This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!


Wednesday, September 21, 2016

Products We Like for Managing Our Health Conditions

There are many items sold as therapeutic for the various conditions that we have.  Below I have sorted them by ones we've used and liked, and ones we hope to try (because we've heard good things from people we trust).  Of course not everyone is going to agree on which products they find helpful so take this all with a grain of salt.

MEDICAL and MEDICATION SUPPLIES

J-Tip Needle-Free Injection System I don't know how widely available this is yet but an amazing idea- a way to give injections without the fear and discomfort of a traditional syringe.

Exogen ultrasound bone healing system.  A friend who I trust used this device to significantly reduce the length of time it took for a broken bone to heal.  It's raised my curiosity.

Vogmask These face masks are more comfortable than most, partly because the straps go behind your ears instead of behind your head.  They come in several sizes and many colors and patterns.  In my experience they work pretty well but some smells, etc do make it through.  This is a good "everyday" mask.

I Can Breathe! Masks These masks, made by a family-owned business, are similar to vogmasks but can be washed and have replacement filters, whereas Vogmasks don't.  I haven't tried these yet but have heard that they are good.

Pure Non-Scents Face Masks I have found this mask to be more effective than Vogmasks at filtering out harmful exposures, but it is much less comfortable.  The one linked to here has silver in it for added protection from viruses.  Some people need to avoid silver so be aware which one you order if you get one.  They have another one that is especially good at filtering out mercury here.

PHYSICAL THERAPY

TheraCane This tool is helpful for getting bones back into place if they sublux or dislocate, which happens frequently for many of us with EDS (Ehlers-Danlos Syndrome). I use mine almost daily.  It can also be used to do trigger-point massage and myofascial release on yourself.

CranioCradle This is a soft foam device that can be used to relieve tension and pain in the neck, back, and sacrum.  It can be placed under the back of the skull to reset your craniosacral rhythm.  I also use this almost every day.

Silver Ring Splint Company Many of us with EDS have difficulty using our hands and fingers for some tasks because they are hypermobile (too flexible) or double-jointed.  These splints are expensive but are effective and are actually nice enough that they can feel like jewelry.

IntelliSkin This company makes clothing that can help keep joints in place with gentle pressure and traction which reduces the rate of subluxations and dislocations for people with EDS.

CLEAN AIR:

IQ Air makes some of the best air filters available.  They are expensive but worth it if you can afford one and need clean air.  I have one and it has allowed me to live in environments that I otherwise would not have been able to.

Activated Charcoal This company sells a variety of products made with activated charcoal (carbon) including air filters, water filters, carbon cloth that can be cut to fit specific needs (like covering vents), even capsules for internal use.

CLEAN WATER:

Berkey water filters These come in a variety of sizes and each can have different configurations of the various filters.  In my opinion this is the best tasting filtered water that I've ever had.

AquaSauna This company makes water filters that are installed at the point-of-entry for the home, so that all the water in the home is filtered and clean.  I found this to make a major difference with showers and baths which can smell of chlorine otherwise.  They also sell filters for sinks and water bottles with their filters in them.

This product (bone char) can be used to filter water and is especially good at removing heavy metals and fluoride.

FEEDING (TPN, Tube feeding, etc)

Pitch It IV Pole This is a lightweight IV pole that is collapsible and portable.  It is sturdy enough to hold a full TPN bag for an adult.  It works best if kept in one place and not moved around often.  It's hard to avoid tripping over or stepping on the "feet", which are flimsy enough that they get squished and bent easily making it very hard to roll the pole around.

I ordered a more sturdy "hospital-like" pole which is much stronger and better for moving around.  It seems that all IV poles are kind of a pain to drag along with you when you need to move, they tend to be top heavy and the feet can easily trip someone up.  I do need a pole for the gravity infusions, but I don't use it for much else.

Most of the time if I am moving around I use a wheeled cart to carry my infusion bags.  I've seen variations of this in which someone might use a rolling suitcase or rolling backpack.  I bought one called The Trolley Dolly which has been working out really well.   It's larger than it looks, it could easily hold two adult TPN bags (with pumps and everything).  A major downside is that it had a nasty chemical smell to it that took awhile to offgas enough that I could use it.

Cord keeper This is a cover for the lines that go from a feeding or medical pump to a PICC or port, to help keep the line protected and from getting caught on things or wrapped around things.  It's a handmade product and come sin cute fabrics.  I haven't tried this yet but plan to get one when my port is placed.

SENSORY AND OCCUPATIONAL THERAPY PRODUCTS:

Autism Community Store has a big variety of products for sensory needs such as swings, trampolines, and weighted products.  They also have things for adaptive living, speech therapy, teaching materials, and toys.

Therapro This company sells a wide variety of specialized items for therapy and adaptive living, including products for eating, hygiene, speech and adaptive communication, fine and gross motor skills development, and more.

Fun and Function This site sells sensory products such as swings, fidget toys, weighted and compression items, items for eating, sleeping, school, communication, and more.

Privacy Pop These are bed tents that are similar to one we used with Roo when he was younger.  It seemed to help him feel safe and secure in his bed.

CLOTHING FOR SENSORY NEEDS:

Independence Day Clothing  This line of clothing was designed to allow people with several kinds of challenges to be able to dress themselves.  The clothes don't have a front or back or inside or outside so they are simple to put on.

Hanna Andersson This clothing company makes long johns/pajamas with flat seems that are very soft and comfortable for many people with sensory needs that can make a lot of clothing uncomfortable.  Some of these products are also made with organic cotton.  This is the only one of these clothing companies that we've bought things from (mostly their long johns/pajamas, socks, and underwear.

SmartKnit Kids This company makes clothing such as socks and underwear without seams, tags or elastic bands that bind.  At least some of the clothing is chemically treated because it claims to be "anti microbial", so something to be aware of if this is a problem for your family.

Kozie Clothes This company makes sensory-friendly clothing, without tags or internal seams, and also makes clothes for babies and children with special medical needs (such as clothes with a hole for feeding tubes or other medical devices, and clothes that help with temperature control).  They also have weighted and compression items.

NoNetz Is a company that makes swim trunks without the mesh interior that can be so hard for some people with sensory needs to tolerate.

MISC.:

MIRON Violettglas I'm not entirely sure what to make or this but it seems intriguing.  Supposedly the glass that these bottles are made from is unusual and keeps whatever is inside it fresh and potent longer than in other containers.

These are glowing strips that you can stick inside the toilet bowl to help with aim, especially at night.

LowBlueLights This company sells products that block blue light which can help people to fall asleep at night.  This includes blue-blocking glasses, computer monitor filters, and lights.  The idea is that this helps the body to produce enough melatonin.

A new font is available that was designed to help people with dyslexia to read more easily.