So the non-encouraging portion of this quick post is that 4/6 of our little family had the stomach flu this past weekend (Daddy and the three olders). Not fun. I am thankful that I appear to be done with cleaning up vomit for awhile.
HOWEVER, the exciting point that I observed was when I came home from church on Sunday. When I had left, N had actually been vomit-free since the morning before and was telling me he felt great. Still, I left him home and took only his brother with me. After getting home a couple of hours later, I was greeted by a weepy, flushed N who was fighting back tears about his sister watching yet another episode of Murder She Wrote. He wanted to watch one of his shows and was upset that she had started another one.
I asked him if he was feeling sick? No.
Was he tired? No.
Then I told him to find something to do while waiting his turn. He went and found Scrabble and asked me to play. I told him that we would after I got his brother some lunch and down for a nap. More tears! Ugh! It was as if we had stepped back in time one year. The inflexible, weepy N had re-emerged! I wanted to weep myself, but then the simple truth dawned on me! With him not being able to keep anything down for 2 days, he hadn't taken any of his meds! I directed him to do so straight away! Within an hour, he was back to being his newer easy-going, flexible self. Hallelujah!
This was so exciting to me! It was proof, once more, that what we are doing IS making a HUGE difference! As mentioned before, his 'chronic daily headache syndrome' is long gone (take that, Mrs. Pediatrician with her amphetamines!) and his brain is navigating daily life more emotionally secure. His muscle tone and energy level are much improved as well.
Also, because of standardized testing last week, he did not have his neurofeedback session. Two weeks without therapy meant a return to more hyper-focusing and 'scrapbooking' about his current favorite topic, which at this point happens to be HTML coding. Yeah. While not quite as severe as before (he was still able to read my exaggerated eye rolling and big sighs), it was a noticeable difference to when he is regularly having his therapy. According to the computer data, we are making progress, but his brain still has many more front-to-back pathways to make, so it will still be a process there.
In conclusion, I guess one of the best ways to see if something is working is to eliminate it. While I do not think most medical professionals would agree with that statement, it was a good bench test for us!
Blessings,
Hillary At Home
Showing posts with label neurofeedback. Show all posts
Showing posts with label neurofeedback. Show all posts
Tuesday, April 8, 2014
Wednesday, March 5, 2014
March Appt. and Update!
It's been awhile, but we finally had our quarterly appointment today. In the meantime, poor N has been put through another gauntlet of pokes, draws, and samples which we sent off to labs far, far away...Today's appointment was basically to check the labs from January and see where we're at 6 months into treatment.
What we found is:
Stomach: The bacterial infection is better but not gone. Instead of 4 strains of bad bac. showing up, only one did, so he has to go back on a stronger dose of the anti-microbial for a longer period to see if we can git 'r done. He also is showing no improvement with the good e.coli. He still doesn't show any levels of it. After we finish 3 weeks on the anti-microbial, we'll start a higher dose of the e.coli and hopefully it will take.
Yeast: His levels are back up which is no surprise since we've reintroduced fruit,white rice, gf oats, etc. and I haven't been monitoring the candy and syrup as much. His levels are still 'normal' at a +1, but we're still going to watch it. Dr. Bock doesn't think we need to go fully back on the protocol and meds again, but we are going to be more diligent about spacing out the grains and fruits, and continue w/ Candex (a natual yeast-fighting enzyme) in hopes that we don't need to restart an anti-fungal.
Hypotonia-We are doubling the dosage on his Acetyl L-carnitine and his Ubiquinol in hopes that it will continue to help with his muscle tone. While we have seen some improvement in this area, it's very limited.
His Vit. D was better, but still on the low end of normal. I was encouraged by this. Even though we need to increase his dose, the levels show that he is absorbing a great deal of his supplements which is great!
Now for the new, interesting developments:
Arsenic.
Yep. While we haven't been eating shellfish and tuna, we have re-introduced white rice which does contain arsenic. While it's an organic (as in naturally occurring, not organically farmed) arsenic and it's the inorganic arsenic that usually causes problems, it shows us that his body is not flushing it out like it should. We know his sulfate and glutathione levels are low (which is why he takes transdermal creams for those), but we are adding in a more concentrated sulfate cream and a Taurine supplement to help boost his metabolic processes to work properly. (You can read about Taurine here).
Also, I've been seeing a smattering of articles relating Vitamin C deficiency to ASD come through my Facebook feed and NIDS forums. When I asked Dr. Bock about this, he said that it wasn't tested for directly in N's case, but if there's a Vit. C problem, it usually shows up in some of the other panels that are run. While he agrees there's definitely benefits to Vitamin C, he doesn't necessarily see a deficiency as a big trigger with my son. So, we'll go ahead and throw one pill in the mix each day as an added immune booster.
Now, lab tests aside, N is wowing us every day! He is learning to snowboard (which requires great balance and coordination) and he is keeping up with the rest of his group and not needing one-on-one teaching! He is also participating in Tang Soo Do Karate and is getting ready to test for his orange belt in a few weeks. His focus and discipline to be able to do this is astounding considering his past issues in those areas! He is still as sweet and endearing as ever, but is definitely developing a more well-rounded interest in activities and conversations. He is excited to resume Little League next month, and is soaring through a Coding curriculum to learn to program in various computing languages. He completed one year's worth of curric in one semester and has moved on to the next. He definitely gets that from his Daddy, and not me!
We are finishing up our 3rd year of biofeedback therapy. In January, the therapist switched 'targets' and is now using a method that specifically works on him being able to shift his thought patterns so that he is not hyper-focusing. We have seen drastic results. While the data test (yesterday) showed that he still needs a lot of work in this area to cement the pathways, his behaviorial data is fantastic. We are greatly encouraged by this development.
As always, when I write these updates, I am overwhelmed with gratitude for all the Lord has granted us in being able to help our son. Between financial provision, attentive specialists and therapists, and graciously patient snowboarding and karate instructors, I am reminded that this is not a one-person journey. I am confident, however, that N has a wonderful life ahead of him, and that he will be successful, even if challenged, in all that he does because of the support he's receiving now.
Blessings to you all,
Hillary and N
What we found is:
Stomach: The bacterial infection is better but not gone. Instead of 4 strains of bad bac. showing up, only one did, so he has to go back on a stronger dose of the anti-microbial for a longer period to see if we can git 'r done. He also is showing no improvement with the good e.coli. He still doesn't show any levels of it. After we finish 3 weeks on the anti-microbial, we'll start a higher dose of the e.coli and hopefully it will take.
Yeast: His levels are back up which is no surprise since we've reintroduced fruit,white rice, gf oats, etc. and I haven't been monitoring the candy and syrup as much. His levels are still 'normal' at a +1, but we're still going to watch it. Dr. Bock doesn't think we need to go fully back on the protocol and meds again, but we are going to be more diligent about spacing out the grains and fruits, and continue w/ Candex (a natual yeast-fighting enzyme) in hopes that we don't need to restart an anti-fungal.
Hypotonia-We are doubling the dosage on his Acetyl L-carnitine and his Ubiquinol in hopes that it will continue to help with his muscle tone. While we have seen some improvement in this area, it's very limited.
His Vit. D was better, but still on the low end of normal. I was encouraged by this. Even though we need to increase his dose, the levels show that he is absorbing a great deal of his supplements which is great!
Now for the new, interesting developments:
Arsenic.
Yep. While we haven't been eating shellfish and tuna, we have re-introduced white rice which does contain arsenic. While it's an organic (as in naturally occurring, not organically farmed) arsenic and it's the inorganic arsenic that usually causes problems, it shows us that his body is not flushing it out like it should. We know his sulfate and glutathione levels are low (which is why he takes transdermal creams for those), but we are adding in a more concentrated sulfate cream and a Taurine supplement to help boost his metabolic processes to work properly. (You can read about Taurine here).
Also, I've been seeing a smattering of articles relating Vitamin C deficiency to ASD come through my Facebook feed and NIDS forums. When I asked Dr. Bock about this, he said that it wasn't tested for directly in N's case, but if there's a Vit. C problem, it usually shows up in some of the other panels that are run. While he agrees there's definitely benefits to Vitamin C, he doesn't necessarily see a deficiency as a big trigger with my son. So, we'll go ahead and throw one pill in the mix each day as an added immune booster.
Now, lab tests aside, N is wowing us every day! He is learning to snowboard (which requires great balance and coordination) and he is keeping up with the rest of his group and not needing one-on-one teaching! He is also participating in Tang Soo Do Karate and is getting ready to test for his orange belt in a few weeks. His focus and discipline to be able to do this is astounding considering his past issues in those areas! He is still as sweet and endearing as ever, but is definitely developing a more well-rounded interest in activities and conversations. He is excited to resume Little League next month, and is soaring through a Coding curriculum to learn to program in various computing languages. He completed one year's worth of curric in one semester and has moved on to the next. He definitely gets that from his Daddy, and not me!
We are finishing up our 3rd year of biofeedback therapy. In January, the therapist switched 'targets' and is now using a method that specifically works on him being able to shift his thought patterns so that he is not hyper-focusing. We have seen drastic results. While the data test (yesterday) showed that he still needs a lot of work in this area to cement the pathways, his behaviorial data is fantastic. We are greatly encouraged by this development.
As always, when I write these updates, I am overwhelmed with gratitude for all the Lord has granted us in being able to help our son. Between financial provision, attentive specialists and therapists, and graciously patient snowboarding and karate instructors, I am reminded that this is not a one-person journey. I am confident, however, that N has a wonderful life ahead of him, and that he will be successful, even if challenged, in all that he does because of the support he's receiving now.
Blessings to you all,
Hillary and N
Friday, October 5, 2012
October 5th and so much GREAT news!
First off, we are so thrilled and thankful that we ARE able to get N's SPECT Scan done at Providence Hosp. in Anchorage! I should be able to call and make the appointment today. The Radiologist said that there is a 2-3 day turnaround time, so we should be able to get him up there in the next week or two. It is PFD time up here, so flights are booking up. That will probably be our biggest delay.
We have received back all of the bloodwork. Everything came back normal except that he is extremely low in Vit. D. It's not uncommon up here, but his levels were pretty low-especially considering he takes a mulit-vit that has Vit. D in it. So, we're upping him an additional 1000 i.u. a day.
The best news of all is that we are already seeing massive improvements! It's crazy and almost creepy. I didn't expect to see any changes for at least 6 months by what I've been reading, but it's like a switch has went on. There are two things we have struggled with N about for years. To avoid embarrassing him even more than I already am by having this blog in the first place, I will just say that the human body is full of cavities and spaces, i.e. stomach, bladder, mouth, sinuses. In order to gage that a person has a 'full' feeling in this spaces, you have to receive the message from your brain. Well, my son was not getting those messages so we had food stuffing and over reating among other spatial-planning issues. Like a switch, the past week he has spun a 180 and begun paying attention to his body in normally-developing ways. He has suddenly become the sloooowest eater; taking smaller bites, visiting pleasantly, AND leaving food on his plate instead of reaching for 2nds and 3rds! He is also paying attention to those other biological signals and making sure that he empties those other cavities when they are full. (Is that cryptic yet clear enough? lol) After seeing him calmly put down his Nintendo DS and walk to the restroom the other day, I asked him if was able to better pay attention to his body now, and he said "Yeah. I can feel it so much better now." Wow! It's amazing, yet it makes so much sense. If you live in a head cold-like fog 24/7, it would be understandable that your bodies' signals would be so dulled. No wonder he didn't feel them until he was about to explode or throw up!
Finally, the last bit of news (which also ties into the above), is that his Neurofeedback counselor has been able to successfully work with his front temporal lobe the past two sessions. She is getting a strong signal and he doesn't seem to be complaining about the instant headaches he was getting whenever she tried to stimulate that area before. When I told her about our successes with his spatial planning, she is quite sure that he is finally laying down new pathways in that area of his brain. The pediatrician and I both wish we had been able to do a SPECT scan before she started doing that so we could compare it to now, but oh well...Besides, there's only so much radioactive tracer that I want to inject in my kiddo!
Anyway, thank you for your kind words of encouragement. We are so hopeful and optimistic. The Lord is really working in incredible ways. I pray that we continue to be patient and trusting and not get ahead of Him. I also pray that, somehow (!), our experience will be a help to others who feel stuck on the 'A List'. Hugs and Blessings to you all!
Love,
Hillary
We have received back all of the bloodwork. Everything came back normal except that he is extremely low in Vit. D. It's not uncommon up here, but his levels were pretty low-especially considering he takes a mulit-vit that has Vit. D in it. So, we're upping him an additional 1000 i.u. a day.
The best news of all is that we are already seeing massive improvements! It's crazy and almost creepy. I didn't expect to see any changes for at least 6 months by what I've been reading, but it's like a switch has went on. There are two things we have struggled with N about for years. To avoid embarrassing him even more than I already am by having this blog in the first place, I will just say that the human body is full of cavities and spaces, i.e. stomach, bladder, mouth, sinuses. In order to gage that a person has a 'full' feeling in this spaces, you have to receive the message from your brain. Well, my son was not getting those messages so we had food stuffing and over reating among other spatial-planning issues. Like a switch, the past week he has spun a 180 and begun paying attention to his body in normally-developing ways. He has suddenly become the sloooowest eater; taking smaller bites, visiting pleasantly, AND leaving food on his plate instead of reaching for 2nds and 3rds! He is also paying attention to those other biological signals and making sure that he empties those other cavities when they are full. (Is that cryptic yet clear enough? lol) After seeing him calmly put down his Nintendo DS and walk to the restroom the other day, I asked him if was able to better pay attention to his body now, and he said "Yeah. I can feel it so much better now." Wow! It's amazing, yet it makes so much sense. If you live in a head cold-like fog 24/7, it would be understandable that your bodies' signals would be so dulled. No wonder he didn't feel them until he was about to explode or throw up!
Finally, the last bit of news (which also ties into the above), is that his Neurofeedback counselor has been able to successfully work with his front temporal lobe the past two sessions. She is getting a strong signal and he doesn't seem to be complaining about the instant headaches he was getting whenever she tried to stimulate that area before. When I told her about our successes with his spatial planning, she is quite sure that he is finally laying down new pathways in that area of his brain. The pediatrician and I both wish we had been able to do a SPECT scan before she started doing that so we could compare it to now, but oh well...Besides, there's only so much radioactive tracer that I want to inject in my kiddo!
Anyway, thank you for your kind words of encouragement. We are so hopeful and optimistic. The Lord is really working in incredible ways. I pray that we continue to be patient and trusting and not get ahead of Him. I also pray that, somehow (!), our experience will be a help to others who feel stuck on the 'A List'. Hugs and Blessings to you all!
Love,
Hillary
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