Sunday, September 21, 2008

End of Summer Update

I've been absent lately and while I would like nothing more than to say that I am back on track and ready to blog regularly, that would be stretching the truth.

We traveled a lot this summer, really exotic locations. I started a few good books that I've been engrossed in and could not put down. Then we decided to finally finish the bedroom in our basement and worked really hard on cleaning out the storage room so it wouldn't be a fire hazard. Finally, I decided to put myself before the kids and concentrate on my own health.

Then I woke up. It was a nice dream while it lasted. lol

Life is rough at times. Life is good at times. The past few months have been filled with both scenarios.

During the summer we took Paige off of one of her mental health meds for her OCD. The doctor felt that the cognitive behavior therapy was working since she had almost completely stopped her skin picking. And, honestly, I wanted to believe it too. Why wouldn't I want that for my child? To be free of one med and free of oozing scabs all over her body was something we never thought possible. She worked so hard to stop the picking. When we made the decision to homeschool it seemed to lift so much of her anxiety. We are so proud of her.

We knew that there was a chance that her mood would suffer for a few weeks until her body got used to the med being gone. And, suffer it did. But, she still managed to audition for a play, get a role and attend every single practice-all without much anxiety.

When she would get crabby or appear to not be listening to her father and I, we attributed it to everyday stress. When she would explode and have major meltdowns, we guessed that it was the play or even simply typical behavior for a 9 year old. Yes, she wasn't herself but we were blind. Ok, now I'm not sure if we were blind or it was a case of ignoring what was in front of us because we wanted her to be ok.

When she started complaining that she wasn't feeling good at night, for a few nights in a row, we recognized what was happening. The OCD was controlling her again. We had forgotten all about these nightly battles. In the past she would demand that we take her temperature at bedtime because she was convinced that she was sick. When we would refuse to even feel her forehead she would start to meltdown, screaming hysterically. Every night. We all suffered for more than a year until she had started the medicine. Her doc told us that it was the OCD. He was right. On the med, bedtime was wonderful (as long as she has her melatonin).

After she had been off the medicine for about a month she started picking her skin again. She begged me to call the doctor so she could go back on the medicine. I didn't want to give in so quickly. I was still holding onto that hope. It was all about me and I recognize it. We put a rubber band back on her wrist and reminded her to snap it when she felt the urge to pick.

One more week passed by. The rubber band trick was not working. She was miserable. The OCD monster had her in its grip again. It has us all in its grip. The entire house was operating around it. The "thoughts" were back. THE "thoughts". The ones that used to cause us to lock our bedroom door at night.

One morning Paige came running into the living room screaming, "Please call the doctor. I can't take it anymore." The tone and pitch of her voice was something you would expect to hear from someone on fire.

I called the doc, fully expecting to have to fight for her. He didn't want her on the medicine long term and he made that quite clear during every appointment. I sure was shocked when he agreed, without any hesitation, that she needed to be back on it.

It's been a few weeks now and she is doing MUCH better. Gone are the nightly battles. Gone is the counting. Gone are THE "thoughts". She gave in and picked a few mosquito bites but we feel that falls under the realm of normal.

Paige finished her play. 6 performances! Yes, I cried like crazy watching her up there on stage. A real stage!

Homeschooling is going good. I still feel it is the best thing we have ever done for her. Some days are hard but it's getting much easier now that she is back on her meds. I asked her if she missed anything about going to school. Her answer... "I miss getting a new back pack every year." lol

Hubby went away for a week on a business trip. It was only the 2nd time we have ever been apart in the 17 years that we've been together (the first time was 17 years ago). To all of you single parents, I am in awe of you!

So, I'm still here in the blogworld, just have been a bit preoccupied with life. I have been reading everyones comments and feel incredibly proud to be surrounded by so many intelligent, passionate individuals. There was one comment left under the last topic that I will be addressing in my next post. I'm sure it will cause a ripple but I feel it needs to be said. Hopefully I'll be able to post soon, as long as life cooperates.

Thanks everyone!


Sarah Blake said...

[hugs] I'm glad that Paige was able to advocate for herself and glad the doc agreed to put her back on the meds. [big hugs]

Sheila Brown said...

Hi Stacy,
I am happy that you've had a full summer. Sounds like most of it was rather good. I was happy to see that Paige orchestrated a trial of med removal - you are raising a great advocate there ! Bummer that it didn't work out the way she (and you) had hoped, but still kudos to her, nothing ventured, nothing gained. Ali tried to DC her beta-blocker unsucessfully - I think we won't be trying that again any time soon - but Ali did a great job explaining to her MD why atenalol was her best friend :-) we not only didn't get to drop the beta-blocker, she's now on Imitrex for migraines (which she is getting with startling additional frequency. I hope this will level off if she ever hits puberty officially. It is so fantastic to watch our kids take the reigns of their lives more and more. I still can't believe Katie, in college, a job, a car, a balanced bank account ... I keep saying I don't know who took my Katie and left this seed-pod replica .. but I'm not giving her back for the original.


Anonymous said...

Have you seen this medical study?

Long-term medical and social consequences of preterm birth.Moster D, Lie RT, Markestad T.
Department of Public Health and Primary Health Care, University of Bergen, Norway.

BACKGROUND: Advances in perinatal care have increased the number of premature babies who survive. There are concerns, however, about the ability of these children to cope with the demands of adulthood. METHODS: We linked compulsory national registries in Norway to identify children of different gestational-age categories who were born between 1967 and 1983 and to follow them through 2003 in order to document medical disabilities and outcomes reflecting social performance. RESULTS: The study included 903,402 infants who were born alive and without congenital anomalies (1822 born at 23 to 27 weeks of gestation, 2805 at 28 to 30 weeks, 7424 at 31 to 33 weeks, 32,945 at 34 to 36 weeks, and 858,406 at 37 weeks or later). The proportions of infants who survived and were followed to adult life were 17.8%, 57.3%, 85.7%, 94.6%, and 96.5%, respectively. Among the survivors, the prevalence of having cerebral palsy was 0.1% for those born at term versus 9.1% for those born at 23 to 27 weeks of gestation (relative risk for birth at 23 to 27 weeks of gestation, 78.9; 95% confidence interval [CI], 56.5 to 110.0); the prevalence of having mental retardation, 0.4% versus 4.4% (relative risk, 10.3; 95% CI, 6.2 to 17.2); and the prevalence of receiving a disability pension, 1.7% versus 10.6% (relative risk, 7.5; 95% CI, 5.5 to 10.0). Among those who did not have medical disabilities, the gestational age at birth was associated with the education level attained, income, receipt of Social Security benefits, and the establishment of a family, but not with rates of unemployment or criminal activity. CONCLUSIONS: In this cohort of people in Norway who were born between 1967 and 1983, the risks of medical and social disabilities in adulthood increased with decreasing gestational age at birth.

Emilia Liz (we corresponded previously

Sarah Blake said...

Emilia, that is a fascinating study. Thanks for posting it. Could you post the publication info? I'd like to try to get a copy of the full article. It is the only study I have seen of preemies who are so "old" (1967)! Some adults on the former-preemies list may be interested in seeing a more detailed discussion.

I wonder if there are sociological factors in Norway that influence certain outcomes. For example, do blind people in Norway often attend college? I ask because in some countries they really don't, and this would skew a study very negatively in ways it would not be skewed in the U.S. for people with ROP who do not have cognitive disabilities. For larger preemies who had ROP but were otherwise less ill, this would be significant. Other sociological factors of this kind could also skew the study.

I hope it doesn't come across that I am being critical. These are things that some adult preemie readers who are well-educated and do have families would bring up. Here in the States, the plight of the adult preemie with significant but not extremely severe disabilities is generally that they can get educated, live on their own, have a family, etc, but often find it difficult to obtain competitive employment due to stigma and subtle discrimination. The Americans with Disabilities Act prohibits discrimination; but it does not keep a company from moving quietly to the next equally qualified candidate if there are 500 applications in the pile and there is nothing truly outstanding about the candidate with a disability. In most cases, discrimination isn't blatant. It is just a case of failure to hire--over and over and over and over.

Anonymous said...

Here is a link to the page with the full information:

Sorry, I know that doesn't look too good! But go to "pubmed" and under their search address type Norway and preterm.


cognitive behaviour therapy said...

Using cognitive behavioral therapy helps treat the day-to-day symptoms of depression and anxiety by replacing your inner voice's false messages of hopelessness or fear with more accurate ones, and more specifically, ones that are more helpful and encouraging that will lead you to feeling better.