The love I have found

This past year has been a roller coaster of emotions for me. I have felt all my life there was a purpose for my life, yet I spent years not knowing what it was and just living for myself.

A few years before I met Ryan, I was in a bad relationship. One that would destroy who I was and in turn lead me to who I am. During those 2 years of being my past self, I let a man control my life, control my being. I let him yell at me , push me around, tell me I couldn't do anything, but still was all I had. I had gave up on my parents. I hadn't talked to them in months.

One day literally out of the blue, I heard a voice in my head saying this is it Blair, this is a moment in your life when you choose your destiny. I left that guy. I packed my stuff, I walked away. That night I went and hung out with my friend Julie. She took my to a party and I would learn later that at that very party I met my future husband. Although he remembers meeting me but unfortunately I don't remember. Even to this day I don't remember.

After a week or so I began to put the pieces of my so called life back together. Even though I knew my life with my former boyfriend was not what I deserved, after 2 years with him my heart was broken. I moved in with Julie. I got a job!!! We started hanging out at Jeremy's house and what do you know Ryan was hanging out there too!

Right away I thought he was adorable and sweet. We stayed up late one night, sitting outside and talked for hours. After that night we became inseparable. On November 10th, 1999 we went on our first official date and since that day we have been together. Sure there has been ups and downs just like in every relationship., but for me it has been nothing like I have ever had.

Years went by and we went to Church on occasion but never surrendered ourselves to The Lord. Something was stirring up in myself over the past couple years pushing me more into the feeling of needing more for our lives.

Last April we found a Church that we had heard great things about. So we went and checked it out. That day after we got home Ryan and I looked at each other and said this is it!!! This is our new home. Every Sunday we get up and we join our family in worshiping The Lord. It has become the best experience in my life. Last summer Ryan and I were both baptized and became official members of our Church.

I look at my past and then I look at where I am now and I know God helped me on this journey. I believe you choose your destiny but I know with all my heart, God placed Ryan and I in each others paths to find one another.

My husband is the reason I am who I am. I could say I chose to go to Church and I chose this and that, but truth is, Ryan led me to where I am today. I needed him to help me see me, to help me see The Lord. He is the one person who has been a constant rock in my life.

The best part of this life? A few days ago I was getting our almost 3 year old Greyson dressed and he looked at me and said "mama, I am so glad God made you!" That right there is priceless. That is my purpose in life. To be a mother, to be a wife, to be a constant rock for my family, just like my husband is.

Long road to hope

I want to first go back a little bit to the beginning of Bryce's story.

Last year we started to notice Bryce's behavior was becoming troublesome. He started to experience high amounts of anxiety and seemed to be on an emotional roller coaster daily. Bryce was having what I call "meltdowns" 10 or more times a day. These emotional outbursts would be over anything and everything from not getting his way to rain dripping down on his shoes. His teacher also complained that Bryce was having a hard time paying attention in class and seemed to lose focus alot. So like any concerned mother I took Bryce to see his primary care physician in early October of 2011. Since there was a few different concerns we agreed it would best to take Bryce to have psychological testing done.

On October 27th, 2011 we went in to have testing done for Bryce. We spent close to 4 hours filling out paperwork, taking tests as parents and Bryce having tests done as well. In the end the psychologist concluded that Bryce had a significant processing speed difficulties that were likely interfering with the presenting concerns brought forward by his teacher. His IQ level was actually in the low average range, which is only because he was unable to process the questions he was asked quick enough for the tests. She also said that Bryce had many characteristics commonly seen in ADD/ADHD. Then worst of all tests suggested that Bryce was experiencing symptoms of depression. Although she said that Bryce would need more of a work-up to determine if his could be clinically diagnosed with a full depressive disorder.

We went back to Bryce's physician to discuss these results, at that time we decided the best treatment would be to trial a medication for his ADD. By December of 2011 Bryce's mental outbursts were almost doubling day by day. Again another medication was added to the ADD medication, but this made it worse! Finally I said "no, more!" I took him off the ADD medication and he instantly became slightly better, although his was still having outbursts he was only having about 5 a day. We then decided we would put him on an anti-depressant/anti-anxiety medication and a medication to help with sleep as he was having horrible insomnia. Within a few weeks I felt like we had made real progress. Bryce had less meltdowns, sometimes going days without one. He was sleeping better also. Bryce was then sent to OHSU for a consultation with a Psychiatrist.

In January 2012 we made 3 trips to OHSU for consults. Bryce was able to tell the psychiatrist some of his feelings, one quote was "sometimes I get upset." After our 3 trips up there Dr. Johnson agreed that Bryce did not need the ADD medication right now, that if he was better on anxiety medication that could of just been his whole issue. Bryce met criteria for separation anxiety and social anxiety and just generalized anxiety. They took some blood samples and tested for a few different things. One thing that Dr. Johnson mentioned was that she was going to test for Strep A antibodies. First I thought well I would know if my kid had strep but OK go for it. She explained that there was a disorder called PANDAS that is still controversial, but with Bryce's high anxiety and this movement his does when he is excited he could fall into the category. So we tested.

A week later she called me to say Bryce actually tested positive for Strep A. I was shocked! Although his second test came back and it was negative. So we were told to recheck his levels in 3 months. We increased his Zoloft and started back to our normal lives. Except life wasn't normal my 6 year old son had anxiety, how could that be!

3 months later we retested. His levels had increased and the 2nd test now came back positive! We started him on antibiotics and within a day of being on them, his anxiety was gone. It was amazing! For the 10 day course of medication Bryce seemed like a different kid. There was still some underlying anxiety but not anything compared to before. Then not even 2 days after he came off the antibiotics he went right back to having terrible anxiety. Ryan took him to an Easter egg hunt with over 100 people and Bryce wouldn't even go in, he was terrified. Bryce started chewing his fingernails, his long sleeve shirts then his shirt collars. He has ruined a ton of shirts. He would come home from school or daycare and his shirt would be hanging down passed his chest. His doctor and I agreed to retest his levels to see if the antibiotics worked. A few days later his tests came back and his levels had not even moved!!! His was still testing positive even after a full 10 day course of antibiotics. We started another round of a different medication and again within a full day of taking his first dose, he came home from school and his shirt wasn't even the slightest bit wet.

So we have came down to 2 theories.

1. Bryce has a significant amount of anxiety and he is a carrier of Strep. If that is it he continues to take the Zoloft and there is not much you can do for a carrier.

2. Bryce has PANDAS.

PANDAS stands for Pediatric autoimmune neuropsychiatric disorder associated with group A streptococci. Most knowledge of PANDAS has been obtained by studying patients. There is still a great amount of controversy with this disease because alot of people do not know about it. The first case that was ever documented was back in 1998. Actually in the past year it is really on the rise in media. There was just an article about it in Parents mag, Andersen Cooper did a show on it as well. Some cases are worst than others. What happens is when a child catches a strep infection in spreads to a part in the brain. This in turn causes high amount of anxiety, OCD, and tics. There is no known cure right now and since the research funds are so limited who knows when and if there will ever be one. Right now they are using prophylactic antibiotics and in some cases doing immunomodulatory therapy which means they hook you up to a machine and take all your blood, put it into a machine and it cleans it then puts it back into your body.

So since there is not alot of research here in Oregon going on, we are having to travel. Next month we will be traveling down to a clinic in Petaluma, CA where as of right now they have 50 cases of PANDAS. Unfortunately they do not bill insurances so this will come straight out of our pockets. The initial visit just to see the doctor will cost $800, this is not including the lab work and other diagnostic testing that will be done. Plus the cost of travel. I am asking for donations to help fund this trip and to help my son to get better. This is our last resort. We are stuck and have no other option. I am going to set up an account probably through our bank that hopefully people can just put money into if they would like to help.

Please feel free to forward this on to anyone. Thank you.

Blair

Looking toward the horizon

Today I met with Dr. Johnson at OHSU to discuss her recommendations for Bryce. First of all for the last few weeks we have been meeting with her and she has been talking with Bryce to get a better feel for what's going on with him. Last week Bryce had blood work done, just some simple things like Vitamin D and Thyroid levels. He has had done what is called a Strep titer. This is looking for any bacteria that Strep carries lingering in his body. When this happens and is untreated it can cause high anxiety and involuntary movements both of which Bryce has. These movements happen when Bryce is excited, his hands go up in the air and his face contorts in a small way. This has been going on since he was about a year and a half.

So his Vitamin D was very low, she started him on 2000 IU a day. Also his first strep titer came back and it was elevated. Normal levels are 166 and his was 197. Good news is that the second round of the titer came back not elevated. So what this means is there is bacteria somewhere in his body, he could just be a carrier of it. Right now the only thing we can do is watch him closely. He will have bloodwork done every 3 months to check his levels. Also if at any reason he complains of a sore throat OR if he has a temp above normal, we take him in to get tested right away.

Bryce shows significant signs of anxiety, social anxiety and seperation anxiety. We also thought for the longest time that Bryce was having insomnia at night, because it would take him over 2 hours to fall asleep. What Dr. Johnson believes is that since Bryce has such a high amount of the seperation anxiety, that he is coming out of his bedroom because he needs to make sure we are there, that we have not left. He needs to touch us, which is why he constantly asks for hugs and kisses when he comes out of the bedroom. What is happening is that when he lays down, his mind starts racing and his anxiety builds up. I have this same problem actually and I do have a prescription for medication that when this happens I can take that calms my brain down and helps me fall asleep, it is truly an amazing drug for someone who has this horrible disease.

We will be increasing Bryce's anxiety medication and adding a new medication that will help calm him down at night. On top of the OTC Vitamin D, he will also be taking an Omega 3 supplement that will help with the focusing issues as I have taken him off of all his ADD medication. Bryce will start a congentive behavioral workshop that will help him learn to overcome some anxiety and teach him how to deal with certain situations. Ryan and I will also take some courses to help us learn how to communicate with Bryce when he has meltdowns and how to help him as well.

It's a long road ahead but again we are taking it one day at time. Thanks for listening.

Getting Better Everyday

I took Bryce off the Adderall a little over a week ago. His emotions were so out of control. Even with the new medication for his depression, the outbursts were a constant thing. I thought long and hard about this, and I realized a few things. First, I actually feel worse about having my child on Adderall than I do on Zoloft. This may because I have seen and lived depression/anxiety. I was just having a hard time coping with the thought that my 6 year old body was been run through with amphetamines. Second, I just knew that all this emotional stuff was becoming worse with the Adderall, and I couldn't bare to see my son like that anymore. So I took him off of it. I called his doctor and told him "I am taking Bryce off the Adderall. I will pay close attention to watch for any withdrawal symptoms. I don't want him on this right now. I want to try other things." He said "OK."

So now over a week later and after no withdrawal symptoms and no real set backs, he is the same old Bryce as before, except one thing.....HE IS HAVING HARDLY ANY OUTBURSTS OR MELTDOWNS. The Zoloft is really working for him. He is happy about things, he is saying Thank you to us (which is huge, not having to remind him to say it!) He is falling asleep a little better (still needs some work). The main thing though is the crying, I am just so happy to see my son, well happy!!!!

We still take it one day at a time, like I am sure we will for quite awhile, but today was a good day and I am satisfied about that!

New Medication

Since Bryce has been started on his medication for ADD, we have seen an increase in his emotions. About a week ago we tried adding another medication at night that would try and help stabilize his emotions. After a few days of this new medication, I could see it wasn't working, he was only getting worse. Bryce was having "mental meltdowns" at least 10 times a day. I took him off that medication. Even after taking him off the medication, he was still having a rough time. With the Adderall XR it is making his brain slow down, in turn helping with his focus on tasks and school work. Unfortunately it is also making his depression/anxiety come to its full potential. Before any medication his brain was moving so fast that when he would have a depressed moment it would just come on, but then leave quickly because he didn't have the time to deal with it. He would become depressed or anxious over something but his attention would quickly turn to something else. Now that his brain is able to slow down and process, he is struggling with being depressed/anxious longer. This is tough on all of us. I have had a diagnosis of anxiety in the past, and even struggled with postpartum anxiety after Greyson was born. I took medication for this in the beginning but for the past 8 months or so, I haven't needed it. Now I feel like my anxiety is coming back, because I can't figure out how to help my son. In one way the Adderall is helping with his focus, but it is also triggering his depression. How can my 6 year old son have depression? It is really the worst feeling for a mother to watch your son go through something like this. If you have ever been depressed, you will know that no matter what anyone does, it doesn't help. You can't explain why you feel sad, you just do. Sometimes there is nothing to be sad about, but you are sad anyways, for no good reason.

So we saw Dr. Zollinger on Wednesday and discussed what our next step was. Since like I said the Adderall is working, we don't want to take him off of this, fearing that he may go backwards. We made the decision to start Bryce on a small dose of Zoloft, which is a depression/anxiety medication. Bryce will also be going to see a child's psychiatrist, which is someone for Bryce to talk to. They can also prescribe medication unlike the psychologist that he saw before. So hopefully after seeing Bryce a few times can help us better understand what medication might work best for his condition. Dr. Zollinger is also hoping that maybe having Bryce talk with someone, he might not have to be on medication for his depression for that long. He thinks that Bryce will outgrow this, or at least learn to control it.

This has to be so scary for Bryce, not knowing what is going on in his head. I can't imagine being a kid and feeling like this. This new medication will take about a week or so to see it's full effect, but last night we had family game night and Bryce LAUGHED!!! He laughed so hard!!! We played minute to win it, and Bryce was blowing a feather, trying to get it in a box, and it got stuck in his nose!! He was rolling on the ground, laughing so much. Ryan and I were busting up as well. I got tears in my eyes. It has been so long since I have seen Bryce that happy. I can't tell you how happy that made me.

Thanks for being there and taking the time to listen to our issues. We are praying that we are on the right track, and we know that God has a plan for Bryce.

Better yet worse

We started Bryce on Adderall XR two weeks ago. Ryan and I have seen a difference in some ways. Bryce talks to me more about his day, which before NEVER happened. When I would pick him up at school and ask about his day, he would say things like "I don't know" or "NOTHING!" He never wanted to discuss anything. Maybe because nothing was important about his day or maybe because he brain was spinning so out of control that he couldn't find words to describe his day? Who knows, anyhoo that is the past and today is a new day right? Well so NOW when I pick him up he tells me what he did, how lunch went and anything else important that the teacher tells the students to tell their parents. I AM SO EXCITED TO LEARN ABOUT HIS DAY! Besides that there is a tiny bit more of things I notice. When I ask him to do something, sometimes he does it right away! Also he has been a little better about remembering to say "thank you" without us having to ask him 3 times what to say. I haven't yet had a chance to sit down with his teacher and talk about if she is noticing a difference yet. I plan on going in there Friday and talking with her.

So on the downside, because there always is.....his emotions are totally out of control. I knew this could happen with the medication, but I wasn't prepared for how bad it was going to be. Adderall is an amphetamine which slows down the brain in people who have ADD/ADHD, but it also speeds people up who don't have that problem. That is why it is sold of the streets for high value, because people get high from it. They actually used it back in war for the pilots to stay awake. So since it is working in Bryce's brain, it is also running through his veins all day, making him a little more agitated and anxious. Of course since Bryce is already dealing with some depression and anxiety, we knew they might get worse. They have! Bryce is so emotional over everything, and it's not just crying it is straight up having a mental meltdown over something as small as not wanting to eat what's for dinner, or the rain is getting on his shoes. It is overwhelming not just for me but for him as well. Last night when he had this melt down because he drank some juice and he gagged and thought he might vomit, I ended up having to just hold him in my arms as he tried to struggle to get loose for a good 20 minutes until he finally calmed down enough that I wasn't worried he was going to have a heart attack. 45 minutes after the meltdown began he was fine, back to normal like nothing ever happened. The intensity of the situation is hard to explain. Some people will probably read this and say "oh yeah my kid does that if he doesn't get his ice cream." I have no idea how to drill it into peoples head but this is NOTHING like that!

So after discussing this with his doctor, we put him on another medication that is called Guanfacine. He takes this at night before bed and it will help calm down the emotions enough to get them under control, while the Adderall is still working to control his ADD. Hopefully with this combination Bryce can be a happy kid. That is what I want for Christmas from Santa, and God. I want my son to be happy, to live his life as a child does. I don't want my son to go through this anymore.

Thanks for listening.

Praying for another tomorrow, better than today. Praying for strength to guide us, and wisdom to know we are in the right direction.

Reflecting

I am sitting here today with so many thoughts running through my head. Today we will meet with Dr. Zollinger and discuss the next step in helping Bryce. I guess if I had to choose one word for the way I am feeling it would be "lost." Not knowing if the step we take with be for the better or worse. If we choose medication and it back fires, then my son might get worse. If we choose not to do medication and just therapy, how long will it take for Bryce to get better? Although I know God has an amazing plan for Bryce, I know God knows the outcome of this confusing time, I am still so confused. I am his mother, the one that God chose to protect him, to teach him, to heal him. I feel like I am losing. I feel like a horrible mother. Ryan gets so upset that I blame myself for this, but I can't help it, that is just how us humans react. I go over and over in my head, what if I would of stayed home from the beginning? What if I would of spent more time with him as child? I could go on all day with more "what if's", but it won't help. Nothing does. I literally have to make my mind turn another direction.

I know that every parent out there, or most anyway could tell you that they love their child more than any other parent in the world. It is so true. I love Bryce more than I could of ever imagined loving my children. When I was kid I could not wait to become a mother. I even bought baby clothes as a teenager because I knew someday I would have a little one. When Ryan and I decided to get married we did it because we wanted children, and we knew that was the right way to do it. Of course we wanted to be husband and wife, but we had already lived together for 5 years, we were already "married" in most ways. I wanted to have everything perfect for a new little person in our life, so I went to the doctor about a month before our wedding to get checked out. There I was given the news that I never expected to hear....I might not be able to get pregnant! Really? Of all the people out there having children and the Lord was going to deny me this? Well I wasn't giving up, I decided I would take fertility drugs to help better my chance. I tend to think God knew the mistake he had made by telling me I couldn't have my dream, because 45 days after our wedding, I was pregnant! So you see many people are so happy when they get pregnant, it is a wonderful thing. But for me, it was the greatest blessing. Bryce is my blessing. Bryce is my miracle. My sweet 6 year old son is the greatest gift God has given me. I also believe that having Bryce allowed my body to get pregnant 3 times after him. Two babies of course are my angels in heaven, then 1 little boy is currently dancing in my living room right now.

Bryce is more to me than just my child. Bryce is my entire world. I want so much for that little boy. I want life to be easy for him. I want him to not be afraid. I just want the best for him.

Thanks for listening.