tick battler
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posted
My 6 year old son was recently diagnosed with sensory integration disorder (SID). I knew he had sensory issues but didn't realize that there was a name for it. He also just had testing showing many of his neurotransmitters were abnormally high. He is on supplements to address the neurotransmitter issue, which I think the doctor said should help the SID.
I did a bit of research and saw that often occupational therapy is used for this...not sure why my doc didn't suggest this. I wonder if anyone here has had this or knows a child with this and can give advice on treatment. Did OT help?
I was happy to read that apparently this can be corrected through OT. He hates tags in his shirts, doesn't like my long hair to be near him, won't wear long sleeved shirts, doesn't like light touch, seems extra sensitive to noises and smells and lately puts everything in his mouth...chewing on pencils, toys, etc...
Thanks for any input.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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I used to work with kids who had anything from ADHD to autistic disorders. You may be able to find a human services agency that deals with this type of thing. You would think the school districts would know something about it, since in many cases they work with these agencies.
I'm not sure what's in your area, but there are a number of agencies in the Harrisburg area. If you look in your phone book under mental health services or something like that, they may be able to direct you.
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Keebler
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- Unless the OT is extremely LYME LITERATE, the therapy could cause more harm than good. And, be sure to have his LLMD guide any OT.
The neurotransmitter issues will not be resolved until lyme, other infections, heavy metals, any gluten issues, etc. are resolved. Therapy along the way may help - or hurt.
I can't wear tags in my clothes, must have 100 % cotton washed only in certain organic laundry soaps, etc.
I have to wear short sleeves - even in winter as I can't stand the fabric on my arms. It's good that I'm female as I cannot wear slacks - or even tights, just loose fitting skirts and cotton socks. Synthetic fabrics nearly make me pass out as they keep my skin from breathing.
My hair must stay short - and I've tried many times to let it grow out. It's a nerve damage thing, not at all just a preference.
There are reasons for this as lyme can damage &/or irritate the nerves and touch (or ANY sensation) can be very painful or just too much to track and bear - or at the least, extremely distracting.
I can't write more now but will be back tomorrow with some links for you.
Especially, though, avoid any sound training that pushes sounds that may be loud. That can be very damaging for any lyme patient with hyperacusis.
This can get better but not necessary with pushing sensory integration. Infections, heavy metals, allergies, supplements to help the nerves heal, CALMING therapies that make him feel better. Massage was the best for me, when I could afford it.
A very special massage therapist would be best. One who is LL, of course but also very familiar with inner ear conditions and one trained in the trager style and shiatsu.
All the things you describe are well explained in lyme literature but also with other tick borne infections and, of course with heavy metals. Adrenal dysfunction is also very connected.
This is far more complex than the diagnosis indicates. Through vestibular tests, I was dx with "severe sensory dysfunction" - but, again, in the lyme literature, it's all explained.
More later. -
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Keebler
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- I woke up thinking about this today.
Of course, your son's experience and mine may not be the same but I will offer what I've learned and do feel in a unique place to share the perplexing aspects of at least some sensory dysfunctions. Don't be scared that it's gone on so long for me as I've never had a real LLMD or LL ND past basic consults. I've had to piece together this and that on my own.
And, as my sensory stuff developed over time - and also probably from damage from many seizures - your son may have a much easier path. But, I will likely have references to seizures so don't let that scare you, but that it tied to overstimulation of senses in my case.
Bits and pieces as they come to mind:
==============================
sensory integration disorder (SID) is just an umbrella term, like fibromyalgia. It gives you detail about what is happening but the causes must be considered and treated or managed.
==============================
Study KPU - I think I recall a lot of light bulbs going on for me regarding sensory stuff regarding the tags on shirts, etc. I also can't stand much of a collar and need scoop necks.
Also regarding his problem with scents, see the MCS link. It's very common with lyme/TBD and going scent-free is necessary for most. Even many products that say they are scent free are not at all. So, it's best to consult the MCS site and others for those products that truly are unscented. ------------
Do NOT do regular AIT (auditory integration Therapy).
Do NOT.
This can work for some kids with autism but will NOT work with lyme. It can cause pain and seizures for those who have lyme or toxin related reasons for sensory stuff (and I will be using the word "stuff" a lot as it's just too much work to think of the correct term).
Explore the music of Mozart, Vilvaldi and Haydn.
and "Lights Out" at the web site for KINK-FM (in Portland, OR). Just google for that web steam and CDs
========================
As much as possible, teach your son how to graciously excuse himself from ANY situation that causes him discomfort, even if how to just move to a quiet corner, lie down, cover his eyes and put on dB-rated ear muffs.
� Find an instructor for children's yoga to teach him breathing and self-calming methods.
Topic: How to find an ILADS-educated lyme literate (LL) professionals in these areas:
Scroll down to the BODY WORK links and see the detail for FELDENKRAIS with a lyme patient. If you could find a LL Fendenkrais practi. that would be good sensory training.
=========================
If he needs his underwear to have the elastic covered by cotton, find that. I can't tell you how many times I've nearly had a seizure from the irritation of exposed itchy elastic or threads that were rough and irritating.
SENSORY training should be what he finds enjoyable for just as long as he does - no longer.
Now, her work may nor may not be appropriate for your son but the hugging machine she developed may be. I have not been able to see her movie yet, not sure if or when it will be on DVD but if you have HBO, you may see it there soon again as it just won another award.
===========
Dr. K's work on the Autism Spectrum for lyme and austiic (sp?) kids is vital.
=============
Avoid ALL fluorescent lights and "naked" light bulbs: -----------------
. . . Sarah is a woman in mid-life with two grown children. After a disabling bout with Lyme disease, she felt that her feet �refused to follow orders.�
Her gait was disturbed and simple tasks became hazardous. One evening she broke her ankle as she walked across her bedroom! Now her determination to stay mobile was burdened by more pain and weakness.
At this point, Sarah�s massage therapist sent her to me for Functional Integration lessons. She made immediate and rapid progress; her feet found their way; and her gait became stable and fluid.
�In the aftermath of Lyme disease, Feldenkrais� lessons contributed to my entire sense of well-being. The movements improved my fine motor skills. Also, because I was walking all wrong, it tired me out.
I knew I was walking incorrectly, but I didn�t know how to correct the problem�now that I�m walking better, I have more stamina,� she explains. . . . -
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Keebler
Honored Contributor (25K+ posts)
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�Mercury induces inflammatory mediated release from human mast cells � J Neuroinflammation. 2010 Mar 11;7 (1):20.
Abstract BACKGROUND: Mercury is known to be neurotoxic, but its effects on the immune system are less well known. Mast cells are involved in allergic reactions, but also in innate and acquired immunity, as well as in inflammation. Many patients with Autism Spectrum Disorders (ASD) have "allergic" symptoms; moreover, the prevalence of ASD in patients with mastocytosis, characterized by numerous hyperactive mast cells in most tissues, is 10-fold higher than the general population suggesting mast cell involvement. We, therefore, investigated the effect of mercuric chloride (HgCl2) on human mast cell activation.
p. 23 CONCLUSIONS: HgCl2 stimulates VEGF and IL-6 release from human mast cells. This phenomenon could disrupt the blood-brain-barrier and permit brain inflammation. As a result, the findings of the present study provide a biological mechanism for how low levels of mercury may contribute to ASD pathogenesis.
p. 27: Myelin sheath binds heavy metals
p. 28; p. 30 Detox
computers offgas (two notes on cadmium: traffic and even organic grains)
p. 32 Detox: reducing toxic burden from vaccine adjuvants
� Never give Tylenol . . . (it reduces glutathione production and makes thimerosal more difficult to clear from the body) . . .
LYME DISEASE Considerations in Diagnosis and Management
June 26, 2008 Lyme-Autism Connection Conference
125 pages � Powerpoint presentation
For an overview, start with slide #22 (just put that in the page box and hit "enter" key - then progress from #22 all the way through #47 to see some interactions) and then go back to the beginning.
LIA (Lyme Induced Autism ) -
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Keebler
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- Just as OT may only help if the reasons are addressed (and OT may also be too much at any one time),
Neurofeedback training (QEEG training, brain mapping) may help -- but ONLY IF lyme (or other tick-borne or stealth infections) and other toxic stuff (mold?, etc.) is FIRST dealt with - or at least along the way.
It is not at all effective on its own.
The same goes for neurotransmitter therapy. If the underlying cause is not addressed, it is unlikely to be successful.
With lyme, neurotransmitters can go haywire from the toxic neuro-excitatory NMDA receptors being too stimulated.
Addressing the toxic infection (or heavy metals, allergies, etc.) the NMDAs can be lowered.
I assume his diet is totally free of aspartame and MSG. Google for all the names they hide under. Even a TRACE can send me to the moon. Check toothpastes, cough meds, gums, everything.
���MAGNESIUM is also excellent along the way.
Adrenal stress should be addressed and,
always, when needed - whenever and where ever - your son should be able to take his own "time out" and get quiet and still. To be able to do so can help prevent seizures. QUIET is essential at times.
Not sure if this applies to him, but it may. Even the sound of one person's voice can trigger seizure for me. Sometimes, I can't identity why, exactly. With women, it's usually a false cutesy high pitch but not necessary. It can just be the timbre, cadence, how much punch they put into certain words, etc.
Some voices on TV can do this, too. I just can bear to listen to even some of the best trained news announcers (and I used to be one but now, even my own voice is nauseating to my own ears). I MUST immediately turn it off. Immediately. This is not a temper tantrum but getting too close to seizure activity.
Even the sound of a clicking clock can be too much. Seriously.
And ear plugs or muffs can actually make some things worse. I can't explain all the ways that works - or does not -for me as it's very complex. But it's more than about ears - the nerve irritation and brain swelling with lyme are involved.
And vibration travels through our nose - through our bones. Ear protection can add to vertigo and may not always remedy a situation.
I find it impossible to walk with ear plugs (makes vertigo worse - harder to know where my feet are) but can walk with muffs (rated to 29 dB minimum). I cannot read or think with ear plugs in.
If you son displays this sort of reaction, be sure to read the signs. When he's better, all this will be, too. There are many who have gotten better and gone on to be fully integrated.
Just support as fully as possible - but do not push. -
[ 01-18-2011, 12:34 PM: Message edited by: Keebler ]
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Keebler
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- Aspartame toxicity is not so much due to the liver, exactly, as it has such immediate reaction that the liver barely has a chance to deal with it. It is very excitatory and neurotoxic - to the BRAIN. Even a trace - even in gum. Nearly instantly and then the cascade reaction goes on.
Even a trace can kill brain cells. Anxiety can reach new heights. Depression new lows. With even a trace. It should be avoided at all costs. Totally.
Same with MSG. Google for all the names that hides under as well as all the cutesy products - and even medicines - that contain aspartame.
=============
- This is just a start to the research about the neuro-toxic effects of aspartame. -------------------------
Excitotoxins - The Taste That Kills - by M.D. Russell L. Blaylock
This is the 1997 edition
No customer reviews at this link but you can look inside the book and read (59 customer reviews) at the link for the 1996 edition of that book - http://tinyurl.com/as6je7
The customer reviews, in themselves, are an education.
Relief of fibromyalgia symptoms following discontinuation of dietary excitotoxins.
Ann Pharmacother. 2001 Jun;35(6):702-6. PMID: 11408989 [PubMed - indexed for MEDLINE]
CONCLUSIONS: The elimination of MSG and other excitotoxins from the diets of patients with fibromyalgia offers a benign treatment option that has the potential for dramatic results in a subset of patients.
Eur J Clin Nutr. 2007 Aug 8; [Epub ahead of print] Links
Direct and indirect cellular effects of aspartame on the brain.
Humphries P, Pretorius E, Naud� H.
[1] 1Department of Anatomy, University of Pretoria, Pretoria, Gauteng, South Africa
[2] 2Department of Anatomy, University of the Limpopo, South Africa.
The use of the artificial sweetener, aspartame, has long been contemplated and studied by various researchers, and people are concerned about its negative effects. Aspartame is composed of phenylalanine (50%), aspartic acid (40%) and methanol (10%).
Phenylalanine plays an important role in neurotransmitter regulation, whereas aspartic acid is also thought to play a role as an excitatory neurotransmitter in the central nervous system.
Glutamate, asparagines and glutamine are formed from their precursor, aspartic acid. Methanol, which forms 10% of the broken down product, is converted in the body to formate, which can either be excreted or can give rise to formaldehyde, diketopiperazine (a carcinogen) and a number of other highly toxic derivatives.
Previously, it has been reported that consumption of aspartame could cause neurological and behavioural disturbances in sensitive individuals.
Headaches, insomnia and seizures are also some of the neurological effects that have been encountered, and these may be accredited to changes in regional brain concentrations of catecholamines, which include norepinephrine, epinephrine and dopamine.
The aim of this study was to discuss the direct and indirect cellular effects of aspartame on the brain, and we propose that excessive aspartame ingestion might be involved in the pathogenesis of certain mental disorders (DSM-IV-TR 2000) and also in compromised learning and emotional functioning.
---- European Journal of Clinical Nutrition advance online publication, 8 August 2007; doi:10.1038/sj.ejcn.1602866.
PMID: 17684524 [PubMed - as supplied by publisher] -
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Keebler
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- it's best to avoid L-Glutamine supplements - or even too much from food. We get some in our food (and we do need some) but extra is just too risky for a compromised brain that is already very toxic and irritated. ---------------
AMINO ACID SUPPLEMENTS I: GLUTAMINE - with Reference to the Related Compound Glutamate
-by Subhuti Dharmananda, Ph.D.
Excerpt, half way down the article:
. . . Glutamate in Neurological Diseases
The other concern about glutamate is related to its essential role as a neurotransmitter. The levels of glutamate in the central nervous system (brain and spinal cord) are highly regulated, since the neurons have sensitive receptors for the compound.
� In some neurological diseases, it is found that glutamate levels in the central nervous system become unusually high at sites of pathology. This can occur, for example, if the rate of degradation of glutamate is slowed by an impairment of the enzymes that are involved.
� Also, glutamate is excreted by immune cells that take part in inflammatory processes; the result is high local concentrations at the neurons in progressive neurological diseases such as MS and ALS.
� Glutamate levels in the central nervous system can also increase when the blood brain barrier is substantially weakened, as occurs after neurological surgery.
� The excess glutamate at the neuron acts as a poison; at high enough levels, the nerves exposed to glutamate can be completely and permanently damaged, so that they are no longer capable of transmitting signals.
� Thus, while glutamate is a major component of the body, and an essential part of the nervous system, high levels localized in the nerve cells can be quite toxic, and this is readily demonstrated in animal models.
� Laboratory research has revealed that in the progressive, debilitating disease ALS, one of the many processes involved in disease progression appears to be damage of nerve cells by accumulation of glutamate.
� In relation to multiple sclerosis, changes in control of glutamate homeostasis in the central nervous system might contribute to demyelination of the white matter of the brain (19).
Based on preliminary animal studies, it has been suggested that glutamate dumped by immune cells can exacerbate the nerve damage (20).
� One of the means by which a stroke (causing blockage of blood circulation to the brain) results in brain damage is through an increase in glutamate levels in the brain cells (of course, oxygen deprivation and other effects are also contributors). These findings point to local glutamate excess as an important factor in brain diseases.
� Since glutamine is converted to glutamate, supplementing glutamine at very high levels in persons who have such neurological disorders may be contraindicated.
Glutamate and astrocytes * --key players in human mesial temporal lobe epilepsy?
Excerpt:
. . . An increasing number of studies have suggested that an abnormal amplification of glutamatergic activity--often referred to as the "glutamate hypothesis"--is involved in the pathophysiology of seizures and certain types of medically refractory epilepsies.
For example, elevated levels of extracellular glutamate in hyperexcitable areas of the brain, up-regulation of glutamate receptors, and loss of the glutamate-metabolizing enzyme, glutamine synthetase (GS), have all been reported in patients with mesial temporal lobe epilepsy (MTLE). . . .
---------
* Astrocytes are characteristic star-shaped glial cells in the brain and spinal cord.
* Astrocytes are the most common type of cell in the brain and play an important role in the function of neurons - nerve cells.
EPILEPSY AND SEIZURES - by Lawrence Wilson, MD (August 2010)
[The author discusses in detail the adverse effect of glutamine (glutamic acid) for those with brain/ sensory irritation and seizures. Even certain foods are to be avoided.] -
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Keebler
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Even relevant for a child -- about the ability to concentrate, avoid distraction - and some detail with how the eyes often move or spasm with lyme (nystagmus).
About 3% to 8% of people with dyslexia also have scotopic sensitivity syndrome (SSS) or Irlen syndrome. This is light sensitivity resulting to difficulty reading black prints on white paper. The letters and words are described by patients to seem to move or blur.
Over the past couple of decades, tinted filters or lenses have been used to improve reading. The use of colored lenses, filters or overlays (termed the Irlen Method) has helped 'hold the words in place' making it easier for people with dyslexia to read.
It's nice to see what it's like on You Tube and then purchase for your daily use with your DVD player. You Tube denies him of his rightful due for all his research and work.
The DVD is very affordable - about the cost of one supplement - it's just about $20. and you get a book with it, too. The DVD is also much easier on your eyes - from your TV at a distance. The computer screen is much harder on eyes.
This 1 hour and 15 minute DVD plus 65 page illustrated study guide and eye chart was the surprise hit at the recent New York Yoga Expo and evidently with good reason.
Meir Schneider, PhD, LMT is well known for his pioneering work with self healing in general eyesight improvement in particular. -
[ 01-18-2011, 05:04 PM: Message edited by: Keebler ]
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Keebler
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- In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
- at link. -
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Keebler
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- Tick Battler,
I know you'll track your other threads but, for others following this who may be collecting information, be sure to see Tick Battler's other current thread along these lines as there are replies and additional links over there that also relate: --------------
Topic: Child's neurotransmitter test results show neuro-excitatory pattern - autism? - January 14 (tick battler) -
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Keebler
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- I assume he is getting B-12 INJECTIONS ! This alone, can be extremely helpful - within minutes. Really.
Autism: Mom Uses Biomedical Treatment and Diet Change to Recover Child -
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tick battler
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Hi Keebler, Thank you so much for all of the time you put into this! I will get through it soon I hope.
The SID and austism spectrum diagnoses are new to me (though I knew he had such tendencies), so we have never been to a doctor who treats them...I have been focusing on lyme and now we think the lyme is gone so I am looking at other things as causes of his behavior.
I have wondered about the B12 injections and will talk to his current doc about them. I have heard good things about them!
Do you happen to know if there is a fairly inexpensive test for the methylation cycle testing? What is the methylation cycle?
Thanks again for all of this info! Sorry you have had such a rough time with these issues.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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My son has lyme and Aspergers (a form of autism) so he also has the sensory issues. Including food textures so he barely eats anything.
We never tried the therapy. He is almost 12 now and we didn't find out until a few years ago. Since dealing with the lyme we just can't add any more doctor bills to the mix. I am hoping some of these issues clear up with lyme treatment but who knows?
As for dealing with it, we do just that. I cut off bothersome tags and only buy him cotton clothes. Same with his bed sheets & comforters. I buy something I think he will like and then have to buy a new one if that doesn't work out. So we have several of those. LOL He also can't stand tight fitting coats or gloves or boots. So it took us a long time to find him winter gear for scout camping.
Does your son have lyme also?
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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tick battler
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Hi Amy, Thanks so much for sharing your experience. In case you are interested, I noticed online that you can do skin brushing on your own...I found a u tube video of a woman doing it on her child and explaining how to do it, as well as some other OT techniques. Looks pretty easy. The brushes are only about $4.00.
My son did have lyme but through alternative testing, we think it is gone. He still does have behavior and attention issues which have made me think he has Asbergers or a version of autism. He just had a neurotransmitter test which showed the levels are too high...which explains in part his hyperactivity. Now I need to research something new...
tickbattler
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GiGi
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Read Braverman's book "The Edge Effect" (don't let other opinions sway you from doing this and learning about it).
And most important is ruling out KPU and testing with Allergie Immun for absorption problems. If food is not absorbed due to allergic dysregulation in the DNA, it causes problems - a lot of them over time. Neurotransmitters can't fire if the needed material is not on board.
I have posted several Dr. K. presentations relating to Autism, Lyme, etc. They give a lot of info what to look for and deal with it. My "favorites" got lost and I can't link them right now. But I am sure Keebler can point them out. She should get a golden award for keeping files together!!!!!
posted
I'm sorry you are having to look into all this -- I know it's a whole new world.
Before I had to stop working I was a therapist who worked primarily with children with autism. Most of my clients got OT and many found it helpful.
Since becoming ill myself and finding myself acting in some of the ways my clients used to, I now question some of the techniques they use -- such as some that Keebler used. Obviously if he still has lyme this would need to addressed differently.
But, OT could certainly be something to look into if lyme isn't in the picture -- or even if it is, but your OT would need to be knowledgeable on lyme. I will say that most of my clients HATED going to OT at the beginning. All the sensory stimulation was increased at first, and they were very uncomfortable -- which is to be expected.
It did seem as though over time things improved though, and OT helped them. I heard many parents say that a good occupational therapist was like gold. There are some not so good ones too of course, so it's good to shop around.
You may want to see if his school will have him assessed for an IEP -- if his sensory issues are interfering with school. If the assessment shows that he has special needs and that OT is required for him to do well in school, they may pay for OT, or have him receive services in school.
(Sorry, I'm sort of foggy right now with the "correct" terminology here, which I really should know, but that's the outline.)
Just trying to think of things off the top of my head. I wanted to mention that one of my clients' families got him a "body sock", and this seemed to really help him. It was something he could get into when he was feeling particularly overstimulated and hyperactive, and it helped him calm down and feel more secure.
Also, something that many families did, and I incorporated in some of my sessions when a child was overstimulated, was firm pressure. Obviously everyone will be different, and this may not be good for some. But, sometimes squeezing (not hard, just firmly) the arms, hands, shoulders...and firm pressure on the scalp...this can sometimes feel good and calming.
I don't know if any of this meets your needs, but just trying to give ideas. Good luck with this process!
You may also want to look up to see if there is a local to you yahoo group for parents with children with autism. They can be a wonderful support.
Good luck!
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tick battler
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Gigi,
Thank you so much for the info. I will get that book. I have read some of Dr. K's presentations but with my 3 kids still at home (and needing much supervision) much of the day, I just haven't had enough time in the day to get through everything yet. I am currently researching KPU and on a wait list to get into see a doctor trained under Dr. K who can help us with it. I suspect it is an issue with many in our family.
Do you mind sharing how the allergie immune experience was with your grandchildren? Did they have lyme? Did they have any medical issues or major allergies before they took the drops? What symptoms did they have when they took them? How long did they need to take them to get balanced and how old were they when took the drops?
I know everyone has a different experience, but it would be helpful for me to know some of the symptoms I could possibly expect from this with a young child. Also in case it's not completely gone, I will be needing to watch for lyme symptoms to come back so it would be helpful if I could distinguish the symptoms. I know it may not be possible, but any info from their experience would be helpful. Was it difficult for them? What binders were given to them (and at what age)? If you can recommend specific brands you like, it would be helpful, as I know quality differs between different brands of products.
Thanks,
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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tick battler
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Gigi- one more question I forgot to ask...my son does have "sensitivities" to certain foods now which I suspect is due to leaky gut. They tend to go away after removing the food for a couple of months. But they can come back.
I'm curious what happens to these "sensitivities" when taking allergie immune? It seems like if they were corrected, they would come back because of the leaky gut. Have you seen this happen? Can allergie immune actually help heal leaky gut?
Thanks,
tickbattler
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tick battler
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Lymeaware - thanks for the wealth of info! I will try the firm pressure...I think he would like that. I have been massaging his back at night before bed and he loves it (both light and heavy touch). He likes pressure on his head as well. And today I tried some joint compression that I saw a woman do on U tube for sensory issues and he loved that.
We do have an IEP for him for his attention issues resulting from lyme and I think they were going to do some sensory testing on him...I do need to follow up on that. I was planning to call them to get advice about this.
Thanks also for the autism links...they will be very helpful for me. Just need to find the time to read all of this!!!!
Thanks,
tickbattler
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Keebler
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- Be VERY Careful with sensory testing. Let him guide it and if anything becomes too much, he needs to have the ability and support to say "I need to stop now" or "that's too much" or "I need to rest now" and so forth.
He will have to learn some grown up way to determine what his body is telling him - or if he just doesn't want to do something. But, even then, his body may have the wisdom and is trying to tell him something.
I cannot imagine having the degree of sensory problems I've faced as an adult - as a child. Although, looking back, I had many but the world was not so intense when I was young.
While KPU, etc. certainly need to be considered I would not be so sure lyme is gone. Now it may be in remission but an expert would be best to confirm that.
An expert LLMD should also consider all the stealth infections along with issues of autism spectrum, KPU, heavy metals, MCS, celiac, etc.
Be extremely caution with other sensory "experts" who do not have that knowledge base.
Be careful with those who want to push through it rather than support it, with extreme patience and trust in your son's ability and power to control his environment as he needs, even minute to minute --- as by doing so, he may be able to avoid seizures that developed when I just kept pushing my boundaries with sensory input.
Even trying to tolerate beyond my comfort level, just a few degrees too cold or too hot caused me a lot of brain damage from resultant seizures. It took me a lot time to listen to my body and be firm in what I knew I needed to prevent harm.
And - even as a adult - uneducated comments by others would just cut to the bone. I was so embarrassed, many times over. Those scars run deep. It's best to avoid them for a child.
Please look back over the numerous sensory references in this article: ----------------
. . . impairment of concentration, inattention, easy confusion or disorientation when attempting intellectual tasks. . . .
���. . . Lyme patients can be easily irritated by anyone just walking into the same room even though eye contact is never made or words exchanged. . . . ��
. . . Incidentally, hyperaccusis (sound sensitivity) can be a feature of VII neuritis. . . .
. . . Eye related problems in LD are commonplace . . . .
. . . disorganization, an inability to follow a train of thought . . . .
. . . Others forgot how to spell even simple words, how to read or must re-read with varying degrees of comprehension.
. . . impairment of concentration, inattention, easy confusion or disorientation when attempting intellectual tasks. . . .
. . . [and many more such references]
==================
I've read of similar experiences from other parents and, once lyme was more fully treated - or bartonella addressed (bartonella can bring on lots of sensory stuff) - or KPU (which is a very important issue) . . . the kids got better. This can get better.
In the meantime, the most comfortable cottons shirts for kids and adults are from LL Bean. Lands' End also has some but the quality of their cotton has taken a dive in recent years and they shrink more than the LL Bean cottons.
He's lucky to have you as a detective to help him find the most knowledgeable experts. Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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You are a wonderful resource. It is very kind and helpful of you to share so much of your vast knowledge with everyone.
I noticed the Land's End cotton is awful! I sent back some shirts I ordered a month ago that were not even close to the ones I purchased 3 years ago. I will try LL Bean; thanks for the tip.
Posts: 97 | From Great Lakes state | Registered: Jul 2008
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
tick battler, The food sensitivities after doing Allergie Immun do not come back. When the corrections are being made and you stay with the therapy until most errors have been found, the body learns to regulate again, i.e. is able to deal with these as it should. Even celiac is gone for good.
Over time, the gut will heal and the food and toxins will no longer move back into the bloodstream and the brain. This is not a biochemical correction, but rather an electromagnetic correction which then affects the biochemical action the body will take.
Read the website to understand better (google translate) You cannot lighten the body burden unless you give the immune system the correct information to deal with it. AI does that.
Wishing you the best.
P.S. Neurotoxins of any kind create a sort of chaos in the brain - AI will bring back the order. Again read the website or the thread on AI here on the board.
Posts: 9834 | From Washington State | Registered: Oct 2000
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The occupational therapy practice in your area that was recommended by my colleague is called Theraplay. There are several locations, and they take insurance. If you'd like to be in touch with a mom whose two children were seen there for multiple challenges including sensory issues, PM me!
Viva
Posts: 532 | From southeast US | Registered: Oct 2005
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
Thank you viva and gigi for the info...sorry - will clean my mailbox!
viva- I would like to speak to that mom whose children went there - will pm you! Thank you!
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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