back from ucsf

[Guest guest]

We got home a little while ago.I tried to cancel the appointment last week and

the np told me " I think it’s important to

bring Maddy to our clinic next Tuesdayso we can figure out her symptoms and

treat her appropriately " . We met with Dr. G,the np for nsg,a social worker for

nsg and Dr. H (neurologist).

The neurologist basically said she looks good,and if she really had

that much pain she wouldnt be hoping around. Maddy sorta hops around

when she is excited about something. She had just gotten some bubbles

in the waiting room and was distracted by that. He also said she just

need to learn to deal with it,go to school,play outside etc. Maddy is

only 7 years old and shouldnt have to learn to deal. He kept calling

her pain " aches and pains " . They still dont want her on any meds for

pain other then tylenol or motrin 3 doses a week.I told them about her

continued headaches,lower back pain,leg neck pain,and butt pain (new

complaint).

The nsg said they would like to see her to be able to move past this

and attend school etc. I told them right now we are doing home

hospital,because she has alot of pain and is lying down alot. The

neurogist also said she needs to be more active when she is having

pain,not lying down. This is confusing as a few months ago when we were

there,they wanted her to lie down when she was having headaches. I told

them other local nsg (Dr.M) took over Maddy's care and it was going

well. They didnt really answer me when I asked are these still low

pressure headaches. I told them at this time I was more concerned with

her back,leg and neck pain, then her headaches. Dr. G also said I

needed to be honest with them in telling them how I feel about whats

going on. I have always been honest. I never scream and yell at them.

When Maddy was discharged several weeks ago I was frustrated and did

cry (which I NEVER do in front of staff or my kids) and I guess they

are remembering that,which is why social worker was there. He also said

kids pick up on stress and he understand that this must be stressful on

me and asked if I had support and what not. I told him I try to keep

the stress away from Maddy as much as possible so she wont sense it.

They want her to be seen by her pediatrician and neurologist

often,which she is. i got the impression that the neurologist took

control of the whole meeting and it didnt really matter what I said. I

felt I wasnt listened to and maybe if it was just nsg it may have gone

differently. So once again I left feeling very discouraged,but I'm

glad local doc is trying to help. Im just mad I had to rent a

car,parking and spend a ton in gas money to go(money I didnt even

have),they gave me a gas card for on the way back but it didnt even

fill up my tank 1/2 way. I feel they could have called me on the

phone,especially since they didnt even examine Maddy.