Thursday, June 17, 2010

Doctor Dan visit and Other therapies ( Week of June 14)



Prologue  


Thank you for those wrote. 


Always love your comments 


A couple of comments expressed concern on DAN. 


Appreciate your concern very much 

So  wanted to add a little about our DAN journey


Also wanted to add a disclaimer as our choosing biomedical methods is  not a ringing endorsement of the methods in general.


It all depends on what your child needs, what you can afford ( in terms of time and money ) and of course always being safe  finding someone good and ethical 


The magic  words in Autism are  


Custom. Approach


When we started on our Autism journey, we ignored the biomedical aspects , 


Then a couple of years back we did a urine test "just to rule things out" and found that R had very high levels of mercury 


We also found through food allergy testing that R had a gluten allergy 


We looked for a doctor who treated these types of issues  - we found a good one - he is a regular pediatrician who takes regular insurance and has a regular practice

However his daughter has autism and so he set out to learn about DAN 


I assure you were are very level headed and have made sure that we "first do no harm"


Plus he is a very good doctor and he is frequently telling us about all the quackery that we must avoid


Another thing is we are not trying to "cure"  autism  or that the things we do means   that we don't accept him fully 


I think you all know that how much we adore him


Frankly we do not even see R through the Autism lens at all 


It is simply about meeting his needs - be they an allergy to wheat or apraxia 


DAN treatments get a very bad name in the ASD community ( frequently deservedly for charlatans and quacks abound  ) 


But we have kept a very open mind in looking at options for R - neither swayed by miraculous cures nor throwing out the baby with the bathwater  at stories about the DAN Quacks 



Doctor Visit 

Saturday is the long trip to Nashville to see our DAN doctor

R is always very stimmy in these appointments -

I realized on our drive to Nashville  out that this was because he was afraid of a blood draw

So I tell  him in the car several times that there will only be "talk and no hurts" this trip

This has a marvelous impact on R 's mood - and he gives the doctor a hug when he sees him - he is also calm and plays with a plane and a car ( "Very appropriately") in the doctor's office

The doctor is delighted

However he is also very gracious and says that we are doing so many things for R that it is very hard to say what is working

This is one of the many reasons I love this doctor !

There are many charlatans who do DAN - not this doctor

MIL asks us anxiously on the phone as to what the doctor said and touches every wood when I tell her what the doctor said ( that he is doing very well )

I dont necessarily share her elation though

DH and I simply do not use other people any more to tell us about R.

 Its extremely valuable input - but certainly not the verdict.

On our Autism journey -where no one really knows what the cause is  , nor  why there is an  epidemic , nor  what the cure is ...  we deal with a lot of ambiguity !

We now  see specialists as people who give us directions on our way -

Someone unscrupulous may deliberately mislay you .. another may have the best intentions but not the knowledge of the way ...

If you are lucky you find someone who has knowledge and good intentions.

But even when you are lucky ( as we are ) and work with a lot of people who are good  AND know thier stuff ..  no one really knows the way in any definitive sense

We find we  must be able to judge who seek  advise from .. be able to recognise a wrong road and be willing to course correct .

For instance, we  know that R's mood in testing situations is a big predictor  as to how well he tests

I always remember back to the early days when within a week two specialists hinted at future genius and doubts on cognitive ability

In this case simply not having the anxiety of a blood draw meant that he "tested well"  and was described as  "developmentally  exploding"

Everybody talks about autism being a spectrum

But parents of autistic children often notice that our children move up and down the spectrum in the same day !!!

Our  doctor wants to do more testing on heavy metals and this always makes me uncomfortable -

Becasue I fear it will lead to a recommendation on chelation

I do not know why I fear chelation - I only know that I do

DH and I confer quickly and decide to at least do another baseline test to see what heavy metals he still has - his first test results showed mercury and last year showed some ( not too high ) lead

On our car ride back I tell DH that I want to be done with DAN

I cannot believe I am saying this !

I am always the person in favor of action - of doing things .. of not missing something that R needs

DH  replies " we can be done if you want to "

But I dont know if we are ready to be done either  ..  dont know  if we feel we have done enough

Eventually we decide that we will continue for another 8 months or so for usually the DAN protocol is a 3 year protocol ( and also depending upon what the next set of heavy metals and labs show )

We stop at Cracker Barrel at Lebanon

Oh how I adore their Pecan Pancakes !!Another reason I love Cracker Barrel is because its one of the few places I can feed my Bit of Honey Addiction

I am back to being a great big Fatty and must exercise more restraint and also exercise

We smuggle in the important Mc Nuggets for R

R plays in the playground at the Mall and hides beneath tables in the shops - ...its so cute when he peeks out of the curtain


One of the delights of being mum to R is that even at 5,  there is such a sweet babiness to him

Other therapies 

This week it seems all our therapists are for one reason or another unable to come for therapy for R- car trouble, illness etc

I feel like I must in fact compensate for this - this state of fewer hours of help that he is getting from the outside

However he suddenly seems really relaxed and happy under this benign neglect.

Mad for the swimming pool that DH has put up

Playing with his letters in the bathtub making longer and longer sentences

Here he has written "The Talking words factory" - one of his Fave movies .. sorry the T is missing


It again reminds me that holidays are important too

Easy to forget that

My insidious mommy guilt is ever alive and reminding me that I dont do enough

But as I keep saying at work .. let the data guide you .. and so I am teaching myself to be okay with this time of just being

We made a decent therapy schedule for the summer .. it seems to really be falling apart from time to time

And its somehow still okay

6 comments:

Kris said...

Great post! How true that the doctors are guides and no one really has the answers. Great insight. I have also learned over the years on this journey to trust my own instincts no matter what the experts say! And chlelation scares me too, I would never do it.

Queenbuv3 said...

I have to give you my honest opinion on DAN doctors and chelation (like I ever don't give my HONEST opininion no matter how much it seems to upset other people), don't do it!! Chelation is dangerous.

http://www.webmd.com/brain/autism/news/20080918/chelation-study-autism-called-off

Your gut is clearly telling you not to continue with a DAN dr. for a reason. Autism has become big business for a lot of people and I really feel a lot of these DAN doctors pray on parents guilt and fear that if they don't do a million things to their kids (supplements, chelation, GFDF diet, etc.) while they are little that they will never make any progress which is just not true.

You obviously love your son and accept him and I'm sure you will decide to do what you think is right for him : )

TherExtras said...

Wow, K. This post is really a rollercoaster ride. Up and down and up again.

If you going to get his heavy metal blood levels checked again (an anxiety producing stick) go to a lab completely unassociated with the DAN doc for an unbiased test.

I like how you believe pros act as a guide to you. True. And I agree with Queenbuv3.

R has a 'lifestyle' that supports his development - including many people and therapies. Each visit is not a 'dose' of medication that cannot be missed. A consistent lifestyle has room for occasional (falling apart) glitches.

And over time, you will not like R's 'baby' behavior (like when he is as tall as you) and he will not need the same 'lifestyle'. Changing with him is as important as 'doing enough'.

Barbara

Lisa said...

As always K, your softness in your words and loving words for R win me over time and time again.
I am going to research DAN doctors and Chelation because it is not part of my world, though it is yours and I want to be able to understand.

Hugs,
Lisa

K- floortime lite mama said...

Thanks you all for your honest opinions - I REALLY appreciate them
Rest assured DH and I have our sensible hat in our DAN journey
Biomedical has (inin many cases pretty deservedly) got a very bad name in the ASD community
Oour doctor is a real MD and a very nice guy and only started looking into the Biomedical aspects of Autism becasue his own doctor is Autistic
We did not want to do ANY Dan to start with
A couple of years ago "just to rule things out " we did a independent lab urine test and found that R had large amounts of mercury in his body
This made us look for an MD who knew about DAN
Even then we have very carefully only done things that do no harm

Anonymous said...

I understand your anxiety over missed therapy and the feeling of having to do something for R all the time, but rest time is so important too.

Because of the timing of my son's birthday, his early intervention program ended just as the school year ended, so he won't be starting his special ed program until September. We thought of paying for private OT and speech therapy out of pocket, but we can't afford it and honestly, we were feeling really burnt out by the constant therapizing. We decided it would be better for everyone to take a few months off and just enjoy the summer. I do have anxious moments where I wonder if I'm doing the right thing, but they're offset by how much I'm enjoying just being with my kid without trying to fix him all the time, you know? It's so nice to take a break.

If you feel you need to take a step back for a bit, it's okay. It may be just what you and R. need right now.

-- Li

Floortime Lite Mama

On my life as the mother of an adorable 5 year old with Autism and Apraxia