Once again it has been months since I have updated anything on this blog. It's been crazy at our house. Caleb's last hospitalization took a lot out of our family. We had to keep going because we had two other kids to take care of, plus once Caleb came home from the hospital, we had to be ready to help him return to school.
Once Caleb came home on November 7th we met with his regular psychiatrist and she wanted us to go ahead and get some more testing done with a Neuropsychologist. She had also recommended we have a Functional Behavioral Analysis done with a doctor in the same office as the Neuropsych. So in December we met with both doctors. I really liked both of them and felt for the first time in a very long time that we were going to get some answers and some help. I had hope for the first time in a long time.
The Neuropsych wanted to do three different sessions of two hours each of testing with Caleb plus one session with me to get some more information. He would then review all the data, write his report and meet with us to go over his report. The meeting with just me took place after the first two hour session with Caleb. I also took in some papers that Caleb's regular education teacher had filled out. In those papers she expressed her concern that Caleb had been regressing. The doctor told me that based on the information that I had provided him in the initial appointment and now the teacher's concerns about Caleb's regression, he was leaning towards a very difficult diagnosis and wanted me to be prepared. He was leaning towards Childhood Disintegrative Disorder and he told me to begin researching.
I began researching; however, there is not a lot of information regarding Childhood Disintegrative Disorder.
After all the testing, Tony and I met with the doctor right after the first of the year. The doctor performed 13 different tests on Caleb. The final diagnosis is CHILDHOOD DISINTEGRATIVE DISORDER; ADJUSTMENT DISORDER WITH MIXED DISTURBANCE OF EMOTIONS AND CONDUCT; and MILD MENTAL RETARDATION.
This is some of the testing results:
IQ is 59, which he is <1st percentile.
Verbal comprehension index score is 69, which is in the 2nd percentile.
Perceptual Reasoning Index Score is 75, 5th percentile
Processing Speed Index of 50, <1st percentile
Reading – 2nd percentile
Reading Comprehension <1st percentile
Math – 1st percentile
Written language – 27th percentile
Oral language – <1st percentile
The doctor did an adaptive behavior evaluation to go along with the IQ testing to get the full picture of Caleb’s IQ for the MR diagnosis. The following is what was so hard to read.
Communication – impaired – 1st percentile
Receptive communication – age equivalent 1 year, 6 months
Expressive communication – age equivalent 2 years, 10 months
Written communication – age equivalent 5 years, 1 month
Daily Living Skills – impaired – 1st percentile
Personal daily living sills – age equivalent 2 years, 9 months
Domestic daily living skills – age equivalent 1 year, 10 months
Community daily living skills – age equivalent 3 years, 1 onth
Socialization – impaired - <1st percentile
Interpersonal Relationships – age equivalent 6 months
Play and Leisure Time – age equivalent 6 months
Coping Skills – age equivalent 10 months
Seeing all of this in writing was devastating. However, we're able to know what we're dealing with and can move forward. However, we're still trying to rule out if there are any medical causes as to why Caleb may have started regressing in so many areas.
On May 5th we will be meeting with a developmental pediatrician and then on May 6th Caleb will be having a spinal tap and another EEG to see if those can bring us any answers, including making sure that Caleb's seizures medications are controlling his seizures.
I'll try and post soon about the behavior modification things we have been doing and how that has been going.
