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healingjason
Member in Phase 3
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Posted: Mon May 7th, 2007 22:41 |
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berj4
I think Jason is sleeping better due to the Benicar claming him.
He has been on minocycline for a little over one week so far too early to observe other positive signs I think.
URLs for the NIMH Minocycline study can be found by Googling minocycline and autism.
The NIMH trial is based on doses of mino used to successfully treat Huntingtons's Disease in adults. The NIMH disease model is very different to the MP. It seems to be that the autistic brain is inflamed and minocycline is a good anti-inflammatory and it is being used for this property not its bacterial killing property for which it was developed. The MP posits that the inflammation in the autistic brain is the direct result of excessive numbers of bacteria which can be killed by enabling the immune system (with Benicar and vitamin D restrictions) together with certain specific antibiotics (including minocycline) which have this capacity as well.
The MP has not been tried with ASD children until now with Jason but it has cured 2 children who had ADHD, albeit where their ADHD was a secondary condition to other illnesses that the MP was targeting (Lyme and sarcoidosis/uveitis). I don’t know if the brain healing occurred after the other primary issues were overcome or if brain healing was concurrent with other healing.
For my Jason I think it is only (!!) his brain that has to be healed. However, how the MP works or does not work for him remains to be seen. Perhaps the moderators with knowledge of the 2 children mentioned can comment on how long a mainly brain-based infection might be overcome.
A key difference between the NIMNH trial and the MP is that the NIMH people do not seem to have a strong view in advance that the mino therapy will necessarily help - it is very much a trial and parents have been given no great hopes that the protocol will work. With the MP, the view is that as the bacterial load is successfully reduced healing must come. Hence, if there can be certainty that the pathogenic bacteria are present then full and complete healing should come, albeit over a long period, as much as 1-3 years for most suffering from Th1 illnesses.
John
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Father of Jason, 11 year old autistic boy. Chronic infection evident from urinary amino acids (see bioscreenmedical.com). Benicar 40 mg QW8H from 7 Apr 07. Phase 3 from 28 June 08. Covered up, sunscreen.
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Dr Trevor Marshall
Research Team
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Posted: Mon May 7th, 2007 23:03 |
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John,
I beg to differ. The NIMH don't have a model, in any normal sense of the word. They don't have a clue what they are doing. As you say, they are just trying this drug or that drug with this or that supposed healing property.
On the other hand we have a molecular-biology-based model for chronic inflammatory disease which is well developed and well tested. The only variable is whether ASD is a chronic inflammatory disease described by the model. When a patient responds according to the model's predictions then we can be pretty certain that the progress of that patient will be along the same trajectory as others who have gone before.
So as long as Jason follows the expected symptomatic and healing trajectory then we can have confidence in the outcome. There is no black-magic, no experimental drugs, just a model based on how the body actually works
This is a paradigm shift in medicine, but it is not our vision alone. The Commissioner of the FDA himself recently stated to congress:
This new science combines an understanding of disease and its origins at the molecular level (including adverse events resulting from treatment) with new methods of signal detection, data mining, and analysis. This enables researchers to generate hypotheses about, and confirm the existence and cause of safety problems, as well as explore the unique genetic and biologic features of individuals that will determine how he or she responds to treatment. This science of safety encompasses the entire life cycle of a product, from pre-market animal and human safety testing to widespread clinical use beyond original indications.
http://www.fda.gov/ola/2007/overview050107.html
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berj4
Member
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Posted: Tue May 8th, 2007 15:29 |
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Thank you for the information and quick response!
I wish the best for you and your son, and I will definately keep checking this message board to read on updates you provide. This sounds very exciting, and I hope your son responds well to the treatment and gets better.
berj4
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healingjason
Member in Phase 3
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Posted: Tue May 29th, 2007 22:54 |
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Jason has been phase 1 now for 7-8 weeks now, including 3 weeks of Benicar only. He is now up to 75mg of mino and I intend to raise this to 100 mg in 2 days time.
Unfortunately, there have been no cognitive improvements that I could attribute to the MP. This is not to rule in or out the roloe of the MP in bringin about some improvements he has shown in socialising and playing. The most significant improvement has been with sleep, although this is by no means perefect. He continues to wake at night, though not every night, but I sense that he settles more quickly and is more relaxed than in the past.
As to herxing, it is hard to know whether he is or he isn't. He has continued to have nasal congestion which I have posted on. I am mindful of Meg's comment as follows:
Symptoms similar to upper respiratory infections (sinus infection, cold, flu, ear infection or bronchitis) are often due to Th1 inflammation and the immonopathology which occurs during treatment with the Marshall Protocol.
Dr Marshall wrote: "The MP will make no difference to the course of a cold. If anything, it will allow the immune system a better chance to fight the virus. On the other hand, flu-like
symptoms are a very common manifestation of Herx reaction. They come and go more quickly than a viral cold does. The MP will make no difference to the course of a cold. If anything, it will allow your immune system a better chance to fight the virus."
Jason has had a bad cough but this could have been a cold which I had also. However, Jason overcame his cough a lot quicker than I did with my cough. His nasal symptoms have also come and gone somewhat in the way Trevor describes.
I have also noted the comments of Greg Blaney, MD:
Finally, if the major complaint is neurological, improvement is often seen only after a number of months on phase 3.
If this comment is apposite then we are looking at a very long process before cognitive improvements become obvious.
I very much appreciate the keen interest of many in my boy's progress.
John
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Father of Jason, 11 year old autistic boy. Chronic infection evident from urinary amino acids (see bioscreenmedical.com). Benicar 40 mg QW8H from 7 Apr 07. Phase 3 from 28 June 08. Covered up, sunscreen.
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healingjason
Member in Phase 3
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Posted: Fri Oct 12th, 2007 01:15 |
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Sep 4th, 2007
I should post my assessment of how Jason is doing on the MP thusfar. We started the Benicar in early April so we have been going 5 months now and have reached a modified phase 2 protocol.
I can see no negatives.
I can positives with respect to sleep, mood and behaviour.
Jason has always had terrible sleep disturbance and he is still waking up crying most nights but not every night. The difference I feel now is that he settles back to sleep much more readily and sleeps through to the morning when before he could easily wake again. Also, to settle him after waking, we would often need to sit with him and watch Wiggles tapes to settle him down. I can recall only one occasion this has been necessary since we started the MP in contrast to many nights previously when this has been necessary.
We had a major problem with Jason compulsively and repetitively wanting to play with and ceaselessly handle dirt, gravel, bark chips etc in preference to any other play. They call this 'stimming' or Jason being 'sensory' . The latter term is a reference to his 'sensory integration dysfunction' which means he needs to have his senses 'fed' or aroused in a more primitive baby-type way compared to normal children. The teachers (to their very great credit) have been trying to channel his hunger for sensory input (as they call it) into more socially appropriate activities, such as playing on and with playground equipment.
The teachers report that Jason is having a great time climbing and jumping on playground equipment and that he has been really good with respect to the 'stimming' etc and only on the odd occasion does he have to be reminded not to play with the bark etc. In the teacher's own words, "Things are looking good. Progress is being made. When I have seen Jason recently he has been very settled and very happy. Hope it is the same at your end."
I am not getting too carried away. The teachers (quite reasonably) will attribute any improvements to their increased efforts to more closely monitor Jason's sensory behaviour as they don't know about the MP. This means their comments will be consistent with a true blind study.
Of course, I am quietly hoping the MP cure is creeping up on us in the way the cure for other illnesses is described on the Board. However, I am not getting ahead of myself and Jason has a very long way to go as he has yet to develop speech. The improvements we are seeing could be attributed to other factors eg maturity, education etc. Were he to develop speech after age 10 years would put the MP's creditability beyond doubt.
John
Oct 12th, 2007:
I have a few further musings on whether Jason is making progress on the MP and on the theme that a cure for Th1 disease is almost imperceptible and creeps up on sufferers.
I have reported on the study site the chronic nasal congestion that has plagued Jason’s sleep over many years. I have had to use eucalyptus gel to assist his breathing and allow him to rest and sleep. I can’t recall when I last used this.
Jason also seems to be very happy, almost blissful these days and this has been reported on by teachers. We have bought him a scooter and it is a treat to see him glide around the house and take it with him to all the nooks and crannies of the house, especially the pantry!. He obviously derives great pleasure from scooting and the influence of this cannot be discounted – I’m sure occupational therapists would see it as a calming therapy tool to address sensory integration dysfunction.
Finally, as reported before, Jason has taken to relating to all manner of people who enter the house by taking their hand and getting them to sit very close to him – it is his way of saying hello. This is a far cry from the high point of his autism when he was aloof and totally disinterested in people.
Still a long way to go but these apparent developments do give me hope.
April 10th 2008:
Jason is doing just fine at present. Perhaps the relative lack of herxing is a godsend.
I am heartened by some emotional developments in the little guy. Of course, I don’t know if this is due to maturation or some other factor but Jason is much more alive to me and takes great pleasure in my company. For example, when I put him in the school bus in the past he would just ignore me and his wave goodbye was mechanical and learned. Now he looks back at me through the window with a big smile as the bus departs.
John
healingjason: Autism: positive development re play/ interacting.
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Father of Jason, 11 year old autistic boy. Chronic infection evident from urinary amino acids (see bioscreenmedical.com). Benicar 40 mg QW8H from 7 Apr 07. Phase 3 from 28 June 08. Covered up, sunscreen.
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healingjason
Member in Phase 3
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Posted: Wed Apr 23rd, 2008 03:25 |
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While one swallow does not make a summer, I should report a very positive development that we hope is not just a one-off.
For the first time, we were able to see Jason play football with his older (13 year old) brother. They kicked a soccer ball to each other and exchanged catches of the ball for a good period of time. Jason was taking great pleasure in this, as was his brother, and this is an absolute first. We have been able to train him to exchange catches but he has only done this fleetingly and in a very wooden fashion, that is, without getting any intrinsic pleasure from the activity.
As I have reported, what we are seeing is a very happy little boy – very cheeky, impish and more certain of himself. No great cognitive improvements yet but very much improved in terms of sociability and emotional maturity. His eyes seem to be now opening to the joys of relating to people.
We have just started phase 2 and Jason has been on the MP for 12 months.
There has been no obvious herxing to observe so it does not seem like he is killing bacteria in the usual way but we are very happy with his emotional state and social interactions. I gather that many adult MPers come out of a gloom and depression while they are recovering. I don’t know if this occurs alongside herxing or whether this follows herxing. Can anybody advise or comment on this?
What I am getting at is that Jason could be an atypical case – he could be slowly improving (given his growing positive state of mind) – but this seems to be occurring without the discomfort which seems to signify a herxing/killing bacteria reaction in most MPers. Do MPers recover without these more obvious signs of herxing? Can killing be going on under the radar so to speak?
Without obvious cognitive improvement, notably, the development of speech, we are still speculating as to whether Jason is improving on the MP but it is nice to be able to enjoy him so much more these days regardless of whether he makes further gains or not.
In the interests of further chronicling Jason’s progress, this is what Jason’s teacher wrote on 22 April. The teacher is blind to any therapy we are giving Jason.
“Jason is really happy and settled at school. He is really participating in activities such as construction and cooking where he peels, grates and finds materials and foodstuffs. He doesn’t really eat the end result (vegetable patties) but is happy to work in the group.”
I have also noticed a greater interest by Jason in mimicking activities at home – shovelling sand into the wheelbarrow, using the watering can to water plants etc when he has showed little interest in the past in imitating other people’s actions and activities. These are classic imitation activities that ordinary toddlers engage in (prior to speech), revealing an interest in the social world in particular, that autistics don’t. Indeed, behaviour therapy given to ASD children is designed to teach imitation as it is not an inner motivation in these children.
I hope I am not getting too carried away or reading too much into these small steps forward.
John
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Father of Jason, 11 year old autistic boy. Chronic infection evident from urinary amino acids (see bioscreenmedical.com). Benicar 40 mg QW8H from 7 Apr 07. Phase 3 from 28 June 08. Covered up, sunscreen.
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healingjason
Member in Phase 3
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Posted: Fri May 9th, 2008 01:16 |
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More small steps forward
Jason’s teacher reported as follows:
Jason has had a good day. This week I have noticed that Jason is staying at activities longer than at the start of the year. “WELL DONE JASON” (teacher’s emphasis). I hope he keep this up.
Jason was also rewarded with a sticker on his windcheater stating “fantastic”.
I can say that Jason’s daily reports from the teachers have been very very positive, especially with respect to his mood and behaviour. I have mentioned that the teachers are blind to the fact that Jason is on the MP.
Jason is very much loved at home and at school these days because he is so happy and amenable to direction. Many of his peers are very difficult to manage at school I gather, although most are higher functioning in terms of receptive and expressive language. For some reason Jason cannot speak nor understand more than fairly basic language but his understanding is improving. His playing with his brother is also growing and he likes nothing more than rough ‘n tumble play.
May 12th, 2008
Jason continues to do well. Indeed, his school bus driver was moved to say to me this morning, totally unsolicited, that
‘he has come a long way this year.’
Of course, Jason has a very long way to go (more than most ASD children I would think) but I think he is improving a lot, on his terms, and others seem to be seeing this as well.
Wow – could it really be true that Jason is getting better, slowly but inexorably?
May 14th, 2008
For the record, this is a further report of comments from Jason’s teachers
"Jason has had another great day today. He really enjoyed the morning session walk and fine motor session. He is really enjoying the activities within the classroom and loves getting involved.[my emphasis]."
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Father of Jason, 11 year old autistic boy. Chronic infection evident from urinary amino acids (see bioscreenmedical.com). Benicar 40 mg QW8H from 7 Apr 07. Phase 3 from 28 June 08. Covered up, sunscreen.
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healingjason
Member in Phase 3
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Posted: Mon May 19th, 2008 00:47 |
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More good reports from Jason’s teachers – see below
14 May 2008
“Jason was quite settled and happy today. During fine motor, he sat at each work station and did the work. He is more and more able to stay seated and complete the work”.
15 May 2008
“Ditto for Jason today. He seems to be fixated with me [his male teacher] at the moment, always hanging around me, touching me, and smiling – ah well. He seems very happy in general.”
16 May 2008
“Another good day for Jason. He’s participating well and has a smile for everyone. His ‘noise levels’ are up – he’s doing a lot more verbalising. He’s very settled.”
From the bus driver again
“He’s always happy.”
From my mother who sees Jason once or twice a year.
My mother was moved to remark to my wife that “maybe he will surprise us all”.
John
June 4th 2008:
Light: exposure from 8 am to 4.30 pm most days
Symptoms: sleeping very soundly when this has been very rare in the past; has experienced no nasal congestion notwithstanding we are in winter down under and that this has been a longstanding chronic issue over many years; no great cognitive gains yet but very settled and happy at home and at school
Report since last report on 4 June 2008:
Last cycle on phase 2.
Symptoms: sleeping very soundly when this has been very rare in the past; still no great cognitive gains yet but very settled and happy at home and at school.
It is worth recording more positive reports from Jason’s school teachers
Jason has been a delight today. He is responding quite well to instructions plus, generally, I have noticed [him] making a connection with others - me in particular. [June 24]
Jason has been fine, participating well, and generally very happy. [19 June]
A bit of good news I have not passed on is that I can get Jason to routinely swallow minocycline (Minomycin) tablets. These are very small hard tablets which I put in his mouth and follow with a drink. He seems to have sussed to swallowing them and will readily swallow 2 tablets at a time.
Basically, I persisted and put the tablet in the back of his throat and gave him the drink straight after.
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Father of Jason, 11 year old autistic boy. Chronic infection evident from urinary amino acids (see bioscreenmedical.com). Benicar 40 mg QW8H from 7 Apr 07. Phase 3 from 28 June 08. Covered up, sunscreen.
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healingjason
Member in Phase 3
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Posted: Wed Jul 9th, 2008 02:29 |
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So far so good.
Jason is very relaxed.
Indeed, we are going to celebrate my wife’s birthday by all of us staying in a hotel in the country together. This will include dining in the restaurant, albeit a casual one. We could not contemplate such a thing in the past as Jason would not wait patiently for his food and would tantrum. He will now wait happily eating out and he looks forward to the food coming without any dramas. We are approaching a sort of normality and can venture out as a family more often.
Jason’s mid year report included the following commentary that any parent of any child would welcome. For us, it is especially wonderful.
It is an absolute pleasure to work with Jason. In the early stages of term 1, he seemed quite wary and apprehensive within the classroom. However, he appears to be very happy and settled. He has a cheerful outlook, and staff very much enjoy his company, as do his peers.
While Jason’s cognitive skills are still very limited - no speech and very limited understanding - he has clearly stolen some hearts! Why he is so much more relaxed and settled and engaging is the tantalizing question. Could it be the MP?
Cheers
John
July 22nd:
Perhaps I have been a little too cavalier in not appreciating the big improvement in Jason’s sleeping.
This was the bane of our lives for many years and was very disheartening, not to say exhausting on all of us.
Jason may not always sleep through the night but when he wakes he goes back very quickly and sleeps very deeply these days. We do not need to stay up with him to settle him any more.
There is no way this sleep improvement can be attributed to an educational therapy. Some psychologists promote various methods as they perceive sleep waking as attention seeking or something that can be addressed by behaviour therapy.
Perhaps the improvement can be attributed to maturity or the colder weather but I like to think otherwise.
The sleep improvement parallels the improvement in Jason’s mood and temperament. He is so relaxed and happy that I wonder if he has decided to stop right where is now!
Of course, my great wish and hope is that he will make significant cognitive improvements which are a long time coming.
John
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Father of Jason, 11 year old autistic boy. Chronic infection evident from urinary amino acids (see bioscreenmedical.com). Benicar 40 mg QW8H from 7 Apr 07. Phase 3 from 28 June 08. Covered up, sunscreen.
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healingjason
Member in Phase 3
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Posted: Mon Aug 4th, 2008 02:58 |
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Possible cognitive progress? Some thoughts
As I have posted, Jason is doing well but, cognitively, he is still a long way from home. As we are nearly half way through phase 3, I expect he will need to be at the top of phase 3 for a good 6 months (at least) or more. Time will tell.
Some faint suggestions he is improving cognitively.
Jason is using his voice to express happiness and anxiety and "yes" and "no". We know his affirmative sounds (his "yes") and negative sounds (his "no"), often paired with hand actions (eg waving us away).
He is also starting to point to objects he seeks, paired with sounds, though not the normal pointing (using index finger only) that a normally developing infant uses. Still, the "pointing" is done with great eye contact and with verbal urgings. I put sought after foods on a shelf at a height he cannot reach and for which he must request in some way (an old language facilitator trick used to kick start language in healthy kids).
Very primitive communication of course for an 11 year old but we all must crawl at some time before we can walk.
Still too early to get excited I think.
John
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Father of Jason, 11 year old autistic boy. Chronic infection evident from urinary amino acids (see bioscreenmedical.com). Benicar 40 mg QW8H from 7 Apr 07. Phase 3 from 28 June 08. Covered up, sunscreen.
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healingjason
Member in Phase 3
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Posted: Fri Aug 22nd, 2008 15:27 |
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(filelink)
Belinda wrote:
Just thowing out a few ideas here:
- Not seeing a great deal of immunopathology is a blessing in a way, because Jason isn't obviously suffering or anxious as a result of it.
- Jason may have developed a higher-than-normal threshhold for pain, which may be working to his advantage now.
- His age and limited ability to communicate may simply not allow you to identify the range of his immunopathology. I noticed you've mentioned observing possible reactions in the past, like a runny nose.
- All things considered, aren't improvements more important than immunopathology?
All the best,
Belinda .......<<<
In the spirit of keeping the discussion focused on the IP issue, I think there may be merit in the point in Belinda's post about pain sensitivity that may be especially relevant to Jason's case. You and the Board may wish to take my comments on this below into account before responding.
Jason used to have a high pain threshold as a toddler, that is, he would not readily feel pain. He would fall and not cry. This is relatively common in autistics.
I believe he still shows this in the hypo-sensitivity he exhibits.
Jason is believed to have what is called 'sensory integration dysfunction' in that he seeks/craves more sensory input than most because his senses are under responsive. The idea is that he is unduly sensory 'hungry' because his senses are desensitised somewhat.
He shows abnormal sensory behaviours by, for example, his liking of raw onion, garlic and chilli (very un-childlike) and his inordinate love of 'feeling' things - sifting and handling sand, gravel, bark chips, shaving cream - you name it. He is the opposite of many autistics who are hyper-sensitive (hate being touched, hate dirt, hate soap etc) - he is the exact opposite.
He used to try to eat dirt and other non-food objects - a disorder called pica - which I think was explained as an abnormal liking for stimulating receptors in the mouth.
At his kindergarten, the staff used to try and overcome the hypersensitivity of the children by exposing them to shaving cream and other sensory sensations - Jason behaved very differently from most of the ASD children and just loved these activities!
I think this hypo-sensitivity could mean that were he to have normal sensory reactions then he would show more discomfort - feel more pain - from bacteri killing than he does. In other words, he could be actually killing bugs but his senses do not sense this (by way of feelings of pain or nay other reaction).
I guess this is a bit speculative but there seems to be a logic too.
I do very much appreciate the Board taking my concerns very seriously and I look forward to their advice.
John
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Father of Jason, 11 year old autistic boy. Chronic infection evident from urinary amino acids (see bioscreenmedical.com). Benicar 40 mg QW8H from 7 Apr 07. Phase 3 from 28 June 08. Covered up, sunscreen.
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healingjason
Member in Phase 3
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Posted: Fri Sep 5th, 2008 03:25 |
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MP meds: Phase 3.
Non-MP meds: none
Light: exposure from 8 am to 5.30 pm most days but sunscreen used and mostly covered up
Symptoms: bit of a runny nose and nasal congestion which seems like IP as it is not enough to depress Jason or keep him away from school. No great cognitive gains yet but continues to be very settled and happy at home and at school.
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I may have been a bit downbeat about progress with Jason. Family members have commented that we are too close to Jason to see the changes in him, especially with respect to how more settled and more sociable he is.
I know many of you reading this post are very interested and rooting for Jason to get well and for me not to get disheartened at the slow rate of progress.
In recognition of this, I should report that we are entering spring here Down Under and we happened to go out as a family at dusk last night (no significant sun/light exposure!) to play some basketball and tennis.
We were very delighted with Jason’s interest in these activities which he has never shown before. He tried to hit the tennis ball with a racquet (a first) and was participating in throwing the basketball to each other. He even tried to shoot a hoop! While his effort was pretty pathetic, what was encouraging was that he knew what to do and to aim the ball upward toward the hoop.
In the past, he has had to be inordinately coaxed and cajoled and encouraged to participate in these sorts of activities. While we still did a lot of this, he was definitely more responsive.
It was a beautiful evening weather–wise and we stayed out until it was quite dark. I felt Jason really got into the spirit of being together as a family. He did run off from time to time but this seemed more in the nature of enjoying being outside than being anti-social/autistic.
All in all, very encouraging.
It seems like we are trying to turn around a giant ocean liner which has been heading in the wrong detection for a long time. I think we have to be more grateful that the liner is slowing and that there are hints that it will turn eventually.
Trevor is clearly convinced he has explained the cause of autism (or most instances of autism) and he has given the world the cure. We just have to be patient and do the best we can to apply the cure and hope that the departures from the ideal treatment protocol are not too profound.
To think that we can rid Jason of autism sounds too good to be true but that would be giving in to the cynical timid mind when we can otherwise choose to trust and hope.
John
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Father of Jason, 11 year old autistic boy. Chronic infection evident from urinary amino acids (see bioscreenmedical.com). Benicar 40 mg QW8H from 7 Apr 07. Phase 3 from 28 June 08. Covered up, sunscreen.
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Karon
Member in Phase 2
| Joined: | Thu Nov 15th, 2007 |
| Location: | USA |
| Posts: | 31 |
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Offline
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Posted: Fri Sep 5th, 2008 17:07 |
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Dear Jason's Daddy John,
You are amazing! I have been following you and Jason for months now. I have a beatiful son named Jake. He is 9 almost 10. He has been a little "odd" since being put on Digixon at birth for ASD/VSD. I took him off this drug at 3 mo.old after doing research on the internet about the drug as he was not responding normally to me. He was suppossed to be tested every week for toxic liver but never NOT ONE TIME was he. The Dr.s said they never heard of such a thing when I brought the info to them. He has since been "cleared" of this diagnosis at 5 yrs old. The Heart Spec. said "Are you sure he had VSD/ASD??? Its gone as if it was never there. I am GREATFUL!! He was force fed formula in the hospital (I am a breast feeder) So this was a huge crime aganist us. When I argued about the formula feeding The Dr. said to me "You want to be a good mom don't you? You don't want him to starve do you??) Jake was hours old!!! We were in the hospital for 6 days after an urgent C-Sec due to low heart rate. He was full term. I had two babies at home before Jake came along with NO PROBLEMS!. With Jake however I had health insurance....So the games began!!
I feel that on a scale on 1 to 10 Jake is a .5 to .75 autisic. I am planning to put him on the MP as soon as I get into a comfortable pace in PH 3. I am early in PH2. Jake functoins quite well and is very smart. I feel he is about 6 months behind the "norm" emotionally and socially. He has phases of fixations on things or behaviours. Trucks.and hand motions right now. Hates to sit and read or write more than the average boy his age. Loves working on the computer though and is quite good at it. I have no idea right now why I am compelled to tell you this???.....I think you may have a message or two for me. I am curious about the Beni and Mino dosage you find to be good for your son. Will he go through all phases and abx's?
Your son has come a long long way on this journey...In my opinion it all up from here!
You were meant to be his daddy...
Just another parent affected by the "BUGS"
and mistakes of the all knowing and self important DR.'s 
Karon (Jakes mommy) 
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PTSD RA CFS Chron Inflam Disease| Naproxen Tramadol| 125D73 25D20(May08)| 25D14.4(Jul08)| PH1-Apr08| Lowlux Home Work NoIRS NoSun covered up| Ph2-Aug08
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healingjason
Member in Phase 3
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Posted: Fri Sep 12th, 2008 06:43 |
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Hi Karon
What lovely comments you make.
Regardless of the outcome of this journey, it has been a very special privilege for me to be part of the MP community in its efforts to help my Jason. I can now sense a very great groundswell of support out there for us from the many fine and intelligent folk out there who believe the MP will do great things for Jason. This is essential nourishment when doubts creep in that Jason is not making enough progress.
I came across this while Googling on this matter and I think it is very apposite -
... today a new awakening in faith has made us realize we are not only called into healing for ourselves, but also in various degrees into healing each other.
Only someone facing or sharing a serious sickness, pain or tragedy knows how hard it is. They know how hard it is to cope with the fear and uncertainty. They know how terrifying it is when the doubt comes. They know how hard it is to throw a mountain into the sea. But remember what Jesus told us in Matthew 17:19-20 when he said "I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, `Move from here to there' and it will move. Nothing will be impossible for you." Faith as small as a mustard seed sounds a little like hope to me, and that's a good start.
I hope this expression of religious thought and belief does not break any posting rules. It is hard not to be religious when you are faced with the Herculean task of overcoming a chronic incurable disease in a tender innocent so I hope I can be forgiven for this.
John
PS Information on Benicar and Mino doses are on the various separate fora/threads that deal with Jason in phase 1, 2 and 3.
Best wishes
Last edited on Fri Sep 12th, 2008 06:49 by healingjason
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Father of Jason, 11 year old autistic boy. Chronic infection evident from urinary amino acids (see bioscreenmedical.com). Benicar 40 mg QW8H from 7 Apr 07. Phase 3 from 28 June 08. Covered up, sunscreen.
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Joyful
Board Staff
| Joined: | Sat Jun 9th, 2007 |
| Location: | West Coast, USA |
| Posts: | 584 |
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Posted: Fri Sep 12th, 2008 07:35 |
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Only someone facing or sharing a serious sickness, pain or tragedy knows how hard it is. They know how hard it is to cope with the fear and uncertainty. They know how terrifying it is when the doubt comes. They know how hard it is to throw a mountain into the sea.
Thank you for sharing this. It is so true.
People are often driven to find community by their painful experiences...
...and then they discover they needed community all along, but didn't know it!
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Lyme Babs? Bart? | 125D50 Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | cal/mag lysine hydroxyzine valium | rarely leave house NoIRs cover up low lux home | 25D15 Oct08
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healingjason
Member in Phase 3
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Posted: Wed Sep 17th, 2008 02:41 |
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No great cognitive gains yet but continues to be very settled and happy at home and at school. Sleeping very solidly.
I have remarked before on Jason sleeping a whole lot better for many months now.
He now wakes in a pleasant and refreshed state - indeed, he prefers to lie in like most normal kids do.
We are continuing to get favourable reports from school as to his behaviour and attention to the teachers. He is very patient, relaxed and easy to manage at home.
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Father of Jason, 11 year old autistic boy. Chronic infection evident from urinary amino acids (see bioscreenmedical.com). Benicar 40 mg QW8H from 7 Apr 07. Phase 3 from 28 June 08. Covered up, sunscreen.
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Sue from St. Louis
Member in Phase 2
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Posted: Wed Oct 1st, 2008 21:27 |
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John,
You might check with your insurance. My Doc wrote the Rx for Mino to be split into 25 mg and our insurance paid for the "compounded" capsules each 25 mg.
I am following the journeys of the autism kids. I was a teacher and principal and worked with these children (in self-contained special ed room with mainstreaming and a friend has a grandson who's been diagnosed with autism. I foward the autism posts to them. Good luck. If MP works this will me a monumental breakthrough.
Sue from St. Louis
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Sarcoidosis/CNS 1,25D48, D2511, MP 9/06, Mod Ph2 11/07 Synthroid, Diclofenec, Cymbalta, Wellbutrin, Lasix (as needed), amitriptyline, NOIRs, cover-up, low lux home
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healingjason
Member in Phase 3
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Posted: Wed Oct 15th, 2008 00:36 |
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The doctor’s visit went well.
He is happy to press on and noted how clam and settled Jason was. He was able to test his blood pressure which was normal. Jason sat patiently for 40 minutes or so with good eye contact.
A feature of his behaviour has been how relaxed and calm he is these days.
A typical comment which is worth posting is as follows from a teacher at his school –
Jason has had a very good day today! He has been quire relaxed today! Quite a delight!
Jason has clearly won a heart with this particular teacher who is a substitute relief teacher who only sees Jason from time to time.
I am always reviewing Jason’s progress of course and comparing this with the length of time he has been on the protocol which is now 18 months. I am under pressure to prove that the MP is working. Unfortunately, any improvements are seen as being due to maturation rather the MP. Being calmer and more relaxed could be attributed to either.
The other changes that are significant include the elimination of nasal congestion which was intractable and would emerge independently of a cold and at night only (as I have posted). I can’t see how this clinical physical symptom could have been caused by other than bacteria in the nasal passage and this just does not occur anymore. This is a major achievement in my view.
Jason’s sleep is better but it is not perfect. This does not worry me as the sleep difficulties could be an expression of herxing and Jason is always able to settle very quickly and he likes to lie in these days rather than get up cranky. All in all, his sleep is much more restful than it was. Could this be put down to maturation?
On the cognitive front, progress is very subtle at best. I appreciate that MPers have commented that cognitive progress will be slow to emerge. I do worry that this may never come and that Jason will only make progress in emotional terms and that his brain is just too damaged to expect a cognitive miracle. Does it stretch credulity too far to hope that a 11 year old will start to speak and otherwise develop cognitively at such a late age?
I note that brain damaged stroke victims are able to develop speech from a mute situation (though these folk have acquired the skill in the past) and this seems to suggest that the brain can heal itself. I note the recent book of Nornam Doidge, The Brain that Changes Itself, which seems to be encouraging. Wouldn’t it be perfect to have an updated chapter devoted to autism one day based on Jason’s experience!
see - http://www.abc.net.au/7.30/content/2008/s2360105.htm
Jason is starting to be more consistent in taking himself to the toilet to do a bowel motion. He had this skill as a younger pre-MP child for a brief period but lost it. We have worked very hard to try to fully toilet train him and it seems it is something that Jason just has to twig to in his own time (like everything that is learned I suppose).
The greater problem is that he cannot communicate a desire to go – he simply takes himself. Where the location of as toilet is unknown to him or he des not have the freedom to take himself (such as at school) he is at risk of soiling himself.
The issues with toilet training should give folk an appreciation of the degree of Jason’s impairment. It makes me wonder whether his impairment is just too great to expect the MP to perform a miracle. Perhaps some greater emotional stability, such as we are seeing, is as much as we can hope for.
I do appreciate everybody’s involvement and encouragement and realise that this is an unprecedented marathon (insofar as it is unknown how the MP will work or not with a severely impaired ASD child) and, so far, there are only good signs.
John
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Father of Jason, 11 year old autistic boy. Chronic infection evident from urinary amino acids (see bioscreenmedical.com). Benicar 40 mg QW8H from 7 Apr 07. Phase 3 from 28 June 08. Covered up, sunscreen.
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BARNEY
Member in Phase 3
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Posted: Wed Oct 15th, 2008 05:55 |
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John,
You hang in there, Jason will make it a long way farther than you can imagine. MP is just a total miracle in itsself. You will just be blown away at what will happen. I truly believe this.
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar20mg@3hrs, xtra as needed, Mino25mg @other day
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