Defiant issues with my son...

[patty]

In general my son is a well behave child, sensitive and mild manner and more of an introvert, not particularly friendly with other kids unless he really knows you. He does not cause any trouble and have no behavior issues in school, and teachers always comment that he is mature for his age.

 

However, when we are at home. He is the glass half empty. He holds on to negative thoughts and makes negative comments. Worse of all, he is oppositional and defiant. For example, if i am disciplining him about his bad behavior, he would talk back and say he is not and go on and accuse me of being bad and start arguing. He also likes to say things to embarrass you and laugh about it. I know kids can be naughty and negative at times, but for him is most of the times. For example, he remembers bad things some kid did to him a year or so ago and still talks about it. He is always complaining about how kids in his class are not nice to him. And i think is because his preception is distorted and hypersensitive. For example, if someone run by and accidentally bum him w/o saying sorry. My son would say he is so rude and be upset by it.

 

My son has sensory issues, so i am not sure if this defiant issues is related to sensory or tics, as these neurological issues are comorbid conditions.

 

Can anyone relate and what can i do about it? He is just overbearing to be with at times. I've been working on positive reinforcements, have him write about things he is grateful for and things he likes about a particular person when he start to say bad things about that person, and he is still the glass half empty!

 

Pat

[EAMom]

Is the defiance a new thing? My dd became much much more defiant and negative when she had PANDAS. Wouldn't hurt to do throat cultures (get 48 hour if rapid is neg)? Maybe titers but take with a grain of salt...good evidence of strep infection if high, but not all kids with strep get elevated titers (mine didn't).

[Pudgeo]

I agree with EAMOM..could there be any viral/bacterial connection? My used to be soo happy and had alot of friends and then after PANDAS...what a change..doesn't want to play with anyone and he's grumpy and moody.

Does he get any supplements? add 5-HTP/inositol/ NAC/co-Q-10/omega-3's ...or any type of brain boosting type supp?

Unfortunately I am now resorting to meds for my son...I've been waiting too long..

Your son may need small dose of anti-depressant or mood stabilizer? My son get great on depakote but he an allergic reaction to it and we had to stop..Sarah

[michele]

Is he PANDAS? My son is PANDAS and he has sensory issues also and he is defiant too. If I say yes he says no. Once he gets his meds in the morning (abilify) he improves but until then he is opposite on all issues and refuses to listen and cooperate and hates everything. If he wants something(toy) and I say no he will throw a fit that lasts for what seems like forever. He cries like a baby. Also he has little behavior issues at school just minor attention/focus trouble. He tends to be compulsive about his marked likes and maybe his defiance is a way to feel in control. I really get worried about his anger though. He can get somad he hits his head on things and throws things or hits. We ae seeking counseling at how to deal with theses difficult behaviors.

 

MICHELE

In general my son is a well behave child, sensitive and mild manner and more of an introvert, not particularly friendly with other kids unless he really knows you. He does not cause any trouble and have no behavior issues in school, and teachers always comment that he is mature for his age.

 

However, when we are at home. He is the glass half empty. He holds on to negative thoughts and makes negative comments. Worse of all, he is oppositional and defiant. For example, if i am disciplining him about his bad behavior, he would talk back and say he is not and go on and accuse me of being bad and start arguing. He also likes to say things to embarrass you and laugh about it. I know kids can be naughty and negative at times, but for him is most of the times. For example, he remembers bad things some kid did to him a year or so ago and still talks about it. He is always complaining about how kids in his class are not nice to him. And i think is because his preception is distorted and hypersensitive. For example, if someone run by and accidentally bum him w/o saying sorry. My son would say he is so rude and be upset by it.

 

My son has sensory issues, so i am not sure if this defiant issues is related to sensory or tics, as these neurological issues are comorbid conditions.

 

Can anyone relate and what can i do about it? He is just overbearing to be with at times. I've been working on positive reinforcements, have him write about things he is grateful for and things he likes about a particular person when he start to say bad things about that person, and he is still the glass half empty!

 

Pat

[emma1]

Patty, I don't really have answers, and perhaps this is a cop-out, but. . .

 

This PANDAS is tough stuff! My daughter is old enough to tell me how she feels. She doesn't talk about it often, but when she does, I do realize how hard it is for her at times to hold it all together -- the focus, ignoring the ocd, trying to feel "normal" when sometimes she doesn't feel that way, etc.

 

Sometimes I think that they have to work so hard to pay attention in class, get their work done, be kind to their friends, excel in their extracurriculars, etc., that by the time they get home there just isn't much left some days. So, we end up getting a "glass half empty child" at home.

 

I don't know what to do about it exactly. I have tried to set my priorities. For instance, I want her to do well in school, so skipping homework is not an option. But, maybe she doesn't have to keep her room the way I'd like it, and if her week is stressful, I'll try to do whatever I can to keep my demands on her to a minimum and help her out where I can. I have found that when I start looking at it from her perspective, I act differently, and then (surprisingly) she begins to act differently.

 

But, she is older. I would imagine the whole thing is even more frustrating and confusing and difficult for a younger child.

 

Hang in there!

[EAMom]

Re sensory issues...

 

Before PANDAS I would say my daughter had mild sensory defensiveness (some clothing issues etc.) and mild social anxiety. She was basically a happy kid, shy with most adults, friendly towards other kids. Once she got PANDAS "mild" became "severe" on both accounts (in addition to the defiance and other issues). The Azithromycin has been a lifesaver (on it since June.) Dd is also on 10mg prozac/daily.

 

Re social anxiety, I would say she might even be a little better than pre-pandas...I think the prozac is helping with that and also acting as a safeguard against OCD/eating disorder if she should get strep again. I would say she's a bit more cheerful on Prozac ...maybe just because she's less anxious overall? Anyway, I agree with Sarah (Pudgeo) that an anti-depressant is worth considering.

 

I understand that OT's deal with sensory issues...so that's another route to consider.

[Chemar]

I know this might make some upset, but I cannot in good conscience not mention what an SSRI antidepressant like prozac (Luvox) did to my son when he was 11yo.

 

But

I also need to stress that, as far as we were told by Dr Murphy at Shands, my son was not PANDAS .....

and I recognize that the OCD etc he has is intricately associated with his genetic Tourette Syndrome, and so likely in a very different category from that associated with PANDAS, which may be the reason he had a bad reaction to the med where others here are decribing good results. He had also initially been on a combination of haldol and luvox, and I know that combo also likely had a large part in things, but he did also have a period on only luvox, which was in a word horrible

 

The SSRI did not help his OCD/anxiety/explosive issues, but made them far worse, including inducing some psychosis.

It also "zombied" him, took away his unique personality and wonderful sense of humor, and dulled his musical and artistic talents.

 

I remember the relief and joy I felt when we were in the process of weaning him off, and I saw the gleam return to his eyes and knew I was getting my son back.

 

we have been thru many ups and downs with his health since (he is now 18), but he and we would not ever go the anti depressant route again

 

Please know that I am not just "anti medication" .....

but I do always urge great caution to anyone considering SSRIs, especially with all the current FDA warnings about their use in kids.

Check out the side effects very carefully and whether enough, if any, studies have been done on their use in children, and especially on the longterm negative effects that even short term use can have on a child's developing brain

 

I know that living with a child who is suffering OCD/anxiety/rage/defiance etc is serious and that for many these meds do seem to help and I am thankful for that

 

But there are also many of us who have found great help from other sources with less or no side effects. My son has just been thru an intense OCD flare, and we have been able to bring things under control again with supplements and acupuncture etc

 

My purpose for sharing all this is to just suggest to those reading here to please not just see a prescription med as being the "fix" before you fully educate yourself on what it may break too. ...

and again to those who are finding relief with them, I say congrats and may things continue to get even better

Patty, I especially hope you find the right treatments to help your lil dude with all this

[Pudgeo]

I hope I didn't mislead you by my comment on anti-depressants..

I guess what I've learned on this journey is no 2 kids are the same and everyone has to try different things..

I wish so much my son would have responded to bio-med & IVIG but after 6 months NO improvement..

I will keep up the basic supplements(omega-3, good multi-vitamin, zinc, a few others..) but I am hoping 3-D brain scan next week will really tune us into what kind of med we need....my son did horribly on anti-depressants..made him crazier!

good luck...Sarah

[patty]

Thank you all for responding and with great advice.

 

At this point, things are hard at times, but it is tolerable, so i am not considering med at this time, as i think it may add another layer of issue to my son's immune & nervous system. I was hoping to see what others are doing using alternative modalities, and find insight in sensory issues that may link to his defiance issues. I am hoping with behavior modification and maturity that he can be the glass half full.

 

My emphasis has always been aimed at my son's overall being as a way of treating his tics and not so much at treating the tics itself. I think by getting to the core issue, it will bring his body in balance and will help with his tics.

 

Pat

[Chemar]

Patty

have you done testing for microbes/parasites?

 

it was very interesting this past time with my son's OCD/anxiety/phobic flare that we started seeing much improvement after upping his supps for these and he had an intensive acupuncture/biofeedback etc session.....

 

but we also decided to increase monolaurin, olive leaf extract and the candida clear and saw an even more rapid decline in the troublesome symptoms (tho as expected we had a slight spike too....likely die off reaction)

 

I know many things had been at work causing this flare up for my son but his response to these natural antibiotics clearly indicates a bacterial or viral or fungal or protozoan etc connection to us as well. I cant do blood tests on him yet as he is majorly phobic on that still, but the therapist has done biofeedback and detox to cover as many possible infections now too

 

I have always felt there is a PITANDS component to my son's TS and am more convinced than ever now

 

not sure if this may help but maybe part of that "whole picture" I know you are searching for

[patty]

Thx Chemar for your input. What you are suggesting is the next area that i am thinking of exploring, along with strep and other bacteria.

 

Pat

[Dedee]

Just tought I would had my 2 cents worth on the topic of SSRI's. My son did take them a few years back when his OCD first began. He was extremely dysfunctional and didn't eat for almost three days (fear of contamination). His behavior and fears were completely depelatating (sp?). So we did start him on Zoloft to get him through the acute stage. He ended up taking them for almost three years as he would continue to have flare ups of OCD when he would have a recurrent strep infection. It wasn't until we had his tonsils removed and discovered the correlation of antibiotics to symptom remission that we decided to seek other treatment. Since he has been on daily amoxicillin we have been able to wean off the SSRI very gradually and he is doing beautifully. I hated that he had to be on it for so long, but he did respond very well to it. I think however, he would have done just as well or better on daily antibiotics. Treatment for PANDAS children is very individualized and sometimes you have to do extreme things temporarily to keep things functional until a better option presents itself. I now have a second son who is showing definate OCD symptoms, though not extreme. I know that if I took him to a professional they would suggest an SSRI, which is exactly why I haven't yet. I am going to try some supplements and hold off if at all possible. However, he is not really severe and he remains very functional and continues to thrive. (Just drives the family crazy) So, we do different things in different situations depending on what we think is best for our children. I hope you find peace in what ever you choose to do and I hope your son shows improvement soon. Good Luck!

 

Dedee

[EAMom]

SSRI's are tricky...I wouldn't completely discount them because they do really help a lot of people (some people really do have chemical imbalances in their brains that the SSRI's help with). Every person is an individual and I hate to make blanket statements in either direction..."SSRI's are evil" or "SSRI's are wonderful." If you do use them, they need to be approached with caution and I would recommend starting low and going up very very slowly and working with a psychiatrist who actually knows what they are doing. This can be easier said than done due to the shortage of child psychiatrists in this country. (I did read one paper that suggested that PANDAS kids are more sensitive to SSRI's and need lower doses.)

 

My dd also had problems with the first SSRI (lexapro) she was on. She was put on it in the hospital (malnutrition, rapid onset anorexia nervosa, depression, suicidal statements, positive strep throat culture). I will give the Lexapro credit in that it helped with the anorexia (which in my mind was the paramount problem at the time). We took her off the Lexapro after about 6 weeks because it was apparent that the Lexapro was causing problems (akathesia/"inner restlessness", aggressive behavior, possible seratonin syndrome). Our original intent was to take her off of SSRI's completely. Unfortunately, when we stopped the Lexapro her anorexia returned in full force. When your already underweight 7-year-old daughter eats only 2 pieces of bread per 24 hour period for days on end that is a very scary thing...thus we started her on a low dose of prozac which blunted this rapid weight decline.

 

Fortunately, dd tolerated Prozac (no side effects like the lexapro, and we kept the dose low) and we eventually discoverd Azithromycin which put the PANDAS in remission. We're not taking her off the Prozac for now for several reasons

1) she is tolerating it well

2) she has less social anxiety...for instance she is talking to her teacher the first week of school. Normally, it takes her 3 mo. before she will work up the courage to participate/speak up in class. Her quality of life seems better on this drug as she is less anxious about things.

3) if her PANDAS does (for whatever reason) go out of remission (she doesn't tend to show classic strep signs so she could easily get strep without us knowing it) I'm hoping the prozac with "buy us time"/blunt the severity of her symptoms (esp. eating disorder)

4) SSRI's have been shown to prevent relapses of eating disorders once refeeding has occured...I don't know if having PANDAS Anorexia Nerovosa means she might be prone to regular Anorexia Nervosa when she is older?

 

It's interesting that Chemar's doc chose "Luvox" for her son...that one was actually taken off the market for several years. b/c one of the Columbine shooters was on it.

 

Our psychiatrist wonders why the docs in the hospital chose Lexapro initially for dd...as it doesn't have much of a track record with kids (vs. prozac).

[EAMom]

Hi Sarah,

I was wondering if they tried the "steroid burst" on your son before they did the IVIG? Was there any improvement on the steroids if they did?

EAMom

[Dedee]

EAMom,

 

My son took Zoloft initially but after a while he had another strep infection and the Zoloft stopped working even when we increased the dose. His psychiatrist tried Luvox but only short term. It made him even worse than he already was. I find it interesting that it has since been taken off the market. My son responded best to low dose Celexia (though he did gain a little weight). Our child psychiatrist said she has had the most luck with celexia and OCD in children even though it isn't used for it that often. It certainly turned things around for us. However, it is a really good feeling when you can finally get your child off of all that and know they are still doing well. I try to keep my mind open to all possibilities but move forward with caution when it comes to medicating my children. It is a very individualized and personal decision that works out differently for many situations.

 

Dedee