As most of you know Tyler is my 2 year old , absolutely ADORABLE son,
an only child ( for now) & is making progress daily with a variety of things from vocalizing/ communicating, reaching for objects, pushing buttons on a few favorite toys, eating well by mouth, & drinking more from cups & the latest STRAW.
He has a metabolic disorder called Non Ketotic Hyperglycinemia.
He is able to be in his stander for an hour, which his p/t says is a little long for just being in 1 position & not moving his legs & feet, but if he sleeps in it, I leave him there.
He is learning to hold things like his cups, spoon, for self feeding, & some toys. Not bad for a kid that some Dr.'s said wouldn't make it past 2 weeks huh?
I have to say," I LOVE my defiant~ Contumacious ( thanks KERI) Son
I did teach him to flip off the 1 Dr. that said that & that is a WHOLE nother story.
Any way, Tyler use to be on about 12 different meds 2-5 times daily.
But against the recommendations of all his Dr.'s I had had enough of suppressing my son & his ability to live & just figure stuff out for himself.
I took SINGLE Medication he was on to make sure that it didn't taste as bad as what feces smells like & to see what it did to me.
Some of the meds he was on were for migraine headaches & anti-psycotics, also used or mis used to treat seizure disorders/epilepsy.
With NO improvement & in some cases increase in seizure activity, I decided to wean him off 1 by 1 these so called anti-seizure meds.
To make a very long story short, by September last year, he was off all those medications.
I am proud to say that he is only on 3 now , not including hois multi vitamin.
1) Sodium Bezoate~which is suggested to lower or slow down the production of Glycine that his body makes.
He is suppose to be on this 255MG/ML dose @ 8ml 3x a day, but I usually only give it once or @ the most 2x daily & some days he doesn't get it @ all.
This is a preservative & we monitor labs @ least every 6 months & so far haven't seen any Glycine elevation, that is abnormally high
The Dr.'s say that Tyler GLC ( Glycine Cleavage System ) works to some degree, but no one knows to what extent yet, which will explain what types of therapies & treatment Tyler has been receiving since about 6 months of age.
He is also on Dextromethoraphan 9MG/ML @ 5ml 3x daily, however, like the B, I only give it 1x a day, or @ the most twice & some days don't give that either.
This rx is a cough suppressant, but is used for Tyler or other NKH affected people to block to amount of glycine that can get into the GLC, & CSF (Cerebral Spinal Fluid) in turn causing seizures or other brain abnormalities.
He is on Ranitadine ( zantac) 15MG/ML @1 ml 2x daily.
This I only give him if he takes the SB, because that shit is like battery acid & burns your throat like moonshine burns nose hairs!
All Tyler's meds are compounded & flavored , his compounding pharmacy is excellent & they do a good job, but the SB is some hard shit.
All these med doses are based by Tyler's weight. mg/kg.
We are just happy to report that the med. doses have not been increased since 5/07
So Tyler's has been seeing on of my old co-workers BBF, that happens to live & practice 15 minutes away from us ! He & his wife own & operate Holistic Health Care.
Yyler has been seeing them on a very regular basis since about 6 months old. He started acupreasure massages for about 3 months,then I was taught to do these @ home, then we went to acupuncture ( sho ni shin) always focusing on Tyler's meridian point or as some of you may be able to identify, chakras. We then started micro-current stimulation therapy. Eventually we bought the machine so we could do it @ home whenever~daily ( thank you 06 tax refund!)
Basically it sends very lifght electronic currents to stimulate certain areas of the body.
I did put it on myslf, to make sue that it wasn't harmful, & Tyler enjoys all this stuff, given that he's so adaptable any, but believe me, if he doesn't like it he's NOT shy to express himself.
Tyler has only been on anti-biotics a hand full of times & all but 1 time they have been during hospitalizations.
We will give him herbs & moxi stick combustion treatments prior to giving him anti- biotics
We have always scheduled acupuncture prior to any vaccines or sx procedures. & will do another acupuncture session a week or so after these things. I can't stress how much he enjoys going to see Miles & Chia!
I would have started this method earlier, but all his prior Dr.'s advised against it & I had to change all Tyler's Dr.s & go against many family members to do this. Now, Tyler is opening up an new path for many people , he is AN AMBASSADOR to "TRADITIONAL" medicine.
Western medicine has only been around for a few hundred years, compared to Easter, where western medicine derived.
I am happy to say that we have found an excellent team of practitioners & a wonderful balance of combine efforts to help enable Tyler to really start engaging & physically responding to his surroundings.
It's very Exciting
He has only had a total of 6 seizures this year, the longest that we have gone w/o is 2 months, so I have faith that he will out grow this.
He is now caught up in all but the 1 of his vax the whooping cough) he was very late getting those to, due to conflicting information from VERY incompitent Dr.'s . He was 6 months when getting his first set of vax. & just last year "caught up" We have always requested thimerseorl free vax/ no mercury containing vaccines. We always give him Tylonol 15-30 minutes prior to any vax.
We have only done flu shot NOT the synigis vax.
But it has worked out. So far he's only had a few minor colds, all the hospitalizations this last year, remain a mystery, we do have a pulmonary appt coming up @ Stamford, where they may be able to shed some light on why Tyler was unconscious & us having to rush him to the ER on a few occassions last year. So Scary, the last in Nov, kicked my ass 
& probably his to, but he sure came back strong & looked better than me
Anyhow, he's doing great.
He gets o/o 2x a week
p/t 2x a week
music once a week
acupuncture 2x a month
micro-current 3-5 0r more times a week
as for acupresure massages
Cranio sacral a few times a month ( which I have also learned, by taking a couple classes)
a vision teacher & a speech teacher that come to our house every 2-3 weeks or when ever.
& of course I get to carry this on in our down time.
He has also participated in Warm Water therapy/swimming, we have taken him to Easter Seals or our pool( not heated) or grandma in Livermore which is heated.
He still takes baths with us, so we can do stuff in there too, & he still sleeps with us.
He will continue to sleep with us , until I know that he has NO MORE Seizures.
I hate if that happens & he's alone.
We are in the process of ordering a toilet , becuase he can tell us when he needs to poo, so that's cool.
Still un-decided on if we will let him attend pre-school, but that transition meeting is coming up next month!
I have learned that if you get off you ass, a lot can be accomplished & that L.I.F.E is NEVER B.O.R.I.N.G!
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