Not for anything 'fun' mind you, but something even better - a specialist who might be able to help Matt with his Endocrine issues! If you google anything related to pediatric endocrinology, especially if it relates to obesity, this doctor (Dr.Lustig) is mentioned. He has written and researched and pioneered a TON of studies on Matt's particular combination of issues. Parents on both my Panyhypopituitarism and Pediatric Brain Tumor boards just revere this man. His name comes up frequently. Well, in November I emailed him asking about a consultation and second opinion on Matt. My request was met with a rather curt reply that basically said we had competent Endocrine care and that he didn't recommend travel out of state to see him. He said he would be happy to consult with my doctor, but basically he didn't want to be involved with Matt's case. I was kind of grumpy about it, but figured there was nothing I could do.
Well, last week we had an excellent appointment with Matt's endocrinologist. We got a lot of things worked out that have sort of been hanging. Matt's weight has increased considerably since his last surgery. I don't believe his diet has changed, and he doesn't seem to be eating an abnormal or unhealthy amount. However, he has gained 10 Kg.(about 25 lbs.) since his surgery in December, and 5.5 Kg. in the past month. That is a gain of 11 pounds. In ONE MONTH! Seriously, you cannot eat that much, or have that sedentary of a lifestyle. I think about it in pregnancy terms - I've gained 18 pounds in 7 months and that is a pretty dramatic weight gain. To gain 10 more pounds than that, in less than 3 months is really quite mind boggling.
Anyhow, Dr.Donaldson (our Endo.) said he doesn't see Hypothalamic Obesity enough to treat Matthew. He has had a handful of patients with the disorder, and has been wholly unsuccessful in treating them, even when he has consulted with Dr.Lustig. He wants to hand over care to Dr.Lustig - and it was even his idea! I was so excited to go home and draft another email, mentioning that Matt's doctor was the one who felt like Matt needed to see him. He replied quickly and said okay. I'm waiting on the details of exactly when we need to book our tickets, but I do know they are working on it. I've been cc'd on several emails talking about tests and things that Dr.Lustig wants done.
I am just SO EXCITED and HOPEFUL that this Doctor has the skills and experience that will help my boy!