Thursday, April 26, 2012

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.


Tuesday, January 31, 2012

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.