2 PANS kids fighting lyme and coinfections, our journey to healing

First session…

…went very well, so didn’t predict that. He completed everything asked of him, and that after spending an hour and a half in the car because we got stuck in traffic. The lead person called me to assure me that being late was no problem, they would wait and work with him for his full hour with no problems. Anyway it is usually a 20 minute drive so hopefully we will find a faster route and leave earlier on the days it might be a little more traffic heavy due to rain or national holidays – that will certainly help my blood pressure.  I was a little frustrated, but him not so much. He came out with a great attitude which stuck with him until about 8 pm where he dissolved into the “you hate me” tirade once more, until he fell asleep a little before 9 pm. I would consider our first session a success. He told me in the car on the way home “He did it for me because he loves me!” I told him thank you of course. My feelings in regards to the center are far different than our initial first impression, currently I am very impressed by their dedication and their seemingly genuine desire to help these kids. All the staff have a true and unwavering belief that this program really truly works. I am actually afraid to admit that I might be a little optimistic again. Program materials given to us today include a CD of soothing music to play for left brain dominant children, 15-20 minutes 3 to 4 times a day, and a 3-ring binder with the lists of exercises to complete at home. Nothing too daunting 15-30 minutes again 3-4 times a day if possible. Some visual stimulation and core physical exercises. I think we can mange those for sure. Roll on Monday and session #2, only 35 to go!!! 😉 Share this:Click to email this to a friend (Opens in new window)Click to print (Opens in new window)Click to share on Twitter (Opens in new window)Click to share on LinkedIn (Opens in new window)Click to share on Reddit (Opens in new window)Click to share on Pinterest (Opens in new window)Click to share on Facebook (Opens in new window)Click to share on Google+ (Opens in new window)Click to share on Tumblr (Opens in new window)Click to share on Pocket (Opens in new...

Brain Balance our second assessment appointment.

I am feeling much more confident. B certainly isn’t any happier than he was on Saturday to return to the center, but he did agree to do the final tests today just for me and oh a new DS game! I am still looking for opinions regarding the center and the work they do; however, after today’s appointment, I am feeling much more secure in the abilities of the people working there. Which in the end I am sure will sway our decision one way or the other on if we sign up or not. If I have no faith in the assessments there is no reason to sign up long-term. Anyway after a phone call initiated by them on Monday in regards to how dismal Saturday went I can see their reasoning and training coming into play, it certainly gives me pause that this is indeed not their first rodeo. We went back today for the physical aspect of the assessment and I feel it went well overall. Tomorrow is the day we find out the results of the testing. Stay tuned. Share this:Click to email this to a friend (Opens in new window)Click to print (Opens in new window)Click to share on Twitter (Opens in new window)Click to share on LinkedIn (Opens in new window)Click to share on Reddit (Opens in new window)Click to share on Pinterest (Opens in new window)Click to share on Facebook (Opens in new window)Click to share on Google+ (Opens in new window)Click to share on Tumblr (Opens in new window)Click to share on Pocket (Opens in new...

Brain Balance decisions and other stuff

In the end, after a long, long day at the pool on Friday, my husband and I decided that the Brain Balance Center is if nothing else, worth a try. It’s a lot less intimidating and weird than many other things we have tried when we really thought it through, and although the cost is part of the equation of course, what we need to pay for the next 12 weeks is about $160 a session, akin to the psychiatrist and other therapists we have already seen for many months with limited success. So we will start on Friday, beginning with 3 in-house sessions of 1 hour a week and working for 2 x 15 minute blocks each day at home. We are committed to 36 sessions in our first block. I first heard of the Brain Balance Centers after reading a book by Dr. Robert Melillo called Disconnected Kids. As with any therapy there are good and bad reviews, pros and cons. I admit I have had a hard time find negative or positive reviews for this program, mostly the posts I have found are via CitySearch and are regarding the cost of the sessions not the actual program itself, which limits our ability to decide on whether to proceed or not. I always figured the easiest way to find information was to Google, but with this it seems it isn’t the case. Anyway, we are now committed, we have decided and we will go 100% into the program and see what happens. The worrying part for us is the limited screen time, B will only have 1.5 hours per day of screen time, which as he spends at least that on the Wii each day it will be somewhat stressful. My plan is to remove everything – from experience we know he is an all or nothing child at the best of times, if we allow 1.5 hours of TV we will need to allow him carte blanche, if we remove ALL TV he will (with my help) find something else to occupy his time. It has been difficult and we have been slack simply because it’s the summer and he has had a broken leg for the past 4 weeks. Now the cast is off it’s time to get back into the real world, but I know he will be kicking and screaming the whole way, at least for the first few weeks anyway.  He is back in school on Aug 1st and then I predict our days...

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