OMG! Even on the low, minimal dose, there have been things that have happened that, if Gramma and Boompah weren't here to see them, I'd have thought I was crazy. The first thing was Saturday night - after just that one day on the NV - something that, at the time, I thought was unusual but nothing more. Josh is not big on playing with toys - I have always had to take out toys and really work at drawing his attention into them, playing with him, and so on. Sat. night, we went up to his bedroom to play a bit before bed (I toss in therapy things, little does he know!) and took out a cool sticker thing to make constellations - idea was for him to learn/say the names of the constellations, then put the stickers to make them (speech and OT!). We started playing and all of a sudden, he stopped and said, "I take out trains." He turned away, took out a train set, got it all out of the box, and started trying to put the tracks together. Doesn't sound like much? Josh has NEVER taken out his train sets on his own, and rarely would play with them if I took them out (he likes the real thing!). We played for about an hour with the trains. And, while we were playing, he saw his "little yellow bear" under the bed. He tried crawling under the bed to get it (motor planning not previously seen!), but couldn't reach it. I handed him his Pirates of the Caribbean sword, he turned it on (I didn't even know he knew how to turn it on since he has NEVER played with it before!), got his bear out from under the bed using the sword to help (again, motor planning!), and then I picked up another little sword and we actually had a sword fight (imaginative play!)! It took him a little bit to fall asleep Sat. night but he slept like a rock!
Sunday a.m., he got himself up and into the bathroom. We've had a little regression lately with not staying dry as often during the night and Sat into Sun he did pee through. When he got himself up from bed, though, he got his clothes off, put them in the dirty clothes basket, and went back into the bathroom. He even took a shower without having one of the non-epileptic seizures first! Throughout the day, he took himself to the bathroom or went when I would ask if he needed to pee - no accidents all day. And, he stayed completely dry during the night last night - as Peter would have said, Josh "peed like a racehorse" this a.m., but he was dry leading up to it!
The other things that happened yesterday - 1) Josh is my recycling guy - he has two large baskets that he will shred newspapers, or put his toys in, or whatever, but he likes playing with his baskets. Normally, if they got too full, he would ask me for a garbage bag, I'd have to empty the baskets, and I'd wind up taking the garbage bags out to the garbage bin in the garage. Yesterday, Josh was playing and said they were "too full." He picked up one basket, went out to the garage, and dumped it right into the garbage bin. Then he came back in and got the other basket, taking it out and doing the same thing. (he needed help holding the top of the garbage bin open but oh well).
2) Last Fall when we moved into the house, Josh and I spent a lot of time out on the sun porch - it's lovely out there, looking out on the garden, watching the wildlife, etc. But, after Josh broke his leg last Fall, he wouldn't go out there - even in his wheelchair at the time, he would cry if we took him out. This season, even though the weather has been wonderful for it, he really has not gone out there except to perhaps get a ball that rolled out (we keep the slider door open so the cats can go back/forth). Yesterday, Boompah was sitting out there. Josh walked out, sat down, started to talk to Boompah some, and we wound up spending pretty much the whole day out there - no TV until much, much later in the evening. We even had dinner out there!
3) This has been a hard year for Josh for a lot of different reasons, and he's dealing with a lot of emotional issues (on top of whatever hormonal stuff is going on with tween years!). As a result of all of this, he's had on/off progress with staying dry at night, and has actually regressed a little with peeing during the day - we've resorted to Depends more often than I think should be done, but it's better than washing clothes all the time. Anyhow, yesterday, as I said, he took himself to the bathroom and went when I asked if he needed to (his answer to that question lately has been, "NO!" and then he'd lay down on the floor and usually pee - not fun for either of us). He stayed dry all day (no Depends at all until bedtime last night - and that was dry this a.m.), even through a little snooze (which, in and of itself was unusual - he could snooze for hours, this one was less than an hour!).
4) Josh is not what you would call a night owl. His usual pattern is to go to bed and be asleep no later than 7:30 p.m., and he'd be up, lately, around 6:00 a.m. or so. His other pattern has been to sprawl out on the couch and truly be a couch potato from about 5:30 until he went to bed at 7:30 (at that, he'd fall asleep on the couch or the floor and I'd wake him to get him up to bed - either that or we'd have a major battle about going to bed) - he get up to eat, but go right back to couch potato-land. All day yesterday, he had more energy and was up and about, outside on the sunporch, playing with his radio control train, talking with Gramma and Boompah, etc. Last night I thought for sure he'd crash on the couch but NO! He finished dinner (out on the sunporch) before us so he came in to watch the Union Pacific movie while we finished. He didn't lay down much and if he did, he'd be up sitting and watching within a few minutes. We kept looking in to see if he had fallen asleep yet, but no. We'd see him sitting up, then lay down for a minute or two, then get up and walk around, come out to the sunporch again, and so on, barely watching the movie. It got to be about 8:30 and he was still awake when the UP movie ended. He asked to watch a Blue's Clues so I put one on while we were still outside chatting. Only then, toward the end of Blue, did he fall asleep on the couch. Gramma and Boompah left a little after 9, and I got him up to go up to bed - he went in and peed, I did put the Depend on him just in case, and he was back to sleep within minutes. Maybe the staying up later was coincidence since they were here, and the late night I think is having its effect now since he was up at his normal 6:00 a.m. and he is snoozing now (it's 9:45 a.m. right now), but who knows?
I did up the dose this a.m. to the one scoop per 8 oz of milk - he's had one serving this a.m. I even did a shake with the NV this a.m. - I used milk, threw in a tbsp of yogurt, and 1/2 banana for my breakfast - it's actually pretty tasty!
So, Day 3 is on its way - and it's going to rain any second. Josh had said he wanted to take the lawn mower out to walk around and "turn it on" - doesn't look like that's going to happen with the rain on the way. He also, though, was pushing the vacuum around the living room - now to just turn it on!
Uh oh, heavy rain has started - gotta go check the windows!!!
Monday, May 31, 2010
Sunday, May 30, 2010
day 2
Thought I'd post a little bit about Josh - he's a great kid, great sense of humor (OK, he likes the slapstick stuff most but, hey, he's a guy), loves to help out when he's in the mood to help, and, like most tweens, being in the mood is becoming rarer, and he is a real train fanatic.
Over the years, Josh has been diagnosed with verbal and oral apraxia, dysarthria, global dyspraxia, sensory integration dysfunction, hypotonia, cognitive delays, and last Fall was diagnosed with epilepsy. The last few years, docs have added the phrase "static encephalopathy" to his charts - although no one has been able to tell me what that really means. He also, because of some things that happened to him at school (I'm pretty sure this is the reason) and because he had 5 ER visits this past year (!) for various reasons, is now having psychogenic non-epileptic seizures. When Josh was born (during an F4 tornado!!!) he had sepsis - body temp went extremely low and wasn't taking his formula, etc. He was rushed to the hospital and we spent the first 8 days or so in the hospital. He came out of that just fine with docs saying there would be no long term effect (hhmm...), but stopped breathing while taking a bottle when he was about 6 weeks old. Another rush to the hospital, CPR training for everyone, and a sleep study showed sleep apnea. For the next 8 or 9 months, he was on a sleep monitor and caffeine. Again, docs said there would be no long term effect (again, hhhmm....). His first year, he came with me to the office pretty much every day since no daycare center would take a kid on a sleep monitor. He loved coming there, and secretaries at the office were incredible - if I had to take a call from a client or something like that, they would come get him and play with him. I spent a lot of time on the floor with him during that time - I would read my transcripts with one hand, and play with him with the other. Somehow, I managed to make my work quota, and he did OK.
By the time he turned 1, he was off the monitor and we put him in daycare. Colds and ear infections started immediately. We spent so much time at the ER with ear infections, we joked that they should name a room for him! We spent tons of money on amoxycillin and rosefen, too. When he was 16 months, he had an ear infection that somehow got into his blood and he had a febrile seizure - complex one that took almost 20 minutes to control at the ER. After medicos got it under control, doc was talking to us and, as he was leaving the room, said it sounded like there was another problem. Chest X-ray showed pneumonia and Josh was life-flighted to Peoria to rule out anything more serious. The worst 2 hours of my life was us driving to Peoria, watching the sky as the helicopter flew above us with our son. Fortunately, the MRI and EEG done in Peoria ruled out any other seizure disorder (at that time), the pneumonia cleared quickly, and things were back to "normal." Ear tubes followed a couple of months later.
During all this time, though, Josh was not meeting his milestones, just as he had not done during the first year of his life. During the first year, doc said the delays could have been from his size - to counter any effects of the caffeine, Josh had gone on rice cereal at a very early stage and he ballooned! If I recall correctly, he was upwards of 40 pounds at his first birthday - and not walking or crawling. He was starting to make sounds - he had most of the consonants, could say "mama" and "dada" but he lost all sounds with the febrile seizure. At 12 months, we told the doc we thought something was really wrong and took him to Easter Seals for evals - showed sensory integration dysfunction. The neuro doc in Peoria at 16 months added hypotonia to the mix. And, his speech therapist at about 2 years old suggested the possibility of apraxia - that was later confirmed at Shriner's Hospital in Chicago.
So, after working with him with PT, OT, SLP, and music therapy, he finally was able to sit unassisted at about 18 months. He learned to first roll all over the place (spatial abilities were amazing), then learned to army crawl. Interesting - he would army crawl all over my office except he would stop and refuse to go into the "alley" - a newer set of offices in the back where the carpet was the same texture but a different color. Man, those sensory issues are soooo weird!
When he was 3 1/2, on Christmas Day, he walked unassisted for the first time. He had been walking with assistance for about 6 months prior to that. The director of Easter Seals at that time, who had been a great friend and mentor during all this, would have Josh push the vacuum around and "clean" - great practice for walking and great therapy for him. For some reason, over the years, he has become oversensitized to the vacuum sound - he now wants the vacuum out, but rarely do I turn it on when he's home.
During all this, I was on the net, searching out info on sensory integration dysfunction, hypotonia (we even took a trip to Colorado where members of the hypotonia online group had an impromptu meeting and were able to meet with a neuromuscular doc from Oakland - she took a look at Josh and said he was going to be "just fine" - one the upswing of the average intelligence scales, but just fine). Then I found Lisa Geng and the childrens apraxia group. They were talking a lot about fish oils to help with speech. With Josh using only a "ba" syllable for everything, and after talking to his doc about it ("these are essential fatty acids - there's a reason they are essential!"), Josh went on fish oils on July 27, 2002. Within three weeks he was saying words! They were hard to understand, but he was communicating and trying to say more and more. He hasn't stopped talking since. He's still hard to understand, his articulation is not great, but he understands (and always has) pretty much everything and has a pretty large vocabulary.
Josh is 12 now - turned 12 on May 19. He has been in Special Olympics (divisional golds in basketball skills, track and field, bowling, and soccer; silver in gymnastics, track and field; State gold in basketball skills, silver in track and field, bronze in soccer - not bad for the kid the "evil doc" years ago who diagnosed him after 10 minutes as having mental retardation and said would never walk unassisted!). He loves school, has friends in his class, is starting to read sight words, does well in math (for his level), watches train movies, the AirBud movies, just started watching the Chipmunk movies, still likes Blue's Clues, loves his Gramma Bev and Boompah. He's been through a divorce with me, and a move from Ottawa, IL, to Hanover Park, and now to Crystal Lake where we have a beautiful house with a garden that surprises us everyday. We have two cats (Casey Jones and Burlington - do we see a train theme here??) who love to be out on our sunroom where they can watch the birds and chase real chipmunks around the perimeter.
Josh has had all sorts of therapies over the years - the usual PT, OT, SLT, music therapy, but also rock climbing therapy, aquatherapy, Sensory Learning, The Listening Therapy, and now will have some more private speech (I hope insurance will cover that!!), and this summer will attend, for one week, a camp at Bravehearts for therapeutic riding (along with a couple of other fun camps). If he takes to the therapeutic riding, it would be nice for him to continue with that - the stories that come out of that type of therapy are amazing and inspirational. The epilepsy appears to be controlled with Keppra - which, I hope, will be reduced and/or eliminated with the Nutriiveda (as in other cases that we have been told about via www.pursuitofresearch.org and www.childrensapraxianet.com) - we'll see. Josh is also seeing a psychologist for the non-epileptic seizures which, I hope, will better with the Nutriiveda. I'm more hopeful about him just having more energy and perhaps a speech surge - I'd love to see his articulation improve.
So that's my Josh, my guy. Right now, he's upstairs, contemplating coming downstairs for the day. Gramma and Boompah are coming today and I've got to mow the lawn (another noise he's not totally crazy about!). Day 2 on the low dose of NV is to begin - if he continues to not have a reaction to it, I'll up the dose tomorrow to 1 full scoop a.m. and 1 full scoop p.m., working up to the 2 scoops a.m. and p.m.
Over the years, Josh has been diagnosed with verbal and oral apraxia, dysarthria, global dyspraxia, sensory integration dysfunction, hypotonia, cognitive delays, and last Fall was diagnosed with epilepsy. The last few years, docs have added the phrase "static encephalopathy" to his charts - although no one has been able to tell me what that really means. He also, because of some things that happened to him at school (I'm pretty sure this is the reason) and because he had 5 ER visits this past year (!) for various reasons, is now having psychogenic non-epileptic seizures. When Josh was born (during an F4 tornado!!!) he had sepsis - body temp went extremely low and wasn't taking his formula, etc. He was rushed to the hospital and we spent the first 8 days or so in the hospital. He came out of that just fine with docs saying there would be no long term effect (hhmm...), but stopped breathing while taking a bottle when he was about 6 weeks old. Another rush to the hospital, CPR training for everyone, and a sleep study showed sleep apnea. For the next 8 or 9 months, he was on a sleep monitor and caffeine. Again, docs said there would be no long term effect (again, hhhmm....). His first year, he came with me to the office pretty much every day since no daycare center would take a kid on a sleep monitor. He loved coming there, and secretaries at the office were incredible - if I had to take a call from a client or something like that, they would come get him and play with him. I spent a lot of time on the floor with him during that time - I would read my transcripts with one hand, and play with him with the other. Somehow, I managed to make my work quota, and he did OK.
By the time he turned 1, he was off the monitor and we put him in daycare. Colds and ear infections started immediately. We spent so much time at the ER with ear infections, we joked that they should name a room for him! We spent tons of money on amoxycillin and rosefen, too. When he was 16 months, he had an ear infection that somehow got into his blood and he had a febrile seizure - complex one that took almost 20 minutes to control at the ER. After medicos got it under control, doc was talking to us and, as he was leaving the room, said it sounded like there was another problem. Chest X-ray showed pneumonia and Josh was life-flighted to Peoria to rule out anything more serious. The worst 2 hours of my life was us driving to Peoria, watching the sky as the helicopter flew above us with our son. Fortunately, the MRI and EEG done in Peoria ruled out any other seizure disorder (at that time), the pneumonia cleared quickly, and things were back to "normal." Ear tubes followed a couple of months later.
During all this time, though, Josh was not meeting his milestones, just as he had not done during the first year of his life. During the first year, doc said the delays could have been from his size - to counter any effects of the caffeine, Josh had gone on rice cereal at a very early stage and he ballooned! If I recall correctly, he was upwards of 40 pounds at his first birthday - and not walking or crawling. He was starting to make sounds - he had most of the consonants, could say "mama" and "dada" but he lost all sounds with the febrile seizure. At 12 months, we told the doc we thought something was really wrong and took him to Easter Seals for evals - showed sensory integration dysfunction. The neuro doc in Peoria at 16 months added hypotonia to the mix. And, his speech therapist at about 2 years old suggested the possibility of apraxia - that was later confirmed at Shriner's Hospital in Chicago.
So, after working with him with PT, OT, SLP, and music therapy, he finally was able to sit unassisted at about 18 months. He learned to first roll all over the place (spatial abilities were amazing), then learned to army crawl. Interesting - he would army crawl all over my office except he would stop and refuse to go into the "alley" - a newer set of offices in the back where the carpet was the same texture but a different color. Man, those sensory issues are soooo weird!
When he was 3 1/2, on Christmas Day, he walked unassisted for the first time. He had been walking with assistance for about 6 months prior to that. The director of Easter Seals at that time, who had been a great friend and mentor during all this, would have Josh push the vacuum around and "clean" - great practice for walking and great therapy for him. For some reason, over the years, he has become oversensitized to the vacuum sound - he now wants the vacuum out, but rarely do I turn it on when he's home.
During all this, I was on the net, searching out info on sensory integration dysfunction, hypotonia (we even took a trip to Colorado where members of the hypotonia online group had an impromptu meeting and were able to meet with a neuromuscular doc from Oakland - she took a look at Josh and said he was going to be "just fine" - one the upswing of the average intelligence scales, but just fine). Then I found Lisa Geng and the childrens apraxia group. They were talking a lot about fish oils to help with speech. With Josh using only a "ba" syllable for everything, and after talking to his doc about it ("these are essential fatty acids - there's a reason they are essential!"), Josh went on fish oils on July 27, 2002. Within three weeks he was saying words! They were hard to understand, but he was communicating and trying to say more and more. He hasn't stopped talking since. He's still hard to understand, his articulation is not great, but he understands (and always has) pretty much everything and has a pretty large vocabulary.
Josh is 12 now - turned 12 on May 19. He has been in Special Olympics (divisional golds in basketball skills, track and field, bowling, and soccer; silver in gymnastics, track and field; State gold in basketball skills, silver in track and field, bronze in soccer - not bad for the kid the "evil doc" years ago who diagnosed him after 10 minutes as having mental retardation and said would never walk unassisted!). He loves school, has friends in his class, is starting to read sight words, does well in math (for his level), watches train movies, the AirBud movies, just started watching the Chipmunk movies, still likes Blue's Clues, loves his Gramma Bev and Boompah. He's been through a divorce with me, and a move from Ottawa, IL, to Hanover Park, and now to Crystal Lake where we have a beautiful house with a garden that surprises us everyday. We have two cats (Casey Jones and Burlington - do we see a train theme here??) who love to be out on our sunroom where they can watch the birds and chase real chipmunks around the perimeter.
Josh has had all sorts of therapies over the years - the usual PT, OT, SLT, music therapy, but also rock climbing therapy, aquatherapy, Sensory Learning, The Listening Therapy, and now will have some more private speech (I hope insurance will cover that!!), and this summer will attend, for one week, a camp at Bravehearts for therapeutic riding (along with a couple of other fun camps). If he takes to the therapeutic riding, it would be nice for him to continue with that - the stories that come out of that type of therapy are amazing and inspirational. The epilepsy appears to be controlled with Keppra - which, I hope, will be reduced and/or eliminated with the Nutriiveda (as in other cases that we have been told about via www.pursuitofresearch.org and www.childrensapraxianet.com) - we'll see. Josh is also seeing a psychologist for the non-epileptic seizures which, I hope, will better with the Nutriiveda. I'm more hopeful about him just having more energy and perhaps a speech surge - I'd love to see his articulation improve.
So that's my Josh, my guy. Right now, he's upstairs, contemplating coming downstairs for the day. Gramma and Boompah are coming today and I've got to mow the lawn (another noise he's not totally crazy about!). Day 2 on the low dose of NV is to begin - if he continues to not have a reaction to it, I'll up the dose tomorrow to 1 full scoop a.m. and 1 full scoop p.m., working up to the 2 scoops a.m. and p.m.
Saturday, May 29, 2010
May 28, 2010
After researching the contents, speaking with the science advisory board, and taking a huge leap of faith, Josh started on Nutriiveda today. SAB says there is no MSG created by the process of isolating the whey protein and that was my major concern.
So, I'm starting him slowly - dose for his age/size should be, according to what I've read, 4 scoops per day. I'm starting him on one until I'm sure there will be no reaction. Of course, about an hour and a half into our ride to Rochelle today, he started doing the coughing thing that he does when he gets MSG and I started thinking, well, that's that. But, we were also passing a huge grain "elevator" plant so perhaps it was just regular allergies hitting him. He did not have the same reaction tonight when he had the second half of the dose. So, we'll see.
I am so hopeful that NV will have some effect on him. He has so much energy first thing in the a.m. until about 10:30, and then he just starts fading to the point that, when it is bedtime, he's spread out on the couch and won't move. I'm hoping those B vitamins in NV will help with energy. I know, I know - when he first went on fish oils, I kept saying I hoped they would have an effect on his speech and, gosh, don't you know you have to be careful what you hope for! LOL! He hasn't stopped talking since three weeks after starting fish oils and that was, what, 8 years ago.
Anyhow, I know the possibility that the minimal dosage I'm doing with him to start is not going to have much of an effect but we'll see what happens after this few day trial period.
Wish us luck!
So, I'm starting him slowly - dose for his age/size should be, according to what I've read, 4 scoops per day. I'm starting him on one until I'm sure there will be no reaction. Of course, about an hour and a half into our ride to Rochelle today, he started doing the coughing thing that he does when he gets MSG and I started thinking, well, that's that. But, we were also passing a huge grain "elevator" plant so perhaps it was just regular allergies hitting him. He did not have the same reaction tonight when he had the second half of the dose. So, we'll see.
I am so hopeful that NV will have some effect on him. He has so much energy first thing in the a.m. until about 10:30, and then he just starts fading to the point that, when it is bedtime, he's spread out on the couch and won't move. I'm hoping those B vitamins in NV will help with energy. I know, I know - when he first went on fish oils, I kept saying I hoped they would have an effect on his speech and, gosh, don't you know you have to be careful what you hope for! LOL! He hasn't stopped talking since three weeks after starting fish oils and that was, what, 8 years ago.
Anyhow, I know the possibility that the minimal dosage I'm doing with him to start is not going to have much of an effect but we'll see what happens after this few day trial period.
Wish us luck!
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