Nervous about Dr appt tomorrow | Autism PDD
Hi guys,
I am really stressing about Nick's first neurology appt tomorrow and I'm not sure why. I've got some serious doctor's anxiety going on and I'm not even the patient. His Ped diagnosed him with autism and is sending him to this pediatric neurologist for more testing. I guess I'm not sure what to expect. Anyone have any ideas and were any of you as nervous as I am?
For me, I guess it's the not knowing what to expect and dreading the worst -case scenario. Plus of course my dd is pretty petrified of drs. and just got used to her ped FINALLY and now we're off to another doc, so that's sorta the worst place to evaluate her (or anyone really since everybody gets a little nervous going to the doctor, don't they?? I know I do!) I would love it if you'd post on how it went and what happened. You'll be in my thoughts tomorrow for sure!
If it helps, my son went through several tests that were very similar to the developmental pediatrician's tests. The testing was long and T was really worn out by the end of it. He didn't want to "perform" and so . . he didn't. That didn't help the results. Just remember that a diagnosis can come back today as low funcioning or severely autistic and can come back in six months as extremely high functioning. I know because it happened to us.
The tests are not tailored to children who don't perform (what autistic child does?). They aren't usually very appropriate for children whose expressive and receptive communication skills are low and so if those skills are low then sometimes the rest of the scores are brought down because the child doesn't understand what is being asked of him/her.
It helped T to make sure he got lots of sleep and had a picture of the Dr. office and the Dr. and knew where he was going.
Hope all goes well tomorrow.
Carrie
For Luke's first visit to the dev ped, I was extremely nervous. I think I will be again when we go to see the ped neurol in July as well. For me, I'm worried that they'll tell me something even worse (like that he's lower functioning than I'm hoping) or even just validating his diagnosis kind of turns my stomach, even though I don't dispute it. Here's a big hug
and let us know how everything goes!!Good luck!
Kellie
hi there im glad the appointment went well
i some times feel very low about my boys . no on knows as im a very strong person(probably y no thinks i am affected by my boys etc). it has been years since jordon was dx and ryans going through it now . at the end of the day all any parent wants is normall healthy kids and when that doesnt happen u have to be seen as strong and coping etc but u are allowed to cry or feel down at any time after all u spend so much time having to think of others some times u need to let it out . take care we are all here if u need a cry xxxx Hi Nicksmommy... I know its so hard when our kids are first dx'd...and you have no idea what to expect or what all the differences are, and where does your child fit it...like you I'm always thinking the worse, I think its to prepare myself for just incase, hope for the best but prepare for the worse my mom always said...only I just focused on preparing LOL... Do stay off those test for a spell if they are making you a wreck, I was obsessed and it really didn't help anything...you'll see as you go how your son does...and with therapy and love and patience things do progress...slowly, but I'm a lifetime away from where I was in my deep panic state almost 2 years ago...I mean I still have my moments of fear but it gets easier as you start to feel like you are getting a handle on what he needs, the beginning is the hardest...and we are here if you need us... It sounds like your Nick did great, giving a hug and all, how freakin' cute was that LOL... My Nicholas is getting much better at the doctor's offices...but I use to cringe before hand...like at least a week or so before...will he act okay, will they think he's worse or better than he is...bottom line is get all the help you can for him...I think they realize they are only seeing a smidge of one day in his life and they can't base everything on that...they usually ask you lots of questions to get a better feel, and that always made me feel better for some reason. I wish you and your Nicholas the best of luck...from one Nicksmommy to the other LOL hugs! Ali Hi all, Thanks for all the ((huggs)). Things went very well surprisingly. Nick even gave the Dr a hug. Who would have thought??? lol... He didn't like the ct scan at first, but when the machine started spinning around him, he stopped crying and became intensely focused on that. I actually got the results of the CT back already and everything was normal..whew!!! He will still have to have an EEG. He also did fairly well having his blood drawn. They distracted him with a lollipop and an Elmo band-aid. (He loves Elmo.) The doctor didn't dispute the Ped diagnosis of autism, but he didn't give me any indication of severity. There is another Dr that he will be going to in August. She is a behavioral specialist and I think she is the one who will give me the "verdict". I know that we are scheduled for a 2 hour appt. These 3 docs seem to work as a team. The neuro said it was his job to rule out any malformations of the brain or strokes during delivery and to also see if there have been any eveidence of seizures. I actually felt a bit better after I left. I'm not sure what I was nervous about. I think part of me was worried that he would agree that he WAS autistic and part of me was worried that he wouldn't and I'd have to continue fighting for a diagnosis. All the tests I've taken online put him as severe and that scares me. I keep researching and reading and talking to anyone I can about Autism. My hubby says I'm obsessed and I should stop taking these online evals, but I think that maybe just one time it might come up different.
Kellie No advice... I'm always nervous when taking Tony to the doc too.... But GOOD LUCK!!! My Thoughts & PRAYERS are with you!! Linda...aka MWN64...aka Tony'sMom
Whenever I leave an evaluation (medical, educational, whatever), I get terribly down. Thank god many are at least an hours drive so I can be blue in the car. When Alex was dx with pdd-nos two months ago, I became a maniac. I read every book and web site I could get my hands on. You will get to the point where you get tired of reading all the info out there, some of which seems to be hooey. Listen to your own voice, you'll know when to stop. I think the best thing I read was advice on dealing with your feelings post dx. They said it is like mourning. That one sentence has made more sense to me than anything. It has helped me understand the emotions I have had. Just feel the feelings, they come and go, and they are normal. So many moms on this board talk about what a blessing their child is, we will be there someday too. Good luck to you, big hug
Suzi T Great post Suzi T... That is exactly what you go through...a mourning period, I remember it so vividly, when NIcholas was dx'd...I cried constantly, would go for a walk to clear my head and just stop on someone's stairs and cry my heart out...I'd say the rosary everyday and pray for to be wrong...its was so difficult...and I will not lie, its still hard some days...but there are so many more good days...I swear to you ...those days will come, and its amazing how having special children like ours will make you appreciate the smallest accomplishments with such joy...our children seem to teach us what really matters, they truly are blessings, everyone of them...stay strong and take your time dealing...great job hon! hugs! Ali
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