How do you balance everything?

[browneyesmom]

My 9 year old daughter has been having a lot of disrespect and defiance issues, along with rage-like tantrums pretty often. One of my questions is, how do you handle these?

 

If this were a rare occurance, I think it would be pretty simple to just leave her alone until it passes, but the problem is that sometimes they occur when I am trying to get her to bed for the night at something that resembles a reasonable time... or out the door to church, or to school on time, or get her homework done so I can get her to bed... and I am coming to see that if she gets less sleep, she only has more trouble with all this. It's like a vicious cycle!

 

Also, sometimes she kicks, grabs, pulls, pushes... and says very hateful things.

 

I do recognize that if she does have PANDAS (not yet confirmed, but her symptoms seem very compatible), that her brain is simply not functioning normally right now and my heart breaks for all she is going through. She had one this evening and I told her she could not go to an upcoming birthday party. She yelled that wasn't fair. A little later, she came to me and apologized, said she doesn't know what happens, but that she feels so awkward, but it's hard to tell if that is because she is really sorry or if she wants me to allow her to go to the party. Before this outburst got really bad, she did come into our room and start hitting a pillow, saying that she had negative feelings, but did not know why. I tried to re-direct (maybe that was my mistake, but it was getting late and she needed to get clean and get to sleep) and it just continued to escalate.

 

I am wondering just how much one should ignore the disrespect and defiance type stuff. For those of you who have been through this and are on the other side, how did you handle it and once your kids recovered, did they return to being respectful, obedient, kind and loving again or had they learned how to manipulate and get away with things? I am hearing a lot of challenge from others that she knows what she is doing and needs to be disciplined. While I'm not convinced of that (I believe there is something seriously wrong here, even though it does come and go through the day - usually worse in the evenings), I don't want to create a child who is learning to manipulate either.

 

It seems to me that it might be best to give her space during that time, which I gave up and did tonight, but at the cost of her getting clean. Gosh, I hate these decisions.... it is so difficult to manage bathing in the mornings and I really do not know if I will be able to do it before school. I can see this is so hard on her. She too, is searching for answers as to what is happening to her and why. It seems so confusing to me too.

 

How on earth did you manage to get through with getting homework done AND getting them to bed at a decent hour? This feels so impossible to me almost every night now. At one point, I asked her teacher for her weekly homework in advance, but received no response. I think I will ask again. If we could get some of it done on the weekend ahead of time, I think that might take some pressure off the weeknights... at least it is worth a try. This sure isn't working.

[EAMom]

My dd used to yell at me all the time, it was awful when she used to yell at me at school in front of others...yes it is very difficult to know what to do. I would say the most important thing would be to remain cool and calm yourself (realize this isn't really her, it's the PANDAS). That was the first thing we noticed on the Azith. last June, before the OCD/eating improved, we noticed, "gee, she is yelling at us less" . She did indeed return to being a very sweet loving child.

 

I would also have a conference, face to face, with her teacher ASAP. My dd's teacher last year was so wonderful and understanding. Her teacher this year is a little less "clued in" (other parents agree) but I think if we needed to do less homework we could arrange that. (She's actually one of the "easier" 3rd grade teachers so homework isn't awful.) Hopefully, you can get your dd better before you need to do a formal IEP (a whole 'nother pain!).

 

Also, aside from the emotional issues, lots of PANDAS kids have fine motor issues, ADD, loss of math skills, which make homework all the more difficult.

 

I think in terms of consequences, I would be flexible. (Be aware, I'm definitely not a parenting expert, just my thoughts!) These kids are really going through a hard time emotionally and are not themselves, they really can't control everything they do (your child's basal ganglia is too swelled up!). If the consequence of missing a party (which might also be a disapointment to the birthday child!) is especially upsetting, give your dd an alternative consquence (or try to have a discussion about an appropriate consequence with her when she has calmed down). Perhaps extra chores, no tv/computer (or hand held game if she has one) for a certain time period is something that would be acceptable to everyone.

[browneyesmom]

Thanks so much for your response! I do agree it isn't really her, but her condition. Unfortunately, not everyone agrees with me and thus, are interjecting opinions in the middle of some situations, which makes it much more difficult... more on that at the end...

 

She has 3 regular teachers this year as she is in a pull out class for math as well as an advanced reading class. I did email all three of them as soon as our pediatrician mentioned PANDAS to me. In addition to those, she has several "centers" teachers for computer, art, PE, music, etc.... I really think we need to start homework the weekend before as she has tests on Fridays. I think it would take pressure off the weeknights.

 

Yes, she definitely has experienced a loss of math skills, was being evaluated for ADD, and I certainly think there is perhaps some loss of fine motor control, in addition to confusion over very simple tasks at times, but the other issues are serious enough that it is taking literally hours to complete homework that should really only take about one hour. It usually does not get completed.

 

As for the birthday party, this is someone she just met this year and the time we had her over to our house, we noticed that she had our daughter sort of at her beck and call, while she would wander off, not really playing with my daughter, so I'm not so convinced she's the best influence or friend for her. At some points this year, daughter has articulated the same thing. Also noted that parents did some very odd things and don't feel so comfortable leaving her there. There is another birthday party for another child she has known longer on weekend she is with her father that I would be much more willing to work on having her attend.

 

Because her dad & I are divorced, she has visitation with him every other wknd as well as Tuesday evenings, so she is not here those times. Weeknights are out of the question for anything other than homework, and part of the problem is getting her to follow instructions or do anything helpful right now is generally a major battle. I've tried making lists, walking through it with her, etc. She seems to be bouncing all over the place, physically and emotionally, and talking almost non-stop at times.

 

Yes, it does seem to be best when I simply say to her that this is not helping when she starts getting out of control. It does not stop the tantrum or associated behaviors though. Unfortunately, my husband and my ex-husband are not really convinced it is the PANDAS, which makes managing the situation more difficult as they both seem to disagree with how I am handling it and think I am "coddling" her. I think this is mainly because she has periods of time when she seems ok to them, so they think that she can control it. I feel a bit like I am in a pressure cooker when it comes to this.

 

 

My dd used to yell at me all the time, it was awful when she used to yell at me at school in front of others...yes it is very difficult to know what to do. I would say the most important thing would be to remain cool and calm yourself (realize this isn't really her, it's the PANDAS). That was the first thing we noticed on the Azith. last June, before the OCD/eating improved, we noticed, "gee, she is yelling at us less" . She did indeed return to being a very sweet loving child.

 

I would also have a conference, face to face, with her teacher ASAP. My dd's teacher last year was so wonderful and understanding. Her teacher this year is a little less "clued in" (other parents agree) but I think if we needed to do less homework we could arrange that. (She's actually one of the "easier" 3rd grade teachers so homework isn't awful.) Hopefully, you can get your dd better before you need to do a formal IEP (a whole 'nother pain!).

 

Also, aside from the emotional issues, lots of PANDAS kids have fine motor issues, ADD, loss of math skills, which make homework all the more difficult.

 

I think in terms of consequences, I would be flexible. (Be aware, I'm definitely not a parenting expert, just my thoughts!) These kids are really going through a hard time emotionally and are not themselves, they really can't control everything they do (your child's basal ganglia is too swelled up!). If the consequence of missing a party (which might also be a disapointment to the birthday child!) is especially upsetting, give your dd an alternative consquence (or try to have a discussion about an appropriate consequence with her when she has calmed down). Perhaps extra chores, no tv/computer (or hand held game if she has one) for a certain time period is something that would be acceptable to everyone.

[pmoreno]

My 9 year old daughter has been having a lot of disrespect and defiance issues, along with rage-like tantrums pretty often. One of my questions is, how do you handle these?

 

If this were a rare occurance, I think it would be pretty simple to just leave her alone until it passes, but the problem is that sometimes they occur when I am trying to get her to bed for the night at something that resembles a reasonable time... or out the door to church, or to school on time, or get her homework done so I can get her to bed... and I am coming to see that if she gets less sleep, she only has more trouble with all this. It's like a vicious cycle!

 

Also, sometimes she kicks, grabs, pulls, pushes... and says very hateful things.

 

I do recognize that if she does have PANDAS (not yet confirmed, but her symptoms seem very compatible), that her brain is simply not functioning normally right now and my heart breaks for all she is going through. She had one this evening and I told her she could not go to an upcoming birthday party. She yelled that wasn't fair. A little later, she came to me and apologized, said she doesn't know what happens, but that she feels so awkward, but it's hard to tell if that is because she is really sorry or if she wants me to allow her to go to the party. Before this outburst got really bad, she did come into our room and start hitting a pillow, saying that she had negative feelings, but did not know why. I tried to re-direct (maybe that was my mistake, but it was getting late and she needed to get clean and get to sleep) and it just continued to escalate.

 

I am wondering just how much one should ignore the disrespect and defiance type stuff. For those of you who have been through this and are on the other side, how did you handle it and once your kids recovered, did they return to being respectful, obedient, kind and loving again or had they learned how to manipulate and get away with things? I am hearing a lot of challenge from others that she knows what she is doing and needs to be disciplined. While I'm not convinced of that (I believe there is something seriously wrong here, even though it does come and go through the day - usually worse in the evenings), I don't want to create a child who is learning to manipulate either.

 

It seems to me that it might be best to give her space during that time, which I gave up and did tonight, but at the cost of her getting clean. Gosh, I hate these decisions.... it is so difficult to manage bathing in the mornings and I really do not know if I will be able to do it before school. I can see this is so hard on her. She too, is searching for answers as to what is happening to her and why. It seems so confusing to me too.

 

How on earth did you manage to get through with getting homework done AND getting them to bed at a decent hour? This feels so impossible to me almost every night now. At one point, I asked her teacher for her weekly homework in advance, but received no response. I think I will ask again. If we could get some of it done on the weekend ahead of time, I think that might take some pressure off the weeknights... at least it is worth a try. This sure isn't working.

 

 

 

If your daughter has PANDAS (and even if it's not diagnosed as PANDAS but is having some kind of hyper immune response that causes damage to her neurons) she has ABSOLUTELY no control over her emotions and outbursts. I don't care how much behavior modification you try, how much you punish or threaten to punish - it won't work. There is no manipulation on her part. Her brain doesn't even have the ability to manipulate right now. She apologizes not because she has an ulterior motive, but because when she isn't having an outburst, she is somewhat aware of what she has done and she feels horrible about it. Their guilt is phenomenal and makes them suffer. Many will apologize over and over. But when another moment occurs - they can't draw from past experience to stop from doing it or saying it - it's a compulsion and its almost like having to breathe - you just do it and you can't stop yourself.

 

Having gone through this with Gaby for almost a year and a half now, I see that when she's most severely impaired, the yelling or hateful things come out, then as things improve overall - that behavior does too. Within this 1 1/2 years she has had 3 periods (lasting from one month to 3 months where she was that belligerent). During that time she would scream at me that I didn't love her, that I hated her, that she wanted to die. One time she tried to put her head in the toilet (that was at her worst last year). This last time in January, she tried to go outside the front door without her coat twice and said that she was going away and she wanted to die. Nothing would provoke this - it would be totally random and, therefore, if you tried to be as nice and sweet as possible - it doesn't work either - they will continue with their rage because that's where they're at right then. Don't listen to anybody who tells you to discipline her. It will change nothing and make you feel guilty and make her feel even worse when she's able to realize what she's done.

 

The good news about all this is that it doesn't last forever. As I've said, the worst period for her lasted 3 months - a couple others lasted 1 or 2 months. During these times you just have to resign yourself to the fact that your child will not have normal routines - whether its sleep, schoolwork, etc. You just let her get through the day as best as you can and support her. If she doesn't learn anything right now - that's minor compared to the mental health part of it. Eventually they will catch up again. Some parents who have been through this and whose children are now teenagers have said that once it was over, their child was able to function at their grade level in school again and have normal social relationships also.

 

You have to be very firm with the school - talk to the principal. They have to understand that this is an illness, not a typical behavior problem that can be controlled. Gaby had to have an IEP for this and she went from an independently functioning student to having a few hours outside of the classroom with a teacher consultant to now having an aid with her in the classroom at all times. You just work with them at their level. Gaby's ice skating coach said that during this last period of complete spaciness and repeating phrases over and over, she just let her do whatever she could - which was sometimes just skating around randomly - she couldn't work on any particular moves at all. Her coach said that it doesn't matter - what matters is that she's doing something - she's doing just what she's capable of at that time and you can't place any expectations on them - you just wait. Pat

[browneyesmom]

Thanks Pat... that is exactly where my heart and mind and spirit has been over all of this for the last 6 weeks it has been occurring and it has been very frustrating to be challenged so often by those who do not even have any medical education or experience. I needed to hear that this morning. I'm on my way!

 

 

My 9 year old daughter has been having a lot of disrespect and defiance issues, along with rage-like tantrums pretty often. One of my questions is, how do you handle these?

 

If this were a rare occurance, I think it would be pretty simple to just leave her alone until it passes, but the problem is that sometimes they occur when I am trying to get her to bed for the night at something that resembles a reasonable time... or out the door to church, or to school on time, or get her homework done so I can get her to bed... and I am coming to see that if she gets less sleep, she only has more trouble with all this. It's like a vicious cycle!

 

Also, sometimes she kicks, grabs, pulls, pushes... and says very hateful things.

 

I do recognize that if she does have PANDAS (not yet confirmed, but her symptoms seem very compatible), that her brain is simply not functioning normally right now and my heart breaks for all she is going through. She had one this evening and I told her she could not go to an upcoming birthday party. She yelled that wasn't fair. A little later, she came to me and apologized, said she doesn't know what happens, but that she feels so awkward, but it's hard to tell if that is because she is really sorry or if she wants me to allow her to go to the party. Before this outburst got really bad, she did come into our room and start hitting a pillow, saying that she had negative feelings, but did not know why. I tried to re-direct (maybe that was my mistake, but it was getting late and she needed to get clean and get to sleep) and it just continued to escalate.

 

I am wondering just how much one should ignore the disrespect and defiance type stuff. For those of you who have been through this and are on the other side, how did you handle it and once your kids recovered, did they return to being respectful, obedient, kind and loving again or had they learned how to manipulate and get away with things? I am hearing a lot of challenge from others that she knows what she is doing and needs to be disciplined. While I'm not convinced of that (I believe there is something seriously wrong here, even though it does come and go through the day - usually worse in the evenings), I don't want to create a child who is learning to manipulate either.

 

It seems to me that it might be best to give her space during that time, which I gave up and did tonight, but at the cost of her getting clean. Gosh, I hate these decisions.... it is so difficult to manage bathing in the mornings and I really do not know if I will be able to do it before school. I can see this is so hard on her. She too, is searching for answers as to what is happening to her and why. It seems so confusing to me too.

 

How on earth did you manage to get through with getting homework done AND getting them to bed at a decent hour? This feels so impossible to me almost every night now. At one point, I asked her teacher for her weekly homework in advance, but received no response. I think I will ask again. If we could get some of it done on the weekend ahead of time, I think that might take some pressure off the weeknights... at least it is worth a try. This sure isn't working.

 

 

 

If your daughter has PANDAS (and even if it's not diagnosed as PANDAS but is having some kind of hyper immune response that causes damage to her neurons) she has ABSOLUTELY no control over her emotions and outbursts. I don't care how much behavior modification you try, how much you punish or threaten to punish - it won't work. There is no manipulation on her part. Her brain doesn't even have the ability to manipulate right now. She apologizes not because she has an ulterior motive, but because when she isn't having an outburst, she is somewhat aware of what she has done and she feels horrible about it. Their guilt is phenomenal and makes them suffer. Many will apologize over and over. But when another moment occurs - they can't draw from past experience to stop from doing it or saying it - it's a compulsion and its almost like having to breathe - you just do it and you can't stop yourself.

 

Having gone through this with Gaby for almost a year and a half now, I see that when she's most severely impaired, the yelling or hateful things come out, then as things improve overall - that behavior does too. Within this 1 1/2 years she has had 3 periods (lasting from one month to 3 months where she was that belligerent). During that time she would scream at me that I didn't love her, that I hated her, that she wanted to die. One time she tried to put her head in the toilet (that was at her worst last year). This last time in January, she tried to go outside the front door without her coat twice and said that she was going away and she wanted to die. Nothing would provoke this - it would be totally random and, therefore, if you tried to be as nice and sweet as possible - it doesn't work either - they will continue with their rage because that's where they're at right then. Don't listen to anybody who tells you to discipline her. It will change nothing and make you feel guilty and make her feel even worse when she's able to realize what she's done.

 

The good news about all this is that it doesn't last forever. As I've said, the worst period for her lasted 3 months - a couple others lasted 1 or 2 months. During these times you just have to resign yourself to the fact that your child will not have normal routines - whether its sleep, schoolwork, etc. You just let her get through the day as best as you can and support her. If she doesn't learn anything right now - that's minor compared to the mental health part of it. Eventually they will catch up again. Some parents who have been through this and whose children are now teenagers have said that once it was over, their child was able to function at their grade level in school again and have normal social relationships also.

 

You have to be very firm with the school - talk to the principal. They have to understand that this is an illness, not a typical behavior problem that can be controlled. Gaby had to have an IEP for this and she went from an independently functioning student to having a few hours outside of the classroom with a teacher consultant to now having an aid with her in the classroom at all times. You just work with them at their level. Gaby's ice skating coach said that during this last period of complete spaciness and repeating phrases over and over, she just let her do whatever she could - which was sometimes just skating around randomly - she couldn't work on any particular moves at all. Her coach said that it doesn't matter - what matters is that she's doing something - she's doing just what she's capable of at that time and you can't place any expectations on them - you just wait. Pat

[peglem]

I agree with pmoreno. This behavior is compulsive and involuntary. Promising consequences good or bad- just increases the anxiety level and makes it worse. So, even if you promise her something good in return for not raging...rages will increase. She needs to know that you know she can't help it and you're just gonna help her get through it, no matter what. This behavior is scary for her, not just intrinsically, but also because she knows its irrational and doesn't get why its happening. Talk about it when she's calm and see if the 2 of you can develop strategies for dealing with it when she 1st feels it begin. The fact that she tried to deal with it by hitting the pillow means she is aware what's happening when it starts, so if the 2 of you start planning how to deal with it at that stage, she may be able to at least feel some control over it. You might also start observing to see if there are triggers (like with some seizures). She will be more susceptible during times of stress, but sometimes sudden changes in sensory stuff can trigger things as well. Like a flickering tv screen or even the computer. Stepping out of the bathtub, from hot to cold- things like that.

 

As difficult as dealing with these rages is...the added stress of other people thinking she's just being a brat is just as difficult. Can they not see that it is like a seizure? It just grabs hold of her. Try not to worry about them so much. Do what you can to educate them, but if they will not believe, you have no control over that.

 

I would try to minimize the homework. She may fall behind...but if the stress is too much, it just is. If she were ill with another disease (one more people have heard of and believe in) you'd say her health comes 1st and that's how it needs to be now.

 

I really think these rages are the absolute worse part of this illness because the rest of the world misinterprets them so often and they have the greatest potential for destroying self esteem. You don't want your child to see themselves as a bad kid, but everybody else seems to.

[cwmom]

Hi,

Hang in there!!!!

I just wanted to share that my son is 100% back to himself . At his worst last summer people wanted to admit him to inpatient psych the psychologist at BU suggested intensive CBT daily for 3 weeks .( The wait list was so long that by the time he could have gone he was better)

at worst He alternated between being almost non communicative to having fits of crying and rage. with SEVERE OCD. It was the hardest thing I have ever been through. He was gone

 

I just looked at it like- this is an illness like cancer or a brain injury. not my son- he has no control over his thoughts or actions at those moments. I would cry every day for him. Fortunately my husband felt the same way and we were a team. We had to be with him 24hours/ day so we would alternate working ( although we both took most of the summer off) we had to.

We were lucky we found a rheumatologist that understood it. He put him on antibiotics and within weeks he improved. He likened this to rheumatic fever of the brain.

 

Chris went back to school in the fall and gradually came back to himself. We were lucky that it happened during the summer because there is no way he could have gone with his severe OCD

 

Last night we had his grandparents over and he was the life of the party , sharing his ideas for having a cable access sports tv show, teaching them to play the wii, joking and laughing.interacting with everyone. He is a really happy 11yo boy. We never have any behavior problems with him he is back to the kid he used to be.

 

we look back at the summer as a nightmare but it does make me appreciate what we have.

 

It will get better just try to hang in there and take it one day at a time-- and use these forums to vent. I wished I had been able to over the summer but it was too painful for me to even write about. It was all I could do to get through the day.

 

Good luck take a deep breath.

[EAMom]

I would really have to agree with everything Pat and others said...that your dd really cannot be held responsible for her actions, so for the the consequences/reward business definitely could just add to her stress level. Normal parenting rules really do not work when your child has PANDAS.

 

We didn't do much in the way of consequences when our dd was sick last spring. We did do a week of no tv/computer last feb. (before her symptoms were "full-blown" and before we even knew about PANDAS) and she handled it well; she just read a lot.

 

Browneyes...I must say it's got to be difficult to not have your husband and ex-husband on board with you. I think it is very hard for some people to understand PANDAS, esp. when they see the tantrums (vs. the tics).

 

CWmom...that is great that your son is doing so much better !!

[amy s]

My 9 year old daughter has been having a lot of disrespect and defiance issues, along with rage-like tantrums pretty often. One of my questions is, how do you handle these?

 

If this were a rare occurance, I think it would be pretty simple to just leave her alone until it passes, but the problem is that sometimes they occur when I am trying to get her to bed for the night at something that resembles a reasonable time... or out the door to church, or to school on time, or get her homework done so I can get her to bed... and I am coming to see that if she gets less sleep, she only has more trouble with all this. It's like a vicious cycle!

 

Also, sometimes she kicks, grabs, pulls, pushes... and says very hateful things.

 

I do recognize that if she does have PANDAS (not yet confirmed, but her symptoms seem very compatible), that her brain is simply not functioning normally right now and my heart breaks for all she is going through. She had one this evening and I told her she could not go to an upcoming birthday party. She yelled that wasn't fair. A little later, she came to me and apologized, said she doesn't know what happens, but that she feels so awkward, but it's hard to tell if that is because she is really sorry or if she wants me to allow her to go to the party. Before this outburst got really bad, she did come into our room and start hitting a pillow, saying that she had negative feelings, but did not know why. I tried to re-direct (maybe that was my mistake, but it was getting late and she needed to get clean and get to sleep) and it just continued to escalate.

 

I am wondering just how much one should ignore the disrespect and defiance type stuff. For those of you who have been through this and are on the other side, how did you handle it and once your kids recovered, did they return to being respectful, obedient, kind and loving again or had they learned how to manipulate and get away with things? I am hearing a lot of challenge from others that she knows what she is doing and needs to be disciplined. While I'm not convinced of that (I believe there is something seriously wrong here, even though it does come and go through the day - usually worse in the evenings), I don't want to create a child who is learning to manipulate either.

 

It seems to me that it might be best to give her space during that time, which I gave up and did tonight, but at the cost of her getting clean. Gosh, I hate these decisions.... it is so difficult to manage bathing in the mornings and I really do not know if I will be able to do it before school. I can see this is so hard on her. She too, is searching for answers as to what is happening to her and why. It seems so confusing to me too.

 

How on earth did you manage to get through with getting homework done AND getting them to bed at a decent hour? This feels so impossible to me almost every night now. At one point, I asked her teacher for her weekly homework in advance, but received no response. I think I will ask again. If we could get some of it done on the weekend ahead of time, I think that might take some pressure off the weeknights... at least it is worth a try. This sure isn't working.

 

Hi brown...

You sound just like I felt many times since August 2007. My child is now better (3 months post IVIg) and YES she is back to her usual sweet and loving self. Homework? Forget that stuff right now. Your child is seriously ill and just do what you can do. Juggle the ways to keep as much peace in the home as possible because EVERYONE needs that right now. If they don't understand about homework SO WHAT. You are going through a personal trauma that few understand. PANDAS is horrible and it can ruin lives. Eventually because of everything (and debilitating OCD) you wrote about above our entire life changed....no more job for me, no more school for her, no going out for dinner and rarely could she even go grocery store shopping and birthday parties were OUT OF THE QUESTION. I lost all respect in the community from school personel and my coworkers and peers. There were times doctors tried to put her in mental institution for my safety...these docs we had dealt with had never seen anything like it and neither had I. I had already raised 2 children to college age and I knew that it wasn't a parenting issue and wasn't a behavioral problem but getting other people to know that was HARD.

While dealing with some of these issues a child psychologist taught me a 'safety hold' which is basically a way to restrain my dd for safety of everyone involved. It helped. Basically it was a big hug which held her legs and arms still and all the while I would tell her that I was there for her and remind her that I was just keeping her safe and that I loved her with all my heart. Afterward (and ours would last up to 3-4 hours long at times, my poor dd would sob and feel so guilty and apologetic. Those times are so hard for us to think about because all the physical pains she gave us were 10 x compounded by the emotional pain we were experiencing by seeing her like that and hearing these things from her. And after the horrors of the things she said and did there literally were times that, once I knew she was safe, I just had to get away for a few minutes in my room by myself to allow myself to decompress so I could be there for the next time this happened.

I was afraid that I was helping to 'create a child that is learning to manipulate' too. While I do feel that my child does try to get her way she does NOT try to do this with physical violence or abusive words ANY MORE.

I can sympathize with you not getting support regarding this diagnosis. I am still down right angry about my personal situation regarding that and am working every day to try to get over it. But that is pretty fresh and personal to me and so I won't go into it. Don't even get me started on the people interjecting opinions or the people in the community who are CLUELESS.

 

When I read your posts, my heart just breaks for some reason and I have a hard time responding. It really sounds like your dd has pandas to me. I don't know where you are with all this right now but if I was able to do it all over again I would not have waited to do a steroid burst and IVIg. We had some extenuating circumstances because we were so isolated living in Italy at the time and did eventually have to completely relocate to the states to find a doc to help us. We had horrible internet and constant power outtages because we lived in an italian farm villa so I could not research like I needed to...but if I knew now what I knew then I think things could have gotten under control with us before it got to the point that it did.

 

I wish you the very best. I apologize for the random quality of this post, I know I was jumping around a lot.

regards,

amy s

[amy s]

My 9 year old daughter has been having a lot of disrespect and defiance issues, along with rage-like tantrums pretty often. One of my questions is, how do you handle these?

 

If this were a rare occurance, I think it would be pretty simple to just leave her alone until it passes, but the problem is that sometimes they occur when I am trying to get her to bed for the night at something that resembles a reasonable time... or out the door to church, or to school on time, or get her homework done so I can get her to bed... and I am coming to see that if she gets less sleep, she only has more trouble with all this. It's like a vicious cycle!

 

Also, sometimes she kicks, grabs, pulls, pushes... and says very hateful things.

 

I do recognize that if she does have PANDAS (not yet confirmed, but her symptoms seem very compatible), that her brain is simply not functioning normally right now and my heart breaks for all she is going through. She had one this evening and I told her she could not go to an upcoming birthday party. She yelled that wasn't fair. A little later, she came to me and apologized, said she doesn't know what happens, but that she feels so awkward, but it's hard to tell if that is because she is really sorry or if she wants me to allow her to go to the party. Before this outburst got really bad, she did come into our room and start hitting a pillow, saying that she had negative feelings, but did not know why. I tried to re-direct (maybe that was my mistake, but it was getting late and she needed to get clean and get to sleep) and it just continued to escalate.

 

I am wondering just how much one should ignore the disrespect and defiance type stuff. For those of you who have been through this and are on the other side, how did you handle it and once your kids recovered, did they return to being respectful, obedient, kind and loving again or had they learned how to manipulate and get away with things? I am hearing a lot of challenge from others that she knows what she is doing and needs to be disciplined. While I'm not convinced of that (I believe there is something seriously wrong here, even though it does come and go through the day - usually worse in the evenings), I don't want to create a child who is learning to manipulate either.

 

It seems to me that it might be best to give her space during that time, which I gave up and did tonight, but at the cost of her getting clean. Gosh, I hate these decisions.... it is so difficult to manage bathing in the mornings and I really do not know if I will be able to do it before school. I can see this is so hard on her. She too, is searching for answers as to what is happening to her and why. It seems so confusing to me too.

 

How on earth did you manage to get through with getting homework done AND getting them to bed at a decent hour? This feels so impossible to me almost every night now. At one point, I asked her teacher for her weekly homework in advance, but received no response. I think I will ask again. If we could get some of it done on the weekend ahead of time, I think that might take some pressure off the weeknights... at least it is worth a try. This sure isn't working.

 

Hi brown...

You sound just like I felt many times since August 2007. My child is now better (3 months post IVIg) and YES she is back to her usual sweet and loving self. Homework? Forget that stuff right now. Your child is seriously ill and just do what you can do. Juggle the ways to keep as much peace in the home as possible because EVERYONE needs that right now. If they don't understand about homework SO WHAT. You are going through a personal trauma that few understand. PANDAS is horrible and it can ruin lives. Eventually because of everything (and debilitating OCD) you wrote about above our entire life changed....no more job for me, no more school for her, no going out for dinner and rarely could she even go grocery store shopping and birthday parties were OUT OF THE QUESTION. I lost all respect in the community from school personel and my coworkers and peers. There were times doctors tried to put her in mental institution for my safety...these docs we had dealt with had never seen anything like it and neither had I. I had already raised 2 children to college age and I knew that it wasn't a parenting issue and wasn't a behavioral problem but getting other people to know that was HARD.

While dealing with some of these issues a child psychologist taught me a 'safety hold' which is basically a way to restrain my dd for safety of everyone involved. It helped. Basically it was a big hug which held her legs and arms still and all the while I would tell her that I was there for her and remind her that I was just keeping her safe and that I loved her with all my heart. Afterward (and ours would last up to 3-4 hours long at times, my poor dd would sob and feel so guilty and apologetic. Those times are so hard for us to think about because all the physical pains she gave us were 10 x compounded by the emotional pain we were experiencing by seeing her like that and hearing these things from her. And after the horrors of the things she said and did there literally were times that, once I knew she was safe, I just had to get away for a few minutes in my room by myself to allow myself to decompress so I could be there for the next time this happened.

I was afraid that I was helping to 'create a child that is learning to manipulate' too. While I do feel that my child does try to get her way she does NOT try to do this with physical violence or abusive words ANY MORE.

I can sympathize with you not getting support regarding this diagnosis. I am still down right angry about my personal situation regarding that and am working every day to try to get over it. But that is pretty fresh and personal to me and so I won't go into it. Don't even get me started on the people interjecting opinions or the people in the community who are CLUELESS.

 

When I read your posts, my heart just breaks for some reason and I have a hard time responding. It really sounds like your dd has pandas to me. I don't know where you are with all this right now but if I was able to do it all over again I would not have waited to do a steroid burst and IVIg. We had some extenuating circumstances because we were so isolated living in Italy at the time and did eventually have to completely relocate to the states to find a doc to help us. We had horrible internet and constant power outtages because we lived in an italian farm villa so I could not research like I needed to...but if I knew now what I knew then I think things could have gotten under control with us before it got to the point that it did.

 

I wish you the very best. I apologize for the random quality of this post, I know I was jumping around a lot.

regards,

amy s

 

 

I just wanted to add one more thing. That while yes, I agree, normal parenting rules do NOT apply with a child in the throws of pandas symptoms, the community and society will not see it that way...and I don't know what the answer is. Be aware that your child could still get suspended from school for these behaviors, if they start happening there. The child could still have police involvement (this happened to us because of an issue which happened out of the blue when I came to pick my child up at daycare!) and social work services can get involved. You will be lucky to get any of these people to understand or believe that this isn't happening because of 'trouble in the home' or because the child has been allowed to behave this way. I hate to sound so negative here but that is what we have went through. I'm not sure but from what I've read it is likely that my child had a bit more intense rages than some others on here. I don't know what to advise except take care of yourself so you can be there for your child. And do everything you can to help her father and step father understand pandas. Understandably that could be instrumental in getting her eventual treatment.

[Dedee]

Amy,

 

OMG, you are so right on target with what you say about those looking from outside the situation. You have to work so hard to tune out all that junk and concentrate on what you know is true of your child. I think that is what has gotten most of us through the hardest times is just the absolute certainty that we KNOW our kids. We live with them every day and know what is normal for them and not. I wish I had a dime for every time someone asked me if there was any "stress" in our marriage or in our house. I wanted to yell YES, it's called PANDAS. Thanks for sharing your story Amy. It is inspiring.

 

Dedee

[michele]

I wish I could tell you I had the answers or that it will get better with time, I have been dealing with this for sometime also and it is like a merry go round that just won't stop. I recently got my son involved with a child dev psychologist and a child psychiatrist. Both are associated with a level 1 children's hospital. I have been through several children's neurologists also and none of these professionals seem to get the brain inflammation impact to his symptoms.

 

It sounds like you and I have been living the same late afternoon nightmare. My son has been melting down from 4:00 on. Falling on the ground, shouting, throwing, kicking, screaming, crying, hitting, name calling. Evertime he doesn't get his way it is the same meltdown. He wants the rewards but earning them is causing him anxiety. The psych agrees sleep could be playing apart. The psychiatrist added ADHD meds for him and he can't fall asleep easily anymore. The psychologist wants me to do rewards and time outs. Like others here stated these kids get more anxious when they are thinking about the "prize", more angry when they are forced to time out. I try to explain this to the psychologist and she says he needs more rewards more frequently.

 

The school is something else also. They can give him 18 marks of needs help on his report card but won't put any accomodations into wrtiting on his IDEA/ IEP. They only list fine motor as his disibility because of the dygraphia

 

. All these behaviors do wear you down and take something away from the other kids. I find all my kids fighting more now as a result. You are right many others see it as bad parenting. They don't see the behaviors when you are away from the child. My parents and the school say he is fine for them. That is because they direct their frustration at the ones they feel safest with. I am not sure if the worsening of behaviors are from another episode of PANDAS or a side effect from meds. Possibly the symptoms are waxing again. I agree it is obstinate defiance I am seeing too and a lack of respect. My son also takes antibiotics and they are not helping the symptoms and tic meds too. The psychiatrist just seem to use trial and error on the meds which is hard on the family and the pocket book.

 

When you figure this out please let me know. I have been worrying about this all day too.

Michele

 

 

My 9 year old daughter has been having a lot of disrespect and defiance issues, along with rage-like tantrums pretty often. One of my questions is, how do you handle these?

 

If this were a rare occurance, I think it would be pretty simple to just leave her alone until it passes, but the problem is that sometimes they occur when I am trying to get her to bed for the night at something that resembles a reasonable time... or out the door to church, or to school on time, or get her homework done so I can get her to bed... and I am coming to see that if she gets less sleep, she only has more trouble with all this. It's like a vicious cycle!

 

Also, sometimes she kicks, grabs, pulls, pushes... and says very hateful things.

 

I do recognize that if she does have PANDAS (not yet confirmed, but her symptoms seem very compatible), that her brain is simply not functioning normally right now and my heart breaks for all she is going through. She had one this evening and I told her she could not go to an upcoming birthday party. She yelled that wasn't fair. A little later, she came to me and apologized, said she doesn't know what happens, but that she feels so awkward, but it's hard to tell if that is because she is really sorry or if she wants me to allow her to go to the party. Before this outburst got really bad, she did come into our room and start hitting a pillow, saying that she had negative feelings, but did not know why. I tried to re-direct (maybe that was my mistake, but it was getting late and she needed to get clean and get to sleep) and it just continued to escalate.

 

I am wondering just how much one should ignore the disrespect and defiance type stuff. For those of you who have been through this and are on the other side, how did you handle it and once your kids recovered, did they return to being respectful, obedient, kind and loving again or had they learned how to manipulate and get away with things? I am hearing a lot of challenge from others that she knows what she is doing and needs to be disciplined. While I'm not convinced of that (I believe there is something seriously wrong here, even though it does come and go through the day - usually worse in the evenings), I don't want to create a child who is learning to manipulate either.

 

It seems to me that it might be best to give her space during that time, which I gave up and did tonight, but at the cost of her getting clean. Gosh, I hate these decisions.... it is so difficult to manage bathing in the mornings and I really do not know if I will be able to do it before school. I can see this is so hard on her. She too, is searching for answers as to what is happening to her and why. It seems so confusing to me too.

 

How on earth did you manage to get through with getting homework done AND getting them to bed at a decent hour? This feels so impossible to me almost every night now. At one point, I asked her teacher for her weekly homework in advance, but received no response. I think I will ask again. If we could get some of it done on the weekend ahead of time, I think that might take some pressure off the weeknights... at least it is worth a try. This sure isn't working.

[Worried_Dad]

Ouch - this thread is physically painful to read, and I debated whether to even try to reply, since so many others have conveyed the essence of this nightmare so well.

 

I'll just say this: I could see the brain storms coming, could see them engulf my poor son and swallow him up. It was like his mind was on fire. He was the sweetest, most mild-mannered, empathetic kid you'd ever hope to meet before this hit 2 years ago. After his 2nd symptom explosion in Aug 08, he literally destroyed our basement one day in an uncontrollable rage.

 

As others have said eloquently: normal parenting rules don't apply when your child is suffering from a brain injury. In the early days - when his diagnosis was acute rheumatic fever with Sydenham's chorea, not PANDAS - I did not know how to deal with this and (since he had no OCD at that point and only motor tics and some emotional lability) I tried to be a "normal parent." That is, when he did not behave appropriately, I tried to punish him the way we would have before his illness (loss of privileges, etc.). Every time I tried it, it was a complete disaster. I learned the hard way that adding more stress to what these kids are already experiencing is a bad, bad idea. (And as others have said: I felt guilty as ###### afterward.)

 

And yes, other people don't get it. The damage is inside the brain; it's not visible, like cancer after chemo or a degenerative neuromuscular disease. So - on top of everything else the child and family endure - they get no support from the community and may in fact get lots of grief. (I remember clearly the "that boy needs military school, not medication" line that made me want to punch somebody!!!)

 

So remember what your healthy child was like and know that they're still trapped inside there somewhere. When I was spending most of my time on a Sydenham's forum, a mom there explained that they made up a name for the "monster in her daughter's head" and always attributed the nasty behaviors to that alter ego. Seemed like a pretty great idea to me at the time. Still does!

 

Until your child heals, just try to minimize stress and insulate her with reassurance and affection. It's the best any parent can do in this kind of nightmare scenario!!!

[browneyesmom]

THANK YOU SO MUCH for all of your responses!!!! I can't tell you how much I appreciate your support!! I emailed my husband last night as well as this morning, then read him excerpts from your posts this evening to help him understand that I am not the only one who sees that this is an illness, not simply a child acting out! I shared with him how impressed I was that she had been able to come in our room, get the pillow and articulate what she was feeling and how I want to have a better plan in place for her so it will help her get through it better. I used my medical training to explain a bit more about seizures and brain injuries and am hoping things will improve from here, at least at home.

 

I can not thank you enough for your help!!!

 

Now, I have some good news... or at least the start of some good news to report and I had to come share it with you all. I got a new computer and inadvertently entered the wrong password, trying to guess as it had been saved on the old one, so I have been sitting here about to burst wanting to post this, but could not get online until just now!

 

Ok, so look for my next post - new topic!

[T_Mom]

I just want to echo that there seems to be a common parental understanding (from experience) that with a true PANDAS issue of inflammation, this IS a physical issue, it is not willful disobedience, nor is it kids not trying hard enough, etc. (...and often only after your child has gotten better do you fully realize the extent of that. )

 

How much easier would it have been if our dd could have "just tried" and it would have gone away...

We had the same types of suggestions made by well meaning doctors/family/friends this year--psych. intake, intensive CBT, increase SSRIs, family counseling, doctor's asking if we were having marital problems...etc. etc. Thick skin is the name of the game -- and try to remain reality based!

 

We also had one great insight which I want to share--during the worst time (lasted 3 weeks), crippling OCD, no speaking, holding saliva, eyes closed--and we are running to doctors all over. We wondered if she even knew what was going on around her all the time. Once dd "cleared" she could remember absolutely everything from that time period. We asked if she could remember what we said to her during that time. She said, "Yes, you said I was going through a hard time but that you were going to get me help." That was what we did say to her--a number of times, at the worst of times, when she was not herself, and she remembered.

Best to All, continued prayers,

T.Mom