Finally a diagnosis...just not what we were expecting.

MrsWilliams2B

DS was "unofficially" diagnosed with aspergers by the school's psychologist at the beginning of last school year. We set up an IEP with the school, and he was given additional help with his social skills and such in their ECE (special education) classes. We were referred to a developmental pedi, and after almost a year of waiting, we finally finished our eval. Our developmetal pedi side swiped us with a dx. We were not expecting  his dx to be Tourettes. He has Tourettes, ADHD, OCD and GAD. We were floored. We have read up on aspergers and we were comfortable with everything, just wanted him to get therapy. Now, we're dealing with a whole new ballgame. I am relieved to have a dx though, and am ready to get on the road to having a happy DS because he is "trapped" as the pedi said.

smiling76

Very interesting!!!  I'm curious--what will they do for that particular diagnosis?  I'm sorry you were floored but glad that you have answers.

 

 

MrsWilliams2B

Sorry for the delay in response, but we have little access to internet.

MH is not accepting the tourettes dx. He is completely convinced that DS has aspergers. The developmental pedi wants DS to see a neuro, as DS's "tics" are symmetric (or basically the opposite of what is textbook for tourettes) and they want to rule out brain lesions/injury. She strongly recommends meds for control of the tics, but has also said that tic replacement therapy (?) could also work. We are looking at another 8 months before we see a neuro, and our normal pedi won't touch the situation until a neuro sees him, so we are at a stand still in that regard. We have an appt with a counseling/therapist on Tuesday for his behavioral issues.

The developmental pedi is the only one that takes DS insurance, so the "second opinion" is not an option. I don't honestly know what to do, because while MH says that DS does not have "all the symptoms" of tourettes, but has most of the symptoms of aspergers....well, the only symptom that I seem to find in association with tourettes are the tics...and I see the rest of his issues being linked to ADHD, OCD and GAD. So, I am honestly still at a loss and I am not sure of what to do.

To make things even better, DS went to see his allergist last week because he has chronic bronchitis. Allergist did an x-ray to rule out pneumonia. There was not a radiologist available to read the x-ray, so a cardiologist read it...and found a right aortic arch (a vascular ring) that is wrapped around his airway. So, that could explain all his issues with his breathing. We have to wait at least 3-6 months to see the cardio-thorasic surgeon, so we are still on the "hurry up and wait" mode. So, any thoughts and prayers would be awesome.  

smiling76

MrsWilliams2B:

Sorry for the delay in response, but we have little access to internet.

MH is not accepting the tourettes dx. He is completely convinced that DS has aspergers. The developmental pedi wants DS to see a neuro, as DS's "tics" are symmetric (or basically the opposite of what is textbook for tourettes) and they want to rule out brain lesions/injury. She strongly recommends meds for control of the tics, but has also said that tic replacement therapy (?) could also work. We are looking at another 8 months before we see a neuro, and our normal pedi won't touch the situation until a neuro sees him, so we are at a stand still in that regard. We have an appt with a counseling/therapist on Tuesday for his behavioral issues.

The developmental pedi is the only one that takes DS insurance, so the "second opinion" is not an option. I don't honestly know what to do, because while MH says that DS does not have "all the symptoms" of tourettes, but has most of the symptoms of aspergers....well, the only symptom that I seem to find in association with tourettes are the tics...and I see the rest of his issues being linked to ADHD, OCD and GAD. So, I am honestly still at a loss and I am not sure of what to do.

To make things even better, DS went to see his allergist last week because he has chronic bronchitis. Allergist did an x-ray to rule out pneumonia. There was not a radiologist available to read the x-ray, so a cardiologist read it...and found a right aortic arch (a vascular ring) that is wrapped around his airway. So, that could explain all his issues with his breathing. We have to wait at least 3-6 months to see the cardio-thorasic surgeon, so we are still on the "hurry up and wait" mode. So, any thoughts and prayers would be awesome.  

oh my goodness!  I just read this and wow---you have so much going on.  I will keep you in my thoughts and prayers.  You poor thing.  I know how it can be when it's one dx after another--it just throws your world in to a loop.  Try to enjoy today and not worry too much as we truly can't change it, right?