Another possible diagnosis?!?

We've been busy here in Tampa. . . .but what else is new? :) We had a nice weekend. Charlie seems very happy and content with less tantrums, not that tantrums were ever a big deal for us (thank goodness). He does continue to get annoyed with his sister from time to time when she is loud (which is pretty often), and we've had to scold him for pulling her hair a few times. But, over all he seems more laid back with her the last couple of days. Now he just scowls and gives her a funny look when she is being loud or when she is bothering him. Yesterday, he even went up and hugged her (and not a bear hug) and almost kissed her on the head. Very sweet.

Although Charlie has been in a happy mood, we did see a lot of stimming this weekend -- more spinning, walking in circles, pacing, finger dancing and toe walking. He's also been mumbling a lot more, but we've also seen more language which is good. This weekend during a thunderstorm he said "hear the thunder" and has requested apple juice and water. He still tries to get everything himself without asking first. We are working hard to make him use his words to request and not just attempt to get everything himself. He has even taken to climbing up on the bar stools and almost crawling on top of the kitchen counter to get to cups of ice water he wants.

On a funny note, we have learned that Charlie absolutely LOVES the song Viva la Vida by Coldplay. I have it downloaded on my Ipod. When you turn that song on, Charlie will come running and dance to it. He loves a lot of music, but that song in particular seems to be his favorite.

Speaking of things my kids love, my daugther has become a shoe freak!! She absolutely loves to wear her shoes and will bring them to you yelling "shoes! shoes!" She even tries to put them on herself and has now taken to bringing me socks and trying to get the socks on my feet. It's pretty adorable if I say so myself. . . although it makes me nervous for our financial future to have a possible shoe fanatic in the making.

I stumbled across a VERY useful website a few days ago called autismactionplan.org. It is a website run by a DAN! doctor, Dr. Kurt Woeller, in California with a very good reputation. This is a great resource. It is almost like having a DAN! doctor in your living room with you. Once you join, you get access to all of his materials on the site, including a 12 week action plan for biomedical interventions, doctor-parent chat forums where he answers questions about symptoms, supplements, dosages, etc, information regarding lab testing, etc. He even has weekly web video chats where you can chat with him live, type in your questions and he answers right there on the spot. I participated in a live chat on Monday night, and it was extremely helpful. He answered my questions about supplements and tests and numerous other parents' questions. I am so glad I found this site as I now have a resource with experience, at least until I can get in with the DAN! doctor here in Tampa. We have an appointment with him in October.

Yesterday Charlie had an appointment with the neurologist. The developmental pediatrician recommended we go see a neurologist since Charlie's regression was later than average. They did an EEG (which came back normal). Of course Charlie did not like getting all of the electrodes stuck to his head and being held down by a strange woman. He protested pretty forcefully, but then I was able to hold him and rock. He calmed down right away and did quite nicely for the remainder of the test. The neurologist really didn't add much to our treatment plan in my opinion. In fact, at first she irritated me quite a bit. She spent 5 minutes in the room with us, saw that Charlie had been diagnosed in the mild-moderate category and said she would consider him more in the moderate category. Then she saw that he does readily listen to and comply with instructions and obviously understand what is being said to him. He also repeated a couple words back to her. At that point she said he was probably more mild than she had originally thought. She did suggest the GF/CF diet and a multivitamin (we are already doing this). She also said to make sure he is getting enough iron and she also highly recommended magnesium. I had just ordered some magnesium from New Beginnings a few days before this appointment, and we have been doing Epsom salt baths, which do seem to be quite calming. She also recommended melatonin if we are having a lot of troubles with sleeping. Charlie does have some issues in this area, but I think they are getting better so I am going to hold off on the melatonin for a little while. He also had his blood drawn to test for heavy metals and CBC. I'm not sure how useful this will be as I have read that blood testing for heavy metals is the least accurate mode of testing, but I guess it's a starting point.

At the end of the appointment, she handed me a paper and said it is possible that Charlie has MSDD (multi-sensory developmental disorder) instead of autism. I had never heard this term before. The symptoms are VERY similar to autism and MSDD kids exhibit many of the same behaviors and sensory problems as ASD kids. The only real difference noted was that MSDD kids tend to respond better to therapy and do no have the same level of cognitive impairment as ASD kids. Their tendency to avoid social interaction or to withdraw stems more from unpleasant sensory experiences rather than a lack of interest in others. This does make me wonder about Charlie because he often does seem interested in other people and can be very social at times. We really have no way of knowing at this point whether he could be considered MSDD, and it does not matter as the therapies and interventions are all the same.

Charlie is doing great on his supplements so far (multivitamin, CLO, calcium and probiotics). The probiotics seem to have really helped his tummy and, thankfully, don't seem to have any taste as he gobbles them up in fruit, applesauce, juice no problem -- can't say the same for the multivitamin in the taste category. We'll start the calcium plus magnesium next, then we'll supplement with a little extra zinc and an anti-oxidant supplement which Dr. Woeller recommends.