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

Brain Balance – appointment 23, give or take!

We had our 2nd assessment appointment last week. It seems B has gone from significantly delayed to almost age level (or beyond) on every item on the checklist. Thankfully we are starting to see those changes at home. I am the last person who really expected this to be a positive solution for us. After all, everything else we tried only left us disappointed. We didn’t really expect this to be any different, ever the optimists we hoped it might, but were still very skeptical. So what did we expect? Well, like everyone, we had heard lots of promises before and only ever enjoyed limited progress –  so that become our norm. We thought, “If we can just progress a little further, that will get us to the next thing!” However, in this case it seems we may have been a little off on our expectations. I am still too gun-shy to consider calling Brain Balance a success, but certainly the progress he has made is noticeable. It would seem now at least he has the tools to be able to learn the skills necessary for living on planet ‘rest of the world.’ If nothing else, he needed the skills to be able to leave the house dressed and without argument, even if that doesn’t happen every time. I still occasionally have to tell him to go back and turn his underwear or worse, his pants around, but at least he is willing, able and in good humor while he does it. The most  progress seen is in his overall demeanor, don’t get me wrong the melt-downs are still coming and the arguments still as fierce, but he has lost the tourette-like insults that plagued us for the past 4 years or so. He no longer refers to us a pigs, idiots or morons, even when when it’s clearly warranted! Homework time is no longer a battlefield, but simply 30 – 45 minutes of him working calmly away. He even read the bedtime story last night. His reading has always been good, but his desire has been nonexistent until now. Factual books have always been his go-to choice of reading, but even that is changing. Last night he read “Hansel and Gretal” all the way to the end with voice inflections and everything. It was such a cute, normal, everyday moment to celebrate. Here is a sample of how his academic skills were, and now are, since we have been working with Brain Balance: MATH, beginning on August 1st, the 2nd page is his homework from 8/26/11....

What about the autism family?

When one person in the family (or more) has an autism diagnosis, that generally means the entire family wears that diagnosis too. From the minute a child starts exhibiting autistic type behaviors the dynamic begins to change. No one needs the diagnosis to feel this, it just happens. With restrictive behaviors, lack of social skills, tics, tantrums and melt-downs – the family life starts to change. As a parent of a child who exhibited spectrum behavior from 18 months old, my husband and I lament on what we could have been doing as opposed to what we really have done over the past 7 or 8 years. Every occasion that should have been special has been an exercise in control, physical exertion and over-vigilance, every vacation has been an exercise in apologizing, explaining and retreating, every event we attend has to be carefully planned, explained and thought through, to the point where generally we now just opt to stay home. Vacations are just tough, the transition from home to a strange place sets us up for failure, after a couple of days, we start to groove again, but then when we leave to come home the transition anxiety begins again. It’s almost not worth it. Summer camps are out, play centers don’t work, babysitters are unequipped to deal with the onslaught, even the swimming pool is too stimulating or he reacts to the chlorine. It’s a lonely, frustrating life which could easily be open to resentment on our part. The whole family enters a twilight zone. I think in general most parents are good parents, the same stands true for parents in families with autism spectrum disorder. Trust me no one encourages their child to spit, hit, lick walls, chew shoes, throw tantrums on a deafening level, jump from absurdly high places, or run into traffic. The look on the parents face when their child starts these behaviors isn’t apathy, in general it’s panic, or something akin. At least I know that’s what you see on my face on a daily basis. We can all feign bravado and say “we don’t care what other people think” after all logically we know we can’t control that. What other’s think is their own business. The reality is, when you know other people are judging you, both through your child and your parenting skills, you instantly feel inadequate. Even though you know that the problem is not your parenting it’s a neurological one. In the end it doesn’t matter, you always feel like you...

Links to autism may start in the gut!?

As I was drinking my coffee and catching up on the news this morning the first 2 stories that jumped  out at me are both discussing the relationship between gut health and autism. Only yesterday I was talking to someone about how almost all the autistic kids we know are plagued with chronic gut problems such as diarrhea, constipation or worse Crohn’s disease.  We were discussing why this was so. Indeed B has struggled for almost 7 years with diarreah, someitmes so bad that it burnt his skin. We have managed to control it somewhat with a multitude of diet restrictions, but even so, it’s miserable to say ‘no’ all the time to him. No to ice-cream, birthday cake, pizza, corn chips, candy etc. All horrible junk food of course, and nothing anyone should eat on a regular basis but just occasionally we would like to not hover at a birthday party, or restrict a classroom bash. So was Dr. Andrew Wakefield wrong or did the media hound and hunt him down on a technicality? Was part of his research actually valid? This recently published article in the Journal of Neuroimmunology states that – “…Children with autism spectrum disorders (ASD) who exhibit chronic gastrointestinal (GI) symptoms and marked fluctuation of behavioral symptoms exhibit distinct innate immune abnormalities and transcriptional profiles of peripheral blood (PB) monocytes…” The other article appeared on Dr. Mercola’s site this morning. To read in it’s entirety: Dr. Mercola The article discusses the possible connection that Helen Ratajczak, The author of the review, has found regarding both vaccines and gut etiology in regards to rising rates of autism. “…A new scientific review reveals there are a host of peer-reviewed, published theories that show possible connections between vaccines and autism. The author of the review, Helen Ratajczak, did something that no one else has apparently bothered to do — review the complete body of published science since autism was first described in 1943. The article found numerous documented causes of autism caused by encephalitis following vaccination. Ratajczak goes on to discuss many potential vaccine-related culprits, including the increasing number of vaccines given in a short period of time. …” It’s worth reiterating at this point, that although my assumption is now that my son was triggered by a childhood trauma that started his journey, originally he was diagnosed with autism when he was 3.3 years old. Indeed I truly believe that this diagnosis was good at the time. His symptoms matched many of the criteria for an autism diagnosis, including echolalia, stimming, limited social interaction and eye contact, limited speech, skin picking, tics, poor fine motor skills,...

Will I be famous?

In the last few weeks my son and I have been discovering a new relationship because we are being forced to spend quality time in the car almost every day. I pick him up at school and drive to his Brain Balance appointment and then we hop back in the car and go home, all together a good solid hour trip. Now that video games are history – we actually talk! This is a new concept for us. It used to be that we would all get in the car, his head would go down, I would switch on the radio and off we went. He would only wake up with surprise on his face at our final destination. One day I actually drove to Toys-R-Us, went in with his sister, returned to the car (his Dad stayed with him), got back in and drove away and he never realized we had even been! He was totally confused by his sister’s T-R-U bag. Anyway in the past our son has typically been focused on a certain phrase or saying, it changes after about a month or so, but it is often derogatory and usually something you don’t want repeated out in public, even though he always does. Just lately; however, he has started to tone it down. Our latest verbiage is something along the lines of: “Will I be famous if…” and those if’s are sometimes complex, sometimes innovative and often hilarious. Will I be famous if I jump in the pool and beat all the other kids in swimming? If I make a pair of super fast shoes and run across the ocean to Australia – then will I be famous? What if I throw a golf ball to Australia, will I be famous? Will I be famous if I tell people I found this skull and it’s real?” “Will I be famous if I invent a time machine?” ” … if I use my time machine, … if I invent a potion to make you stay young and stop the pain in your feet (in response to my fibromyalgia) then will I be famous? If I… Scenario after scenario is coming out and eventually I had to ask him, why do you even want to be famous? Turns out it’s not the fame he seeks, he really just wants to be rich! So today I told him, “you know you can be rich without being famous?” “Really”? he asked in genuine surprise. I assured him, that it was indeed the case. Of...

Schooling when your child doesn’t fit into the public school system.

Where do we start? Just what does a parent do when their child isn’t making it in the state school system? In our case we are in South Caroline which consistently scores low on any poll related to education rankings, you can find us placed anywhere from 48th to this one that shows us dead last! I know lots of parents who fight for their kids IEP’s (Individualized Education Program) at every meeting, fight to get what they need, fight to get the best for their kids, unfortunately in SC it seems there really isn’t much to fight for when you look at our graduation rates. Consequently there are hundreds of home-schooling families around here. I can’t tell you how many times people have suggested I home-school my kids, to which I have responded “not in a million years, not enough Valium on the planet, what about my time-off?” and a plethora of other snappy little come-backs! However, it became apparent toward the end of the 2010 school year that neither of my kids were making it in the local public school. For B, I spent my time sifting through emails, notes and reports about his behavior, inability to concentrate or sit-still and his apparent dislike of other kids in his class. For G, it became an all-out war to even get her to school in the morning. She was so resistant toward the end of the school year my husband resorted to physically carrying her to school. Once there she would settle in, but she spent an awful lot of time in the counselors office which again wasn’t ideal. So we decided that we needed to make some changes. We found a local Christian school that can take our son. They are all about small class sizes and never have more than 10 children in each class. He only attends school 4 days a week. This shorter week alone seems to reduce his stress level. The school is strict but seems very responsive to kids who maybe are not the proverbial round peg, round hole type. He, so far, is grudgingly happy with his new school. My daughter on the other hand is a different kid, she LOVES to learn, and until kindergarten she loved school, but in the last year she became more and more scared of breaking the classroom rules or messing up by misinterpreting what was required. She didn’t want the public humiliation of having to move her marker in class and it was making her totally miserable trying to keep it all together. So...

Adoption attachment and trauma

This seems to be the diagnosis I have now 100% and completely come to terms with for our son. There is now no question in my mind. After meeting with a trauma counselor who specializes in PTSD, childhood trauma and bipolar disorder my thinking is much clearer. She was not in the least suprised that he has so many varying diagnoses or that his behaviors can be found in such a mix of DSM lists.  Once I managed to get my head around trauma disorders, it seems that the rest of the world started cooperating with the notion. Why did it take so long, I wonder. All the specialists and doctor’s and therapists we have seen over the past 7 years and never has anyone really touched on trauma as a possible reason and behavior intervention as a solution. Finally as my thinking became clearer and my studying more focused on trauma diagnoses and treatments it became crystal clear that this is the path we should have sought all along. I cry to know how long we have been disconnected from our child’s true thoughts and feelings, totally missing all the cues and chances to help him heal. How much easier it is to heal 2 or 3 years of emotional angst than 7! At this point I suppose we must not look back but continue our journey forwards, we should take comfort knowing that the curtain has been pulled back and that we at least in a place of real understanding now. Mostly that involves helping him grieve his losses and finding tools to help him calm his anxiety, stress and nervousness and hope that that helps him to move through the intense depression we know he feels. Still the days are long and the nights longer. Every night we cry, sometimes lots, sometimes only a little. Tonight he only asked to die a dozen times, he only cried a little and he fell asleep with some sense of release I think. We talked about how he felt powerless, useless, thrown away, not needed. It is futile to promise him that isn’t true, it seems more important to validate and assure him that it’s ok right now to feel those feelings and own them. He will eventually move surely to a place where he starts to feel more powerful without the use of aggression, less thrown away with everyday hugs and attaboys, less not needed by including him in everything. One can only hope the battle cry of “…you hate me, just kill me,...

Several sessions in, for Brain Balance…

Eleven to be exact, for Brain Balance that is. Last Wednesday we got our first progress report. So far so good, he seems to be progressing in the right direction at least. As I predicted he has improved in his core exercises but is still lacking in eye coordination. His reading on their scale has jumped from 1st grade to 2nd grade and we have begun to notice his fluency for reading actually improving. Realistically, from a home standpoint the reading is one of the few things we can really pinpoint as progress at this point. Unfortunately his overall social behavior has notably worsened. He does also seem to be getting physically stronger which is a little more worrying for us when his aggression is still at an all time high! So our progress report read as follows: 2 levels in proprioception and balance beam. 1 level in eye muscle coordination. 1 level  in visual processing, fine motor, supine and lateral core, upper body, brachiation, interactive metronome and gait/aerobics. Academically: from 1st to 2nd grade getting the main idea and drawing conclusions in reading. In math, from 1st to 2nd grade in addition, subtraction multistep word problems (which was very challenging for him when we started) and is working on 2nd grade coins, money and decimals. They advised us to keep working on his eye exercises, and continue the other exercises we had already committed to work on at home. We were also given additional exercises for fine motor skills and to try to increase his sit-ups and push-ups. Overall not a bad first session, this was after 9 sessions in total. As outlined before, and per their prediction his overall social skills have regressed somewhat but apparently those first 9 sessions have a tendency to do that. Personally I am looking forward to some upward momentum in the next set of sessions as is my son no doubt. Finally I also realized that his mood wasn’t totally attributable to just his Brain Balance experience,  at the end of last week, while he was in the midst of a week-long tantrum melt-down he asked if he could just have ice for dinner. It was only while he was sat on the couch crunching a large plastic container of crushed ice that I had my very own ah ha moment. It occurred to me that ice-crunching is often an indication of low iron levels. He has certainly had this problem multiple times before. It’s not just the ice crunching, he is also irritable, angry, moody and tired when his iron...

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