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!

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....

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!

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!

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!

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!

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!).

DAY 106

just a quick note - parents watched Ty today for 3 hrs. I have noticed a major increase in babble and better articulation lately, but didn't mention it to them. The first thing they said when I asked "how was he" was glowing reports of magnificent babble! This is great - truly objective. I have to say I think it is falling back on the Enhansa! The change seems to correlate with that introduction! Whatever, we'll take it!

DAY 104

I let Ty sleep in this morning since he played in bed until 11pm after his late nap yesterday. He woke up at 7a and was very vocal. Good babble with excellent articulation. I am currently in IEP hell - so not much else to report for now until this storm blows over, lol.

DAY 103

Ty awoke fever free, albeit early (430a again), but not surprising as he slept almost the entire day yesterday. While lying in bed with him (I wasn't getting up that early!) I worked on echoics half asleep, lol. He had some of the best articulation I have heard - mom, dad, night night. Then later this morning I had him try to say "bed" (a new word) and much to my delight, he said it. Hubby was shocked..."I heard that?!!" What is really cool is that he used the ending "d", very clearly. So when I was running some of his word cards later in the day and got to "bread" he signed it, but usually doesn't attempt an echoic for it.. I prompted "say it" and he DID, hitting again the "d"!
Fever returned in the late afternoon, but he was fine after a nap and no motrin at night.

DAY 102

Ty awoke at 430a and came to our bed - he was miserable, couldn't settle in and wanted to snuggle close. All morning he was like this and completely lethargic and pale, so I took him to the Dr. A double ear infection! AGAIN! His last one was just on 1/10. I had him do a flu test, as Ty looks terrible (Dr agreed he looked much worse than just an ear inf.) but it came back negative. He has been sleeping all afternoon. Dr put him on Omnicef antibiotic, which in the past has done wonders for his strep gut bacteria and he usually looks great on it! We'll see - but I am concerned with the back to back ear infections. He hasn't had one in years and now this.

DAY 101

Ty was very tired this morning - he had fallen asleep early last night and awoke in the middle of the night, but stayed up for an hour and settled himself back down. He had a great day at school they said, but tired out around 2pm. He was fine afterschool but ran a 101 fever again around 6p and took a nap, (ugh). His face is kind of splotchy, some red patches, but after nap, no fever. Not sure what to make of it - as usual! Certainly the most fevers we have seen ever!!!

DAY 100

Put all of his sign or say words on cards last night and ran through them. Nice echoics and decent signing, going to work these to death and see if we can't get some spontaneous use of them! Fell asleep on my bed early last night (around 830p) and slept until 730a!
Lowered enhansa to 1/2 cap and no aggression today. Pretty mellow day, though requesting is down - he is pulling us to everything, but won't sign when we get to intended item. His Go Talk has been at school during eval. and I can't wait to get it in full swing at home this week. I think this will help spontaneous intent.

DAY 99

Ty woke up fever free and no motrin last night - he is happily stimming away the day (ugh). I increased Enhansa to one full cap and we have aggression! He head butted me, and is hitting on occassion. Will reduce and get him ready to return to school on Monday. He is beyond bored!

DAY 98

Home again today with fever spiking last night to 103 around dinner time. Motrin put him back on the go, but awoke again with high fever. Dosed again, and the fever returned, low grade this time, around dinner. No other symptoms of illness.. more independent BM's. I think he is on the mend, whatever it was! Needless to say, he is bored.. 2 full days of wandering and stimming, but some appropriate toy play and pretty much more of the same. The BCBA visit came to fruition when I gave her a write up of concerns and she delivered it to principal's desk - the bomb has been dropped and all of a sudden the district is jumping to look at my concerns. Funny, when I sent 3 notes to his teacher the past 8 wks. about how I was concerned for his upcoming IEP, I was put off.... HELLO... fair warning!

DAY 97

Awoke with 102 fever, so we'll wait it out and see what happens. Gave some activated charcoal last night to ward off any tummy upset if it is flu onset. He was thirsty this morning and drank some water no problem. Gave motrin and he was his usual vivacious and happy self all day - then tanked when it wore off... did independent BM though!
He was terrible for the visit of his school in home trainer and BCBA - just wouldn't showcase a single skill - ugh... but the visit the was good regardless, looking at some serious changes for his IEP.

DAY 96

Ty was tired upon waking and cranky getting off to school. I wasn't too surprised when school sent a note home that late afternoon he took a nap and he didn't eat much at lunch. By early evening he had a 102 fever - I swear, this Winter illness needs to end now! I cannot believe how sick he has been. He never pooped yesterday (or if he did I missed it). Just curled up watching TV all afternoon - I hope fever remains the only symptom - flu is abundant in the school right now (guess all those flu shots everyone ran out to get didn't work, shame that year after year, the public continues to fall for that crap!).

DAY 95

Finally a good night sleep! But upon awakening, oh my, a giggle fit that lasted until the bus came. And actually, I just had a meeting with his teacher and she said he has been belly laughing all morning.. I think the Diflucan is working, lol, will need to dose some charcoal this afternoon! First independent BM at school today (well first one that actually made it into the potty!!)
Worked with Ty afterschool on some maintenance curriculum and he did very well. District BCBA is coming over this week to view him at home as we have discrepency on skills that don't transfer to his school environment. Trying to get a handle on things as he has an ARD in two weeks!

DAY 94

Ty woke up at 2am and finally went back to sleep at 4am. But I must say the babble during those 2 hrs was absolutely fabulous! Remember the night I heard on the monitor the wonderful jibberish and it turned out to be the neighbor's kid on my signal?? Well, last night when I woke up to it, I actually thought to myself the same thing was happening - but no, this time it really was Ty, lol ! Yes, it was that good!
We had two more independent BMs on the potty also!

DAY 93

Ty woke up at 430a this morning - oh this is killing me! Probably the diflucan, but another independent BM on the potty (thank you just a 2 hr. Tomatis session!) and we have continued to see some more appropriate toy play. Why it doesn't stick, I don't know - but we'll take it when we see it and hope one day that it will transition!
Ty is a tough nut, but we will forge on. I tested out some word to picture matching and saw regression. His IEP is in 2 wks. and I am torn about his placement. This is going to be a sticky one. Preceding it is the meeting with the augmentative comm. device team this Tue. My head is swirling on approaching all of it! Such a difficult and complex situation, as we all know.