I desperately wanted someone to tell me I was wrong, but they all came to the same conclusion.

My daughter was evaluated at the nearest ER. As time passed, her conditions worsened. She went from confused thoughts to a flat affect, catatonia, poverty of speech and was literally in abject terror. She was transferred via ambulance to a hospital with a pediatric psychiatric unit. We later learned she was having horror movie type visual and auditory hallucinations. She also had extreme paranoia about the hospital food. She refused to eat and would only do so when coaxed. It literally would take 3 hours to get her to eat 1/2 her meal.

She had numerous hospitalizations, each one trying a different drug cocktail to lessen her symptoms. Initially, she was put on Abilify, but she suffered from low blood pressure on it. Seroquel was tried briefly in a small dose, but even with the small dose she could not get out of bed until after lunch time. Next was Geodon. This helped rid her of the hallucinations, but caused extreme weight gain. Eventually that stopped working and Xyprexa was tried next. Again, extreme weight gain and it eventually stopped working. She is currently on Depakote and Risperdal and has been on them for about 2 years, with the doses being tweaked periodically. Again more weight gain. She has literally gained 150 pounds on these medications.

After the onset of her illness it was 3 months before she began holding conversations with staff and with us. Prior to that, she didn’t speak, or only spoke in one word answers

At one point her medication began working too well and she became manic. She didn’t sleep, talked so fast that the words were unintelligible and had to return to the hospital for a medication change.

She had symptoms involving extreme anger and confused thoughts. Her responses didn’t match situations, and she became inappropriately angry and she had become physical.

I have to say that we are so much more fortunate than some of the other families we met during my daughter's hospitalizations. Some of the children had issues with illegal/street drugs and alcohol, complicating their mental health problems. Some children had attempted suicide. Other children sadly didn’t come back from their psychotic breaks. There was one young man who was an honor student and played several instruments in the band. He was quite an accomplished musician according to his proud parents. The poor couple was shell-shocked and having had such a similar break to my daughter’s they befriended my ex partner and I. Their son had poverty of speech, catatonia and hallucinations. When we left, hospital staff were talking to them about a residential facility for him. So sad.

Most parents have to deal with normal teen angst and rebellion. To some parents even that can be overwhelming. To have a child with a mental illness on top of the normal teenage stuff is very hard to deal with. It’s like teenage angst and rebellion to the nth degree.

Whenever there are issues, you as the parent have to step back and ask yourself, is this normal teenage stuff, or is this the illness? If it is the illness, then you seek medical attention. If it’s normal teenage stuff, if you can’t handle it yourselves, you seek help from your child’s counselor. Sometimes it’s impossible to tell the difference. Sometimes you walk on eggshells for weeks waiting for a medication change to take hold or for her mood to change. If her illness flares and she’s defiant, sometimes as the parent you have to back off on what the normal household rules are.

My son knows his sister is ill. Intellectually he knows it. Emotionally he finds it hard to take. He can tell when her illness is flaring and when she’s completely “off”. Sometimes he’ll try to talk calmly to her to try to get her to comply or calm down, but most of the time it doesn’t work and he gets very frustrated. He can’t understand why she can’t go back to “the way she was”.

If you’ve known someone prior to a psychotic break and then after the break, you know the person after is "not the same person". Something is missing. Look into their eyes, and you’ll know what I mean. I don’t know if it’s the result of the break, the medications required to treat the break, or both. I can look at photographs before and after and see the difference. The difference is tangible. They may come close, but they will never be the same. It's a very difficult fact to face.

From time to time people ask me how she's doing? My reply is usually that she's "different". Not better, not worse, just "different" because she often exhibits different symptoms.

Advocating for my daughter has been tough. Initially she was home schooled during hospitalizations, awaiting an IEP meeting. The school continually led me to believe she was going to remain in regular school. It was very frustrating. "Least restrictive environment" is their mantra. (Also, meaning "least expensive" for the school district.) In the end, she was referred to a special behavioral school.

After losing my insurance and going on medicaid, hospital visits became extremely frustrating. I was constantly in contact with the staff and constantly battling to have her hospital stays extended or advocating for partial hospitalization programs. Rather than hospitalizing her for medication reductions, they wanted to discharge her and do them at home, which could be dangerous, both for my daughter and other household members. It was a constant battle.

Today my daughter is is still at the behavioral school, still on medications and is currently free from hallucinations, but is struggling with poor hygiene and depression.

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Fid

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'THE EVIDENCE, HOWEVER, IS CLEAR...THE SEROXAT SCANDAL' By Bob Fiddaman
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