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 

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

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 )

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
Protocol
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

The MethylB12 shots are waiting for me in the refrigerator and I am too scared to give them :-(

To DAN or not to DAN

I think we are going to try this out -its been coming up again and again and now with R's mercury toxic results we really cannot keep thiniking that his ASD is a way of being which needs acceptance ( not detoxification ) its a really hard road for me to to down - to think that our 3 year old will have to ave injections and chelations and all that so scarybut I am scared of mecury even more
We will be driving down in 2 weeks to Frianklin, TN about a couple of hours away to start this
I am scared but also keeping an open mind and hopeful at the same time

Pretend Play

Some of the coins are dropping which brings me to three of the mantras of Autism

Repeat - Repeat and repeat - Many things will need more than one trial - heck more than 100 tries
Many times when they seem like they are not "getting something" - they actually are - and it will come out another day - never give up
Stimmy periods atleast in R's case seem to be necessary to him - so instead of getting overwhelmed by the stimminess its important to realise that stimming is his coping skill and one should think of it as "Self regulation" and not as "Self Stimulation"

I have swithced brands of his soap and lotion to natural Burt's Bees stuff

I think we are seeing the beginning of Pretend Play -

1. He put his toy phone on my ear - and he has finally understood what a phone is for
2. He pretended that the stem of his Littlep people Umbrella was a straw andd drank out if it ( it totally could be that he was thinking it was a real straw)
3. He also played with Leo and June figures and kised them and did Head Shourlders knees and toes with June

- as usual a step forward was preceded by a period of a week 10 days of a more stimmy R ( of course it could also be all the changes - I was out of town for 5 nights - he changed classes and is now in a classroom with more kids and fewer teachers - as he prefers adults - no doubt this is not a good change to him )

Cranio Sac Therapy

5 grams massage c- sac therapy - We took R was his session today and I really liked it - it was expensive 50 dollars for a 25 minute session and we will be paying out of pocket but it was really nice and VERY gentle base of his skull and that she could feel some heat coming out of there and that he seemed to have some twists in his neurological system ( she suggested birth injuries or something )
Sounds mumbo jumbo but right after he jsut seemed MUCH more calmer and well regulated - that we went to the Mall - he sat quitley in his chair and sketched with an alert happy expression and ate his lunch and did not protest to not doing his favorite things - this is a big deal as R seems to protest everything that is not according to his wishes . Even DH who is the king of sceptics and as scientific as they come happily made the next appointment for 2 weeks later LOL
The oddest thing was that R did not seem to mind it one bit and sat quietly there

Mercury Rising

Well we thought we would get the French Urine Poryphirin test just to rule things out
Now R never had a bad reaction to vaccines and I thought that our road into ASD was part genetic and part a 3 month period of 6 ear infections and constant antibiotics Still I had heard about this new test where you send urine to France and they test It really was more in the spirit of just to make sure Well the results came back and I am just sick to the pit of my stomach His Mercury levels have come back abnormally high- I think the normal range is below 9 and his is 23How did this happen?