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lightomni
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Posted: Fri Aug 3rd, 2007 02:23 |
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As always, thank you for your wonderful insight and support
UDXmom
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Aspergers PDD-NOS ODD anxiety hypothyroid adrenal insuf obesity CFS 125D40 Ph1Jun07 ModPh2Aug07 Ph2May08 Armour thyroid gaba prn 5HTP & R-Alpha lipoic acid for intol sxs 25D8 (Oct07) NoIRs low lux home limited outings covered
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lightomni
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Posted: Tue Aug 7th, 2007 19:30 |
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Benicar 40mg q6h, 8h overnight; 75mg Mino; avoiding light and D and wearing NoIR
Omni seems a bit better. He had reported more minor hot flash episodes that have since gone away. Still very, very fatigued, but without the silly giddy sleepy part. He is snoring but I did not hear apnea-type snorts or high/low sounds. Very steady low grade snore. He does not have any throat tightening.
He is not always waking up to take his 6am Benicar, which is a function of the increased fatigue/sleepiness. I think he went past the 8 hours on more than one occassion, so we have told him to take an extra Benicar at bed.
Since the 8hr barricade is so important and because a normal school schedule needs to be reestablished he will be waking earlier and working back to 6am this month. I have also begun to discuss the possibility of naps.
Barb: Omni is ready to move to his next abx dose; what do you recommend?
UDXmom
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Aspergers PDD-NOS ODD anxiety hypothyroid adrenal insuf obesity CFS 125D40 Ph1Jun07 ModPh2Aug07 Ph2May08 Armour thyroid gaba prn 5HTP & R-Alpha lipoic acid for intol sxs 25D8 (Oct07) NoIRs low lux home limited outings covered
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Aussie Barb
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Posted: Tue Aug 7th, 2007 19:49 |
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Thanks Mom
Have you sent the Questionnaire and made the Drs appointment? if not you will have to assess if staying at 75mg mino is tolerable or whether he needs to try to progress to the 100mg dose. reminder re extra Benicar if progressing. We prefer using a lower dose of two antibiotics than pushing toward intolerable on the higher dose of one.
Thanks, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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lightomni
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Posted: Thu Aug 9th, 2007 02:59 |
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We sent the questionnaire and have an appointment in 2 weeks. I think I will move him to the 100mg mino and monitor his compliance with the q6h Benicar better. We can back off if need be.
UDXmom
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Aspergers PDD-NOS ODD anxiety hypothyroid adrenal insuf obesity CFS 125D40 Ph1Jun07 ModPh2Aug07 Ph2May08 Armour thyroid gaba prn 5HTP & R-Alpha lipoic acid for intol sxs 25D8 (Oct07) NoIRs low lux home limited outings covered
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lightomni
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Posted: Fri Aug 10th, 2007 22:31 |
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Benicar 40mg q6h (really); 75mg mino q48h; NoIR, Avoid D
Omni is definitely leveled off and even seems to be fairly energetic. He will be reading some parts in an Eagle Court of Honor for a friend tomorrow and will go to see Spam-a-lot with us on Sunday. I will hold off increasing his dose and will increase his Benicar to help with increased light exposure, so that he can have good experiences this weekend. Then we will attempt the 100mg mino, with only 1 week before seeing Doc.
UDXmom
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Aspergers PDD-NOS ODD anxiety hypothyroid adrenal insuf obesity CFS 125D40 Ph1Jun07 ModPh2Aug07 Ph2May08 Armour thyroid gaba prn 5HTP & R-Alpha lipoic acid for intol sxs 25D8 (Oct07) NoIRs low lux home limited outings covered
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Aussie Barb
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Posted: Fri Aug 10th, 2007 22:36 |
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| Thank you Mom, take care, and enjoy, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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lightomni
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Posted: Wed Aug 15th, 2007 04:45 |
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Benicar 40mg q6h(for real, this time); start 100mg mino 8/14/07.
Omni's hot flashes gradually dissapated, probably because we enforced the q6h rule. Had a good enough weekend and was a good public speaker. Great experience for him, with plenty of fun social interaction.
Q4h Benicar helped Omni through a long social event with bright lights and car trips. Good practice for school.
Irritability and flashes of anger are appearing in a manner consistent with past decreases of glycine supplementation. I know MP is best done with no external substances that may possibly interfere, but we can't have a high school senior that regularly flashes up with anger and the occasional violence. He will be using enough glycine to control aggression/irritability and we will wean him off it as we can.
I THOUGHT I had sent in the questionnaire last week, but...brain fog wins again. It is in now!
UDXmom
Last edited on Wed Aug 15th, 2007 04:54 by lightomni
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Aspergers PDD-NOS ODD anxiety hypothyroid adrenal insuf obesity CFS 125D40 Ph1Jun07 ModPh2Aug07 Ph2May08 Armour thyroid gaba prn 5HTP & R-Alpha lipoic acid for intol sxs 25D8 (Oct07) NoIRs low lux home limited outings covered
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Aussie Barb
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Posted: Wed Aug 15th, 2007 05:04 |
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Thank you Mom
Are you able to assess if extra Benicar is helpful to minimising symptoms instead of using Glycine? We prefer using a lower dose of two antibiotics than pushing toward intolerable on the higher dose of one.
Thanks, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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lightomni
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Posted: Wed Aug 15th, 2007 05:58 |
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Barb: We have a few weeks until I would need to start him on anything. I wish I had gotten the questionnaire in when I thought I had!
We have been using increased Benicar for events. This has improved his resiliency during the event, but in the longer term he gets crankier and crankier. There would be no problem with the doc or financially to attempt a q4h schedule during the school year if it may prevent the need for a supplemental intervention.
We will need to set up a plan next Monday at the doctor's that can be put into his IEP, complete with a letter from the doctor. Only the sun avoidance and Benicar used during school hours must be established and shared with the school at that time. My plan was to have him use Benicar just before school; at lunch; and immediately after school. This works out to approximately q3h during those hours, and mimics the timing we have used so far for events. We could set up a q4h for the rest of the day as a trial.
We should be ready to discuss optimal antibiotic dosing with doc by Monday, also, to keep symptoms steady and manageable. If such options can control symptoms without resorting to glycine I am all for it.
I have a pretty good feel from behavior at home about whether he is level enough to handle the school environment. He's not, right now.
UDXmom
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Aspergers PDD-NOS ODD anxiety hypothyroid adrenal insuf obesity CFS 125D40 Ph1Jun07 ModPh2Aug07 Ph2May08 Armour thyroid gaba prn 5HTP & R-Alpha lipoic acid for intol sxs 25D8 (Oct07) NoIRs low lux home limited outings covered
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Aussie Barb
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Posted: Wed Aug 15th, 2007 06:07 |
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| Thank you Mom...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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lightomni
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Posted: Wed Aug 15th, 2007 17:47 |
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Benicar q6h with 2 extra in last 24hrs; 100mino last night
Omni is not having flushes anymore. Had trouble sleeping due to runny nose, which was constantly streaming. A little angry with me because he took the extra Benicar in-between and it didn't miraculously make it all better. Autistic people are so literal! But so far, symptoms are tolerable.
UDXmom
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Aspergers PDD-NOS ODD anxiety hypothyroid adrenal insuf obesity CFS 125D40 Ph1Jun07 ModPh2Aug07 Ph2May08 Armour thyroid gaba prn 5HTP & R-Alpha lipoic acid for intol sxs 25D8 (Oct07) NoIRs low lux home limited outings covered
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lightomni
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Posted: Thu Apr 10th, 2008 07:26 |
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This is UDXmom reporting re Lightomni
I promised in the phase 2 forum to give more information here.
I find that I am reluctant to freely share all of the progress I see in lightomni for the following reasons:
- It is only natural to seek progress and assign such when the young subject may be experiencing other factors, such as maturation normal for his/her potential.
- We have made multiple, extensive, and somewhat successful interventions for Lightomni in an enriched and supportive environment. There is no way to measure or tease out the impact of those interventions vs the impact of MP
- Lightomni has a major physical component to his illness. Some of his autistic friends appear perfectly "healthy", as though a singular event disturbed their development, from which they must recover. He may or may not be representative of the entire population.
- Raising a neurologically typical child is a difficult, ongoing, multifaceted task. Even if MP is an important piece needed to repair their brains, damage control and rehabilitation cannot be swept aside.
That said, I think Lightomni is showing significant MP-related progress!
Some background:
Before beginning MP, we had used supplements to significantly relieve his crippling anxiety & explosive anger. He had participated in Relationship Development Intervention, which is designed to help the brain make "workaround" neural pathways instead of just teaching rote responses. At the start point of MP, Lightomni had reached a stable emotional position and enough RDI skills and motivations in place to begin to seek out his own growth.
Remember that a human infant has a hard-wired boot-up system that drives them to learn more in the first few years than they could possibly be taught in the same time frame later in life. That's why infant/toddlers are so exhausting! We take many of these skills and abilities for granted, until that infant is autistic and fails to boot up a working operating system, so to speak. Once a certain level of skills and motivations are successfully in place, the human is now capable and motivated to seek out necessary stimulation for further learning. Lightomni had reached that point.
At the initial MP start-up point, Lightomni was growing slowly and steadily, with a good shot at belonging to the 3% of people on the autistic spectrum who go on to live independently. His physical health was the rate-limiting obstacle and is the reason he embarked on his MP journey.
The first several months were difficult; he had to be placed on a modified phase one plan. He moved through that phase slowly and is almost ready to start phase two.
During this past 9 months there have been three separate "plateaus", I have called them. Each time he made gains that: occurred after a particularly difficult herx; were abrupt enough to be called a "leap" in growth; and remained long term.
The first dealt with his stamina and willingness to be around people and in challenging, sustained situations. He subsequently decided to finish his Eagle Scout Rank, and then did so. By the end lightomni was suffering terrible light sensitivity and herx and was out of school, but he did it and was self-motivated under challenging circumstances. He continues to be able to participate in hours-long activities without crashing and withdrawing. We recently lowered his abx for a week so that he could be the Master of Ceremonies for a friend's Eagle Court of Honor, and he stood up there in front of 60 people for an hour and was engaging and funny. Couldn't have happened last year.
The second "leap" was physical energy/circadium rhythm-related. Lightomni never really had an ebb/peak to his energy before that, and always struggled to wake in the morning and get going. Dragging through life was just as hard first thing in the morning as at noon as at bedtime. Life has peaks and valleys for him now, even though he still suffers from fatigue and needs to sleep a lot. His pulse came down somewhat and has stayed closer to normal. I think his adrenal function improved, although we have no before/after test to prove that.
The third leap, which happened this past week, had to do with mental energy and an AHA! experience. It is harder to describe these kinds of changes, but I will try.
At the beginning of his homebound schooling period, Lightomni told me that part of his anxiety and angst about being alone is that no one gives him feedback and he doesn't know how he is doing or if he is a good person or not. Partly this is a normal teenager experience, but it is greatly accentuated in autism. This reflects weakness in the ability to self-evaluate. But he is a teenager, and he has been trying to figure himself out.
He was dealing with some very severe depression - it is amazing how many emotional symptoms are occurring as we treat infection. I was in the process of deciding on another temporary decrease in antibiotics. But this time, the depression not only passed, but Omni reported that he had had some sort of epiphany, and was feeling happiness and wholeness he had not experienced before.
He was talking to a friend about his (dungeon and dragon influenced) theory of personality components, and ideas began clicking in his head that these were all defense mechanisms and distortions of his real self. This realization brought him a sense of elation and happiness because as he talked about it, that suppressed and injured real self emerged for him. He experienced joy and a yearning to feel things. He told me he has never felt JOY and was revelling in the feeling: he even went for a walk in the rain because it felt so good to feel things. In our conversation he explained that the personality component he had labeled "charity" had the job of telling him what was the right thing to do. He would do those things out of a sense of duty and/or guilt, but until now hadn't felt particularly caring about other people, or playing violin, or learning something interesting at school.
Omni says this "real self" he has discovered is a Bard: he likes people and wants to hear their stories and finds other people and their stories very interesting. He loves music, learning, public speaking, singing, and has joy! Two days later he announced that he wanted to take online classes. (That's good, because that has been the plan).
I suspect caring is a more sophisticated emotion that involves integrated function between decision-making/fact structuring and emotions. We can teach autistic people what is the right thing to do, but they can't associate the emotional tag to that.
Obviously Omni has a long way to go in learning to manage and express these newfound integrations of emotion with his knowledge of right behavior. I like to think this epiphany was enabled because his frontal cortex/limbic integration is improving; there are memory and functional neural pathways available for use that weren't available just some months ago.
This is seriously cool for an autistic person.
We have since raised his abx dose, with an expected temporary increase in agitation, but he retains this underlying perspective and positive outlook instead of being swallowed into the agitation while it is present.
lightomni: subtle but important changes
Interview with Doreen V. - Autism, ADHD depression, severe anxiety, CFS
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Aspergers PDD-NOS ODD anxiety hypothyroid adrenal insuf obesity CFS 125D40 Ph1Jun07 ModPh2Aug07 Ph2May08 Armour thyroid gaba prn 5HTP & R-Alpha lipoic acid for intol sxs 25D8 (Oct07) NoIRs low lux home limited outings covered
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lightomni
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Posted: Sun May 18th, 2008 23:53 |
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Lightomni has gained 20 lbs in 2 months, after not having gained ANY during his difficult months on MP. His gluten free diet has slipped, which could be a cause; but another significant change has been reduction of Benicar.
I am going to increase Benicar to q3h during waking hours and work on getting the gluten back out of the diet. Inflammation seems to fuel his cravings, which fuel the inflammation, which fuels the weight gain.
It is my hypothesis that additional Benicar, beyond that which is needed to minimize obvious IP, could help break this cycle for him. We'll see.
Anyone interested in the science behind my thinking could read Mastering Leptin by Byron Richards. He has not done original research, but is a nutritionist who has put forward a solid, workable theory about how the hormone leptin works. His work clearly outlines the connection between inflammation (from any source) and weight gain. Outlines the interplay between leptin, estrogen, thyroid, adrenal, stomach and insulin hormone systems and explains the mechanisms by which inflammation and excess weight are involved.
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Aspergers PDD-NOS ODD anxiety hypothyroid adrenal insuf obesity CFS 125D40 Ph1Jun07 ModPh2Aug07 Ph2May08 Armour thyroid gaba prn 5HTP & R-Alpha lipoic acid for intol sxs 25D8 (Oct07) NoIRs low lux home limited outings covered
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lightomni
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Posted: Sun Nov 2nd, 2008 08:21 |
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It has been several months since I have written an update on Lightomni's progress. I see my last comment was regarding his weight gain when we went back to 6 hr Benicar. More frequent (q4hr) Benicar does, indeed, benefit him in terms of weight control, even though the extra dose per day does not seem to have a significant impact on other symptoms. He stays at 4hr Benicar as his base dose, except when sleeping.
Lightomni has had small bump in his thyroid medication which did not change his weight but helped him with brain fog problems, made sleep easier, and cleared up some underlying fatigue and mental symptoms so that herxing cycles stand out more clearly.
I have noticed that my kids don't get sick very often on the MP. Other people get colds and flu, etc. We just carry on as though nothing ever touches us. Must be the ramped up immune system. But recently a particularly bad bug went around, and we all got it. Horrible headaches, dizziness, exhaustion. No vomiting or diarrhea like those around us. This episode set everyone back in their ability to ramp up doses.
Lightomni has had the toughest time getting back on his feet. For three weeks now he has been unable to read, much less do homework. We have used quercetin, lowered doses, extra sleep, extra benicar and he is gradually easing back to his old level of tolerable herx cycles. But it will be too late to salvage credits for this semester. I had him email his teachers, since self-advocacy is vital for someone who is ill. It was like pulling teeth, but he did it. He loves science, math and social sciences and someday will likely be an engineer. But his path will be long and unusual. We may have to get his diploma through Adult Basic Education instead of our high school, as his wellness trajectory seems to be overshooting the 21st birthday. I'M the one struggling with grief over that concept. Lightomni is too stressed by getting well to worry about a conventional schooling path.
It is becoming generally recognized in our family that Lightomni is the most affected by Th1. I am very glad that we are addressing this issue now, while he lives in our house and has not yet been "crashed" by a bad virus. (It was the Epstein Barr(mono) virus that put my daughter in bed for 2 years and led us to MP in the first place)
Phase 2 is progressing very slowly for Lightomni. I am needing to be extremely careful with dose increases, and each one brings a BIG bump in symptoms for a few days, at least. He ends up sleeping for 16+ hours, then things level off. We are going to be at this for a while.
So now for the good news:
In spite of the very difficult brain fog and physical symptoms, some good work is being done in social awareness and self knowledge areas. I have the opportunity to compare my son with his same-age friends with autism-spectrum disorders. One boy started with a very mild disability and was never officially recognized or assisted (We don't want to label him or make him think there is something wrong. He is doing well in school). BAD IDEA! There is a marked difference in his ability to engage in groups and friendships. He is painfully on the outside, looking in. He calls because mom says to. Says what she requires him to say. I really feel for this boy. SCHOOL SUCCESS IS NOT ENOUGH!!
Another boy was diagnosed at age 2 and has had no physical or comorbid problems. He has received extensive support and intervention. Lightomni and he have become good friends, which they maintain independently, even though the other boy is off to college. Lightomni has made that same progress in spite of significant comorbid and physical problems and a very late diagnosis (age 12).
In addition, Lightomni has developed, nurtured, and maintained a friendship with a typical boy 2 years younger than him. He did not have the skills to do so when first starting the MP. I was the mom telling him "why don't you call X?" "Make sure you invite X to this, too", and "You 2 could do something other than play games together, how about such and such". He is able to listen, talk about personal issues, and participate well enough in give-and-take conversations to be a friend!! This is big stuff.
I have noticed a greater sensitivity to family members and interest and involvement in family affairs and conversations. Two years ago I had to approach him and start a conversation; now he will throw out a non-rote conversation starter when we happen by each other. I'm lovin' it.
I almost don't want to bring this up, because it sounds a bit weird. Especially to people who don't thoroughly understand the core deficits in autism. But Lightomni has used the meditation techniques he had been taught (for self calming) to visualize and strengthen some core neural processes in his brain. He tells me every few months about what he is doing, and it sounds to me like he is developing his own explanation, or story, about the changes going on in his brain. He talks extensively about the "first", and how he used to think that was his central self, but only now realizes that is the damaged area of him self-consciousness, walled off for protection. He has functions described for the "second" through "fifth", which he had thought of as separate parts of his conscious self. Each of these entities, as described by him, sound like skills (brain functions) that are difficult for autistic people to utilize and integrate.
For instance, "Second" is the weighing of, and promotion of, self interest. Omni felt this part of himself developing and thought of it as the bad guy. More recently he has come to understand and report that the "second" isn't bad, just pragmatic and practical. And along with this understanding and the story he tells himself about who "second" is, I have noticed that he is not so haplessly ingenuous in his dealings with people. He is better able to understand that motivations may be different than appearance AND be comfortable with that fact. I even let him deal with a sales person on the phone (do you think Omni needs a concierge service for his $50 checking account?). He was able to handle the conversation afterward about how this person isn't bad, but they get a commission by signing you up, whether it is in your best interest or not. A light went off when we further explained that he did not have to accept the burden of "just cancelling before the end of three weeks". He was not bad or impolite or selfish to say no. It was OK to be rude and say "I'm hanging up now" after he had listened and said no. It was OK not to supply his birth City and State just because someone already had his other info.
I strongly believe that Omni has recognized components of emerging brain function; that this brain functioning is emerging independently of his conscious effort to produce them; which is why he felt the need to examine and explain the phenomenon; and his visualization and meditation techniques somehow help the healing process along. (Thinking about what these parts of the brain are supposed to be doing, and visualizing how they should work together as parts of a whole seemed to ease a lot of confusion and solidify actual skills used in daily life)
That's a lot of stuff, I know.
UDXmom
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Aspergers PDD-NOS ODD anxiety hypothyroid adrenal insuf obesity CFS 125D40 Ph1Jun07 ModPh2Aug07 Ph2May08 Armour thyroid gaba prn 5HTP & R-Alpha lipoic acid for intol sxs 25D8 (Oct07) NoIRs low lux home limited outings covered
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