Suggestions to prevent the violence during rages

[Mary M]

I do not want to be negative. I have avoided posting since IVIg just so I wouldn't be negative. We are 19 days post IVIg for our dd12. I have been scouring the forum about the post ivig period (after reading the posts I am amazed that any of us thought it was a good idea to go ahead with IVIg) but that said, I believe you all when you say it takes time (8 weeks is really gonna be tough!), I believe Dr K's "suicide time" description, I believe that what I'm seeing is a sure sign that her body is attempting to heal but I am bruised and battered from head to toe (emotionally, yes, but I'm really talking about physically here). How do you prevent the abuse and violence? I worked in a child/adolescent psych unit 20 years ago so I was trained in containment holds but we never had to really use them but I have to use them daily here at home. I will not abuse her back even though she begs for me to do that. I will not tell her I hate her even though she begs me to do that. During this time post IVIg do I succumb to the OCD and do everything the OCD wants me to do until the healing period is over (I have been refusing OCD's requests-no matter what you all say I still won't abuse her or say I hate her--but the other OCD demands do I follow them or ignore OCD's rules and controls)? We have been using ibuprofen since the end of May. She's on no psych meds. Is there a psych med we should request? A sedative? I just sent an email to Dr K but what can he do about any of this? Does she need a different abx? An additional abx for antifungals from the augmentin? How would we know if she needed this?

Mary

from Michigan

[peglem]

I do not want to be negative. I have avoided posting since IVIg just so I wouldn't be negative. We are 19 days post IVIg for our dd12. I have been scouring the forum about the post ivig period (after reading the posts I am amazed that any of us thought it was a good idea to go ahead with IVIg) but that said, I believe you all when you say it takes time (8 weeks is really gonna be tough!), I believe Dr K's "suicide time" description, I believe that what I'm seeing is a sure sign that her body is attempting to heal but I am bruised and battered from head to toe (emotionally, yes, but I'm really talking about physically here). How do you prevent the abuse and violence? I worked in a child/adolescent psych unit 20 years ago so I was trained in containment holds but we never had to really use them but I have to use them daily here at home. I will not abuse her back even though she begs for me to do that. I will not tell her I hate her even though she begs me to do that. During this time post IVIg do I succumb to the OCD and do everything the OCD wants me to do until the healing period is over (I have been refusing OCD's requests-no matter what you all say I still won't abuse her or say I hate her--but the other OCD demands do I follow them or ignore OCD's rules and controls)? We have been using ibuprofen since the end of May. She's on no psych meds. Is there a psych med we should request? A sedative? I just sent an email to Dr K but what can he do about any of this? Does she need a different abx? An additional abx for antifungals from the augmentin? How would we know if she needed this?

Mary

from Michigan

Did she exhibit this sort of behavior before IVIG? My daughter's rages have gotten much, much better since IVIG, but my arms and hands especially still bear a multitude of scars from her past life, so I understand how difficult this is. We do have a script for valium, as needed for my daughter. She still does a bit of SIB, but not nearly as bad as it used to be. But, sometimes, I give valerian root instead of valium and it does help as well. The other thing I have recently been trying (because I read a study that it lowers CamKII activity) is taurine. I think that is helping as well. My daughter is almost 1 month out from her 2nd HD IVIG- still using ibuprofen, still using valium (although much less than pre IVIG). We're scheduled for another one this Thurs & Friday. I don't know of any psych meds that would help. None of them helped my daughter, and we've tried a ot of them. At this point in your daughter's care, they would probably make it difficult to see what's going on with her.

My daughter gets horrible, horrible yeast from augmentin- but I always know, because it shows up vaginally. Don't know how those w/ boys figure it out! We use diflucan for that, but diflucan does create some difficult behaviors for about 24 hours. She's on zith most of the time, which does not seem to cause the yeasties nearly as much!

I wonder if prednisone might help?

 

Oh, I just remembered- the other thing that seems to really help is cod liver oil. Once a week I give her 100% of the RDA, then the rest of the week, just 50%. CLO can get toxic if you overdo it, because it builds up- the body does not flush excess.

[Mary M]

Did she exhibit this sort of behavior before IVIG? My daughter's rages have gotten much, much better since IVIG, but my arms and hands especially still bear a multitude of scars from her past life, so I understand how difficult this is. We do have a script for valium, as needed for my daughter. She still does a bit of SIB, but not nearly as bad as it used to be. But, sometimes, I give valerian root instead of valium and it does help as well. The other thing I have recently been trying (because I read a study that it lowers CamKII activity) is taurine. I think that is helping as well. My daughter is almost 1 month out from her 2nd HD IVIG- still using ibuprofen, still using valium (although much less than pre IVIG). We're scheduled for another one this Thurs & Friday. I don't know of any psych meds that would help. None of them helped my daughter, and we've tried a ot of them. At this point in your daughter's care, they would probably make it difficult to see what's going on with her.

My daughter gets horrible, horrible yeast from augmentin- but I always know, because it shows up vaginally. Don't know how those w/ boys figure it out! We use diflucan for that, but diflucan does create some difficult behaviors for about 24 hours. She's on zith most of the time, which does not seem to cause the yeasties nearly as much!

I wonder if prednisone might help?

 

Oh, I just remembered- the other thing that seems to really help is cod liver oil. Once a week I give her 100% of the RDA, then the rest of the week, just 50%. CLO can get toxic if you overdo it, because it builds up- the body does not flush excess.

 

 

Our dd demonstrated extreme rages during both of her major exacerbations (age 7 1/2 and now age 12) but she only started to become physically violent to us in the weeks just prior to IVIg and now after IVIg. The violence level now is just beyond me. Her voice, her face, her demeanor...it's like something from a horror movie (yes, Linda Blair does come to mind here). There used to be purposeless flailing but the purposeful hitting, that's what's really problematic now. We were using valerian before the IVIg as a sleep aid but I will try to get her to start taking that again. Once the sleep issues subsided we cut out the valerian. Thank you for that suggestion. I only thought about it for sleep and now am reminded it was supposed to be calming for more than sleep. I have prednisone from Dr K for the side effects of IVIg. Dd refused to take them when she was vomiting and had the head ache so maybe he'll let me give her those. I haven't heard back from Dr K yet.

Thank you, peglem, for your help.

[laurenjohnsonsmom]

Hi Mary,

 

My heart goes out to you. It brings back memories of when we had to lock everything up in a storage unit as my ds 14 at the time could pick locks and would steal the keys when we were sleeping as he roamed the house all night. When I say everything I mean "everything" every knife, glass, shovels, razors, blunt objects). We installed key licks in every interior door of the house and my husband and I would take turns sleeping with our younger dds 6 & 8 at the time) behind locked bedroom doors the other one of us would stay awake all night keeping a careful watch on DS14! Even looking back almost 4 years later is difficult to do.

 

I know people say it can be harder to treat the "older kids" but find some comfort, if you can, that at least you know what PANDAS is and that you are trying to help to the best of your ability (as I'm sure the doctors are as well). Our son was never diagnosed PANDAS when we rushed him in to the ED in the fall of 2006 after he started raging etc overnight. Even though my perfectly functioning 14 year old, caring son, started acting crazy overnight! Nobody in the ER, the ER doc's who did the psych eval, NOBODY thought to look into he "medical history" where we would have told them that he along with my other two daughter had strep in the last 10 days. Nobody seemed to think or relay it to what was going on. Instead we left feeling like "bad parents", we blamed it on puberty/hormones, our recent move, him just being a "unruly teenager". We put him on psycotropic drugs which made him way worse off. His perfect honor roll grades dropped to "f's". He ended up being temporarily and permanent institutionalized over the course of almost 2 years. Nobody could figure out what was wrong. He now has been living with his grandparents in Michigan for the past two years, barely functioning. My honor roll son with the huge heart who would do anything for anybody could not even graduate from high school thus year.(almost but few credits shy). He is eighteen now and has to make his own decisions and he has given up that he will ever be the way he used to before he got strep in October of 2006 (10/18/06 to be exact but whose keeping track)?

 

You have a chance with your daughter. I know you feel beat down but know that if you can find healing it will be worth it in the end. I would give my right arm (and both legs) if I could get my son into ivig even if there's less of a chance of it working due to his age.

 

I've heard mixed reports that psyc meds help and in our case made things a lot worse.

 

(((hugs))) to you and your daughter. You're trying your best.

 

Lynn

www.pandasresourcenetwork.org

educate, communicate, cure

 

 

I do not want to be negative. I have avoided posting since IVIg just so I wouldn't be negative. We are 19 days post IVIg for our dd12. I have been scouring the forum about the post ivig period (after reading the posts I am amazed that any of us thought it was a good idea to go ahead with IVIg) but that said, I believe you all when you say it takes time (8 weeks is really gonna be tough!), I believe Dr K's "suicide time" description, I believe that what I'm seeing is a sure sign that her body is attempting to heal but I am bruised and battered from head to toe (emotionally, yes, but I'm really talking about physically here). How do you prevent the abuse and violence? I worked in a child/adolescent psych unit 20 years ago so I was trained in containment holds but we never had to really use them but I have to use them daily here at home. I will not abuse her back even though she begs for me to do that. I will not tell her I hate her even though she begs me to do that. During this time post IVIg do I succumb to the OCD and do everything the OCD wants me to do until the healing period is over (I have been refusing OCD's requests-no matter what you all say I still won't abuse her or say I hate her--but the other OCD demands do I follow them or ignore OCD's rules and controls)? We have been using ibuprofen since the end of May. She's on no psych meds. Is there a psych med we should request? A sedative? I just sent an email to Dr K but what can he do about any of this? Does she need a different abx? An additional abx for antifungals from the augmentin? How would we know if she needed this?

Mary

from Michigan

[EAMom]

Hi Lynn,

 

Thanks for sharing the story of your son. In a sense, Lauren's diagnosis was a blessing in that it gave you some insights your other children. Please don't give up on him. Have you seen the Turkish Study? http://www.turkpsikiyatri.com/en/default.a...icle&id=592 These men responded to Plasmapheresis. And, they weren't even on antibiotics (it turns out that at the end of the paper it's suggested that prophylaxis would have been a good idea.)

 

Is there even anyway to get him started on some high dose antiobiotics, to start?

[laurenjohnsonsmom]

He has a lot of anger issues like Mary's daughter. The two years we tried to understand what was wrong with him was traumatizing for him (and our family) to say the least. The hardest part is sending your child 17 hours away because you have to protect your other children. His grandfather he lives with is an DO who is older than "coke in a can" (a PANDAS non-believer). I've sent Madelein's kit to them prepaid. Begged them to do bloodwork and NOTHING! We are just driving back (32 hours round trip) from Muchigan (been there for 5 days) and never even saw him. So yes, EAmon and Mary I know what it feels like to have PANDAS successes (my beautiful functional daughter who just 6 months was sneezing 25,000x a min) and to have failures as in my son's case. It's why the pandasresourcenetwork exists-in hopes what happened with our son's (his misdiagnosis) doesn't have to ever happen to anyone else.

 

I appreciate your encouragement and kind words!

 

The virtual family here is the best!

 

Lynn

www.pandasresourcenetwork.org

educate, communicate, cure

 

Hi Lynn,

 

Thanks for sharing the story of your son. In a sense, Lauren's diagnosis was a blessing in that it gave you some insights your other children. Please don't give up on him. Have you seen the Turkish Study? http://www.turkpsikiyatri.com/en/default.a...icle&id=592 These men responded to Plasmapheresis. And, they weren't even on antibiotics (it turns out that at the end of the paper it's suggested that prophylaxis would have been a good idea.)

 

Is there even anyway to get him started on some high dose antiobiotics, to start?

[Fixit]

I do not want to be negative. I have avoided posting since IVIg just so I wouldn't be negative. We are 19 days post IVIg for our dd12. I have been scouring the forum about the post ivig period (after reading the posts I am amazed that any of us thought it was a good idea to go ahead with IVIg) but that said, I believe you all when you say it takes time (8 weeks is really gonna be tough!), I believe Dr K's "suicide time" description, I believe that what I'm seeing is a sure sign that her body is attempting to heal but I am bruised and battered from head to toe (emotionally, yes, but I'm really talking about physically here). How do you prevent the abuse and violence? I worked in a child/adolescent psych unit 20 years ago so I was trained in containment holds but we never had to really use them but I have to use them daily here at home. I will not abuse her back even though she begs for me to do that. I will not tell her I hate her even though she begs me to do that. During this time post IVIg do I succumb to the OCD and do everything the OCD wants me to do until the healing period is over (I have been refusing OCD's requests-no matter what you all say I still won't abuse her or say I hate her--but the other OCD demands do I follow them or ignore OCD's rules and controls)? We have been using ibuprofen since the end of May. She's on no psych meds. Is there a psych med we should request? A sedative? I just sent an email to Dr K but what can he do about any of this? Does she need a different abx? An additional abx for antifungals from the augmentin? How would we know if she needed this?

Mary

from Michigan

Did she exhibit this sort of behavior before IVIG? My daughter's rages have gotten much, much better since IVIG, but my arms and hands especially still bear a multitude of scars from her past life, so I understand how difficult this is. We do have a script for valium, as needed for my daughter. She still does a bit of SIB, but not nearly as bad as it used to be. But, sometimes, I give valerian root instead of valium and it does help as well. The other thing I have recently been trying (because I read a study that it lowers CamKII activity) is taurine. I think that is helping as well. My daughter is almost 1 month out from her 2nd HD IVIG- still using ibuprofen, still using valium (although much less than pre IVIG). We're scheduled for another one this Thurs & Friday. I don't know of any psych meds that would help. None of them helped my daughter, and we've tried a ot of them. At this point in your daughter's care, they would probably make it difficult to see what's going on with her.

My daughter gets horrible, horrible yeast from augmentin- but I always know, because it shows up vaginally. Don't know how those w/ boys figure it out! We use diflucan for that, but diflucan does create some difficult behaviors for about 24 hours. She's on zith most of the time, which does not seem to cause the yeasties nearly as much!

I wonder if prednisone might help?

 

 

 

Peg if remember ds was the one whos' score came back 105...then you sent the thing about taurine..a couple of months later....

and out of curioustiy i went to check the aminos he was on and he was on taurine 2x aday for 3months and stopped 1 week prior to this draw

and i will say at that point ds was at his best point since this original onset....

 

new test he's come back at 160....off taurine 4-5 months

so my question is ...it reduces camk "activity"...can you explain that at all?? not sure what that means ???

would it have any other benefits??? i realize we are all learning, but maybe you had some other infor

i tried to restart a bit ago but we had a flare and stopped it the next day or so....

started a taper about 5 days ago...seeing some relief...25-30%? last time it took 3weeks with burst,,but it was wonderful 50-70% better...maybe i'll get continued improvement as month goes on!!!!!!

anyway....thinking about starting taurine again....

are you doing 1 or 2 times a day?

[peglem]

Did she exhibit this sort of behavior before IVIG? My daughter's rages have gotten much, much better since IVIG, but my arms and hands especially still bear a multitude of scars from her past life, so I understand how difficult this is. We do have a script for valium, as needed for my daughter. She still does a bit of SIB, but not nearly as bad as it used to be. But, sometimes, I give valerian root instead of valium and it does help as well. The other thing I have recently been trying (because I read a study that it lowers CamKII activity) is taurine. I think that is helping as well. My daughter is almost 1 month out from her 2nd HD IVIG- still using ibuprofen, still using valium (although much less than pre IVIG). We're scheduled for another one this Thurs & Friday. I don't know of any psych meds that would help. None of them helped my daughter, and we've tried a ot of them. At this point in your daughter's care, they would probably make it difficult to see what's going on with her.

My daughter gets horrible, horrible yeast from augmentin- but I always know, because it shows up vaginally. Don't know how those w/ boys figure it out! We use diflucan for that, but diflucan does create some difficult behaviors for about 24 hours. She's on zith most of the time, which does not seem to cause the yeasties nearly as much!

I wonder if prednisone might help?

 

Peg if remember ds was the one whos' score came back 105...then you sent the thing about taurine..a couple of months later....

and out of curioustiy i went to check the aminos he was on and he was on taurine 2x aday for 3months and stopped 1 week prior to this draw

and i will say at that point ds was at his best point since this original onset....

 

new test he's come back at 160....off taurine 4-5 months

so my question is ...it reduces camk "activity"...can you explain that at all?? not sure what that means ???

would it have any other benefits??? i realize we are all learning, but maybe you had some other infor

i tried to restart a bit ago but we had a flare and stopped it the next day or so....

started a taper about 5 days ago...seeing some relief...25-30%? last time it took 3weeks with burst,,but it was wonderful 50-70% better...maybe i'll get continued improvement as month goes on!!!!!!

anyway....thinking about starting taurine again....

are you doing 1 or 2 times a day?

Well, I figured if high CamKII activity is a marker for PANDAS, lowering it should help. But there was another article that I posted around the same time, about taurine helping with info processing by helping to hold something in short term memory while processing another piece of information- something that my daughter has not been good at. I suspect this is a problem in ADD as well, so that the newly processed info doesn't get the opportunity to get connected to the base that started the thought process.

Dosage: I give 325mg capsules (from Kirkman's), 2 in the morning, one right after school (early afternoon) another @ 6PM, so 4 caps/day. I find it works better to space the doses a few hours apart- seems to ease her into it or something. I give the 2 in the morning because I can't give her anything while she's at school.

My daughter weighs @ 115lbs. Since I started this after IVIG (albeit 2 wks after) I can't be certain if its the taurine helping or not, but she seems to be processing better than she did after the IVIG a month before- working on patterns at school (you have to conserve info while you figure out what comes next) and is getting it for the 1st time ever- asking questions (again requires conservation of an idea while other info is processed)... Looks like we're doing IVIG monthly, so I'm not going to get a chance to try something independent of that anyway.

[Suzan]

Peg if remember ds was the one whos' score came back 105...then you sent the thing about taurine..a couple of months later....

and out of curioustiy i went to check the aminos he was on and he was on taurine 2x aday for 3months and stopped 1 week prior to this draw

and i will say at that point ds was at his best point since this original onset....

new test he's come back at 160....off taurine 4-5 months

so my question is ...it reduces camk "activity"...can you explain that at all?? not sure what that means ???

would it have any other benefits??? i realize we are all learning, but maybe you had some other infor

i tried to restart a bit ago but we had a flare and stopped it the next day or so....

started a taper about 5 days ago...seeing some relief...25-30%? last time it took 3weeks with burst,,but it was wonderful 50-70% better...maybe i'll get continued improvement as month goes on!!!!!!

anyway....thinking about starting taurine again....

are you doing 1 or 2 times a day?

 

Interesting on the taurine. My dd7's CamK came back at 118 and I was surprised it was so low since she was restricting almost all food at the time and doing very poorly. She had been on taurine very recently before the draw (this was last year).

 

Susan

[norcalmom]

Lynn,

Thank you for sharing the other part of your story with us. My heart goes out to you and him, I hope he decides to take the information you offer him. He is still young. We all of course know about Lauren. Putting your battle on TV with an adolecent girl must have been difficult - but I am not alone when I say thank you for doing this. I just went back and read your update and back story on her. I too have a child that probably had pandas at a younger age, and until he developed a tic, the symptoms, although odd, all fell in to "normal" childhood behaviors.

 

My heart goes out to you and Mary. I'm thinking of you both and wishing your children heathy adulthoods.

[rockytop]

TWO THINGS:

1. my 12 dd is on Risperdal- I know lots of people have had trouble with this med, but for us it has been a lifesaver- literally. She has been on this since March- it is a liquid that mixes easily- so she is still unaware of it. She was violent, psychotic and this med has made a world of difference to the point where she willingingly took the prednisone and zithromax that are bringing my child back form ######.

as far as not particpating in the OCD< my daughter's psych who has been with us since onset has always said that since she is so severely affected, we just need to alleviate all stress for her. I do wonder if that has been a self-defeating tatic at times. Essentially nothing is expected of her and unless she might burn the house or permanently injure someone or herself- she does it- or DID it-- she is alot better now!

 

2. Lynn, thanks for sharing about your son. I am sorry to hear about it.

We, too, spent almost two years trying to figure out what happened to my girl (including ER visits, docs who stare in shock and fighting inpatient recommendations)- and most of it because docs do not believe in PANDAS and especially if you are neg for strep! She is so uncooperative now with any tx, meds or even Dr's visits because of the time that was torturous to her- hence the need for liquid risperdal!

We have been through a disaster with my 12 yo (and alot of it because she has always been negative for strep) About three weeks ago- my 11 yo daughter started with typical confessing, counting, arranging type OCD. Well, THANK THE LORD (truly) I took her in to our family doc (who probably thinks I am slightly nutty:) and she had a positive strep test! Antibiotics for her and we are seeeing improvement for her also. Nobody would ever have been able to put my two girls in the same diagnostic category-- they are so markedly different in their presentation. this is a wild ride, for sure

[peglem]

1. my 12 dd is on Risperdal- I know lots of people have had trouble with this med, but for us it has been a lifesaver- literally. She has been on this since March- it is a liquid that mixes easily- so she is still unaware of it. She was violent, psychotic and this med has made a world of difference to the point where she willingingly took the prednisone and zithromax that are bringing my child back form ######.

as far as not particpating in the OCD< my daughter's psych who has been with us since onset has always said that since she is so severely affected, we just need to alleviate all stress for her. I do wonder if that has been a self-defeating tatic at times. Essentially nothing is expected of her and unless she might burn the house or permanently injure someone or herself- she does it- or DID it-- she is alot better now!

We did risperdal w/ my daughter also, and it did help at first- but with exacerbations she got worse anyway and finally she actually improved when we took her off of it. Just my opinion, but I think initially, it helped because she was finally sleeping. Also, just my opinion, its impossible to relieve stress during PANDAS exacerbation. The stress is self-generated within the compulsions and obsessions.

 

We have been through a disaster with my 12 yo (and alot of it because she has always been negative for strep) About three weeks ago- my 11 yo daughter started with typical confessing, counting, arranging type OCD. Well, THANK THE LORD (truly) I took her in to our family doc (who probably thinks I am slightly nutty:) and she had a positive strep test! Antibiotics for her and we are seeeing improvement for her also. Nobody would ever have been able to put my two girls in the same diagnostic category-- they are so markedly different in their presentation. this is a wild ride, for sure

 

Do you think your 12yo maybe presenting w/ a "canary" effect from exposure to your 11yo?

[EAMom]

We did risperdal w/ my daughter also, and it did help at first- but with exacerbations she got worse anyway and finally she actually improved when we took her off of it. Just my opinion, but I think initially, it helped because she was finally sleeping. Also, just my opinion, its impossible to relieve stress during PANDAS exacerbation. The stress is self-generated within the compulsions and obsessions.

Yup, and stress is also self-generated by PANDAS anxiety.

 

Do you think your 12yo maybe presenting w/ a "canary" effect from exposure to your 11yo?

 

I agree, the "negative" 12 yo. could definitely be reacting to the positive 11 year old!

[WornOutDad]

We learned over the years through trial and error, mostly error on my behalf that restraint upon recommendation of DS's therapist made things much, much worse. This particular therapist was not a OCD expert much less a PANDAS expert and encouraged the restraint with the idea it would protect our DS and ourselves. As he has aged, now 14, it is practically impossible to restrain him when in a aggressive state. When and if attempted it just fuels the fire. There have been situations recently where I don't necessarily try to restrain him, but run blocker between him and my wife.

 

Its more like he is a defensive end coming after my wife, the QB, for the sack and I am her offensive tackle.

[Mary M]

Its more like he is a defensive end coming after my wife, the QB, for the sack and I am her offensive tackle.

 

 

I like the analogy. I played center in powderpuff football...you know I recall being pretty bruised up during those days. Must be a "turning back of the pages" for the me.

 

Thank you for the suggestion to re-think the containment hold strategy. I was using it upon the recommendation of dd's psychologist, and since I knew about how to use it, I thought it made sense. But I would say it only exacerbates the fight/flight response to a higher level and obviously puts me in harm's way.

 

Thank you everyone for your responses to my concerns via the forum and PM's.

Mary

from Michigan