Working diagnosis

oandmplus1

I posted the other day that we were anxiously awaiting or neurodevelopmental appointment. Well, the doctor gave us a working diagnosis of ASD. She saId DD fit the basic criteria but that in reality it may not be her true diagnosis forever, but it would help her to get more services in the mean time. She really wants us to focus on social, communication and the sensory issues, and she gave us a bunch of resources to check it. She said DD can't seem to get past the sensory stuff to learn new things, but that they do not like to use the diagnosis of sensory processing disorder because there isn't enough known about it yet. She also thought there might be more going on with DD so she wants another MRI of her brain and for us to have genetic counseling. I was doing ok with everything until she sa

oandmplus1

Sorry, bumping on my phone. I was doind ok until she said she didnt think it was "just ASD" and that there seem to be more problems rather than less from our last appointment.

Jcrab

Sorry you are going through all this! I can say these appointments are definitely stressful to say the least, especially when asking questions about the future. The MRI and geneticist sound like good ideas to be thorough and make sure she gets all the help she needs. I hope these further evaluations don't find anything. We've been through both of these and it's hard. We see the Dev. Pedi. again in a few weeks, I know he has made a lot of progress but I'm still not sure I'm ready for the possible heart breaking results. Fingers crossed!

kujayhawkgirl

After DD was diagnosed with cataracts and HSS, we went through evals from geneticist, plastic surgeon, ENT, had full body xrays (twice) and MRIs/ultrasounds of all major organs. Everything pretty much came back normal (except the geneticist, obviously), but they did it all to rule-out anything. I think it's a good idea to get a referral to the geneticist and have an MRI done. If there is something, it's important to know about it now. If there isn't anything, it's a wonderful peace of mind for you. ((hugs)) I know it's not easy to have so much unknown, but I hope you get some answers soon. In the meantime, now that you have a tentative dx, I hope you get some good services put in place!

 ETA: Congrats on your BFP! )

DJB2010

Hugs! I'm in the same spot as you right now. I'm scared to death of a diagnosis, yet I want help for her!!
We go to see the devel ped and genetic testing on Oct 8! For now it's speech therapy and getting thru everyday. I'm saddened because like you in a month it can be worse considering I keep seeing more and more. :