Thursday, January 10, 2008

Geneticist

Our appointment yesterday with the geneticist actually takes place over the television. This keeps us from having to go to Columbia and we can just see the doctor and talk to her without actually being in the room with her. Our appointment was the first one after lunch so we didn't have to wait to be seen. Upon entering, the secretary asked Payton to step on the scale. Immediately Payton started saying "no noise! no noise!". I stepped on the scale and showed her there wouldn't be any noise and although she was still against having to step up there she did it and weighed in at her usual 27 lbs. Once we had the weight she had to get her height and she was worried about the noise that would make as well. Once that was finished we were able to get her calmed down and started talking with the geneticist. The doctor was pleased to hear Payton's speech (the last time we'd seen her Payton was probably only saying a few words) and was shocked how tall Payton was getting (38 inches! I was suprised too!). We began discussing the anxiety and I was explaining to Dr. Miles how in the past I didn't realize how nervous Payton was because she couldn't tell me. But, now that she can talk I realize her poor sleep habits and violent tantrums all stem from anxiety. Yes, Payton obviously misbehaves, but her behavior is entirely different when it's caused by anxiety. She almost goes into a rage, which is quite scary and sad to watch. After much discussion the doctor proceeded to tell me that Payton has a delayed nervous system and that eventually her system will catch up and she will be able to take in and accept the environment around her. But, until then, we need to adjust our environment for her. Therefore, if she can't go to walmart, don't go to walmart (my dad went to walmart once and just tried to listen to see what noise could be bothering Payton and he believes it is the air conditioning/heating system). If Payton can't handle restaurants, then don't go to restaurants. I told her that was fine but Payton now has a younger brother and we are going to have to be able to go places for him. I don't mind her advice, but because she's never been in the situation, I don't think she realizes how secluded it feels. Even some family gatherings that we want to attend, yet have to say no to because it just doesn't work for Payton as far as eating out, attending ballgames, etc. She said Payton would eventually outgrow the anxiety and her nervous system would develop to where she can handle these situations. She also mentioned she thought Payton had an obsession problem to where she tends to obsess about things (baby elephants, windshield wipers, koen's nebulizer, etc.). I don't think I could ever get the doctor to realize that yes, she may be obsessing about it but it's because the noise hurts her ears. Even throughout the appointment there were several times she got real anxious and would say "what's that noise?". The secretary moved her coat and the buttons clanked against the table - it bothered Payton. Someone was talking outside the room, it made Payton nervous. Someone flushed the toilet in the bathroom and Payton gets scared. I don't understand how the doctor couldn't see from just the thirty minutes we were in there that the issue was anxiety. She kept thinking that Payton had adhd and needed medication for that. I disagreed and told her if she was to be on any medication it needed to be anti-anxiety. Therefore, she has decided to send Payton to a child psychologist and go from there. I wish so badly that before a doctor sees my child they would do a little bit of research on williams syndrome before trying to help us.

The afternoon ended well, though. We got to stop by my grandparents (my gpa had just had surgery yesterday morning on his hand and he looked amazingly well!). They can always bring a smile to my face - and Payton ofcourse gets spoiled rotten so she loves it too.

11 comments:

camille said...

Oh my word. I'm furious for you. What in the world is wrong with people? (I have a bit of a chip on my shoulder today so I realize I may be slightly overreacting!) But serious, you are her mother. Anxiety and WS go hand in hand. You know that anxiety is what is bothering her. Why can't you just try anti-anxiety meds and see if it helps. I think you might need to get a second opinion. This is nuts. I'm so sorry.

Every minute counts.... said...

I totally agree with Camille, get a second opinion, the first one seemed to know nothing about WS. And the anxiety thing...we start behavior therapy next month so I'll let you know what becomes of that. I have talked to this therapist several times over the last year and she sees several other kids with WS so I am hopeful that she can help. Let me know what the psychologist says. Call me sometime and we will get together.

Noel

Katie said...

38inches?! Wow, that is officially taller than Jaiden :)
Go Payton!!
I remember J's psychologist telling me that although he is terrified of certain noises if we shelter him from them he will think that there is something to be afraid of and that we will actually be reinforcing the fear.
I was trying to tell her that i thought the noises physically hurt his ears and she wouldnt take it. I also have trouble trying to explain the difference in the behaviour with anxiey and temper sigh...
Go for that 2nd opinion.
Glad your grandpa is doing well :)
xxoo

Penny said...

I am so sorry it wasn't more positive for you. This is just my opinion, so feel free to disregard it, but I just feel compelled to share since both of our kids have so much anxiety. My feeling is that we cannot shelter our children from everything that makes them anxious. before you know it, they will be locked in their room forever. These are everyday sounds and with behavior therapy and perhaps medication, we can help our children get de-sensetized from these noises and obsessions. Keith obsesses too. Especially lawnmowers. Well, we are in Florida and I cannot shelter him from Lawnmowers. Same with sliding doors (like at the grocery store or Target, Wal-Mart, etc.) I can't and won't avoid these places and things. I talk Keith through it. I took pictures of lawnmowers and made him a book and we talked about them when he was calm and he is now de-sensetized. Payton cannot live a good life in a world wothout noise. It's part of life. You can't shelter her, so you have to find ways to help her adjust to her natural environment. It will help her, and your family.

Get another opinion, from someone who does not want to shelter your child, but help her be healthy and happy and feel safe everywhere she goes.

Ok, sorry if I stepped over the line. I hope you don't mind my opinion.

Love ya

Heather said...

It does get better regarding the noises. But the anxiety persists anyway. It just moves on to other things. I sent you back an email yesterday and told you what I think about the geneticist and the upcoming psychologist. You will be better off in his/her care for meds. don't feel bad at all. That is what they are for. Geneticists and regular pediatricians can only do so much when it comes to meds for kids.

Amy said...

Hmmm, I think you should send this info onto the WS clinic in Louisville and ask Dr.Mervis to comment. I would be curious to see what she says. A lot of medical professionals like to bulk our kids into a large group thinking the ALL developmentally delayed kids are the same. I already see it at school, the head sp. ed. teacher asked me a month ago what Avery's DX was...she didn't even read her friggin file?!?!?!?! Nor did anyone pass on the info I printed off for the teachers and aides in the classroom. What I don't think they understand is that the sensitive hearing and anxiety are acutely linked in our kiddos, often causing the add, because the kids can't focus because they are so scared of loud noises. Dumb asses(:
XOXO
Amy

Penny said...

Tara,

To answer your question, he is holding red beads and they were stringing them onto pipe cleaners to work on his fine motor skills

Julie said...

When I went to the seminar they said our kids have 60-70% chance of some anxiety or phobia, not "osession". I wish some of these doctors would do the homework instead of expecting us to know everything. When Noah had his ear infection the Dr and I spent 5 min. looking at his ears and 15 minutes me educating him about ws because he thought another child had it. The sad thing is he knows more about ws than any other pediatrician in my area. It is so frustrating. Glad Payton put a smile on her face later. She is so pretty.

Laura said...

What's wrong with some of these doctors?! So, you were basically told to be a shut-in......ricidulous! And at all realistic for either you or Payton. Would it kill them to actually take the extra 5 minutes to get to know the child they are trying to treat?
I love seeing the pictures of Payton's smiling face, she's just so beautiful!

Nancy said...

Sometimes I think Erik's problems with sounds are the most severe of all. We don't do anything that makes him scream in agony, but I have put him in day care one day a week to be around other kids (he freaks) and avoid situations that cause him pain. Other than that, I cross my fingers and knock wood that an outing won't be awful. I feel your pain. I really do.

Kerry said...

I totally agree with the others, especially Penny. My older son has a peanut allergy and while the situations are different, he has to learn to live in the "real" world like everyone else. (It's not as easy as you may think.) Amy had a good idea about asking Dr Mervis - I would be interested to hear her opinion, you know she has crossed many other WS kids like Payton and may have very helpful advice.

You are so on target with Payton - go with your gut :) You are such a great mom!