Containing the angry outbursts

[friend323]

Does anyone have any suggestions on how to contain the angry and frustrated outbursts that occur as a result of the Pandas/OCD? My friend's 9 year old son was diagnosed with PANDAS/OCD a few months ago and he is really struggling with anger and frustration. He is usually such a sweet, sensitive kid but is now prone to such explosive outbursts: hitting, cursing, screaming, crying. He is seeing a neurologist and the family is working with a qualified CBT but I thought that maybe you guys might have some advice from 'the trenches'. I am so limited on how to try to help my friend, so any advice you can offer would be greatly appreciated.

 

Thanks

[myrose]

With not knowing how far she wants to take this: diet, supplements etc. It would be hard to suggest for me. I am still learning how everything works together. I am sure you will receive lotd of replies here. They are all so great on here. Its been a godsend for me! (This board and people)

 

Something not so involved would maybe just to start him on the natural calm or kids calm?

 

We have had much luck with this in calmness and now seeing a decrease in tics after chlorine exposure. Its quite cheap and something she can do immediately and also hopefully see some results quickly until she can get through all the docs and such.

I wish her the best and BOY what a friend you must be to try and help her this way! Everyone needs more friends like you!

 

I wish her and her son the best success no matter which route that decide on.

[friend323]

Thanks so much for the suggestion, I will definitely pass that along. Anything that might help is worth exploring. I have another question. My friend's son doesn't have Tourettes, dealing with Pandas/OCD. Do you or anyone else know if chlorine might cause an increase in symptoms dealing with that? I know he is still planning on attending summer camp and didnt' know if that is something I should pass along to watch out for.

 

Thanks for your kind words, but I assure you that I am no greater friend to her than she has always been to me.

[michele]

The only thing that we have found that has really improved his mood swings and anger and fixed his attention problems is an anti psychotic drug called Abilify. It isa small dose 2 mg. but it is remarkable that he is so changed! He can sit still and concentrate in school( he is 6) and he isn't mean anymore. He handles disappointments so much better it is remarkable. Things he used to dwell on and have melt downs over seem to pass by quickly now. We have no tics at the time either. He used to do alot of repeat cracking of his joints. He doesn't have the compulsion urge to pee anymore either. It is the best thing we have ever done. He has no side effects from it at this time. I know they don't recommend drugs (natural) here but for this PANDAS I think you have to treat these symptoms with some drugs (antibiotics and mood altering drugs) because their brain is inflammed from the attack on the basal ganglia. I didn't want this mood disorder to ruin my son's life. It can cost them friendships and effect their ability to do well in school. The ADD and emotional issues and obsessions are mush harder to deal with then the tics. You are an amazing friend. I wish I had someone who would take the time to understand my son's disorder.

 

Michele

Thanks so much for the suggestion, I will definitely pass that along. Anything that might help is worth exploring. I have another question. My friend's son doesn't have Tourettes, dealing with Pandas/OCD. Do you or anyone else know if chlorine might cause an increase in symptoms dealing with that? I know he is still planning on attending summer camp and didnt' know if that is something I should pass along to watch out for.

 

Thanks for your kind words, but I assure you that I am no greater friend to her than she has always been to me.

[Chemar]

Hi Friend

although I am not a PANDAS parent, I can see from the many posts here on it that it seems PANDAS kids do have different issues with the mood swings/OCD/explosive behaviour than kids with TS so I am not sure if the magnesium from the natural calm would be helpful or not in this case. As Michele has explained, PANDAS kids have neurological inflammation and so that is something to consider. I think Natural Calm (which is basically an expensive ionic form of inexpensive plain old magnesium citrate) helps kids with TS because of magnesium's beneficial neuro-muscular properties, but the mood issues associated with PANDAS are related to different mechanisms

 

re the Abilify, I have heard good and bad about it and our admin, Sheila Rogers, did once post an alert on it related to FDA warnings, so I am just posting it here just as an FYI

http://www.latitudes.org/forums/index.php?...post&p=7486

[friend323]

Thank you both for the information and the subsequent warning. I will pass both along to my friend. I really appreciate the advice and information.

[myrose]

Just curious if he is on antiobiotics for the Pandas diagnosis?? And also how he was diagnosed with Pandas... (blood tests)?

[friend323]

As far as I know he is on zithromax and zoloft, though it is possible that they may have moved on to other things. I know they took him to see his pediatrician, and a neurologist at NYU. He had a series of blood tests that concluded it was PANDAS. Once they received the diagnosis, they went around and met with several different neurologists and cognitive behavioral therapists and then settled on the two that they felt the most comfortable with.

[michele]

He was diagnosed by Dr. Tanya Murphy at Florida Shands. He is on antibiotics for the PANDAS/antibody cross reaction. 1 tsp of omnisef once a day. It has kept him strep free for almost a year. She did recommend the mood altering meds for further down the line when the ADD and emotional issues worsened. It is the recommended treatment ofpsychiatrist for PANDAS. She was very informative but can't treat with my son with meds because we are out of state. Our neurologist prescribed the meds at our last visit in March. He is an excellent neurologist and deals only with tics and tourettes. Abilify is one of the best tic meds out there right now. It is an off label use. He has had good success with his tic patients using it. It doesn't work for everyone but we have seen big improvements on it. We started seeing this neurologist five years age. It was not until my son was in school and the tics, behaviors and ADD and obsessions were affecting his performance at school that we tried meds. I did the natural approach for a year it just wasn't helping him enough. We did have blood tests and wrote a medical diary detailing every episode and symptoms and times they lasted. PANDAS is hard to diagnose and treat. I pray down the road it will be accepted in medical books and a suggested treatment will be defined. To me it is like rheumatic fever or sydenhams chorea. The treatment for those illnesses are also very similar.

 

Michele

Just curious if he is on antiobiotics for the Pandas diagnosis?? And also how he was diagnosed with Pandas... (blood tests)?

[michele]

He was diagnosed by Dr. Tanya Murphy at Florida Shands. He is on antibiotics for the PANDAS/antibody cross reaction. 1 tsp of omnisef once a day. It has kept him strep free for almost a year. She did recommend the mood altering meds for further down the line when the ADD and emotional issues worsened. It is the recommended treatment ofpsychiatrist for PANDAS. She was very informative but can't treat with my son with meds because we are out of state. Our neurologist prescribed the meds at our last visit in March. He is an excellent neurologist and deals only with tics and tourettes. Abilify is one of the best tic meds out there right now. It is an off label use. He has had good success with his tic patients using it. It doesn't work for everyone but we have seen big improvements on it. We started seeing this neurologist five years age. It was not until my son was in school and the tics, behaviors and ADD and obsessions were affecting his performance at school that we tried meds. I did the natural approach for a year it just wasn't helping him enough. We did have blood tests and wrote a medical diary detailing every episode and symptoms and times they lasted. PANDAS is hard to diagnose and treat. I pray down the road it will be accepted in medical books and a suggested treatment will be defined. To me it is like rheumatic fever or sydenhams chorea. The treatment for those illnesses are also very similar. http://qjmed.oxfordjournals.org/cgi/conten...l/96/3/183#SEC6

 

Michele

Just curious if he is on antiobiotics for the Pandas diagnosis?? And also how he was diagnosed with Pandas... (blood tests)?