Thursday, May 29, 2008

Lo and Behold

Just as I was thinking about how much more focused he has seemed lately he was Mr Stim Central at Applebee's today at lunch - probably becasue he has never been there before
Anyway it was odd to see him so stimmy again

We are doing much less

with him these days - he watched a lot of TV over the past few days honestly
I dont know if its the MB 12 injections or having my niece and sister here but he actually is very focussed and alert
We need to do a better job of giving the injections though - the past fews days he has srtirred and little and I think its becasue we are putting the injection on the less fatty part

Tuesday, May 20, 2008


In the bathtub yesterday I saw this with the foam letters
"Make" that can also be "wake" and "bake" - the first puzzle
On the floor yesterday I saw written out in blocks H O P E
And the O P E N
What a nice cheerful disposition this 3 year old has ( to hear him whine you would not think so )
In his word whammer ( only has places for 3 letters ) and he wanted to make C --L-O-C- K but he could not so he thought for a little bit and spelled out C-L -K
Great problem solving - no ?

Monday, May 19, 2008

On love

My sister and niece are coming tomorrow - I am so excited I can hardly stand it
Also nervous !
R never likes new people - especially new people who monopolize mom - he is astonishingly possesive of Me
to bask in the glow of this most precious child's- is bliss It gives him some control - as I love him back madly too - and so he is not so dependant on others opinion of him - I cringe when I think of a possible future when not only will people see him as different - but their perception will matter to him
But I will worry about that a little later
Today's worry is simply - what will he feel tomorrow ?

There is a ghost in my house

Both DH and I swear there is - Its a mischeivous ghost rather than a mean or cruel one
Things Keep getting lost and then found right in front of our eyes - yesterday after days of looking for Rohan's glasses we found them lying on the floor next to the bed
And the floor has been vaccummed and we have been using the room regularly

First week of MB 12

Just wanted to add that after MB 12 injection 2 - I really am not noticing any other changes
the only big change this week is more correct and acccurate vocalizations
Even while watching the Bumble bee DVD'd R was trying to imitate the sounds - which I have never seen before - again there is no way to know if this is becasue of the MB 12 shots or becasue of something else
Yesterday evening he feel asleep on my lap and slept for a long time in the afternoon and was so amazingly relaxed and with it all evening
Sleep may be the best biomedical intervention there is
The Kirkman supplement is a B$%^& to give too

Saturday, May 17, 2008

General Distracted day - lousy Saturday

Today other things happened that are making me distracted and quite upset - I have to see the doctor on Monday - Horribly stressed about this 
And as a result R is very distracted too 
Have I mentioned before how alarmingly sensitive he is to my moods 
At 3.5 he still sleeps with us - Today we got out his toddler bed  and attached it to our bed 
We are hoping this will help him start to sleep in his own area of the bed  if not his own bed 
As a further enticement we got a quilt cover that has the print of numbers all over- from IKEA 
I plan that he will sleep on top of the quilt ( the mattress seems really hard by itself ) hopefully the quilt on top of it will make it soft 
We also ( finally) put all our winter clothes away - between this and getting the closet  emptied in the guest room - I am more exhausted than I can say - My sister and niece are coming on TUesday - I am soo excited though the medical stress is really really upsetting me 
And the week's cooking is still left !!!!
Hausfrau weekends are EXHAUSTING 

Wednesday, May 14, 2008

One last thing Edited to add the Evening

Edited to add about the evening His therapy notes today evening are Mostly no;s escape and avoidance , however did very well with vocalization - - tightening body but not full stemming - When singing song I paused and gave him time to vocalize and he did His theropy notes from Yesterday Evening are - Lots of escape behavior lots of no's Tried to sleep Productive on sounds after many prompts no spontaneous sounds - a lot of babbling So really not much difference except increased vocalization - we got a frequency counter and he had 93 vocalizations compared to yesterday at 53
My overall observations of the evening are as follows The start of the evening with me which is mostly snuggle time and cuddle time went well - which it always does by the way - I think this is one of Rand my favorite times of the dat and involves a lot of kisses and compliments and playing will pillows Post therapy I notice he did not need the 30 minuets stim time he usually does but quite purposefully dragged me around to swing him on the different swings and for a change did not fall asleep on the swing as he usually does . Overall I would say there was a subtle improvement compared to yesterday but it could also be because he slept well last night

DH called me to say that when he went to school R was crying because he was the last kid to be picked up
His teacher wqas surprised becasue R has never shown that awareness before ( all the other kids have left but me - waaaaaah ) - just an interetsing random incident

Pre and post first MB 12 shot

Well I went home at lunch today and read the therapist notes from this morning ( she does not know when we are starting with MB 12 shots ) 
This morning - post shot May 14  10 am - Had some extinction avoidance behavior , but very talkative, spontaneous manding talking more 
Yesterday morning-preshot - May 13 10 am - Had some extinction today, at times not wanting to work , but also had a lot of  chest congestion and coughing 

First MB 12 shot

Yesterday night we gave R the first MB12 injection - as promised by the doctor - he actually slept through it rather than wake up crying in pain - what a relief !!!!
Today morning I called DH from work and DH says that R today mornin g seems remarkably relaxed and calm and happy - When I go back home I will see his theraist notes - We are not telling the therapists about the DAN treatements to get an unbiased perspective
I was so emotional before DH hgave the shot - that evening we had gone to the first Autsim Speaks meeting - they basically came to town to see if there was any interest in their organisation
Well I had only one hour as this was also DH's golf day - so the one horr while R's therapist was at home with him was bisacially the hour I had - but it was only 15 minutes away - this is a really small town - and I wanted to show support to this group - And went anways - As I drove into the parking lot i felt tears fill up my eyes as I saw that the HUGE parking lot in this SMALL town was full - I had to parallel park on a side and there were still cars pouring in
You always hear the word epidemic but yesterday I saw it. And it made me very sad.
So many children so few services

Monday, May 12, 2008

We did a bunch of lab tests ordered by our DAN doctor Comprehensive Metabolic Panel, CBC with Diff, Cholesterol, TSH, Iron, copper ZInc Everything has come back normal ( we can check online in this awesome Doctor's office )
Does this mean we should not start with all the supplements that we brought with us?
Basicallty that biomedical will not help us ?
HIs mercury is very very very high though ( French lab shows Remarkable mercury toxicity )

Tuesday, May 6, 2008

First Dan visit

DAN Visit
Overall pretty decent visit – Sweeter nicer kinder doctor than our ped – let R play with his computer – and R somehow took a liking to him and sat on his lap and kissed him.
The doctor definitely had all the qualities of the good DAN doctor – had ASD child+ no promise of cure + board certified MD with a regular practice+ no pushing things from his pharmacy- we did eventually buy some of the supplements from there and they are actually the same price as the company website and we saved on shipping + he wanted test results to define our next steps.
Definitely did not feel like a snake oil
Roughly the protocol is
Heal the gut
Give the body the extra things it needs to restore the healthy methylation process and encourage the production of Glutathione
Help body get rid of some of its harmful stuff
Our next steps
He did make a comment that the comment from the lab results which says “Remarkable Mercury toxicity” was unusual and this was the very very high – most of his patients who get the test done get “Mild “ or Moderate “ in their results .BTW I have also researched on the high false positives and there are some other markers in the test like a high creatinine level which would lead to false positives – in our case the creatinine level was fine.
The next two steps for us are
First, heal the gut – We got Digestive Enzymes and Probiotics
I did explain that R has minimal gut issues currently.
However he had had a phase of gut issues between 15 – 18 months when he had 6 rounds of antibiotics ad 6 ear infections in those 3 months- Interestingly this is also when his ASD developed – the videos I talked about the other day – before and after at 15 months and 18 months show really a different child (with markers of some abnormal development like not much developing speech – 4-5 words and no pointing even before that )
He asked us about GF CF and I said we had tried it and had stopped our trial after 3 months of basically no change when we stopped !- He did get us to do some blood draws
Second – give the body Extra things it needs – we got the Super Nu thera ( mega vitamins) and he had already send us the Methyl B 12 shots so we will be starting them soon
Step 3 – Remove the bad stuff – we are not there yet While we are not starting chelation now – I am doing some homemade stuff to hep R– Vitamin C and Cilantro ( the herb that a lot of Indians use to garnish – looks like Parsley )
Where I am mentally
Really I am not expecting any wonders /cures –I really don’t know what to expect – The CF GF diet which is huge for many AS kids did nothing for us . As of now my main worry is how to get this stuff inside him
I do know that we HAVE to explore this path or I know I will be regretting it later

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