So....

I'm feeling rather alone here. Stressed, worried, and alone.

PDD-NOS

This is the official diagnosis... at least for now. The doc said that to him she is clearly Asperger's but because she is missing one of the core requirements for the diagnosis as set by the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV), this would put her in the PDD-NOS category - Pervasive Developmental Disorder, Not Otherwise Specified.
It's really confusing, because PDD-NOS covers so many different things. It's the fall back diagnosis for kids who exhibit several signs of one of the ASD's (Autism Spectrum Disorders), but don't fit every requirement of the DSM-IV.
Honestly, I'm not sure right now if this is a diagnosis that could change down the road, or what it means for our family. Based on my research thus far, PDD-NOS is considered to be on the Autism Spectrum and therefore to be a form of Autism, but because it does not have specific criteria like the other ASD's it's much harder to get support such as state services and special education in the schools. Some states do provide services for PDD-NOS just like the other ASDs, but Colorado is not one of them. They exclude Asperger's and PDD-NOS from the state programs. As if these kids wouldn't also benefit from the behavioral therapies and such.

So... I'm not really sure how to get this verified. I mean, I guess a diagnosis from the therapist might be enough, but I don't know. Until I see this in writing somewhere, attached to my child's records, I don't know if it is real. Do I need to get used to saying that my daughter is autistic? She certainly doesn't appear autistic to the average person, but that's part of being PDD-NOS - if she was clearly autistic to the average observer, she'd probably fit into all those requirements of the DSM-IV. Do I say that she is developmentally delayed? She's so smart people will look at me like I'm nuts!

So, for now I guess I just won't say anything. No matter what she is diagnosed with, she is still my beautiful, wonderful little miracle who I thank God for every day.

October is SPD Awareness Month!

While doing some research on ways to raise awareness, I learned that October is Sensory Processing Disorder Awareness Month! So please, take some time to learn a little about SPD and how it affects the lives of those who have it or love someone who has it.

My daughter has SPD and I wish we had known about it sooner so we could have gotten her the help she needs sooner!

A couple sites I've found really helpful:
http://www.sinetwork.org/
http://www.sensory-processing-disorder.com/index.html

Stupid rules

In order to see a specialist, my insurance requires a referral from the PCM, Primary Care Manager. In this case, our pediatrician. Now, I have to give him credit, because he has been very helpful to us - we got the referral for the psychologist from him and the referral for the Occupation Therapy eval based on the psychologists recommendation. Based on the OT recommendations, we went today to request a referral for a Physical Therapy eval and an Ortho consult. He agreed to put in the referral for the PT eval, but not the Ortho consult. He said that without a specific diagnosis attached to it, the insurance would definitely deny it.
So, we have to wait for all the paperwork to go through, probably 2 weeks, before we can even schedule the PT eval, which will then take 2-4 weeks to get in for. Then we'll have to start the whole process again for the Ortho consult.
It just seems stupid to me that one specialist can't just refer you to another specialist directly through your insurance, instead of you having to jump through 6 different hoops to get the approvals.

There's more?

Apparently, yes there is. We finally had the Occupation Therapy evaluation for my daughter yesterday. After 2 hours, we left with a definite referral for the actual OT for SPD, as she qualified in several categories for it. However, we also left with a referral for a Physical Therapy eval and an Ortho consult. There were concerns with my daughter's spine and asymmetries in her upper extremities and pelvic alignment. Or something along those lines anyways, I had trouble keeping up. Her muscle development is not adequate either. She also had some motor delays.
So, my poor baby is apparently going to have a lot of challenges ahead of her. On top of the psychologist we will continue to see, she will now have occupational therapy at least weekly once the paperwork is in order, and likely will end up having physical therapy weekly as well. As far as the Ortho referral, I expect that she may end up with x-rays at a minimum and possibly even an MRI.
On top of all that, we learned on Friday that my husband will be losing his job with the milit@ry by the end of February. He should be able to get a new position as a civilian, but it's going to mean a lot of changes for us.
Please pray for our strength in dealing with all of this, and for the health and happiness of my daughter!

New contenders..

So the doc threw out 2 new terms today - Fragile X Syndrome and Bipolar Disorder. Yay. We're still thinking Asperger's is the leader though.

On a much brighter note (I hope), we finally have Isabelle's OT eval this coming Wednesday. It should at least finally bring us some relief with an official diagnosis and a game plan!

Diagnosis...

... still unknown! Surprise, surprise, the doc says my daughter is such a complex kiddo that it's hard to pin her down! She fits portions of 4 different things, the primary one being the Sensory Processing Dysfunction. She also has characteristics of some OCD, some ADHD and some Aspergers. But she doesn't completely fit into any of those categories! So, what he wants to do for now is continue with the plan for Occupational Therapy and see how things go once we get the sensory stuff more under control. The theory being that if you remove the SPD from the equation, it will be easier to figure out what is causing the other problems. Because he is still convinced there is something else going on in addition to the SPD. He's just not willing to "put her in a box" without being totally confident with his diagnosis.

The leading contender right now is what he called "a complex form of Aspergers," but since that generally requires medication to treat, he wants to be certain before we go down that path. As long as we are willing to be patient, he wants to continue evaluating her. Patience is not my strong suit, but in this case I will do all I can because I want what is best for my daughter. If she needs medication down the road, then fine, but we don't want to jump the gun. I personally find it reassuring that this doctor wants to be absolutely certain before labeling my daughter for life, and that he agrees with us that medication should be avoided if at all possible.

So, that's where we are. Still waiting on the referral for OT, going back to see the doc in 2 weeks, and in the meantime I get to try to analyze my daughters relationships. As in, what are the triggers to her often thinking her friends are mad at her and don't want to play with her. Thus far it seems that all the other kids play like normal kids, but Isabelle has trouble inserting herself into the group. She does okay with one on one, but with a group it's like she doesn't know how to interact. Unless they are actively trying to include her, she takes it as that they don't want her to play. It's kind of hard to explain. But I guess an example would be the last time we were all at my neighbor's house - kids from age 1 through 7, and Isabelle kept coming into the kitchen, climbing on my lap, and telling me that no one wants to play with her. I'd tell her to just go join in, shortly thereafter she would be back telling me the same thing again. A couple of times I went and helped her get in with the group by asking the other kids what they were doing then suggesting a way for Isabelle to join. Shortly thereafter, she'd be back upstairs pouting again. When I'd go down it looked to me like everyone was playing together fine. She often seems to have trouble fitting in with the group, but I can't really pinpoint the problem.

Anyways, this got to be a lot longer than I intended! I basically wanted to say that we're really not much further than we were 6 weeks ago! I guess it is kind of nice to have an expert confirm what we've always known - our little girl is one tough cookie!