I am including this LONG page to chronicle our family's journey through having a daughter who did not hear, speak or see for 8 weeks, the summer of 2010. Kae-Kae was 12 years old, and was dissociating for 95% of a day. I had another blog which I have shut down, but wanted to include our journey, as I recorded it, here.
You will be able to see the struggle with our faith, the hopes and devastations. This illness has forever changed me and everyone of my family members. At the time, my other children were 7, 5 and 3 years old. They could not understand why their sister lived under a futon cushion all day.
Kae-Kae has been under the futon for 5 weeks.
Her label: Dissociative Anxiety Disorder N.O.S.
Our psychiatrist made his first house call last night and came to visit Kae-Kae while she was alert and talkative. She was talkative for about 5 minutes, until the conversation was turned to topics she found difficult to answer. Here are some examples:
1. Do you feel happy, sad or angry?
2. Do you feel like you have ever lost time before where you have not know what is happening around you?
3. Do you remember swinging today?
Her answer for all of these was, "I don't know." I could see we were beginning to lose her, and then he asked, "What game did you play with your parents last night? and "Who is your best friend?"
The answers to those questions were, "I don't know." Then she stopped answering/hearing/seeing/responding. This is the part he calls the dissociative part. This is why she does not remember anything that happens in the day.
So, we have some medicine, and we were able to get it approved by our insurance this morning. She had her first dose, and we will see what happens. It will work on the anxiety in a few days and the dissociative part in 7-10 days.
The little issue about the N.O.S.= Not Otherwise Specified, is the part that means the doctor does NOT REALLY KNOW WHAT THIS IS. He has seen parts of these issues before, but never in this make-up. This is the part where we go in for another visit with him in 10 days to see if he can get Kae-Kae to talk at all and maybe give us all more insight into more specifics of this disorder. This does put us on the DSM-IV and is what makes our insurance consider putting this toward our deductible, but does not really help us as parents.
So, now we wait and watch.
Looking for any movement out from under the futon, or anything unusual she does. Unusual at this point could mean eating something different for breakfast, reading, taking a walk, speaking, wearing a different outfit, coming up earlier at night, etc.
I am leaving you with this verse for the day that my friend April sent us:
"But forget all that – it is nothing compared to what I am going to do. For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness. I will create rivers for them in the desert!" Isaiah 43: 18-19 (NLT)
Late- July 2010
Kae-Kae has now gone to stay with my parents while we move. She ended up being there 3 weeks while she "came out."
I wanted to give a quick update on Kae-Kae and her response to the medicine. The first improvement we noticed was after the third day of medication. We have been seeing slow changes since then. For instance, she has reduced her nighttime computer time to 1 hour and 30 minutes. This computer time is actually encouraged by the psychiatrist, who said that research has been done to show that certain games promote a type of meditation that she would not be able to bring on her own.
Another improvement is that today, when my dad asked her to not take another bite of food until he gave her her medicine, she stopped and took it! We are doing the happy dance here!
One thing that you may have missed is that Kae-Kae is on an "all-inclusive" resort stay at her grandparent's house, until further notice. This allows our family to have a short vacation and to get moved and settled. They are carefully monitoring and observing her and all the changes. Kae-Kae does have an appointment with the psychiatrist this Friday, and he is expecting her to be speaking to him. I pray that is the Lord's will.
We are nearing the end of the second week of Kae-Kae's time on her first anti-psychotic. Overall it has been a good experience, with only one negative side effect that was able to be quickly be fixed. On the second night of her full dosage (it took about 5 days to build up), she had slurred speech and could not keep her head up. The doctor adjusted the medicine to let her take it all at night when she went to bed. The time of dosage is not as critical as with other medicines.
I wish I could report more positive improvements, though. I can say we are seeing steady changes, but they are very s-l-o-w. She has been at my parents all week and had to come home for about 24 hours for us to take her to the psychiatrist. While home she heard me two different times. Although, it was NOT pretty.
The first time she had come to get her breakfast and had her quilt wrapped around her. I realized she did not have her sweatshirt to put on and I ran and brought it to her. She had the pantry open looking at it trying to find her granola. I told her I had her shirt. She stood there for about 2 minutes and then shuffled to her bedroom. I laid the shirt on her bed. She buried her face in her blanket for about 20 minutes before she could work up the nerve to get the shirt on.
The second time is when she had gone to the bathroom to get her shower. We only had 5 minutes before we needed to leave to get to the doctor (remember, I pay him $100 for 30 minutes, so we are not going to be late). I stood outside the door and called to her and knocked for about 3 minutes, and she came out. I blocked her way into the futon and she turned around and went to the car. We did make it to the doctor on time, but without her shoes. Agh!
The doctor upped her anti-psychotic and also prescribed a tranquilizer. I can tell you after reading about the side effects of this tranquilizer you will get a migraine. This is where I am having to really trust God's working through our psychiatrist to give her the right meds at the right time. He put her on this tranquilizer in order to try to cause an immediate calming to her anxiety. The family of meds like Paxil takes about 8 weeks to fully get into your system and we don't have 8 weeks. Remember, Kae-Kae has now been under the futon for a full 8 weeks.
We talked with Kae-Kae last night and she was alert and talkative as normal, in the evening. She has no memory of the day, and does not remember that Dan had to carry her to the car to go back to Alabama or about the doctor visit. I kind of wish mom and dad could have that kind of amnesia!
While at Nana and Poppie's "all inclusive resort," she has been able to swim, take nightly walks, work puzzles, learn how to work her new computer that she got from them, get her own email address and learn to use it, make phone calls, and watch Food Network. She is spending less time on the computer in the evenings doing that meditation thing, so she is getting more social time, too. They are on Central time, so she is now coming out around 8pm, and they are staying up until midnight with her.
I am a bit behind on this important report because of our move. But, we are here and have Internet service, which we all know is more important than finding the pots and pans!
On Sunday, Kae-Kae came out from under the futon at 3:30! She was very jumpy and pacing alot, but she came out. Everyday this week she has come out earlier and earlier. She started out being mute for several hours, and as of this morning, Wednesday, she only spent 20 minutes under the futon and started talking by 9:30AM. Apparently, she came around the corner and gave my dad a heart attack by asking, "Poppie, what are we going to do today?"
I am now trying to gather some homeschool books and DVDs to send her so she won't be bored. We have only been on this tranquilizer for 6 days, and that combined with anti-psychotic has made all the difference. All of my children here are anxious to see Kae-Kae up and talking, and I don't know if we will be able to hold off until next weekend!
We are praising the Lord for these changes and are looking for the grace and wisdom to continue to help her adapt to her new life in our small town, at the church she grew up in, and what school should look like for her this fall. We are also facing the transition of her medicine from the tranquilizer to a more common medication for anxiety.
I will continue to post updates as she continues to improve.
We have just finished Kae-Kae's first week at home and I wanted to give the highlights. First of all, it was GREAT! The only time she dissociated was when she had her first counseling session. Otherwise, there has been only one other time this week when I could tell from her body language that I was about to "lose" her. We were doing science that had a lot of cutting, gluing and noise from her siblings. I think she did not understand what she was supposed to be doing, so it was extra stressful for her. Needless to say, I am putting that curriculum on hold.
Some wonderful things she did this week involved going to worship and Sunday school, trying out for a children's choir, going to a sewing class, going to a food preservation class with the women from our church, doing 5 minute math drills, working on French, choosing to start a Latin class and playing her flute again. Of course, all of the activities she is doing on her own are at a very compromised pace and she only can do about 15 minutes toward them, but slow and steady wins the race.
Some of her struggles are reading, she was able to read 5 pages of Little Britches yesterday, which is the most she has been able to read in one setting. She can not write more than one word, I think it takes so much focus for her. She is not able to cut with scissors. Her vision is still giving her very obvious problems, she could not see to stir up all the muffin mix, so there was raw egg that cooked on the top of the muffins. Another example is that she can not see that the dishes are still dirty after she washes them. I don't know how we are going to address the vision issues, since vision therapy seemed to be the thing that pushed her over. We are praying for wisdom on the what and when in order to help her.
Interestingly, Kae-Kae has asked us to move the futon out to the garage, so she can put up the craft table. She wants it to sew on since she is in her sewing class. She has also decided it would be a good place to do her schoolwork in peace and quiet. The table would be in our bedroom. We plan to move the futon TODAY!
I have not intentionally allowed this much time to pass without a post, but I have been trying to figure out exactly what to tell people about.
One thing is clear, the journey is still a journey, and many of days it is uphill. But, Kae-Kae is still out of the futon! Two weeks ago I began making a "schoolwork packet," which was recommended by her therapist. When this school packet is done for the day, school is done. I am happy to report that she is on grade level on every subject but Math. She is finding the science portion very challenging, and it mostly means that I do the answers with her at night when we check them. Her packet uses the History and Science Lifepacs, Learning Language Arts through Literature, Math-U-See and a reading comprehension workbook. She is bored with the History Lifepac, so has started her Omnibus 2, with reading Eusebius. She is unable to hand write or type her answers to the questions, but she and Dan do them verbally on the way to counseling every week. The secondary readings are The Hobbit and books of the Trilogy. They have already done all the Q&A and are caught up to where they are in their read-aloud time.
It is very clear that Kae-Kae is having a great time in social settings and shows no anxiety when out of the house. When we are home, it is a different story. She still swings and jumps on the trampoline for several hours a day. We have noticed that it is at regular increments, like in the morning during school hours, or after dinner during chore time. However, when she feels ready to engage, she comes up to me and says, "Hi, Mom, do you need me to do anything?"
She is now off her nighttime tranquilizer with no ill effects other than withdrawals. I am hoping by tomorrow, she will be ready for another week of school. Last week was very difficult, as her body had to adjust to the loss of meds. But, she did not dissociate. Friday, we go to the psychiatrist, so we are eager (that is a stretch), to see what he will do her meds. It is always discouraging to have them adjusted, since it means she will be "worse" for 7-10 days. She gets frustrated by that now.
Dan and I are seeing some huge leaps in Kae-Kae and her understanding her emotions. She is saying things we have never heard before about her thoughts and opinions. We are still hearing, "I guess," alot, so we are encouraging her to say, "Yes, this is what I want or don't want." I am seeing some of her supposed LDs beginning to fade and do think she has been stuck academically because of her anxiety for so many years.
Early October 2010
A Poem written by Kae-Kae
Combining her love of Hobbitish things and her own journey
If you have walked this journey with our family the last few months, you might want to have a tissue ready.
Now that we are starting out on our adventure,
We don’t know what we’ll face.
There will be trails to cross in uninhabited forests.
There might be giants and great streams to lose our way.
Dragons might be there,
And we’ll have to fight the everlasting battle of life.
Adventure sometimes isn’t fun.
It makes us late for dinner.
We will lose our hat and scarf.
But we know that we will go there and back again.