Tuesday, January 5, 2010

Kennedy Krieger Appointment

Last night Zak had a sleepover with Rich & Laura since Ryder & I had to go to Kennedy Krieger in Baltimore for his appointment. To be honest, I am not sure how I was expecting to feel after leaving this appointment, but what I am feeling is definitely not it!

We made it there much quicker than I had thought we would which is a good thing since this means we are only about 30 minutes away. We checked in and met with a nurse who took all of the medical history as well has weighed and measured Ryder. Then we went back to the waiting room for a few minutes before Dr. Deepa Menon called us to her office. Ryder was excited to see all of the toys in her office and entertained himself while I answered a million questions. She asked about his personality, mood, development, routines, medical history, and previous testing he has had. Then she did some of the normal development testing tasks with Ryder. He did very good with the shapes and putting pegs in the holes which we have worked on with his therapists. She was able to pull up the results of some of his blood work done at Hopkins in December which showed all of the metabolic tests were normal which is good.

Her first reaction to Ryder is the same as many others....he is such a tough guy to figure out! She said part of her can definitely see some autistic behaviors while the other part of her is wondering why he is even in her office. Not really what I wanted to hear, but Ryder seems to be a very confusing kid for most doctors to figure out.

So we walked out of her office with the following:

1) Schedule the EEG at Hopkins (waiting for them to call me to set this up!)
2) Schedule formal ADOS testing at Kennedy Krieger (they will call to set it up)
3) Schedule formal speech evaluation at Kennedy Krieger (think this will be done with ADOS)
4) Schedule NeuroPyschology evaluation at Kennedy Krieger (they will call to set it up)

So today we walked out of Kennedy Krieger with her saying he has encephalopathy which simply means brain disease, damage, or malfunction. It is obvious he has delays which are being caused by the brain in one way or another. She said that if the EEG shows no seizure activity then she will more than likely give the diagnosis of PDD-NOS which is milder than Autism, but has similar symptoms/behaviors.

Dr. Menon is also going to refer him to a program they have at Kennedy Krieger which is called Early Achievements. This program is like the toddler group he attends through the county, but is smaller (only 4 kids) and works specifically with children who have delays in speech and socialization. I am not sure how often this group meets, but I should get a call from them with more information.

Another concern was brought up by Dr.Menon which was also brought up by Dr.Hamosh (geneticist). When they each took his diaper off during their exam they commented on the fact that he has not had surgery to correct the hypospadias and chordee. Well, he did have surgery to correct the chrodee but the urologist felt the hypospadias was minor and would correct itself so he did not do anything for that. Now about 15 months after his surgery we have had two doctors both comment that he needed to have surgery to correct the hyposapdias (Dr.Menon even said she can still see some of the chordee). This really makes Ben and I mad that it was not dealt with when he was younger. Now we need to decide if we should call the urologist who did his surgery or if we should find a new one.

Once again, we have no real answers which I have come accustomed to. Our goal is not to find a name, diagnosis, or label for Ryder...our goal is to find anything that we can help with additional therapy, medication, or whatever is needed.


Dilat said...

I found your blog because tomorrow I am going to Krieger with my son and I wanted to know what to expect :o)We saw some doctor at Walter Reed Hospital that said the same thing about my son: at first they were wondering why he was even there and in the end they said that he is inside the spectrum somewhere...

April said...

I loved Kennedy Krieger. The front desk staff and nurses were great. The doctor we saw was also very good with my son. My only complaint so far is that I still have not heard back about scheduling the testing the doctor wants done. Also, I have not gotten a call about the Early Achievements program she referred him to. But I liked the facility and staff.

Unknown said...

I found your blog while doing some research. My son sees Dr. Menon as well and participated in the Early Achievements Program. If you have the opportunity to do it you really should...it was amazing and the teachers are the best you will ever encounter for your son!! They do take a while sometimes to schedule, but you can always call and follow up with it.

Unknown said...

I came across your blog while doing some research. We also see Dr. Menon. If you have the opportunity to participate in Early Achievements you should do it. My son did and it was amazing. They are the best teachers you will ever encounter for your child!