Neurologist Prep

butterflygrooves

I'm waiting for the neurologist that we were referred to to call and schedule an appt, meanwhile I'm wondering what I need to discuss with him to get all of our bases covered.

The pedi at the center where we get services wants to see why DD isn't gaining weight, she's still in the 5th percentile even though she eats normal amounts now. She thinks it may be due to a change in her pituitary from the trauma incurred as a baby.

It was also mentioned that they might want to do some genetics testing, what would this be for and is it something the neuro does? Her cognitive abilities are still in question so I can see how that could be genetics related.

I don't know what info to include here to give a clear picture of DD but ask away and I will answer, I just want to be prepared.

grbnik

Hi Butterfly!  I have actually been thinking of you, and wondering how you all are doing!  I have read your blog, and wanted to see how your Owl is.    I don't know very much, medically, but I think that the neurologist would be different than genetic testing.  I believe you actually go to a geneticist for that.  Also, if you are worried about thyroid issues, you may need an endocrinologist.  I am only saying all of that, because my daughter is a food refuser, and I am looking in to it all as well.  Another thought if you have any further cognitive issues in question would be to eventually have her get a neuropsychological test performed (with IQ testing).  It seems like a lot, and I have to tell you, I am going back right now and paying the multitude of doctors bills I have from the last 3 months (GI, ENT, ped, anesthesiologists, etc), but, if it clears up any thoughts of 'what if' I say go for it.  I haven't been to the neurologist yet, so I don't know much about that, but I think there was a FAQ for neurology under the general FAQ sheet that may be helpful!

Be well.

T

ToastieSimons

Some genetic studies can be ordered by neuro.  it depends on the type.  We had a microarray, neurotransmitter studies and metabolic studies ordered by neuro.  However, our very specific genetic testing that gave us a diagnosis was ordered by a geneticist.  

For us, the dr's sent all the records to the neuro, they called us, asked a few basic questions and then we had a visit.  They ordered an MRI which we had a few weeks later and then we went back for a follow up. 

butterflygrooves

grbnik:

Hi Butterfly!nbsp; I have actually been thinking of you, and wondering how you all are doing!nbsp; I have read your blog, and wanted to see how your Owl is.nbsp; :nbsp; I don't know very much, medically, but I think that the neurologist would be different than genetic testing.nbsp; I believe you actually go to a geneticist for that.nbsp; Also, if you are worried about thyroid issues, you may need an endocrinologist.nbsp; I am only saying all of that, because my daughter is a food refuser, and I am looking in to it all as well.nbsp; Another thought if you have any further cognitive issues in question would be to eventually have her get a neuropsychological test performed with IQ testing.nbsp; It seems like a lot, and I have to tell you, I am going back right now and paying the multitude of doctors bills I have from the last 3 months GI, ENT, ped, anesthesiologists, etc, but, if it clears up any thoughts of 'what if' I say go for it.nbsp; I haven't been to the neurologist yet, so I don't know much about that, but I think there was a FAQ for neurology under the general FAQ sheet that may be helpful!Be well.T

Thanks, I haven't posted in months because of the fragility of the case, I really wanted to focus on establishing good attachment with Owl.

We've had two neuropsych evals, one in July and another last week but they aren't sure if her delays are all trauma based or if there is some cognitive stuff mixed in, we are in a gray area right now hoping that the therapies eventually make for a clearer picture. I hadn't thought to ask if they did IQ testing, I will ask this week. They were able to give me age ranges for all of her delays, most being on the low end of average, a few being lower.

I also thought we would need to see a geneticist but the pedi mentioned it during the neuro talk so I wasn't sure if it was something he could do too.

Owl started phonating on Thursday night, her voice is so rough but it's nice to hear her actual speaking voice after almost a year. She isn't speaking on her own but repeats parts of words and will sometimes answer questions. She doesn't say full words yet, just sounds but we have something to work with now, communication has been a long road for her.

butterflygrooves

Can someone link me to the FAQ, I can't find it, thanks.

ToastieSimons

butterflygrooves:

Can someone link me to the FAQ, I can't find it, thanks.

 https://community.thebump.com/cs/ks/forums/thread/69749237.aspx#ctl00_mcr_ctl00___PostRepeater_ctl01_DivPost

 not sure whey they disappeared again