Sunday, May 10, 2009

May 10th ! Happy Mothers Day

So it has been a while since our last update. Ty is off of the tea and we took him to Melbourne FL to see Dr Rossignol. It was a great visit, and we have some hopeful treatments that we will be steadily implementing over time. Dr R. agreed with me that PANDAS is probably an issue with Ty's reaction to the prevnar vaccine back in 2003, the OCD behaviors, high blood strep titers, and gamma strep always in his stool tests. We will be treating Ty with a weekly dose of Zithromax and Dr R thinks they may begin to lower the titers over time.. says it takes about 4-6 months. We have also begun daily Diflucan. Dr R and I believe that because Ty has a tendancy to jump to pre-verbal while on short courses of diflucan, that it may be doing something other than treating gut yeast for him. Ironically however, these past 2 wks. on it we are not seeing a huge jump in echoics for the first time. Surprising, and I hope just clouded by his high Ammonia that came back last week. Maybe when we get that under control (he loses a lot of focus and stims a lot when Ammonia is high), we will see some nice benefits. We also began Spironolactone for brain inflammation just 5 days ago. It is too early to tell, but we have had a few nice things happen the past couple of days, including some attempts at appropriate toy play and nice focus in some photos taken of him. We sent bloodwork for the Ann Connoly test to be performed and will be reviewing that for the Landau Kleffner Syndrome variant when the results are in. Ty certainly fits some of the mold for that and if it were to be true, we would be looking into low dose seizure medications as LKS is a rare form of pediatric epilepsy. Here is an explanation that makes so much sense to me.. as to why his language continues to be impaired and his gains don't necessarily stick over the 5 years we have tirelessly treated his many physiological conditions related to his autism...

All children with LKS can be shown to have seizure activity during the active phase, that usually affects both sides of the brain (although one side may seem more affected), and is often concentrated in areas known to be important for language (centro-temporal region). Some of this activity results in actual seizures but much of it does not, that is, it is ‘sub-clinical’. EEG recordings show that there is a particularly high rate of subclinical epileptiform activity in sleep, which often amounts to nearly continuous spike-and-wave (CSWS) discharges (Electrical Status Epilepticus during sleep or ESES) during the active phase of the disease.
It is thought that regression and impairments are related to these epileptiform discharges during sleep, and that these electrical seizures ‘short-circuit’ the normal wiring so certain functions of the brain are prevented. This seizure activity, which is often-widespread, prevents the child from using his or her brain normally so they regress in abilities. Initially, the brain is not ‘damaged’ in the conventional sense, but rather caught up in an ‘electrical storm’ that blocks certain brain functions (especially language, attention, social functioning). Stopping seizure activity may restore these functions.
LKS mainly affects a child’s language abilities, and this is probably related to the common location of recorded discharges over the key language areas (centro-temporal region). It was initially thought to be specific to language, but certainly current experience is that other higher functions are also commonly affected, including attention, social interaction, behaviour and motor control. Non-verbal cognitive skills are usually relatively spared, although not always, and it is not unusual to have specific or more general learning difficulties.
Unlike physical injury where brain ‘plasticity’ allows other areas of the brain to take up important functions, in LKS, the brain’s capacity and reserves appear to be limited by the electrical activity. Consequently, relocation of skills (such as language) to other brain areas is not generally possible.

We will be navigating this new journey.. changing some supplements recommended by Dr Rossignol, included increased mitochondrial supports as he feels we have fully addressed this dysfunction in Ty yet, and some other cognitive enhancers. He ran lots of blood tests, so we will have a clearer picture in a few weeks for our next appointment!

And as an added update.. the Go Talk is going beautifully. Ty has gone from 10 requests at school to about 75 a day with its use. He is using it appropriately at home also. If the new treatments this summer don't spark more language, we will definetly be pushing for an upgraded communication device for the Fall at school! Thankfully, the staff is thrilled with the improvements in this area, so everyone is on board to see it progress!

Sunday, April 19, 2009

Got back Ty's OAT test and yeast numbers are horrible. With the high yeast, I think we can attribute the regressions we are seeing to it. Ty is not using his Go Talk device anymore independently, and shredding is back. Shredding could have been tied to the tea, so we'll have to wait that out and see what transpires as we tackle this current bout of yeast, but overall I see a very scattered and unfocused little boy. On a good note however (ever the optimist) the rest of his OAT looked pretty good, so if we can get this yeast under control, we may see some progress stick!
I bought the Body Ecology book and am researching that diet as a possible Summer intervention..... yes, more research....

Monday, April 13, 2009

DAY 144

Got the results back from his UTM and it was practically no excretion. I can discern one of two things, the tea has reduced his toxicity (which was well onto its way of low anyway), or pulling his methylation supps. back in November has him not excreting and the toxicity is bound. I am leaning toward the second explanation, and have added back the methyl. supps. He seems to be tolerating them the last 2 days, but too early to really tell if they are going to give us a problem.
We have begun treatment with Namenda, only at 2.5 mg. right now. Again, too soon to tell, day 4. And we have decided to move forward and see Dr Rossignol. We will be taking Ty to Melbourne, FL at the end of the month for our first consult. With that appt. approaching, I am looking for a baseline as I know he will be ordering many tests for Ty, and therefore have pulled his chinese tea as of today. I am going to try it for 2 wks. until the appt. and see if we see any reduction in the vocal stimming. While the high pitched yelp has decreased dramatically since the removal of the Enhansa, it is still a problem, now manifested in a monotone chant - lol. Of course, we'll be watching stools as well, as this was the main area of improvement with the tea!

Friday, April 3, 2009

DAY 134

Well it has been a bit of time since our last update and we have made some changes. The shredding stim was back full force, and I could only attribute to the new introduction of the Enhansa last month with dosing increases. Sure enough, when we pulled it, things calmed down tremendously. High pitched vocal yelp is actually way down also. Ty is once again looking pretty good. Some nice attempts at toy play, now that he isn't hell bent to constantly seeking out something to shred, and away went the portable DVD player in exchange for real TV programming. WOW! Enhansa did a number on him. He was on Diflucan and then Ketoconozole throughout most of it, so while many see yeast kicks up on intro of it, I don't think that was our issue for Ty. It was either the fact that it is high phenolic (cucurmin) or that the raise in glutathione levels was too much for him and resulted in detox. We did take a UTM about 10 days ago, but haven't seen any results from it yet. Will post when we do.
Other than that.. he looks good. He has begun to use his communication device at school and home and we are seeing some nice spontaneous requesting with it - as well as some decent echoics also. School reported 2 new words this week, and they never hear anything, lol!
Will keep yah posted!

Sunday, March 22, 2009

DAY 122

Met with TCM Dr yesterday for an exam, but Ty was very uncooperative. He did get a good look at his tongue and it was much improved from photos I had sent him several weeks ago. All "raspberries" on outer perimeter are gone and he said color looked great. Ty wouldn't let him check his lungs (but Ped. did a few wks. ago after mild pneumonia episode and said they sounded clear), nor would Ty let TCM Dr. take his pulse. Too bad. But overall, he felt he looked really good. Circles, that were red, under eyes also looked normal per Dr. and we haven't seen Ty's butt rash in over a month I believe.
We are collecting a 24 hr. urine sample today to send in for a UTM. We haven't taken but two the entire time on TCM and they were both unimpressive (however so were his IV chelations last Summer, so I am fairly confident we have gotten the majority of his toxicity down.) Still should be interesting though, as I have never done such a lengthy collection for testing!
Ty has been producing some very interesting sounds today - while babble is down today, he is coming out with some things we have never heard, like loud extended "oh's" and other approximations that are very controlled. Just different from the jibberish we usually hear. He did echoic "Bo" several times, which is the name of our dog! That is new.
We have taken Enhansa up another 75 mg. , so 1.5 caps a day, 225 mg daily. So far so good!

Friday, March 20, 2009

DAY 120

Just got back from a 4 day trip to Austin to visit friends and Ty did great. BM potty success the entire time and slept every night through. Woo-hoo! We tried to add back methylation supps last week and things went nuts - shredding came back to boot. So, of course, I pulled them! We are at 1 cap of Enhansa and that is going well. Echoics continue to be strong, truly longest "pre-verbal" has stuck, EVER! We may get language yet. Hearing tons of "no" (sometimes articulated "na") when he doesn't want something, and an actual appropriate conversation, albeit small -
He climbed into my bed at my friend's house the other morning and said "up" trying to get me out of bed, I said "no, lay down" and he said "na, up" and I laughed and said "no, night night" and he said "niy-niy, shhh..." waited a moment, and then said "up!" LOL! His babble is very appropriate, about the 9 mos. level - running beautiful sounds, some new - I really think we may finally be getting somewhere!

Thursday, March 12, 2009

DAY 111

Well, we survived IEP hell, and his teacher showed her true colors to the end - we really need a classroom change! Will be having that discussion this Spring and another ARD scheduled, since he is slated to have another year in her room next year!
But on to Ty - whoa - I don't know, but have to give a thumbs up to Enhansa where language benefits are marked! Ty sounds great! This is the first time in a year that "preverbal" is sticking for this length of time. His babble is fabulous, he is saying "no, no, no" spontaneously when he is upset enough to muster up an opinion, and his target words and sounds are perfect articulation. I love it! We just today took his Enhansa from 75mg to 150mg again, and no aggression like when we increased a week ago. Let's see if it holds.
Picked up a new batch of tea yesterday, and Dr. wants to attempt another exam on Ty. Up until now he has been relying on my testimony.. next week is Spring Break, so I will bring Ty in for hopefully a compliant tongue check and pulse. I still don't know exactly what the tea is doing, but I continue to see full BM potty trained, good looking stools, and nice joint attention. We are surviving on 20 supplements instead of 90 and overall, things are calm and progressing, although we have noted some ups and downs, lately things are great (knock on wood!).