bronxmom2 Posted March 17, 2009 Report Posted March 17, 2009 I have sworn I would never never try ADHD meds, and in fact I have never accepted ADHD as an explanation for my son's strange behavior. Now I am coming to terms with the fact that the ADHD-stuff will be a big part of PANDAS... I am wondering if anyone here gives ADHD meds to their kids? I hear they make tics worse... I am still totally opposed to ADHD meds, but I sometimes wonder if I'm doing my son a huge disfavor, by not treating a condition which brings him lots of stress. Lately he seems to feel really guilty for behaviors that he cannot stop.
colleenrn Posted March 17, 2009 Report Posted March 17, 2009 The biggest symptom in my son's (6 and 8) PANDAS is ADHD behavior. I did not see this in my daughter. We have not used ADHD meds. I give him Omega3.6.9's and also have used (on and off) Calm Child. BUT, he rsponds most to being on an antibiotic. Colleen
bronxmom2 Posted March 17, 2009 Author Report Posted March 17, 2009 Thanks. Antibiotics works the best in my son too, I guess, but it doesn't totally eliminate the hyperactivity, which is pretty marked, so I am constantly trying to get him to keep his body still, etc. He takes Omegas too. His focus is actually pretty good. It's the constant moving... He's only been on the right antibiotic for about a week and a half, maybe it will get better. I see lots of people here with multiple PANDAS kids, is that the norm? I have a baby-- different father, but I read this is inherited from the mother-- and I'm wondering if I should be worried/careful. Maybe I will not do all the vaccines?
bronxmom2 Posted March 17, 2009 Author Report Posted March 17, 2009 And by the way, Colleen, you must be exhausted with TWO of these little boys.
EAMom Posted March 17, 2009 Report Posted March 17, 2009 Has anyone tried Pine Bark Extract for PANDAS ADHD? http://www.ncbi.nlm.nih.gov/pubmed/16699814 Another article. http://www.nutraingredients-usa.com/Indust...e-ADHD-symptoms It's supposed to also lower dopamine and adrenaline and be an anti-oxident. I should also ad that it is supposed to have some anti-inflammatory effects which sounds good for PANDAS. Here's some general information: http://www.answers.com/topic/pine-bark-extract
michele Posted March 18, 2009 Report Posted March 18, 2009 Yes we are currently using Strattera 10 mg for the attention issues and impulsive behaviors. I don't see a huge difference yet but 10 mg might be a tiny dose. ADHD is a symptom of the PANDAS. I am hoping the ADHD meds bring him the ability to tend better in class and to follow directions and to get his work done. I have also tried Calm child drops http://www.a1supplements.com/Calm-Child-1-Oz.-p-17473.html and 5 HTP and probably some other things over the years. We do use an antibiotic daily and fish oils but I don't see those helping his ADD. Read Dr. Ross Barkley's ADHD article http://www.russellbarkley.org/ He is the ADHD go to guy. It is very tricky when you add meds. Some ADHD meds made my son more anxious, moody and hard for him to sleep. Addreall XR, and Concerta did not work for him. Strattera has been okay to this point and we have been on it for three weeks. It does take a bit longer to work and get into their system and it is not a stimulant. Every child respomds different to meds. They are trial and error. My son is doing a minor echo tic occasionally since the Concerta and he repeats some words and noises. Nothing too pronounced and he can hold it back in school. I notice things much more because I am watching him so closely. Michele I have sworn I would never never try ADHD meds, and in fact I have never accepted ADHD as an explanation for my son's strange behavior. Now I am coming to terms with the fact that the ADHD-stuff will be a big part of PANDAS... I am wondering if anyone here gives ADHD meds to their kids? I hear they make tics worse... I am still totally opposed to ADHD meds, but I sometimes wonder if I'm doing my son a huge disfavor, by not treating a condition which brings him lots of stress. Lately he seems to feel really guilty for behaviors that he cannot stop.
Indigo Posted March 18, 2009 Report Posted March 18, 2009 Yes, we use Tenex or Guanfacine for ADHD. We had to be very careful, though...many of the more recent meds made dd very very angry and even gave her hallucinations.
Dedee Posted March 18, 2009 Report Posted March 18, 2009 When we took our son to see Dr. Murphy she asked lots of questions along the ADHD line. We have not ever had any real issues in that area. Our issues have always been ocd, anxiety, tics, sleeping. Anyway, she said we were really lucky, because a large number of PANDAS children will have the ADHD issue as well which really complicates treatment. She kept telling us how lucky we were. I do feel blessed. We will take what we can get. My son does get fidgety somewhat during flare ups but not really hyper or having attention issues. Anyway, just wanted to say I think this is common and many struggle with the same questions you are asking. Good luck with your decision. Dedee
kim Posted March 18, 2009 Report Posted March 18, 2009 a little more info http://www.primarypsychiatry.com/aspx/arti...x?articleid=561 Selective Serotonin Reuptake Inhibitor-Induced Behavioral Activation in the PANDAS Subtype Tanya K. Murphy, MD, Eric A. Storch, PhD, and Melissa S. Strawser, BA
kim Posted March 19, 2009 Report Posted March 19, 2009 No problem Deedee. It's nice to be able to share some of this stuff since i spend a little time at it, lol
EAMom Posted March 19, 2009 Report Posted March 19, 2009 Yes, Kim...that was our experience. PANDAS kids can be quite sensitive to SSRI's. Our PANDAS dd was on Lexapro (for OCD/anxiety, no ADHD in her case) and ended up with serotonin syndrome which was a major hassle. The confusing thing is that many of the symptoms of serotonin syndrome (defiance, irritability, aggression, dilated pupils) can also be PANDAS symptoms so you may not know what is causing what. Currently our dd is on 10mg (a low dose) of prozac for the PANDAS OCD (along with 250mg/azith). She is tolerating that dose well so we are reluctant to change anything. If your PANDAS kids do end up using psych. drugs I would say do it with extreme caution. Keep the doses low and don't use multiple psych. drugs at once.
bronxmom2 Posted March 19, 2009 Author Report Posted March 19, 2009 So is there some idea that stimulant ADHD meds may somehow "backfire" in PANDAS kids as SSRIs do? Anyway, I'm trying the pine bark extract! Sounds like the fountain of youth, too.
EAMom Posted March 20, 2009 Report Posted March 20, 2009 Hi Bronxmom2...you might also look at this book http://www.amazon.com/Healing-ADD-Breakthr...TF8&s=books by Daniel Amen. Dr. Amen believes there are many kinds of ADD (6 types) and that different meds are effective for the different types. (Per Michele "Every child responds different to meds"...maybe b/c Amen is right and there is more than 1 ADD!) He discusses regular ADHD drugs as well as alternative therapies. (Note: I haven't read his ADD book but have read a couple of his others.) I don't think he discusses PANDAS ADHD (...that may be types 7 and 8!) but you may still gleam some useful bits of information.
michele Posted March 20, 2009 Report Posted March 20, 2009 Did you get the seratonin syndrome diagnosed? That might be what we are seeing now. Big eyes, irritable, moody, angry, defiant, quick temper. I am guessing we should be trying the Prozac low dose which would assist in the compulsive behaviors we are seeing that seem to frustrate him so much when he can't get them met. The neuro wants us to switch from Abilify to Risperdal. I am very cautious about changing again since we have been waiting to see how he does on the Strattera which takes like a month to get into their system. I really don't think I have found a Dr. yet who gets the treatment of this. Maybe Dr. Murphy but she is not here in OH so it helps us little. The psych just keeps changing them freely and frequently. I don't think she is addressing all the symptoms i am describing. It is very confusing because he does have attention issues and tics and obsessions and quick switch temperment issues. So many things to address. Can you give any more advice on Prozac and how it has helped? Does your daughter have tics? Andrew started vocals since ADHD meds were brought on board. Oh to add fuel to the fire, he has been itching in his bottom for a few weeks. I was trying to treat with vasoline and anti itch creams and wipes to clean him well. Today the Physician put him on a worm pill. Poor kid can't get a break! Second time to Dr. this week. School must think I am nuts! Michele Yes, Kim...that was our experience. PANDAS kids can be quite sensitive to SSRI's. Our PANDAS dd was on Lexapro (for OCD/anxiety, no ADHD in her case) and ended up with serotonin syndrome which was a major hassle. The confusing thing is that many of the symptoms of serotonin syndrome (defiance, irritability, aggression, dilated pupils) can also be PANDAS symptoms so you may not know what is causing what. Currently our dd is on 10mg (a low dose) of prozac for the PANDAS OCD (along with 250mg/azith). She is tolerating that dose well so we are reluctant to change anything. If your PANDAS kids do end up using psych. drugs I would say do it with extreme caution. Keep the doses low and don't use multiple psych. drugs at once.
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