I am reposting this as today's guest blog with the permission of Robyn. She is planning on blogging through their journey with their oldest daughter's experience. I am posting this earlier than my normal guest blog entries because I know there are many here who will be able to support Robyn as she (and her family) prepare for this.
On October 24th 1997 I gave birth to Honor Virginia. From the start, that mothers instinct told me that something was not quite "right" with her. She was horribly horribly colicky. A lot of babies are, but this was extreme. It appeared as though she was allergic to milk based formula. She would projectile vomit whenever she ate, then her poor little tummy would continue to throw up until she was down to bile. There were many nights that my mother and little brother would hold her little body while she got sick over and over again while I was at work. After about 2 months of this, we switched her to soy based formula and she started to do better. But, she was still colicky up until after her 3rd month of life. The 11pm to 2 am screaming fits were just unreal. There was no stopping it. We swaddled, we rocked, we did everything we could , but it wouldn't stop until she was just beyond exhausted and she would pass out.
After dealing with the colic, she started getting her teeth. Wow, they just erupted in her mouth one right after the other. Her gums were always swollen...she looked like a snaggle tooth little thing. Every tooth in her mouth, up to her 2 year molars were in by her first birthday.
Around 7 months or so, I noticed that her moods could shift. She was the only little baby I knew that would actually throw a fit when told no, or just for no reason. She was a really cute baby tho. She knew how to get everyone's attention on her. She would crawl around and pop up just to hear people react to her. But you had to hold onto her because you never knew just when she would get upset, arch her back and attempt to fly out of your hands.
If ever there was a 1 year old you could hold a conversation with, it was Honor. Full, complete sentences by 1. It was a little strange, I admit, being able to talk to such a little person, but she was just so smart, and we figured it was shown in her language capabilities.
Immediately after her first birthday she started getting chronic ear infections. Every 3 weeks or so until she was 26 months. We did one set of tubes at 18 months, but within weeks they were forced out via double ear infection. Finally, after having a massive infection at 26 months and having her ears suctioned out and given oral antibiotics and ear drop antibiotics, the ear infections slowed significantly.
Time went by, we had 2 more children, each with their own issues, but neither of them had the same emotional issues as Honor. She was so hyper emotional. She would be sobbing one minute, and the next second in hysterics laughing, then super angry and almost raging the next minute. We would joke that she needed an "agent" while living in CA because she was so theatrical. Looking back now, we can see that she was just cycling rapidly.
It was always hard for Honor to make and keep friends. She was so "intense" that it would turn off other children, or their parents even. And, well, if a parent doesn't like a kid, they don't want their children to play with that child. We have been blessed with a lot of close friends who get and understand Honor. Some have known her since she was 3, and have seen most of the emotional battles we have faced with her.
Honor at this point, had never really "slept" an entire night of her life (she was 5 now). I took her to the Dr to have her evaluated for Sleep Apnea which she of course had. Because she had developed a heart murmur (which can cause serious complications in connection to sleep apnea) the ENT Dr recommended having her tonsils taken out. We did that as soon as we could and right away, the murmur stopped. She started sleeping "better", but still not quite all night long.
When Honor was ending Kindergarden, she was first diagnosed with ADHD. For the first year, since she was still so young, we opted out of medication. Only after learning that she was one of the smartest in her 1st grade class yet she was scoring the last on her testing, we decided to try her out on Adderoll XR @ a dose of 5mg. There was almost an immediate change. She settled down and wasn't "bouncing off the walls" any more. She could go into her room and draw, which has always been a passion of hers. Whatever her current 'obsession" was, she was drawing it. From about 2-8 years of age, she was all about dinosaurs. Then she started to get into anime and that's what she's currently (at 13) still drawing. She has gotten really really good, and her talent shines through either via pencil or on the computer.
Time went by, and as she grew, her dose did as well. Within a year we were up to 15mg of Adderoll. She was maintaining in school as far as her school work went, but still struggling emotionally and with friends. We started counseling when she was in 2nd grade so she could start to learn some better coping skills. She would lash out in an instant towards her siblings and peers. Most of the time, you could see that she instantly realized, just a second too late, that what she did was not acceptable, but she just couldn't control her impulses. There was zero impulse control.
At around 9 or so is when she would start having panic attacks. They weren't your "typical" panic attack with shortness of breath or anything like that. She would have vomiting spells where (like when she was a baby on milk formula) she would throw up for hours. We ended up in the ER twice for dehydration because of it. She would be so so sick. At this point, I didn't realize it was a panic attack. I know now that when she has these spells, she's got something going on in her head that's got her upset.
Then came puberty. (And by this time we had given birth to baby #4 and #5 and were pregnant with baby #6). We had stopped counseling for a bit, because her Dr was no longer available and things were "okay" for the most part. But as her body started to change hormonally, that's when things began to take a turn for the worst. Her outbursts were more frequent as well has her mood changes. She was having more issues at school and with friends. I had been doing a lot of research on my own and I suspected that she might have Bipolar Disorder, but I'm not a Dr and how does a parent go in and diagnose a child for the Dr. We got a referral for a Psychiatrist and went to see her. What a disaster!!!! The Dr (after 15 minutes with us) told me that Honors issues were because I was a bad mother and had too many kids. Had Honor not been the oldest of 6 in my "chaotic disorganized house" (which it isn't) that she wouldn't be the way she was. I left that appointment sobbing my eyes out. I made an appointment with our Primary Care Dr and obtained a referral to a new Psychologist in hopes of getting a referral to a new Psychiatrist through him. I wanted her seen at Balboa Naval Medical Center. Being an Army brat, I grew up in military care and with Champus and Tricare Prime, and after this one visit with a civilian provider that went so terribly wrong, I needed to be back in my comfort zone. We got an appointment immediately.
After filling out what seemed like books and books of paperwork, the Psychologist rediagnosed her ADHD, with OCD (obsessive compulsive disorder) tendencies as well as ODD (oppositional defiant disorder) tendencies as well. We continued seeing him biweekly for some time, but at this point, Honors panic attacks were getting more frequent and disruptive to her personal life. She could not longer go spend the night with a friend because she would obsess about what was going on at home and was "fearful" that something would happen to her family while she was gone. Then she would start to throw up and need to come home. Fast forward a month and we were referred to a colleague of her psychologist for psychiatric care and he took control of her medication. At age 12 she was up to 30 mg (an adult dose) of Adderoll XR. He added Paxil to help her with the anxiety. It eventually started to work. She was able to spend the night out with friends (close by).
However, her moods...EVERYWHERE. Roller coaster ride doesn't even come close to describing it. My husband was telling me 'normal people don't act like that". She was all over the place. She was still seeing her Psychologist every other week when things started to spiral downward for her. After an incident with her younger sister where I was fearful for her safety, we decided to put Honor in a Partial Hospitalization Program at the local mental health hospital. She was there for 3 weeks and was able to be observed by the on site Psychiatrist. That Dr noted her mood changes and her impulse control issues. After then being diagnosed with Bipolar Disorder Type II, she was taken off of the Paxil (I can't remember why at this moment), and she was prescribed Lamictal which is a mood stabilizer, Abilify and Cymbalta for depression.
She started to come around, but after 3 short months, Honor came to me telling me she wanted to commit suicide. I had to take her to the ER. After 12 hours, she was transported to inpatient treatment at Sharp (where she did her Partial Program). She stayed there for 4 days. At that point, she was taken off of the Cymbalta because it can increase suicide risk in children under 18. Her withdraw from that was pretty hard. She was very anxious about it so...throwing up.
This very cycle repeated itself the end of September, then again this past February. After consideration, her Psychiatrist at Sharp recommended long term treatment at a residential treatment facility in TX. She has been accepted by Tricare and by the RTC Meridell and we will be arriving in TX this Sunday. While she is there, she will be getting a full comprehensive workup, a neuro-psych eval, IQ testing...all of it. They will take scans of her brain to see if there is anything else going on. Honor will be there for roughly 6 months. Either Brendan or myself will fly to TX once a month for on site meetings, and we will also do weekly family therapy meetings via teleconference. It's going to be hard to be away from my oldest baby girl, but my hope is that this treatment center will help her get to where she needs to be physically and mentally.
Please pray that this works. Updates to follow.
Wednesday, March 9, 2011
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