We officially have issues. Charlie had a follow-up appointment with his DAN doctor on Monday. The results of the OAT (Organic Acid Test) and the stool (sorry to talk about poop, but, hey, this is our world right now) are back. However, as our DAN doctor said, in this field bad news is really good news because it means we have something to work on and hopefully symptoms will improve.
Charlie has yeast. . . and lots of it. He also shows high markers for the Clostridia bacteria. I've been reading about this in all of the biomedical books and articles, and darn if Charlie doesn't meet the prototype of autistic children. These kids have some serious gut issues, most likely resulting from immune deficiencies.
What the heck does yeast or the gut have to do with autism?? That is what I said the first time I heard of this. But, I have learned, everything is connected in our body and there is a direct connection between the gut, the immune system and the brain. This is where biomedical treatments come into play. There is a lot of research on this. Discover magazine published an article that is straightforward and easy to follow, "Understanding Autism, The Answer May Lie in the Gut Not in the Head". You can read the article here. Our DAN doctor also explains the biomedical protocol and his approach very succinctly on his website (here).
Now that we have Charlie's test results back, we are changing some elements of his treatment plan. His current supplements will remain the same, with the exception of a change in his probiotic. In addition, we are also going to start a prescriptive anti-fungal, Diflucan. My first preference was to treat the yeast naturally with various natural anti-fungals, probiotics and digestive enzymes. However, our DAN doctor recommended a prescriptive anti-fungal in this case. I trust his opinion as he also prefers the natural method. He felt, though, that in cases where there is a lot of yeast, natural anti-fungals usually don't get the job done. Charlie will take Diflucan for at least a month (not sure for exactly how long at this point) and we will monitor his liver and kidneys the entire time he is on it. (Diflucan over all is very safe, but for long term use, the liver has to be checked periodically. Our DAN doctor said if the liver enzymes are affected, he'll take Charlie off the Diflucan and the enzymes will return to normal with no harm done.)
When we're done with the Diflucan, we'll likely switch to natural anti-fungals to try to keep the yeast at bay as best we can. I read posts from parents dealing with their children's yeast almost daily. It can be a long and grueling process. Our lovely friend Candida can be quite pesky and resistant and does not give up easily. Not only that, but as the yeast is killed, it often releases toxins which create a die-off effect. Sometimes this effect is quite severe, causing drastic changes in behaviors, aggression, etc. Some children look and act like they are actually drunk. (I won't get into the bodily processes that may be affected. Suffice it to say that the yeast has to come out somehow. I'll let your imagination run with that.) I'm not looking forward to this, but it's actually not a bad sign if it does occur. If Charlie has significant side effects, we'll administer activated charcoal which soaks up the toxins and is then passed in the stool (here I am talking about poop again).
The clostridia is another problem we have to deal with right away. You have to treat yeast and clostridia at the same time. If you only treat one, the other one tends to flourish. We will be giving Charlie a very potent brand of probiotics, Lactobacillus Duo, that will help combat the clostridia. We'll also supplement with colostrum to help fight off infections. Colostrum aids immune and digestive function.
There were some other results that caused some concern, including a low 2-oxoglutaric acid level which may be indicative of high levels of ammonia. Our DAN doctor did a blood draw to check for this. We will supplement alpha ketoglutaric acid to combat this.
Many of the results also suggest Charlie's glutathione production may be low. We are testing blood for this as well. High levels of succinic and glutaric acid were also detected. We'll supplement with riboflavin and CoQ10 for this. Finally, Charlie's tartaric acid was extremely high. The DAN doctor said it was the highest he thinks he has ever seen, which is significant considering he has treated many, many ASD children. His arabinose levels were also very high (the DAN said in the top 3 of any he has ever seen). This is another indicator of yeast.
Adam and I feel like alchemists when we prepare Charlie's supplements every day. It's a bit overwhelming keeping all of this straight at times, although you do get used to it. We keep a checklist on the fridge so we can make sure he gets all of his supplements according to schedule. Once we implement all of the new supplements, Charlie's new supplement schedule looks like this:
Morning:
1 tsp CLO
1 capsule Nu-Thera
1 capsule New Beginnings AntiOxidant formula
1 capsule Lacto Duo
Calcium Supplement
1 capsule alpha ketoglutaric acid
1 capsule of CoQ10
Mid-Morning
1 capsule zinc
1/2 capsule Riboflavin
1 tsp colostrum
Afternoon
1 tsp CLO
1 capsule Nu Thera
1 capsule alpha ketoglutaric acid
1 capsule CoQ10
Evening
1 capsule Lacto Duo
1/2 capsule Riboflavin
1 tsp colostrum
Diflucan
Every 3 days:
Methyl B12 shot (Charlie has received 4 shots so far. We do them at home and it is very easy. We put some numbing cream on first, then you just inject in the buttock. If we do it when Charlie is asleep, he doesn't even wake up.)
As for therapy, Charlie is doing quite well. He is used to his therapists and seems to really enjoy his therapies. His receptive language skills at ABA are quite good and he does what he is asked. He has mastered a few different puzzles and some of the shape sorters. His therapists are starting to sign with him some. They say this often spurs more vocalizations in verbal children. At OT, his therapists report that he is happy to be there, doesn't complain when he is taken to the desk to work on fine motor skills and handles transitions well.
I have noticed that Charlie's social skills need a lot of work. We've been to a couple of birthday parties in the last 2 weeks. He stays on the perimeter and does not seem aware of what the other kids are doing. He does not sit still and has a very poor attention span. At one party, the kids were playing a dodge-ball type game with lots of balls. Charlie was just walking amongst them, completely oblivious that a game was even going on. It was actually kind of funny. It's like he is doing his own thing and really could care less what the other kids are doing. Same thing in the tae kwon do classes we tried. I think it's a little too soon for some of these activities for Charlie, but I feel confident that we will get there.
Charlie's verbalization has improved somewhat. He has made numerous requests to go swimming. He also told Adam "not yet" when he was told to put on his pajamas. Tonight, I was having a conversation with Charlie about how big boys use the potty. I asked him "do you understand?" He looked right at me and said, "I understand." I know you do, buddy.
Wednesday, June 24, 2009
Sunday, June 14, 2009
Good-bye, Dear Friend
In light of the events that have transpired in our family this last week, I'm going to take a break from the subject of autism for purposes of this post. Bo was a very special member of our family. The kids adored him, almost as much as he adored them. It is with very heavy hearts that we bade him good-bye on June 12, 2009. We know he is in heaven chasing squirrels and swimming in the ocean. We miss you, buddy.
Dear Bo,
I remember the first time I met you. You had the kindest eyes and the most gentle demeanor I had ever seen in any animal. You won my heart at first glance. I knew you were special.
As time passed, I was amazed at how big your heart was. You wanted nothing but happiness surrounding you. The idea of disappointing your humans was almost too much for you to bear. You were full of compassion and would gladly lend your head to be stroked if someone was feeling pain or was upset. You, too, needed encouragement to make sure all was well with your family.
I will never forget jogging with you. Somehow, you always made the run seem more bearable just by your presence beside me. You were always up for a walk, but you were never pushy in requesting one. You simply stood with a look of hope and anticipation as we laced up our shoes. One look at you, and it was impossible not to invite you along.
I have never seen pure joy as I saw in you when we would visit the NC mountains, where you loved nothing more than to run, sniff and swim in the creek. And, in your young and "middle-aged" days, how you would love to run by the 4-wheeler and bark in pure joy and excitement just at being alive. I always marveled at your speed and your endurance. You were truly a sight to behold. I spent half my time on the ride looking at you. You brought such happiness just to see the expression on your face. I will never forget it.
I still smile at the thought of a relatively large dog turning into a quivering ball of nerves at the slightest hint of a thunderstorm. You made the pug feel like a giant during those times, as it was the only time she "out toughed" you. Secretly, although I hated seeing you in distress, I loved it when you would crawl in bed with me to be cuddled and reassured as it was the only time you laid in bed with me.
You made us stop and appreciate the small things . You taught us how to enjoy the minute and the seemingly mundane. Just watching you roll in the grass, or in the sand (as you loved to do whenever we took you to the beach much to my chagrin at the time) would make me forget about my worries. You did everything 100%, with your whole body and soul. You never did anything without putting all of yourself into it.
Thank you for being the true guardian of my children. I always knew you would be great with kids, but you exceeded my expectations in every way. You were patient beyond measure, allowing the kids to roll, lay, step, sit, hug, etc on you to their heart's content. You never showed a sign of annoyance. I would venture to say that you loved having them this close to you. What a protector you were when both kids were so small, standing between them and anyone or anything you did not know or perceived as a threat, laying beside them on the floor as they learned to sit and crawl. I could almost feel your influence on them as you cheered them on to learn and grow. Thank you for loving them. Thank you for being their first pet and, therefore, always holding a special place in their heart.
Saying good-bye to you was so incredibly painful. I always knew the day would come, especially as you grew older and, in the past weeks, became visibly ill. Somehow I thought this would help prepare me, but in the end, it did not. I think because I knew you were so special, it was so difficult to think of my world without you. I have to stop myself from looking for you or listening for you, as it has become habit over the years. My mind still plays tricks on me, making me think I hear you walking around or see you move out of the corner of my eye. It will take my brain and my soul a little while to get used to this. The pug, too, is having a hard time adjusting to the absence of her long-time friend. It feels too quiet around here.
We were so blessed to share in your life, to be chosen to be your family. You brought so much to us and made us a more loving family. You never asked for anything other than our love and an occasional scratch behind the ears. You showed gratitude for everything, and you always gave more than you took. You were the icon of unconditional love.
Good-bye, dear friend. One day we will see you at the rainbow bridge.
Dear Bo,
I remember the first time I met you. You had the kindest eyes and the most gentle demeanor I had ever seen in any animal. You won my heart at first glance. I knew you were special.
As time passed, I was amazed at how big your heart was. You wanted nothing but happiness surrounding you. The idea of disappointing your humans was almost too much for you to bear. You were full of compassion and would gladly lend your head to be stroked if someone was feeling pain or was upset. You, too, needed encouragement to make sure all was well with your family.
I will never forget jogging with you. Somehow, you always made the run seem more bearable just by your presence beside me. You were always up for a walk, but you were never pushy in requesting one. You simply stood with a look of hope and anticipation as we laced up our shoes. One look at you, and it was impossible not to invite you along.
I have never seen pure joy as I saw in you when we would visit the NC mountains, where you loved nothing more than to run, sniff and swim in the creek. And, in your young and "middle-aged" days, how you would love to run by the 4-wheeler and bark in pure joy and excitement just at being alive. I always marveled at your speed and your endurance. You were truly a sight to behold. I spent half my time on the ride looking at you. You brought such happiness just to see the expression on your face. I will never forget it.
I still smile at the thought of a relatively large dog turning into a quivering ball of nerves at the slightest hint of a thunderstorm. You made the pug feel like a giant during those times, as it was the only time she "out toughed" you. Secretly, although I hated seeing you in distress, I loved it when you would crawl in bed with me to be cuddled and reassured as it was the only time you laid in bed with me.
You made us stop and appreciate the small things . You taught us how to enjoy the minute and the seemingly mundane. Just watching you roll in the grass, or in the sand (as you loved to do whenever we took you to the beach much to my chagrin at the time) would make me forget about my worries. You did everything 100%, with your whole body and soul. You never did anything without putting all of yourself into it.
Thank you for being the true guardian of my children. I always knew you would be great with kids, but you exceeded my expectations in every way. You were patient beyond measure, allowing the kids to roll, lay, step, sit, hug, etc on you to their heart's content. You never showed a sign of annoyance. I would venture to say that you loved having them this close to you. What a protector you were when both kids were so small, standing between them and anyone or anything you did not know or perceived as a threat, laying beside them on the floor as they learned to sit and crawl. I could almost feel your influence on them as you cheered them on to learn and grow. Thank you for loving them. Thank you for being their first pet and, therefore, always holding a special place in their heart.
Saying good-bye to you was so incredibly painful. I always knew the day would come, especially as you grew older and, in the past weeks, became visibly ill. Somehow I thought this would help prepare me, but in the end, it did not. I think because I knew you were so special, it was so difficult to think of my world without you. I have to stop myself from looking for you or listening for you, as it has become habit over the years. My mind still plays tricks on me, making me think I hear you walking around or see you move out of the corner of my eye. It will take my brain and my soul a little while to get used to this. The pug, too, is having a hard time adjusting to the absence of her long-time friend. It feels too quiet around here.
We were so blessed to share in your life, to be chosen to be your family. You brought so much to us and made us a more loving family. You never asked for anything other than our love and an occasional scratch behind the ears. You showed gratitude for everything, and you always gave more than you took. You were the icon of unconditional love.
Good-bye, dear friend. One day we will see you at the rainbow bridge.
Monday, June 8, 2009
Gettin' In the Swing of Things
We are in the midst of Charlie's summer therapy schedule and all is going well so far. Charlie completed his second week of ABA and speech therapy. We have already seen some progress in ABA and OT (a little too early to really tell with ST just yet). Charlie listens well and does what is asked of him in ABA. He has also had more spontaneous verbalizations with no prompting, which is good. (For example, saying caterpillar when he sees a picture of a caterpillar.) He is also doing better with the shape sorter and can now put in most of the shapes in the right hole without using trial and error. He still is not a big fan of the puzzle. It's kind of funny to watch him when they bust out the puzzle. She hands him a piece and you can just see on his face that he is not that into it. He just slams it down on the puzzle board and hopes it will be over. Of course, they don't let him get off that easy. In OT he is working on following two step directions. He is doing well, but sometimes has to be prompted or reminded of the second step after he completes the first step.
Adam and I have observed numerous ABA sessions. I am very impressed with the therapists and the center. It seems much more natural than I had originally thought. It is obvious ABA has come a long way in the last decade or so. The therapists find ways to work in drills into play time so it really seems more like she is initiating play with Charlie rather than sitting him down and drilling him. Charlie seems to enjoy going. Thankfully Charlie has not repeated any four letter phrases since the first day when he repeatedly said "What the hell? What the hell?" (I'm not even going to deny that he got that from me. Guess you have to watch your language even more when you have an echolaliac child.)
I think Charlie has had a good week overall. He has had more spontaneous words than the last few weeks. Yesterday he even told me "Want to go in the water. Want to go in the pool." He seems to pay attention more when you talk to him or point something out. I have been able to get his attention and point out the full moon and the stars the last few nights. He looked at where I pointed and showed genuine interest.
We've also had a lot of fun this past week. We had a big neighborhood party to celebrate the last day of school. They had a big waterslide, and Charlie enjoyed going down with it with Adam. (Addison seemed to want to go, too, but mommy thought she was just a tad too small for it.) Both kids enjoyed snow cones . . . a first for both. Our neighbor also had a "graduation" party, and Charlie and Addison had a blast swimming and going down yet another big water slide. (This time Addison was allowed to go and she absolutely LOVED it. She has no fear. I'm in trouble.) Today we went to a birthday party for one of the kids in our playgroup. Charlie and Addison both decided to go in the baby pool fully clothed. I decided it was too much work to keep them out so I just let them have fun.
While Charlie does appear to have a good time at these events, he pays little to no attention to the other kids. However, he also did not seem bothered by playing near them or sharing the baby pools with any of the children. Hopefully we can work a little more on his socialization skills over the next few months.
I got a very nice card from three of my wonderful friends from law school today, Tomee, Rachel and Hilary. In it was a gift card to Whole Foods to help us with the organic and GFCF diet we have begun. I can't tell you how touched I was to receive this and how thoughtful it was. It brought tears to our eyes to feel such support. A couple weeks ago we also got a big box of GFCF goodies from some of the moms in my MOMS Club. We are so lucky to have such wonderful people in our lives.
Today, while waiting for Charlie in OT, I was struck, once again, by how large of a spectrum ASD really is. It really runs the gamut. I saw a quote that is right on point: "If you have met one kid with autism, you've met one kid with autism." Enough said.
On a sad note, our beloved lab Bo appears to be facing his final days. We are very sad and depressed about this as he has been an absolute wonderful friend and pet to us. Since Charlie has been diagnosed, I swear Bo seems to sleep in there more than he did before. I have always thought that animals are very intuitive, and Bo has always been so. I know he will watch over Charlie when it does come his time to leave us. Addison will not know what to do without her precious "BoBo" who she usually calls for in the morning before she ever calls "mama!" We were able to get some good pictures of Bo in the water a couple weeks ago. We asked Charlie to give him a kiss, and he leaned over and kissed him on the head. One day I will have to be sure to let the kids know that their first pet will likely be the BEST pet they will ever have. We love you Bo.
Subscribe to:
Posts (Atom)
