Appointment update
mightmom13
member
In short, more monitoring per her age, definate autism symptoms, this was actually just the STAT follow up for her not to diagnos, more testing, add OT and a follow up. Autism symptoms with developmental delays or as I understood "A group (around 25 percent) whose symptoms more closely resemble those of autistic disorder, but do not fully meet all its diagnostic signs and symptoms" more commonly known as PDD-NOS. They want to add OT, follow-up in 2-3 months, EEG for starting/seziures, agree strongly with swallow study recommendation, add vitamin and calcium supplements along with nutrition consult for limited diet, a full speech clinical feeding evaluation, recommended audiology evaluation and to pick up the book "An Early Start for Your Child with Autism." Confused yet, lol.
In long; second opinion please. They said that based on M-CHAT and other interview questions from me - autism. Because she failed only 2 of the STAT observations, it "argues against autism." In the STAT, DD fed a baby a bottle (for the first time EVER...she has no dolls) after mouthing it for a minute, passed me the bubbles when she couldn't open them, eventually looked for the unseen noise, and failed the other 2 catagories - but passed the other imitation due to the peds belief that the lack of action with sound is due to her motor delay.
Like above, in the 30 min talk with me - she has expressive and regressive (this one was new) speech delays and motor delays with autism symptoms. She brought up the book saying, don't let this confuse you - check it out at the library...then went to definatly pick up the book, it's only $10-$11 in paperback. I will be picking up the book. Then I asked about sensory issues and was told that area was "nebulous" with no actually formal diagnostic in the field so I should talk to OT about that.
I did record everything on my phone - I am thinking about just telling my folks PDD-NOS because that is the defination I got even though they were not comfortable giving out a diagnosis of anything at this point other than developmental delays with autism symptoms and keep monitoring her for autism - and treat with OT. Is that not PDD-NOS? Would it be wrong to try and explain PDD_NOS to my folks since they are not very......understanding/accepting of all this?
DD will be treated as such with the therapies they recommend and support; pick up the book; run more tests; follow in their clinic. Sorry - this just sounds like they didn't want to give a diganosis because she is "still young."
Going out of my mind right now.
Re: Appointment update
Happy that OT was added and they agree with PT and SLP for treatment....I just feel like no one wants to give anything a name. Go see this doctor, then go see this one, then this one.
Here is how this dx would be treated. Oh, we are treating your child as if she had this diagnosis because the earlier we do the better the out come - but again we are not confirming a diagnosis.
Sorry - upset. Haven't talked in person to anyone yet.
Thanks for the link - it explains the changes in much easier to understand context than I have been able to find. I do not know which criteria they used, however, we will have follow ups so I am sure V will come along at some point.
My mom would google but not to that extent - I did speak with my dad and explained that the conclusions they came to equal the diagnosis of PDD-NOS and that they are not saying she does not have autism but they are not saying she does either. He understands the confusion and suggested I take some time to absorb/digest what I learned today.
I am not sure if the test was ADOS, have not had time to look into it. My frustration was that I had a different assessment of what DD did than the physician. To me, DD picked up the bottle, turned it around for a bit noticing the liquid movement, mouthed it a few times, touched it to the doll's lips, then mouthed the baby - to the MD DD showed pretend play by feeding the baby (again to my great surprise of a one time event). DD did hand me the bubbles when she could not open it, but did not turn to look at me just passed them backwards; to MD she looked to me for help and made visual contact. The imitation - I think it is tough to say whether DD did not pair sound and movement per motor delay or not in 2 tries.
Bottom line - I understand the need to wait for a dx; however it is hard because here I am wondering will I be raising a spectrum child or will I just be working a little extra harder this next year and a half. Also because I feel the need for definition of dx personally to settle my mind. Also the fact that she does not believe in sensory issues per say nor seem to take it seriously has me concerned as both SLP and PT mentioned seperately to grab a copy of "The Out of Sync Child" which PT is bringing to me from their share library.
Thanks - trying to hang in there. I wanted so bad just to get the therapy - which I did get OT and am surprised at such a wait and see approach however with action. Also - we need more scheduled tests like a hole in the head and I am having trouble fitting everything in to be there myself. And again - no sensory belief??!! I feel like I should take in books and journal articles.