Lyme/Bart/Pandas and SSRI

[cobbiemommy]

DS, 13, is slogging his way through Lyme/Bart and Pandas treatment. We are doing allergy shots, antibiotics, IVIG, and he is currently taking an antidepressant (low dose).

 

Dr. J wants him to get to a psychiatrist to get his meds switched. My problem is that we don't have many psych's in our small town and the ones I have seen--yuck. These were all pre-PANDAs and Lyme diagnosis.

 

Pediatrician is willing to change meds, but is a psych a better choice?

 

No ideas at all on which meds to try; previously we tried Prozac and Celexa.

 

Also, to complicate matters, Dr. B wants to taper down off of ADHD meds. He is not on a big dose, but I worry that he won't be able to pay attention or will get in trouble.

 

He is sooooo grumpy and cranky (at least with me). I probably would be too if this were all happening to my body.

 

Any words of wisdom??

 

Cobbie

[LNN]

Sorry - I forget where you're traveling from. But there's this woman http://www.lymefamilies.com/ who's very knowledgeable on lyme. Dr J probably knows her and might be able to ask for her suggestions that he could pass on to your pedi.

 

Do you think he needs an antidepressant or an anti-anxiety med? Tyrosine can help with depression and 5-htp or tryptophan help with anxiety if you're interested in trying a supplement prior to going thru a taper up/taper down scenario on a medication.

 

If you have hesitations about tapering off the adhd meds, listen to your gut. This medical stuff puts the kids' brains thru the wringer and they struggle so hard to keep up in school. If you think you have something on board that's helping, I personally think you'll know when it's time to taper, and it doesn't sound like you feel you're at the point. JMHO.

[momaine]

We were in the exact same boat as you a few months ago. My dd sees the same doctors. Dr. B wants to work toward getting her off unnecesary drugs. (of course I want that too) And Dr. J was feeling that we needed to see a psychiatrist and add in something. I didn't have a psychiatrist for dd and the waiting list is 6 months out in my area. My family doctor was willing to try one of Dr. J's recommendation. (didn't work for my dd) Dd was already on an ssri per our family doctor and seemed like a good fit for her but I didn't know if the other suggestion might help even more. We tried changing to the drug Dr. J suggested with poor results so we went back to the original drug she was on.

 

What it came down to for me, was trusting my gut. I felt my dd was in a place that we could handle without getting a psychiatrist (who likely won't understand the lyme connection) involved. Also, I don't feel she is ready to be weaned off her ssri, like dr. B would like. So, for now, we are sticking where we are at, following that trial.

 

This was my internal struggle. Dd was struggling, so tired of ocd, and I felt I could not live with myself if I didn't feel like I had done everything in my power to make her life easier. (esp. should the unthinkable happen) At the same time, she'd been through much worse and seemed to be every so slowly, improving...so I felt like if we could just get through a couple more months of lyme treatment and get her life a little more stable (her best friend moved, etc) that things would smooth out and she would be okay on the medications she was already on.

 

So, in the end, I did try Dr. J's suggestion which didn't work for my dd. It took another couple weeks on her previous treatment to get back to where she was before we stopped the ssri she was on. (sigh, but you never know till you try) In the end, dd was glad to be back on her old ssri. Things at school smoothed out. Dd made new friends. and just like i had hoped, she turned another corner in her treatment of lyme and really moved forward aftering it seemed like she had been on a plateau for a long time. Thank God!

 

So, good news on our front....moving in a positive direction still, albeit slowly. Dd moved back into her bedroom 2 nights ago. First time since she started herxing after beginning lyme treatment almost 2 years ago. (she's been on the couch for probably 3 out of the last 4 years) It was just too hard to go upstairs with her ocd. Not saying it is easy for her, but I think she feels she is ready to stay in her own room now. We got her a new bed, cleaned up her mess, and she is happy to be there. I am relieved to see progress. So many things to be thankful for.

[aidansmom]

If you noticed that the adhd meds obviously helped with symptoms when you added it in I would think twice before taking him off. Even though it may be the Lyme/bart/pandas that may cause the symptoms if there is a drug that helps with the symptoms while going through treatment it is often worth it. As we know treatments can make lyme symptoms worse so they may need the other drugs to support them through treatment. Tenex did not help Aidan for ADHD - I think a lot of people thought it would but when it had no apparent affect so we took him off with no apparent worsening. Abilify helped him immensely so I will keep that to help him through treatment.

 

The psychotherapist in the link that LLM gave you is a good resource. I spoke to her on the phone and she does phone conferences - perhaps she has recomendations that your ped could follow up on - not sure what she knows about the different medications. I ended up not scheduling a phone conference with her as the abilify pulled us out of the crisis but I know she is there if we get to a low spot again (or if I was having trouble with the school). I was looking for a psychiatrist at the time but thought it would be useless if they were not Lyme literate. I think that would be a dead end.

 

We are blessed to have our neurologist to help with these kind of meds. We don't live near you but I wonder if there is someone like that in your area. She is somewhat knowledgable about PANDAS and accepts the Lyme diagnosis. She is somewhat traditional as far as prescribing meds but she is open minded. She treats a lot on the autism spectrum and has her own practice but does not take insurance as we know some of the best lyme/pandas/ doctors don't. But it sounds like the ped you have is a lot like this willing to help you.

Edited November 7, 2012 by aidan'smom