HIV/AIDS Community

Hello,

sorry to hear about your daughter. Your concern is right on target and here's what I would advise:

- schedule her visit asap and GO WITH HER
- have them evaluate her hair loss and test for other causes
- her inability to take care of herself and tics could be HIV affecting her brain or some other infection - they need to investigate this
- demand to speak to a social worker about assistance with her daily living issues. It will be tough for you to handle this by yourself.

You didn't mention if she was on medications or not. If she isn't, I would inquire to the doctor as to why she is not, and really pin them down to explain the overall situation to you. Be active and aggressive with this... she's your daughter and obviously you are concerned, so you deserve answers so you can help her to the best of your abilities.

Hope that all makes sense. Let us know if there's anything else...

David

My daughter has been on medications since shortly after the diagnosis however, there have been times when I can't be sure she was taking her medications as directed. I'm sure she's aware that she can't "play" with her medications but she's very passive aggressive when told what to do (and she's going to be 49). She does continue to work but there was an episode just yesterday that makes her son and I wonder just how much longer that will be possible. This past week she became disoriented and unresponsive a couple times. Once her son found her just sitting in her car after returning from the store. He helped her into the house and gave her Gatorade and cooled her down and she returned to "normal". Yesterday she called him from a concert venue saying she couldn't find her keys and then couldn't tell him where she was. He spent the afternoon and night trying to find her. After finally locating her car, he called the closest hospital to learn that she had been taken there. He went to see her and she couldn't remember how she got there. The doctor on site told him that her blood pressure was very low. They had her in ICU but told him that she would be okay. He gave them some history and hopefully they will do tests to help us determine just what is going on since the itching, tics and disorientation have just started occuring. I'm hopeful her regular doctor will be able to recommend a dentist to get her teeth extracted and that problem or infection resolved. Don't really know what else to do except take over her life to get her back on track.

Thank you for replying.

Hello,

thanks for the update, and yes this all sounds very concerning. Know that sometimes HIV can cause a form of dementia, usually when someone isn't on medications but can happen when they are as well. It can cause forgetfulness and disorientation, things of that nature. From the sound of it, she may also have an infection in her blood, and the doctors should do a spinal tap on her to make sure there is no infection in her brain as well...

And yes, you will have to fight her on this, and if the infection is causing the tics, confusion, etc, it may not be all her, but an exaggerated version of her based on the HIV. You will need to work closely with the social worker, psychiatrists and her medical team. Demand that the social worker and psychiatrists see her, and ask about the spinal tap. Read up as much as you can about HIV and the brain (just google it) and see if anything fits. Be aggressive about this. Its your daughter, and she may not be making decisions that are in her best interest at the moment.

David

My daughter was released from the hospital last evening and my grandson advised she appeared to be fine and walking steady. The hospital did a battery of testing and could find nothing wrong. This morning she tried to get up to go to work and fell on her front porch and didn't have the strength to get up. A neighbor came over to help her back into the house. Another neighbor came over and checked her blood pressure and said it was low. Her son told her to rest at home for the remainder of the week but she's worried about money to pay her bills although she has sick days through her job. I plan to call her later and find out when her doctor appointments are so I can attend with her. Her son doesn't think she is eating. But her teeth are horrible and probably make eating next to impossible. Playing a part in all of this is the fact that her son (now 23) has finally moved into an apartment with his family and it leaves my daughter alone for the first time in her life. While she says she will enjoy having the house to herself, she has never lived alone - ever. It can be scary I know. It happened to me when my husband passed away.

Finally talked to my daughter after her release from the hospitsl - usually she doesn't answer the phone if she knows she's in trouble. Found out that she's been messing around with her medications because she has an issue with Medco. I told her she could use any pharmacy she wanted and that should not have kept her from following her medication routine or doctor's orders. She also confessed she hasn't been to see her doctor in a year. She has "orders" to call and get an appointment for blood work and to see the doctor ASAP. My next question is: would her doctor be able to recommend a dentist that works with AIDS patients? She needs one badly!

Hello,

sorry for the late response to your question. If she lived in ATL, I would know exactly who to send her to, but if she doesn't, let me know where you guys live and I'll ask our local dentist, who is amazing, if there's a list of dentist who are experienced with HIV care - he'll know who to refer you to.

I'll follow up tomorrow.

David

My daughter lives in west Tampa.

Ok,

There's a website called HIVdent that may have some information to help you. Here is the website, look through it and see if it can help: http://www.hivdent.org/ .

you also may want to try with Tampa General Hospital to see if they have some HIV services or consult with her primary care doctor to see who they send people to for oral healthcare.

Happy mother's day to you... I know this is difficult and I hope it gets better for you and your daughter.

David