New Developments

I thought I’d take a break from the thread of my last few posts and zoom forward to present as we’ve been having some difficult times this past month which may be moving us forward to understanding Liam’s medical issues and HOPEFULLY bringing us closer to some help! I started retelling Liam’s story to lay the foundation for what we are going through now and for what is possibly on the horizon for Liam. I’ve kind of gotten lost in revisiting his past. It’s amazing how when you’ve been through some trauma and trying times, looking back is almost like being there again. I thought I had forgotten much of it. It is clearly still with me and something that I want to document for myself, for Liam and Claire, and for others in that it may be helpful to someone else walking this journey.

Liam has always been somewhat of a moody child. He can go through periods of incredible frustration, agitation, and all out rages, followed by periods of calm and absolute joy. In the bad times it’s really bad and hard to remember that he isn’t always like this. In the good times, it’s hard to image it was ever so bad. We’re in one of the bad times right now, maybe even one of the worst of all bad times.

Liam had been doing so great for so long. Not to say that he doesn’t sometimes throw a whopping tantrum or get obsessive about something and drive you absolutely bonkers. Overall, however, he had been much calmer, able to handle things that historically frustrated him and he’s been far less volatile. Then, kind of out of no where, a raging, angry child emerged and it is as if we have been catapulted back a few years when he was totally out of control much of the time; Hitting all of the time, throwing things around the house, screaming and crying, flopping on the ground and refusing to get up (even if we were in the middle of a parking lot). He is also off his rocker, totally silly with ADHD symptoms through the roof. So he’s either pissed off and raging or giggling, laughing, and being a total spaz.

At some point (which I will detail more in a future post) we discovered that his needing to eat brought on a lot of the rages. We were under the impression that he had hypoglycemia and, given his poor executive function, the feelings of agitation and anger that are normally experienced in times of low blood sugar were magnified in him. We were encouraged by his then pediatrician to feed him frequently to combat this problem, and this seemed to help. I also think that moving to a Son-Rise program brought on relief as well as Liam cannot tolerate a lot of adult directed teaching. Ever since then, we have been living are lives around keeping this child fed. At present, I keep a food log daily and everyone that works with him keeps track of what is offered to him and what percentage of all food he consumes. This has been so helpful in making sense of his behavior and helpful in informing the team as to when they really need to encourage food to avoid a total meltdown. It is especially useful for Gary and I in that we can look back and see what he ate, when he last ate, to try and keep him in check in the evening.

We don’t know what is truly contributing to this change in Liam, but we have some ideas worth investigating. Definitely something has got to change. Just prior to the onset of Liam’s changed behavior he had a prolonged illness with a bad runny nose, cough, and low-grade temperatures. He also became ketotic (meaning that he was burning fat or muscle for energy instead of sugar) despite eating sufficient calories. This is something that periodically happens to him. Another anomaly? Another clue? It depends on whom you ask. Once he recovered from the ketosis, the raging set in big time (may be unrelated – who knows). Then one morning a few weeks ago, out of the blue, Liam had a 15 second grand mal seizure in the morning. That was pretty scary and upsetting. He’s had one other seizure that was much longer and much scarier at the age of 4 (more to come on that also in a future post). He’s been tested and tested and has always had normal EEG’s; No explanation for his 2 seizures - another one of Liam’s strange and un-diagnosable issues. It’s hard for me to imagine that his having a seizure doesn’t have anything to do with his current behavior but, again, we are left without answers.

I recently emailed a friend of mine who also has an 8-year old boy with autism inquiring about something she posted on a Yahoo group that was helpful to her son for similar issues. She is also a Son-Rise mom and gave me such great inspiration to not look at this as a negative, but rather something that can bring us closer to solving Liam’s issues. She recently had her son’s adrenal functioning tested and it turns out he was in fight or flight overdrive. Supplementing hydrocortisol has brought about night and day change for them – awesome! I know nothing about this but turned to my trusted Google academy for information. I was also intrigued about this because both of our son’s have been diagnosed with hypothyroid. We recently learned of this in Liam and we also recently learned that he has high cholesterol, which is crazy as he is 47 pounds at 8 years of age and eats the healthiest diet of any child I know. In my Google research I have found some very interesting things about thyroid and adrenal function, cholesterol, glucose and fat metabolism, and behavioral and developmental symptoms that we experience in Liam including rages. Woo-hoo! I never thought I’d cheer about my child having these serious issues, but it truly feels like maybe we can arrive at some understanding – which brings intervention – that may help Liam with his mood. There is much more to the story and to possible underlying conditions that may be revealed to us over the next few months as we go through a metabolic work up that has been recommended by a doctor from the OHSU metabolic clinic. For now, I remain hopeful that difficult times bring new information and more symptoms can bring greater interest on the part of the medical community to solve these issues!

I try to remember during these tough times that Liam is doing the best that he can and I really do feel for him. It just can’t feel good to be so angry and out of control. He’s ordinarily mostly a sweet and fun child. I need to hang on to the image of the “good” Liam, which is really tough when he’s smacking and head butting you and throwing car seats and shoes around the house, screaming, crying, and growling. The hardest thing for me though is feeling that Liam’s mood is so limiting for him. He is capable of participating in so many of life’s experiences and can get so much out of being engaged with other kids and in his community. His need to maintain a strict eating schedule and the tornado that ensues if he doesn’t prevents him from being able to really take part in so many things. He has really been benefiting from being around children more as he seems to learn so much from them and is so motivated to challenge himself when in a social environment. We’ve wanted to find more social experiences for him where he can be part of a group and play with a consistent group of children. He was recently invited to participate in Claire’s summer camp program two half-days per week, which is such a great opportunity for him to be around kids and play. Things had been going pretty well and he’d been enjoying himself. This week, however, he didn’t want to eat before going to camp and ended up having a total melt down when required to wait in line for a lengthy period of time (for him) prior to going to the park. He ended up hitting Claire and then hitting another child. He was taken outside to calm down but instead continued raging and ended up running into the street in front of a car! That was not a fun phone call to get.

We have two important medical appointments for him next week that we are anxiously awaiting and hoping like heck that something can be done to restore Liam at least to his former functioning. We’ll keep you posted.