Thursday, February 16, 2012

love

A friend of mine found a blog and sent it to me. Its called Enjoying the small things. Its written by a young woman who's second daughter was born with down syndrome. It is amazingly beautiful and touching. Here is the link that my friend sent me. Its the birth story of Nella, the daughter with down syndrome and I sobbed when I read it. This may sound silly, but it reminded me so much of Asha. One line in particular...

Love me. Love me. I'm not what you expected, but oh, please love me.

Every time I read that, all I want to do is hold Asha close to me, tell her that I love her and be sure that she knows it. She is not what we expected, but she wants to be loved. She needs to be loved. And, oh, how we love her.

She makes us crazy, she's turned our lives upside down and she has tested my patience. But we love her. There are times when I think of how life would be if she had never come to live with us. I only think of how it would be for us. I try not to think about how it would have been for her.

When I am exhausted and just want to relax and she is running and barking, I look at Buster and Maggie. I see them fast asleep on the couch and can't help but think how quiet it would be if was just them. But its not just them, Asha, our little problem child, is part of our family and we are all in this together.

It never fails that soon after these thoughts cross my mind, Asha will come over and lean against me or look me right in the face with those blind eyes and there nothing I would change about that moment....Love me. Love me. I'm not what you expected, but oh, please love me.

Don't worry sweet baby....we do love you.

Saturday, February 11, 2012

Trial and Error

It seems like most of my posts lately are about Asha, that's because our lives are consumed with helping her find her place in the world. Mostly, we are working to find the right combination of drugs that will allow all of us to live a more peaceful life.

Asha has been a part of our family for 7 months now. The first several weeks she lived with us, she behaved like a puppy - getting into things, whining and finding her voice. After she started having seizures, she changed. I think back to things that happened around that time and often wonder what caused the change in her behavior. After the seizures, she started to be anxious all the time, she developed some obsessive compulsive behaviors and her running and barking got totally out of control.

She started taking phenobarbital and that stopped the seizures, but all her other behavior issues continued. She started having a problem sleeping at night. I slept on the floor with her for almost a month. I remember I brought her to work with me one day and she barked ALL day long. The vet from the office next door came over and talked to me about anxiety drugs. I remember I was so offended...I wasn't going to drug my dog. In fact, I told him that it was unusual behavior. Well...it became usual and drugs have been the only things that have saved us.

After I had been sleeping on the floor for a month, one night Asha was so anxious that I thought she would have a heart attack. That went on for a few nights and I finally asked our vet for something to help with that. There began our journey to find the right drug for Asha. Here's how its gone....

Asha takes phenobarbital for her seizures. We've controlled them with a very low dosage - she takes 1 grain (60 mgs) 2 times per day.

Our vet prescribed Reconcile, basically prozac for dogs. this class of drugs is a Selective Serotonine Reuptake Inhibitor (SSRI). This was somewhat effective. Asha was able to sleep for about 6 hours per night. She was able to fall asleep without anxiety. It did not, however, help with the running and barking, nor did it help with her destructiveness while left home alone. The only side effect Asha exhibited from this drug was diarrhea. That became constant and we didn't like that.

After about 6 weeks, we were still struggling with Asha's behavior. I started doing some more research, I joined a lethal white forum and saw lots of information about dogs with similar issues as Asha. Many people stressed that I should find a behavioral vet right away so that Asha's habits didn't become impossible to break. I searched and found one such vet in the Portland area. I talked with my vet about changing Asha's medication. As if reading my mind, she said that this was really out of her realm and asked if I would consider going to a behaviorist. She was going to refer me to the vet I had found.

I was very encouraged and hopeful. Behavioral vets work with both drugs and behavior modification. We had a trainer coming to the house every week to help us, so we were already working on that and I looked forward to more help.

Two weeks later, we had our appt with the vet and he made some changes to Asha's medication. We weaned her off the Reconcile and started her on a drug called Paroxetine (Paxil) - a different SSRI drug. While weaning her off the reconcile, I realized just how effective it had been. She went crazy during that time and as soon as we started her on the Paroxetine, she calmed down a bit.

Asha's diarrhea stopped when we switched her off the Reconcile. However, she started having a difficult time sleeping at night. Her usual 6 hours of sleep went down to 3 or 4. This was the hardest time for us. We were getting no sleep and it was exhausting. Night time restlessness can be a side effect of the Paroxetine.

We were prescribed a drug to help her sleep at night - Trazodone. This was a disaster. It had exactly the opposite effect - it made Asha not sleep. We started with the smallest dosage and increased it over three nights. By the third night she wasn't sleeping at all. She was fighting the effects of the drug, moaning and groaning, fighting to stay awake. We decided to stop that immediately.

We were hopeful that her transition to the Paroxetine was over and that she wouldn't need help sleeping. We were wrong. Eventually, we started Asha on another medication to help her sleep. This was a sedative called Acepromazine. This was supposed to knock her out. Well, we've come to realize that no drug works on Asha the way it is supposed to. She is the exception to every rule.

I researched this drug and got very concerned when I saw all kinds of info that said to never give this drug to a dog with seizure disorders. I spoke to both our regular vet and the behavioral vet about this and both assured me that there was no science to support those claims and they were totally comfortable using this drug.

We started Asha on the smallest dose. I was so worried about giving her this drug that I put her in bed between me and Trevor and watched her all night. The first night, she saw no difference in her sleep patterns, but she was more sedate in the morning when we got out of bed. The next night, we increased from one pill to two pills. I still had her in bed with us. She slept pretty good (not great), but she peed the bed in her sleep. That was very disruptive! The third night we increased
to three pills, the maximum dosage, there was no increase in how she slept and she again peed the bed.

I didn't like the way this sedative worked, it didn't take away her anxiety, it instead paralyzed her so that she couldn't express it. During the day, she showed signs of being groggy. I would take her to Petsmart to walk around and all her friends commented on how tired she seemed. We decided to back this drug down because it just wasn't working.

I found that giving her one pill, after she was almost asleep, helped her sleep almost all night long again without causing her to pee in her sleep. Her behavior during the day was not improving. We needed to look at other options.

We increased her phenobarbital doseage because her levels were testing low. Once we got them in normal range, her behavior hadn't changed, so we started thinking about different anxiety drugs.

We are currently in the process of switching Asha to a drug called Clomipramine. Its a tricyclic antidepressant. We just started her on that yesterday. It will take weeks to see if it will help.

As soon as we decreased Asha's dosage of Paroxetine, the one pill of Acepromazine at night made her pee in her sleep again. It amazes me how all these drugs work together. When you change one, it affects the effectiveness of the others. That is what we are seeing. So we are trying yet a different drug to help Asha sleep at night.

Clonazapm is in the same class of drugs as Valium. I like the idea of this better, it should relax Asha, not paralyze her. The minimum dose is one pills, maximum dose is three. We started with one, she didn't sleep that night. The next night we moved to two, she slept better, but still not good. Tonight we will try three and see what happens.

Insert big long sigh here. This is all so exhausting. Its trial and error. Since Asha does not respond to anything the way we expect, it makes it all even more difficult. We must wait 4-6 weeks on each drug to see its effectiveness. As I mentioned, when we change one thing it effects other things.

I have a found a wealth of knowledge online. Perhaps the best info I found was here:
http://dogaware.com/articles/wdjanxiety.html This woman details her trial and error with her dog Piglet. She finally found some relief and her dog lived to be 17 years old. This gives me hope. Seeing all the different drug options is overwhelming, but also gives me hope that if these things don't work, there are many more to try.

Through all of this, our little Asha seems to be the happiest, most well adjusted little dog. Sure, she doesn't sleep at night and she runs and barks during the day, but she loves to be with us and she loves to be out in public meeting people. She has lots of friends at the vet and petstore and she is totally her happiest when she is there. She is not afraid of anything.

The only thing that really makes me feel like we are doing okay by her is the comments we get from strangers. When we are out and Asha meets someone new and they comment on how happy Asha is, then I know that we are good parents.

I am not going to lie...its incredibly hard. There are days when I can't stand to be in my home because of the constant barking and running that dog does. I get so tired of chasing her around. I just want to lay on the couch with my dogs in peace and quiet. Right now, we don't get too much of that.

The thing that is really frustrating is that no matter how tired she is, she still won't sleep at night. There are days when she has been going all day and is totally exhausted, but her sleep patterns stay the same. I'll think "she has to sleep tonight", then at 2 am she wakes up to tell me that she is not tired anymore.

So the trial and error and continues. We have a team of people helping us. Trevor and I have each other. No one else can possibly understand what its like to live in our house right now. Sometimes we laugh about it, sometimes we are really mad. I don't cry about it anymore. I've given up thinking about how our lives used to be. We have Asha now and we have to find an answer.

I don't want to make it sound all bad. There are lots of days when things are pretty good, when we do have some peace and quiet. I want to bottle up those days, those moments and make them last.

Sometimes I get really mad at Asha and she can tell, but a minute later she comes and lays by me, rolling onto her back to show me her belly. Or she'll lick my face or put her head between my knees. I know she loves us and surely she must know how hard we are trying to help her.

Last week we took Asha to have her picture taken. A local photographer is doing a book on dogs with special needs. Asha was so amazing that day. She walked around the studio without any reservation, she checked things out and even took a little nap between takes. I love it when others get to see what a special girl she is. It makes me proud of all the time and effort we have invested into our youngest baby.

There is a reason she is in our lives and a reason we are in hers. Even though I hate how things are sometimes, I would never give her up. She's our family and we'll get through this. Stay tuned, I'll keep you posted.