Advice

[missjo]

My 21 year old daughter was diagnosed with PANDAS in 2010 by DR. T although I have known for 10 years that is what she had, but none of her doctors would listen to me. My problem is she will not stick to any of the treatments. She will start taking antibiotics for a few days and then stops because she says its not working. She also has very low Feretin and will buy the iron and then dosent take it. She was on meds most of her life for ocd,anxiety, motor tics, ADD, etc. and I always made her take it until she was 18. Wished I had known then that those meds were not what she needed but i was following the doctors orders. She says she took meds all of her life and now she hates taking them. She complains about the anxiety, OCD and tics but isnt willing to do anything about it. She has had PANDAS since the age of two so she dosent know that she can feel better, this is what is normal to her. She is in the medical field so logically she knows its not normal but still lacks motivation to stick to treatment. I am scared that if she dosent get treatment now the damage will be permanent (if it isnt already). I cant spend anymore money taking her to other doctors when she will not take the meds. She lives on her own which makes it even harder. She has ask me a few times to go with her to her doctor, I go with her and explain her PANDAS. The doctor is great he will give her what ever I tell him she needs (OUR 16 YO with PANDAS goes to doctor L so I know the protocol to ask for). Just when I think she may be motivated enough to take her meds she stops taking them again. The normal waxing and waning of symptoms she had growing is becoming more constant symptoms now. She works in an EMT in an ER so she is with very sick people every day and seems to always catch something. I do think if she could get IV antibiotics she would stick with that (she would think thats cool, she loves all the medical stuff) but I dont know how we would get that prescribed or insurance to pay for it. I think she would do IVIG (because that would be cool too) if her insurance would pay for it.

 

Sorry for the rambling. Any advice would be great.

[dcmom]

Miss Jo-

 

Has your older daughter seen Dr L. I think she has a great "bedside manner", and might be able to talk with your daughter- and offer her some good advice. Dr L is a mom of young adult kids, and I have always felt she has the "mom instinct" when talking to my kids, which gives her an edge over the other docs.

 

Certainly a course of antibiotics could be helpful, but if this has gone on so long, she might need something more- maybe she would react well to steroids....

 

I wonder and worry how this will work with my kids when they get older- now, I have control over their medical care.

 

Does she see a therapist for ERP? I would think this would be key. After suffering so long, I think she would need therapy for "stuck" behaviors.

 

I really feel for your situation.....

 

Eileen

[NancyD]

This is the part I worry most about as my DD approaches adulthood. Will she take her abx and supplements as needed to stay healthy? I second what Eileen suggests for all the same reasons. Dr. L would do a great job talking with her. She is very compassionate and has a great bedside manner. Another thought is to connect her with a person her age (perhaps on this forum?) who may be able to get through to her. Often, our kids will listen to anyone other than Mom! Also, have you ruled out Lyme, other co-infections, KPU, etc. that may be preventing her from staying in remission? Especially if she is in the medical field surrounded by people who are sick she needs to take protection with abx.

[tpotter]

My 21 year old daughter was diagnosed with PANDAS in 2010 by DR. T although I have known for 10 years that is what she had, but none of her doctors would listen to me. My problem is she will not stick to any of the treatments. She will start taking antibiotics for a few days and then stops because she says its not working. She also has very low Feretin and will buy the iron and then dosent take it. She was on meds most of her life for ocd,anxiety, motor tics, ADD, etc. and I always made her take it until she was 18. Wished I had known then that those meds were not what she needed but i was following the doctors orders. She says she took meds all of her life and now she hates taking them. She complains about the anxiety, OCD and tics but isnt willing to do anything about it. She has had PANDAS since the age of two so she dosent know that she can feel better, this is what is normal to her. She is in the medical field so logically she knows its not normal but still lacks motivation to stick to treatment. I am scared that if she dosent get treatment now the damage will be permanent (if it isnt already). I cant spend anymore money taking her to other doctors when she will not take the meds. She lives on her own which makes it even harder. She has ask me a few times to go with her to her doctor, I go with her and explain her PANDAS. The doctor is great he will give her what ever I tell him she needs (OUR 16 YO with PANDAS goes to doctor L so I know the protocol to ask for). Just when I think she may be motivated enough to take her meds she stops taking them again. The normal waxing and waning of symptoms she had growing is becoming more constant symptoms now. She works in an EMT in an ER so she is with very sick people every day and seems to always catch something. I do think if she could get IV antibiotics she would stick with that (she would think thats cool, she loves all the medical stuff) but I dont know how we would get that prescribed or insurance to pay for it. I think she would do IVIG (because that would be cool too) if her insurance would pay for it.

 

Sorry for the rambling. Any advice would be great.

 

 

OMG...that's the same problem I'm now having with my DS18...he wants to feel better, knows he can, but own't stick with the meds (and/or picks and chooses, but although knowing it can make him worse, doesn't consistently take his meds.) He lives at home, (would love to get out on his own), but that only mildly helps. We had a huge battle about it this a.m....I told him I'm tired of spending all the money and time getting him tx for him to only stop doing it.