Irritability as the main symptoms....what do you give?

[monarchcat]

DS9's primary PANDAS symptom is irritability. Off the charts, pissed at the world kind of irritability. He can be in a good mood but then if one little thing sets him off we go into a big spiral of how his life sucks, he sucks, everyone hates him, he hates everyone, etc. His dad and I get the brunt of this. If something little sets him off (e.g. last night he went from a great mood to hugely irritated because his friend couldn't play anymore after dinner) he immediately starts telling me that he hates me, I'm so stupid, I never let him do anything, I'm the worst mother, he wishes I were dead, etc. He's not shouting and raging, just pissy and... IRRITATED.

 

We have times when he's fine and he's happy and light and funny and kind and compassionate. That's what I believe to be his true nature. I really believe (most) of the chronic malcontent, irritated, pissy stuff stems from PANDAS. We have seen more of the happy side since starting abx, etc, but the irritability always returns or seems to be just under the surface.

 

Advil helps but I don't want to be giving him advil all the time and if I miss my window of opportunity (i.e. *before* he starts getting angry) then it's too late anyway.

 

What supplements (brand, dose, etc) work best for irritability? Does anyone else's child seem to present mostly with extreme irritability? (He has tics, too, but not a lot of OCD)

 

Right now he's on:

 

* Augmentin XR 2000 mg/day

* Multivitamin

* Vitamin D 2000 iu

* Probiotic (approx. 200 billion cfu from Custom Probiotics)

[dcmom]

YES! We get irritibility. For my younger dd it is her tell tale first to appear and last to go away symptom. She also gets irritible as her main symptom when exposed to strep. We have had good success with a steroid burst- don't know where you stand on that...

[colleenrn]

I definitely see irritability as one of my children's main symptoms.

 

Colleen

[Pandas_chicago]

My son had irritability huge – he would go into full on melt downs out of the blue over the smallest of things, Know one was out of his target zone – unfortunately for us, alongside the separation anxiety, after IVIG this seems to linger longer – it has resolved now.

Exercise seemed to help, when he was in a rage I made him run stairs in the house – I would start with five sets, if he was still angry, five more…this tired him and he would eventually mellow out.

It wasn’t an option – I’m bigger than him and sometimes I had to stand right behind him on ever step …but we did it…it made him physically tired….which helped with the rages.

[amy s]

My son had irritability huge – he would go into full on melt downs out of the blue over the smallest of things, Know one was out of his target zone – unfortunately for us, alongside the separation anxiety, after IVIG this seems to linger longer – it has resolved now.

Exercise seemed to help, when he was in a rage I made him run stairs in the house – I would start with five sets, if he was still angry, five more…this tired him and he would eventually mellow out.

It wasn’t an option – I’m bigger than him and sometimes I had to stand right behind him on ever step …but we did it…it made him physically tired….which helped with the rages.

 

 

 

My child had random irritability. I don't know what would help. Sometimes epsom salt baths were calming, if we could get her to take it. But of course the effect was temporary. Really, the only thing that REALLY helped my dd was IVIg. She just continued to get worse, and worse and worse until she had the IVIg. Monachat, has your child had IVIg yet?

 

When my dd would rage, I weighed approximately 100 pounds more than her and there is NO WAY we could do that exercise stuff, just because of the quality of her rages. Her rages at times required 3 people to hold her, for everyone's safety. Even attempting to be near stairs might have been a deadly accident waiting to happen.

[Suzan]

My dd8 sufferes with this too. I give her L-Theanine (100 mg 2x day) to help calm her and it seems to help. I also used to use these products by Vaxa http://www.amazon.com/Attend-Strategy-Atte...r/dp/B000B8P5E2 The Extress did help but overall the combo helped with her ADHD behavior. This was all pre-pandas diagnosis.

 

Susan

[Pandas_chicago]

My son had irritability huge – he would go into full on melt downs out of the blue over the smallest of things, Know one was out of his target zone – unfortunately for us, alongside the separation anxiety, after IVIG this seems to linger longer – it has resolved now.

Exercise seemed to help, when he was in a rage I made him run stairs in the house – I would start with five sets, if he was still angry, five more…this tired him and he would eventually mellow out.

It wasn’t an option – I’m bigger than him and sometimes I had to stand right behind him on ever step …but we did it…it made him physically tired….which helped with the rages.

 

 

 

My child had random irritability. I don't know what would help. Sometimes epsom salt baths were calming, if we could get her to take it. But of course the effect was temporary. Really, the only thing that REALLY helped my dd was IVIg. She just continued to get worse, and worse and worse until she had the IVIg. Monachat, has your child had IVIg yet?

 

When my dd would rage, I weighed approximately 100 pounds more than her and there is NO WAY we could do that exercise stuff, just because of the quality of her rages. Her rages at times required 3 people to hold her, for everyone's safety. Even attempting to be near stairs might have been a deadly accident waiting to happen.

 

 

 

Right, my son's were residual side effects - his main issue was OCD, so it was never as bad as your experience, that being said - I can see how exercise wouldn't work - it's scary how this disease effects the children all the same, BUT different - it sounds as if your daughter is on her way to recovery though.

[heveritt1]

Ok, so we have been treating my older son 8 for 3.5 years now for PANDAS. He has pretty clear symptoms, a eye tic and ADHD symptons with some others, but the minute he starts blinking we know it is on.

I was hopeing my younger son 4 would not have to go through this nightmare, but he has had months of these severe mood swings that go along with a low grade fever, then it was a sinus infection, now that same nagging ear infection that has never gone away. But the ONLY sympom is his horrible mood. the irritibality, wakes up mad, goes to bed mad, just pissed (like the orginal post said) all the time, expecially when he is with us.

this weekend it changed to depression and he had to pee every 15 minutes. He was depressed, it was totally different, he walked slow, has a sad face, just so sad all weekend so I took him back to the doctor because I figured the ears were not better and the Omnisef was not working.

I was right, still has an ear infection (oh, he has had joint pain for 2 years). But still, his only sympton is mood.

 

They told me, he might have Strep in his ear and the behavoir could be PANDAS! Seriously! How can I have this twice in one house!

 

So, long story, I guess now I have one with irritability as a main sympton. That is so hard, a tic is actually easier to figure out.

[simplygina]

Extreme irritability was probably the first symptom we ever had and remained pretty constant for about 5 years. Just a total lack of coping and flexibility.

 

The first thing I would add is a high quality omega 3 source. My son tolerates fish oil fine and takes 1000 mg 3 times a day. Some people prefer flax seed oil.

 

We noticed that there was an improvement with 25 mg Zoloft. We started it before we knew it was PANDAS. More introduced a whole new spectrum of issues and less we start to see more crabbiness again. If you want to go a more natural route you could try 5 HTP or St. John's Wort. Eventually I'd like to head that direction but for now I'm not messing with what works. Just a little more serotonin could make a big difference.

 

I know different abx work better for each kid, so Augmentin may be the best thing for your son, but for us it never seemed to completely clear the ears or sinuses for my son. In fact his last exacerbation from an ear infection and sinus infection occurred while he was taking 875 mg of Augmentin twice a day. Omnicef made him an emotional disaster that was truly frightening. Switching to Biaxin made a HUGE difference. HUGE! Within 24 hours I noticed a complete mood change and for the most part it has been sustained for the last 3 months. Is it the Biaxin itself or the fact that for once his sinuses seemed to be totally and completely clear? (I didn't realize they weren't clear until they were). Not sure, but when we tried to cut back to a half dose we noticed the moodiness at about day 4 and DS (age 10) asked to go back to the regular full dose. Within 12 hours he told me he felt a whole lot better and he acted better too. We have to switch to Zith at the end of this month to make sure we don't damage his gut and I'm so nervous. I hope it works as well because I feel like I have my sweet boy back. I don't think he has been this easy going and pleasant since he was about 4. When he does get upset now, instead of immediately becoming mean & rotten, he gets sad. I actually think it is an improvement because it seems like he is dealing with the real emotion instead of masking it with anger to feel more in control. It isn't more often than what I would consider normal.

 

Another thing you might want to pay attention to is his blood sugar. Letting DS get hungry is a big mistake. We try to get some protein in him every time he eats (hard because he doesn't like most protein sources and isn't a big eater in general) and make sure he has a good snack every couple of hours. He keeps some snacks in his backpack and I keep some in the car.

 

I totally second the exercise recommendation as well. DS is on a tournament karate team that practices 6-9 hours a week. He is so much nicer when he comes out of karate than when he goes in! And he works HARD! My boys walk to and from school (just under a mile) for the same reason.

 

Sleep is also a really big factor for him. He needs more than most but sleep has always been difficult for him so I still don't think he gets enough. Melatonin has worked wonders helping fall asleep. He takes 3mg every night before bed. When we are good about making sure he gets 10-11 hours each night he does pretty good. If we don't we notice a pervasive dis-satisfaction in him. But, like so many other things, he is beginning to actually recognize his body's needs (seemed to be so oblivious to his own body for so long!) and will go to bed when he is tired. Last night he came home from karate, told us he was tired and his eye was aching a bit, took his pills and went to bed. I wonder when these little things will stop shocking me!

 

Last, but for us anyway, certainly not least, is really watching how much "screen" time he gets. We went 9 months without a TV and only allowed minimal game and computer time. This was pre-Biaxin. It made a really big difference. Something about both TV and games leaves him agitated and defiant (especially if he has been playing any sort of "fighting" type games). We hooked the TV back up for the Olympics and I feel like we are back to square one there. I just need to unplug it and put it away again! Even with all the progress he has made on the abx, we notice if we let him play games for more than about 1/2 an hour a day, we are going to have issues. When he gets a new game he becomes obsessed and stuck. I am just about ready to declare our home a game free zone. I never thought we'd have a game system but let myself get talked into one a few years ago and I regret it BIG TIME! The hard thing is that both he & his brother have used their own money to pay for several of the games as well as their Nintendo DS systems and games, so I struggle with feeling OK about making them sell them at a loss. I should just do it though. They are convinced they will become social outcasts, but not having a TV didn't make our home any less desirable to their friends. No one seemed to really care beyond the initial shock of learning we didn't have TV. I'm sure it would be the same with the games.

 

Anyway, those are some of the things that have worked for us. Good Luck!

[Stephanie2]

I have always been under the impression that the irritability stems in part from the OCD (not being able to play again with his friend does not go along with his obsession with playing???). I don't know...

 

Anyway, my son has the extreme irritability but it has gone away with spironolactone (one week so far). You can check out my recent post regarding this...Also, before that I would use advil when I couldn't take it anymore.

 

My son's doc recommends tryptophan (500 mg am and 500 mg in afternoon) to help increase seretonin levels/decrease OCD, etc...

 

Stephanie

 

DS9's primary PANDAS symptom is irritability. Off the charts, pissed at the world kind of irritability. He can be in a good mood but then if one little thing sets him off we go into a big spiral of how his life sucks, he sucks, everyone hates him, he hates everyone, etc. His dad and I get the brunt of this. If something little sets him off (e.g. last night he went from a great mood to hugely irritated because his friend couldn't play anymore after dinner) he immediately starts telling me that he hates me, I'm so stupid, I never let him do anything, I'm the worst mother, he wishes I were dead, etc. He's not shouting and raging, just pissy and... IRRITATED.

 

We have times when he's fine and he's happy and light and funny and kind and compassionate. That's what I believe to be his true nature. I really believe (most) of the chronic malcontent, irritated, pissy stuff stems from PANDAS. We have seen more of the happy side since starting abx, etc, but the irritability always returns or seems to be just under the surface.

 

Advil helps but I don't want to be giving him advil all the time and if I miss my window of opportunity (i.e. *before* he starts getting angry) then it's too late anyway.

 

What supplements (brand, dose, etc) work best for irritability? Does anyone else's child seem to present mostly with extreme irritability? (He has tics, too, but not a lot of OCD)

 

Right now he's on:

 

* Augmentin XR 2000 mg/day

* Multivitamin

* Vitamin D 2000 iu

* Probiotic (approx. 200 billion cfu from Custom Probiotics)

[dcmom]

Just to add, agreeing with simply gina's post...

 

We have had irritibility, from MAJOR to milder. It REALLY depends on the status of her pandas. When she is healthy we see a really happy easygoing kid- when she is having an uptick in symptoms this carefree attitude disappears

 

sleep

healthy food and lots of healthy snacks

routine

not overbooking our days

me maintaining my calm

lots of down time, playing, watching a movie, reading

artwork

horseback riding

limiting chores and homework on school days (too much is too much)

 

I have REALLY had to change the way I organize our days. We don't do stuff last minute, or on the run. I let homework go in favor of playing outside, or watching a movie if needed. A more healthful, calm, organized way of life helped us get through the rougher (not the roughest) times. Had to take a step back from the extremely active, overbooked life we enjoyed prior to pandas. Limit late nights and exposure to illness if at all possible.

[norcalmom]

Ok, so we have been treating my older son 8 for 3.5 years now for PANDAS. He has pretty clear symptoms, a eye tic and ADHD symptons with some others, but the minute he starts blinking we know it is on.

I was hopeing my younger son 4 would not have to go through this nightmare, but he has had months of these severe mood swings that go along with a low grade fever, then it was a sinus infection, now that same nagging ear infection that has never gone away. But the ONLY sympom is his horrible mood. the irritibality, wakes up mad, goes to bed mad, just pissed (like the orginal post said) all the time, expecially when he is with us.

this weekend it changed to depression and he had to pee every 15 minutes. He was depressed, it was totally different, he walked slow, has a sad face, just so sad all weekend so I took him back to the doctor because I figured the ears were not better and the Omnisef was not working.

I was right, still has an ear infection (oh, he has had joint pain for 2 years). But still, his only sympton is mood.

 

They told me, he might have Strep in his ear and the behavoir could be PANDAS! Seriously! How can I have this twice in one house!

 

So, long story, I guess now I have one with irritability as a main sympton. That is so hard, a tic is actually easier to figure out.

 

YES - for some reason when a kid starts to itc it sets off alarm bells. With the behavioral and mood stuff, it is easier to tell yourself its a phase, or they are quirky, or our dog died three months ago so maybe thats why he is obsessing about death, or maybe this is just his personality...I feel lucky that my son had a tic, I think he would have gone undiagnosed (or mor elikely misdiagnosed) for a lot longer with out it.

[Mary M]

is really watching how much "screen" time he gets.

 

We have discussed the screen time issue at our house as well. Research says you burn fewer calories watching TV than sleeping but the screen time seems to ramp my daughter up too...does anyone know the root cause of this TV/behavior issue?

[EAMom]

Does Ibuprofen help?

 

Mood/irritability/emotional lability was one of our first PANDAS symptoms to show up...and is one of the first to improve with treatment.

[simplygina]

is really watching how much "screen" time he gets.

 

We have discussed the screen time issue at our house as well. Research says you burn fewer calories watching TV than sleeping but the screen time seems to ramp my daughter up too...does anyone know the root cause of this TV/behavior issue?

 

I read that too. That they actually now realize that we can function below our basal metabolic rate, lower than sleeping, which they used to think was as low as it goes. Talk about a negative calorie burn!

 

I've read several different things. One is that the flicker of the screen, especially older TVs is really hard on the brain. There is a documented instance of an episode of Pokemon that caused 750 kids in Japan to all have seizures at once. Something about the frequency of the flashing lights on the screen. Another is that it entrains the brain to focus at whatever wave length the show is, usually kids shows are a really fast nervous pace, so that is the way the brain reacts as well. And for many kids, the whole switching gears thing is hard so asking them to turn it off starts a battle. I don't notice the same issues when we watch a DVD, though I do if it is something they've seen a million times.

 

All I really know is that my kids are nicer to me and each other, less aggressive and argumentative and get tons more exercise when we have the TV put away. And far more creative too. It is just a brain suck. Plus I hate the idea of someone else's agenda being fed into our brains with no input from us. I haven't been able to sit down and watch much TV beyond the occasional PBS show or TV special (and I will admit I do like The Amazing Race, though I barely ever remember to watch it) for the past couple of years. I am painfully aware that I am wasting minutes of my life that I will never get back. Obviously, I'm not a fan of TV can you tell?

 

When we got rid of it last Spring, the kids literally shrugged when I told them it was gone and went out to play. I felt like I was in the Twilight Zone because I had expected such a battle. I would highly recommend doing it in the Spring (like now) if you have ever thought about it. By Winter they were totally used to it. It was DH that went through major withdrawal and would throw a fit from time to time if he was missing some sport event. We got it back for the Olympics (which we both felt were something we enjoyed doing with our family's as children). Now that we have it again, he is the one constantly saying we need to put it away again. I wish we were better at moderation but I'm not very good at remembering to tell them to turn it off. It is just easier not to have to worry about policing it at all. Actually my PANDAS son watches far less TV than his younger brother. He would much rather read. His issue is the games. But the younger one could be a total TV junkie if I let him.

 

This has inspired me. I think I am just going to unplug it tonight after they go to bed and that will be that.