On a good day, parenting will test the integrity of your character. On a bad day, parenting will test your will to live. Parenting children with trauma histories will cause you to test the integrity of everything and everyone you thought you knew, for the rest of your life.
~J. Skrobisz

Wednesday, December 29, 2010

Relief! and Acronym Assistance

Therapist said with trepidation that we should still be able to keep Sissy's therapy team since there are disagreeing diagnoses and her private/on-going care pdoc and psychologist have PDD-NOS as Axis II. The Dx that the government used to qualify Sissy for disability also has PDD-NOS on Axis II. In addition, the psych ward was only crisis stabilization and not ongoing care so they may have observed behaviors that suggest an Axis I diagnosis but with only 72 hours of clincial notes, it's not enough to change the Dx across the board, it is merely a suggestion for ongoing care. And finally, the pdoc would send reports today showing PDD-NOS as Axis II. [1]

That's a mouthful, I agree. All of it means we're good to keep the same therapy plan we have for the next six months since Sissy just reauthorized for another 600 units with her IFI team. (Who are credentialed to write a PRTF)


Now, for acronym help (because some of you asked for definitions)
1. PDD-NOS = pervasive developmental delay not otherwise specified

there is some disagreement in the mental health community about this Dx. Some say it is just another title for ADD/ADHD. Others say it is a higher functioning form of autism, higher than Asperger's. Some say PDD-NOS and Asperger's are one and the same. With PDD-NOS as an Axis I diagnosis, it is assumed Sissy has some form of ASD

2. ASD - autism spectal disorder

3. mood disorder - NOS = again NOS means not otherwise specified which just means that it's hard to say if Sissy has bipolar with psychoses, schizophrenia or dissociative identity disorder. In general, the mental health professionals prefer to refrain from labeling mood disorders until after puberty because the mood variations are too sporadic to get a clear picture

4. RTI = response to intervention. This is a four tiered system of academic accommodations that students may need in order to perform at grade level. A tier 4 RTI student automatically gets an IEP. Sissy is at tier 3.

5. IEP = individual education plan. this is an academic plan created to specifically address a student's learning impairments that are evidential of their mental health and/or developmental delay issues

6. RAD = reactive attachment disorder. I know, you're laughing at me because DUH, of course you know that. However, did you know that this acronym also means Reactive Airway Disorder which is a chronic asthma condition? It is important to make the delineation when talking to a triage nurse at the ER or you may find yourself talking to a pulmonologist instead of the psych intake.

7. Dx = diagnosis

8. Rx = prescritption

9. Px = prognosis

10. IFI = intensive family intervention. This is a therapy team that comes to address a patient's mental health needs. (NOT developmental issues) including helping the parents/caregivers get a plan for discipline, routine and wrap-around services like occupational therapy, adaptive swim , tutoring, etc. This agency acts as a go-between in the event CPS gets involved in your child's case because ideally, the therapy team's notes are sufficient to demonstrate to CPS that your family is continuing to address your child's intense needs in an appropriate manner in addition to providing a safe environment for other family members. These therapists are considered "core providers" that can write a PRTF to demonstrate a need for placement in an RTC or other facility. The majority of their therapy approaches revolve around CBTs and DBTs

11. CAFAS score = not sure what the acronym means but I can tel you that this rating scale is the "green" light for referral to RTC. If your child's behaviors score above 120 on the CAFAS scale, then there is significant data to recommend placement. For Sissy, her CAFAS is too low because she won't show behaviors at school (or the school isn't accurately reporting which her therapists and we suspect is the case). We've also been informed by both the IFI team and the hospital that repetitive visits to the crisis stabilization unit at the psych floor drives up a CAFAS score very quickly as well as suicidal and homicidal ideations and self-harming or threatening behaviors to others with in a 30 day period. In other words, insurance looks at a CAFAS score before they even begin considering paying for an RTC placement.

12. RTC = residential treatment center. There are many different types. Sissy was at a "camp" type RTC last time. It was more for children between placements. Sissy really needs a more clinical/institutional setting.

13. PRTF = psychiatric review treatment form (or thereabouts) it is the questionnaire that a core provider completes that generates a CAFAS score. This is a standard form developed by mental health professionals and should be similar to or identical to other PRTFs in other states/jurisdictions. It is similar to a psychometric evaluation with a rating scale that is exponential. If a child scores consistently in the category 2 area, the CAFAS score is 10x fewer points than a child that scores in category 3. Category 4 patients would have CAFAS higher than 120 (the green light number for placement). Without her recent stay factored in, Sissy is straddling Category 2 & 3 on the PRTF (2 because school doesn't report what we and her therapists see)

14. CBT = cognitive behavioral therapy. In this therapy approach, the client is asked to confront their issues head-on. For example, someone with severe OCD might expect to sit with dirty hands for 20 minutes during a session while reporting their level of anxiety. The objective is to help the patient learn that if they can process the anxiety, the nuisance problem isn't really a problem anymore. For RAD kids, CBTs are used to help them address hygiene, anger and affection issues. Indeed, the intent of accurate and certified trauma/attachment therapy IS a CBT approach (holding techniques, time-in, etc.)

15. DBT = dilectical behavioral therapy (a secondary class of CBTs) In this therapy approach the client is asked to confront their issues using language. Fo instance, Sissy uses a number scale to report her level of anxiety, happiness or anger instead of actually using vocabulary words. Another example is coping skills - blowing bubbles,self-prescribed time outs, self-soothing techniques and screaming in a pillow to address anger

I hope that helps! If nothing else, you've just had an education! lol

[1] as it pertains to Sissy's PDD-NOS Dx her team is divided. The psych staff said they couldn't discern where the PDD-NOS began and the RAD ended. In other words, we can't say which is the horse and which is the cart. I say it's all RAD. I've always said that. Having a son with ASD, I can tell you straight that Sissy has NEVER had developmental issues like her brother. When she is forced to be appropriate in motor skills or other developmental concerns, she is capable. In addition, after many evaluations, Sissy does not demonstrate a need for OT. In fact, she comes above 50 percentile (OT is provided for patients that score below 35% which is where AB is at). Sissy's pdoc and her psychologist refuse to put PDD-NOS at Axis I BECAUSE she's a RAD. Even the RTC where Sissy spent 100 days last year didn't put it at Axis I. She's not really a spectral kid. She just initially presents as spectral because as the staff said, "She's a really tough case". We RAD moms know the truth. RAD mimics EVERYTHING. If RAD is on the docket, rest assured, that is the real issue.



GB's Mom said...

Glad everything went so well. At least your sucky life with Sissy didn't get the supports you do get pulled out from under you!

Kelly said...

Wow. Thanks for the education. :)

Crayon said...

I was praying that they wouldn't just drop her services. Even though that means they still don't have a definitive "diagnosis" [as if they ever will =P]

marythemom said...

I'm so glad you were able to get the dx you need!

I agree RAD mimics everything, but it also masks and makes other issues more complex, because no one seems to know how to treat kids with multiple diagnoses (not that anyone seems to agree how to treat RAD either).

I've heard that PDD-NOS can also be confused with FASD (as is the case with my niece).

Mary in TX

Tara - SanitySrchr said...

Thank you!!!!!

Chris P-M said...

We have a son with PDD-NOS and RAD too, although he's only 4 (chronologicallly!). You BET it is hard to tell the difference! We have our ABA team meeting with our son's attachment therapist next Monday to discuss this. I'm hoping it will be helpful for the ABA team (to hear from someone else, and I won't seem like a fanatic, controlling mom who over-analylzes everything!)

I too find myself wishing that things were different. This kind of parenting is draining.