The Marshall Protocol Study Site > PROGRESS REPORTS [members in study cohort] > Phase One Alumni Forum > Lightomni progress
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The Marshall Protocol Study Site > PROGRESS REPORTS [members in study cohort] > Phase One Alumni Forum > Lightomni progress |
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lightomni Member in Phase 2 
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Lightomni's tests Start Benicar 6/9/07. Started mino 25mg q48 6/23/07. Avoiding light/wearing NoIR's; avoiding D in foods; off supplements. 15mg Armour thyroid daily. Autism 17 yr old Wearing 98%NoIR lenses set in WileyX foamcup removable lense sunglasses (10% and 40% lenses on hand); Avoiding D in foods 4 weeks now & began to have real symptoms at 3 weeks. Pre-MP had also begun to have photosensitivity and flu-like symptoms with D avoidance (5th week). We had to feed Omni eggs the last 3 weeks of school so he could get through the year!! Until this week was one big mush of symptoms, steadily increasing as D levels came down. This week there is a first day increase in severity. Typical symptoms include photosensitivity, muscle and joint aches, malaise, numb extremities, nausea, flushing (red, hot skin) for a couple hours sometime soon after taking mino. Most consistant and prominent symptoms are photosensitivity and dizziness with a big dose of inner ear misinformation (e.g. feels like he is about to fall over to the left) I've noticed a shorter fuse, which he is handling by resting/avoiding stimulation. Frequently find him lying down in the (dark) guest room. Avoids coming into ligher area of house or outside -without need for reminding (makes him immediately uncomfortable). Physical exertion has become much more difficult for him, though he did manage to mow the lawn last night just after the sun set. Spent a few hours recovering from that. Lightomni joins RDMN and Mysticalfaerieflute on the MP (We may have to hire the lawn done for the next year since we are all going to be gimps  )My biggest concern just now is extracting specific information from Lightomni and to teach him to be aware of and report small symptoms before they grow out of control. The ODD/explosive piece is going to get in the way a bit here, but we have lots of practice and will get through it. This is UDXmom. |
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jrfoutin Research Team 
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Mom, You have a household of immunopathology to keep track of. It may be difficult for you or your family members to sort their responses with all the Herx flying about. I hope you can consider charting so you can see start to see some of the big picture patterns for each as well as the day by day immunopathology management and nurse moderator insights from daily posting. Downloadable MP Documents, Phase 1 I'm glad you are posting frequently for each individual. Kudos for your courage and effort on their behalf. You are amazing.--Janet |
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lightomni Member in Phase 2
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Forgot to mention one thing. Lightomni has had a surgery recently (3 years ago) to reimplant a stage 4 refluxed ureter. We were unable to restore function to the left kidney and it is still there and is a remote infection risk, apparently. The past 3-4 months Omni has had occasional pain/pressure in the right kidney area and we will be getting an ultrasound and seeing the urologist in a couple weeks. MP Doc believes that MP will provide a measure of protection due to antibiotic and that strain on good kidney should not be excessive. Urologist's nurse indicated that Omni's right kidney MAY be subjected to reflux from the right ureter as that sometimes occurs; and the size of the kidney will indicate whether or not we should be concerned. She said even if there is reflux, at his age a wait-and-see approach may be recommended, provided there is no evidence of kidney malfunction or small size. Past ultrasounds indicate that Omni did have, at time of surgery, a smaller-than-expected bladder and right kidney. I think there are 2 possibilities: structural developmental damage will force us to stop MP and repair or replace right kidney before we can proceed(God forbid); OR pathological damage has/is being done and MP should be continued, albeit carefully so as not to overwhelm present kidney function until normal development/function can be restored. I am going to have to bring the urologist up to speed on MP. Wish me luck. UDXmom |
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lightomni Member in Phase 2
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Yup, thanks, Janet. We have been charting. I appreciate your support, too!! |
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lightomni Member in Phase 2
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40mg Benicar q6hr round the clock; 50mg mino q48hr began 7/10/07; NoIR lenses in WileyX frames; avoiding D and outdoors; some computer use without glasses, still .This is UDXmom. We decided to begin the 50mg because Omni generally seemed to be stable at a not-too-uncomfortable point. Symptoms were general malaise/pain/nausea and dizziness without the spikes of numb extremities or bad headache, etc. Omni tried a q72hr 25mg mino just before starting the 50mg and became uncomfortably ill on the 3rd day. Does this signify that we need to flush out more at the 25mg 3 day level and have moved too fast to 50mg; or that we should avoid 3 day dosing? My instinct is to wait until the end of a dosing period and do a couple 3 day cycles, BUT: He also does not have as much of a up-down cycle as I expected. This could be because of the amount of time he's spending in front of a computer or TV; but in the fall we will merely exchange that IR exposure for what sunlight/florescent lighting is present in a high school. Is it worth it the battle to remove the "screens" for 2-4 days to determine how much is IR and how much is light-exposure related? It may be important, also, to "highlight" for Omni the consequences of light exposure. OR: If the 50mg mino doesn't draw out a more pronounced cycle, should we consider a frequent dosing trial? My concern is not so much for this summer, but to have skills for later when he is in school and attempting phase 2. I have scheduled a 25-D test for late July also; which should shed some light on this situation. After writing this I have decided to insist on a 3-4 day light/monitor-free trial first. I am finding that the D-free diet I am eating with my family is causing some muddled thinking, but this "conversation" has helped. Thanks! |
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Aussie Barb Research Team 
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Thank you Mom As you have reported the D free therapeutic probe on yourself is telling. About avoiding sun exposure and /or Vitamin D.. Some of my family members appear to have Th1 inflammatory symptoms. What should they do? Not all immunopathology is a definite wax and wane.. and it may change at any time. Suggest that if Omni's symptoms are tolerable - that the monitor separation may be unnecessary and perhaps isolating for him. There will be opportunities to gain experience re light exposure.. there almost always is for most.. Natural light > protect skin and eyes.. Artificial light > protect eyes / not skin.. The first recommendation to minimise symptoms. If your Dr agrees: to minimise symptoms at any time, or if going out - as well as protecting from light, you can take an extra half tablet (20mg) Benicar any time during the cycle, or adjust the dosage to 40mg Q4H. see also in BenicarQuiklink many Members report chewing or sublingual gives faster absorption/relief.. Some find: extending to 3 day dosing achieves more tolerable symptoms. or some find 3 day dosing may increase immune response. Dont let symptoms go to intolerable, take your dose at a shorter time if necessary to hold your symptoms at tolerable. Frequent dosing is used by some when required to dampen immunopathology. Why and when do you recommend taking Minocycline frequently? Suggest that unless symptoms are intolerable the mino QOD is the way to go, and increasing after at least a week at each dose level when symptoms are tolerable enough to accomodate more. and as you have found, posting is helpful.. to yourself and to others reading. thank you. all best, Barb ... |
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RDMN Member in Phase 2
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Thanks much, Barb. I shall calm down and not read so much into Omni's symptom differences from other family members. He is tolerating the 50mg well, with reports only of increased swelling and stiffness in joints. UDXmom |
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Aussie Barb Research Team
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Thank you Mom, The Benicar Q4H may be helpful. all best, Barb ... |
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lightomni Member in Phase 2
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Benicar 40mg q6h; 50mg Minocycline q48h Omni's ultrasound came out clean. He has an undersized bladder and needs to void more often, but kidney is fine and they think he just had an infection that didn't show up in urine for some reason. I wouldn't be suprised to see some flank pain on & off with the MP. Waited to get through ultrasound before upping to 75mg Mino, which will happen tonight (he takes mino at 6 pm). We did do a 3 day at 50mg, with some increase in IP, but not as much as the 3 day on 25mg. Came home early from a friend's Gaming party this wkend with a headache, but overall is coasting just now. Omni reports overall fatigue is lessened, and that he does experience good days which he really appreciates, and bad days that aren't any worse "than what I'm used to anyway". Had to pull teeth to get that report, more detailed info probably won't be forthcoming. UDXmom |
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lightomni Member in Phase 2
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Benicar q6h; began 75mg Mino 7/24/07 Omni is doing pretty well on 75mg. It has been 24 hours and we haven't seen a noticeable bump in symptoms at this point. UDXmom |
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Aussie Barb Research Team
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Thank you Mom.. all best, Barb ... |
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Dr Trevor Marshall Research Team 
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lightomni Member in Phase 2
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7/26/07 Benicar 40mg q6h; 75mg Minocycline 7/27/07 Benicar 40mg q6h; 24hrs into 2nd cycle experience malaise, irritability 7/28/07 Benicar 40mg q6h;75mg mino 6pm. Flushing, lethargy 7/29/07 Benicar 40mg q6h. Back to tired but OK. Moderate photosensitivity. By malaise and lethargy I mean lays down prone on the floor in the kitchen when his friend is over  . Omni is a witty and creative enough friend that his odd behaviors are overlooked by his buds. Thank goodness.By flushing I mean feels hot and removes shirt. Skin is cool and clammy. UDXmom |
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Aussie Barb Research Team
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Mom Occasionally a member will have difficulty with increasing Minocycline to the higher doses tolerably in Phase One. In case this may be the situation with Omni, suggest sending an email for the Questionnaire to fill and return so that you have plenty of time to read and discuss the Information re which meds and doses with Staff in phase 2/3 forum before going to your Dr - so that you have your next medication ready to start as soon as you need to, with no delays. Thank you, all best, Barb ... |
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lightomni Member in Phase 2
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Benicar 40mg q6h; mino 75mg q48h; good light avoidance except for computer use w/out glasses on occassion. Thanks, Barb. The symptoms at this dose have subsided substantially. I decided not to take omni in with his dad to get the D level pulled this past Monday, both for his dad's sake and because they want to see him soon, anyway. Made an appointment for 3 weeks from now. I will get the questionnaire returned next week so we will be fully prepared by the time he sees Doc. We just won't have a recent D level yet. I am not hearing complaints. His mood is stable, he is sleeping well, and has the energy to be with friends. But he says he feels weird and cannot elaborate. I am currently shooting for a 3-day on 75mg early next week; then bump up to 100mg. It looks like omni will need to move to Ph2 approximately the same time as school starting. Should we push or hold back or find a maintenance level for a couple weeks? Or should I wait and ask these questions on the PH2 forum? UDXmom |
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Aussie Barb Research Team
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Mom For some, the mino can reach a maximum tolerability level, where they need to decrease and add a 2nd abx as Modified Phase One. 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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lightomni Member in Phase 2
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Thanks, Barb. I will get the questionnaire filled out ASAP, then. Omni came to me a moment ago to explain he was brain fogged and found himself saying silly things and being goofy. I told him that sounds like sleepiness; how long had he slept? 10 hours. Omni has had a droopy inattentive goofiness with side helpings of fatigue and brain fog for a long long time, but the mino seems to be exacerbating this. I remember picking him up after junior high and he would be lying spread eagle on the sidewalk almost every day because he was "too tired" to hold it together anymore. I DON'T WANT TO GO BACK THERE! If a modified Ph1 can help him I am all for it. He does suffer idiopathic adrenal insufficiency. We used to use supplements to prop him up, but without that and in greater physiological stress perhaps he simply needs to move much slower on the MP. I think I might also drop in on him tonight to see if he is suffering a bout of sleep apnea like has happened to his father. Omni says I would not be welcome but he will just have to wake up to tell me to go away, won't he? He could take an extra benicar evenings before bed, too, if this is the case.UDXmom |
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Aussie Barb Research Team
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Mom, please clarify what "move much slower on the MP" means. Thanks, Barb .... |
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lightomni Member in Phase 2
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Barb: I think of modified phase 1 as an extended and milder path to the same destination. Same with mod phase 2. Is this a misperception? I am also thinking that given a choice between "increase now" and wait another 2 days or 4 days to be sure symptoms are stabilizing at this abx dose...I should choose waiting. Partly I am afraid of burning out that adrenal gland and having a son who cannot finish his senior year and partly I am worried that his stoicism and inablity to express his symptoms will lead me to make a mistake. It is (has been) difficult to get through each school year and we have already unloaded his plate as much as we can. I need to interpret "tolerable" for him on the wimp side of the equation. Probably you can tell this, but working with Omni stresses me out moreso than with RDMN or Mysti, because he doesn't really have the capacity to partner with me in this. Yet. Appreciating your assistance! UDXmom Last edited on Fri Aug 3rd, 2007 00:18 by lightomni |
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Aussie Barb Research Team
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Thank you Mom The aim is to use the antibiotic/s combination and doses to be killing the Cell Wall Deficient (CWD) bacteria at a tolerable and sustainable level of immune response. Tolerable is the key at all times, and sometimes that will mean increasing and sometimes it will mean waiting.. You are managing well. Reporting as you have been also gives an opportunity for Staff to assess with an objective view, as is happening here.. all best, Barb... |
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lightomni Member in Phase 2
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As always, thank you for your wonderful insight and support UDXmom |
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lightomni Member in Phase 2
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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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Aussie Barb Research Team
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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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lightomni Member in Phase 2
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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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lightomni Member in Phase 2
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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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Aussie Barb Research Team
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Thank you Mom, take care, and enjoy, Barb ... |
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lightomni Member in Phase 2
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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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Aussie Barb Research Team
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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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lightomni Member in Phase 2
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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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Aussie Barb Research Team
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Thank you Mom... |
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lightomni Member in Phase 2
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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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lightomni Member in Phase 2
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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:
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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lightomni Member in Phase 2
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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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lightomni Member in Phase 2
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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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