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How do you do it when things are in crisis mode?


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:wacko: Yeah, I'm on a roll today. This is the first week DH is back at work (after being home all summer and then the few weeks at beginning of school year) and week 3 post IVig for us. She's in week 2 of school and week 2 of having our special needs nanny. We have A LOT going on.

 

I'm just feeling fried. I don't know what to do and how to react because there is always something new to react to. The rage attacks are directed at me when DH is not here and they HURT. It is all I can do to hold her. I managed to restrain her today for 30 minutes but then she must have sensed my weakness because she suddenly bolted and I could not stop her. I just physically could not. Luckily at that point she ran to her room and didn't throw herself into anything. She's also started biting and I have bruises up and down my arms and today I think she must have popped a vein because I have a lump on my forearm that is blue and swollen and hurts beyond belief.

 

We hired the nanny in the hopes that we could have someone help me restrain her in her loft bed when needed, as that is how we have managed her for the past two years (she needs total quiet and no stimulation for a few minutes) and we found out quickly that that isn't going to work. It takes both of us totally muscle strength to force her up the ladder while kicking and hitting and biting and spitting at us and then on Monday she threw herself over the edge saying she didn't care if she hurt herself and she hoped she did. Luckily, we were there to catch her, but still....

 

We've tried making a safe room with mattress and cushions, we've tried having her go to a quiet safe space where she feels safe and confined (she will sometimes hide in the drapes or in her closet and slide the door shut) but she will actively seek us out to hurt us- like, chase us all over the house knocking over furniture and hissing and clawing us until she's put someplace on her own a few minutes. Holding her door shut does nothing- she will fight for hours. She seems to have endless energy. And she can somehow get out of any restraining hold I can do. In fact, when she was a toddler we called her Baby Houdini because she could undo any straps and everything- car seat, etc.

 

I'm just at my wits end. She is literally abusing me. I'm sore from head to toe from the beatings and have popped almost every joint out of place trying to restrain her (I have Fibromyalgia and have bone spurs on hips and shoulders) so I am walking around (barely) with a migraine trying to do all of this and I am really just wanting to hide in a hole with some strong pain reliever.

 

I also have a 2 year old who got slapped a couple of times on Monday before I could get her out of range and I'm just SCARED for all of us. Believe me, I would not put a hand on her except she really is endangering herself while doing this too- like, throwing herself at the piano and picture window, screaming at furniture while tossing it over and rolling around or spinning or flailing with eyes shut tight while it's all going on.

 

I feel like I'm at my wits end. I am really opposed to hospitalizing her :( but I know that when we did an outpatient stint a year ago it really helped.

 

???

Manda

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Hi Manda-

 

I am sorry- I hope you have some relief soon.

 

My dd has rages- but not quite that bad- and she is only 36lbs, so I am able to bear hug her and keep it under control.

 

A couple of thoughts (that I haven't tried):

 

epsom salt baths- some say it calms them

kidscalm supplement- i think it is magnesium

meds- I would ask Dr K if there is some med to use temporarily to calm her (I am totally ignorant in this area- but very low dose of valium or something?)

 

Please keep us updated and best wishes for healing...

 

Eileen

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Manda:

 

I really feel for you right now. Have you seen any improvements since IVIG? I agree with Eileen about the Epsom Salts. I would add at least 2 cups to the water. And if Pixie does not want to take a bath, maybe you can just put the salts in a bowl of warm water to soak her feet. I would try to keep her feet in them for at least 20 minutes - maybe while she is watching a television show. Does motrin provide any relief? If so, then maybe doubling the dose since that would be a prescription amount? I have also read that high doses of calcium are anti-inflammatory. There are those sweet chewable ones in certain drug stores.

 

And remember that this could be the "flipping back of the pages." Our doctor forwarded his email correspondence to me between himself and Dr. K and Dr. K did mention that the next 3 months would be so up and down.

 

Keep us posted and we will be thinking about you.

 

Elizabeth

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Yes! Epsom salt bathes are great! Even my never-stopping 3.5 year old boy sits there as long as we let him. If you can find one with Lavender (it also has extra minerals like Zinc in it) - it can do wonders!

 

I also read that yeast (which tends to flare up like crazy when one is taking abx) can cause quite an insult on the body. I am not sure if your daughter on any anti-yeast or probiotics but perhaps that is something you could consider? You don't need Rx for probiotics (just watch out for those that have strep strands in them - don't get those).

 

I wish I could be more helpful! Take care of yourself, please, and be safe! For her benefit as well!!!

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I'm so sorry this is happening. My heart goes out to you.

 

A few thoughts:

 

1. I'm wondering if you can get something protective to wear under your shirt to protect your arms. There are swim tops made from similar material to a wet suit that you can get at an athletic store. Maybe if you wore something thick enough it would protect you. If you can't get out to shop, try online at REI.

 

2. Have you called Dr. K?

 

3. Our psychiatrist gave us a prescription for Clonazepam before we started antibiotics. I haven't had to use it yet, but it is supposed to calm them down quite a bit. If you're like me, you probably hesitate on stuff like this, but if she's in danger of hurting herself or the two year old, something like this might be worth a try until things get better.

 

Please keep us all posted on how you're doing!

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I agree with the idea of trying Ibuprofen (Motrin).

 

Is pixie on any psych meds? I don't know what to recommend but do be careful. When our dd was really bad last spring she got aggressive but it turns out much of the aggression was from the lexapro (ssri)...she had serotonin syndrome which caused some aggressive behavior (which made things worse, since at the time we thought it was pandas so we upped the lexapro further).

 

What antibiotic and dose is she on?

 

Hopefully you will get some relief from the IVIG soon. Are you noticing any difference?

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Things sound pretty rough for you guys right now. My thoughts and prayers go out to you and your family - hopefully there will be an end to this soon!

 

We have been lucky enough never to have experienced rages with our son. However, I did work at a group home when I was in university and I took a course at the time called "non-violent crises intervention" which I found to be extremely useful for my work. I worked with adults - both men and women - most who were larger than me - most experienced frequent rages and outbursts. This course taught us different holds and strategies to help safely restrain and calm the client. We were not only taught various safe holds but also what to do when someone bites, pinches, pulls hair etc. in order to release the jaw, hand, etc. Very useful. It was a full day course (possibly 2 day course) but it sounds like something that might help both you and the nanny work safely with your child. I'm not sure who might offer this in your area but maybe a local school might know?? Or a public health nurse might know or at least be able to look into it for you??

 

I know you are thinking - sounds great - but where would I ever fit something like that into my life while I'm in crises mode??? I'm not sure......I can't imagine how tough things must be for you right now - but if you can find a similar course and find a way to get there - I do believe it would be helpful for you. It would give you a lot of strategies to help keep you, your daughter, and the rest of your family safe.

 

Again - my thoughts are with you - you must be truly exhausted. Hopefully things will get better soon and you will see some relief.

 

PKM

 

 

:wacko: Yeah, I'm on a roll today. This is the first week DH is back at work (after being home all summer and then the few weeks at beginning of school year) and week 3 post IVig for us. She's in week 2 of school and week 2 of having our special needs nanny. We have A LOT going on.

 

I'm just feeling fried. I don't know what to do and how to react because there is always something new to react to. The rage attacks are directed at me when DH is not here and they HURT. It is all I can do to hold her. I managed to restrain her today for 30 minutes but then she must have sensed my weakness because she suddenly bolted and I could not stop her. I just physically could not. Luckily at that point she ran to her room and didn't throw herself into anything. She's also started biting and I have bruises up and down my arms and today I think she must have popped a vein because I have a lump on my forearm that is blue and swollen and hurts beyond belief.

 

We hired the nanny in the hopes that we could have someone help me restrain her in her loft bed when needed, as that is how we have managed her for the past two years (she needs total quiet and no stimulation for a few minutes) and we found out quickly that that isn't going to work. It takes both of us totally muscle strength to force her up the ladder while kicking and hitting and biting and spitting at us and then on Monday she threw herself over the edge saying she didn't care if she hurt herself and she hoped she did. Luckily, we were there to catch her, but still....

 

We've tried making a safe room with mattress and cushions, we've tried having her go to a quiet safe space where she feels safe and confined (she will sometimes hide in the drapes or in her closet and slide the door shut) but she will actively seek us out to hurt us- like, chase us all over the house knocking over furniture and hissing and clawing us until she's put someplace on her own a few minutes. Holding her door shut does nothing- she will fight for hours. She seems to have endless energy. And she can somehow get out of any restraining hold I can do. In fact, when she was a toddler we called her Baby Houdini because she could undo any straps and everything- car seat, etc.

 

I'm just at my wits end. She is literally abusing me. I'm sore from head to toe from the beatings and have popped almost every joint out of place trying to restrain her (I have Fibromyalgia and have bone spurs on hips and shoulders) so I am walking around (barely) with a migraine trying to do all of this and I am really just wanting to hide in a hole with some strong pain reliever.

 

I also have a 2 year old who got slapped a couple of times on Monday before I could get her out of range and I'm just SCARED for all of us. Believe me, I would not put a hand on her except she really is endangering herself while doing this too- like, throwing herself at the piano and picture window, screaming at furniture while tossing it over and rolling around or spinning or flailing with eyes shut tight while it's all going on.

 

I feel like I'm at my wits end. I am really opposed to hospitalizing her :( but I know that when we did an outpatient stint a year ago it really helped.

 

???

Manda

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I really feel bad for you. Has her rages been worse? My son's got worse during and after steroids. We have put him on Risperdal 1 mg twice a day and Clonidine .25 in half before bed for relaxation. tWhile he is still not resolved he is a bit better. Is she very anxious, I notice this is big for him. Right now you are transitioning to new things and this could be stressful for her. We give my son a schedule with a picture book AM and PM before and after school. If he does the things coopertively he gets a penny in a jar for each thing he did right. Also we have story cards for behaviors we want to modify. hey give him suggested things to do if he is feeling frustrated. I know it is hard to get them to choose the self regulation techniques. This is what I am struggling with. Try to make rewards things she really likes for example watching a movie together or playing a game with you. Make he consequence something she may dislike like no computer time. Try to ignore the neg attention getting things she is doing. The psych said take my two year old to my room and lock the door. Put away anything you don't want broken. I know my two year old is modeling bad behaviors and I am very upset about it. He does things to make her scream. My son also has started swearing, I don't know if it is a tic because he does it when he is mad. I have given him soap twice. The behavior therapis we had out said don't give attention to negative behaviors. Use alot of praise for wha you want her to do. Positive affirmation. Empathy with indifference. Have you had a behaviorist in yet? Contact your local MRDD. They can set up a plan for your home. Call me if you'd like. I am going through a similar thing but he is not as physical with mee but he is in meltdown mode and destructive. How is Pixie at school? Remember to stay calm. Here is a link to articles wrote by the behaviorist we had in last week. See if any of this may work. I have a lot of books I can suggest if you contact me. Was she diagnosed with ASD? I have a good website if so delphi forums. They deal with rages there also. Good luck. It is so hard!

http://www.cantonrep.com/search?q=boggia

http://forums.delphiforums.com/aspergeroasis/messages

Things sound pretty rough for you guys right now. My thoughts and prayers go out to you and your family - hopefully there will be an end to this soon!

 

We have been lucky enough never to have experienced rages with our son. However, I did work at a group home when I was in university and I took a course at the time called "non-violent crises intervention" which I found to be extremely useful for my work. I worked with adults - both men and women - most who were larger than me - most experienced frequent rages and outbursts. This course taught us different holds and strategies to help safely restrain and calm the client. We were not only taught various safe holds but also what to do when someone bites, pinches, pulls hair etc. in order to release the jaw, hand, etc. Very useful. It was a full day course (possibly 2 day course) but it sounds like something that might help both you and the nanny work safely with your child. I'm not sure who might offer this in your area but maybe a local school might know?? Or a public health nurse might know or at least be able to look into it for you??

 

I know you are thinking - sounds great - but where would I ever fit something like that into my life while I'm in crises mode??? I'm not sure......I can't imagine how tough things must be for you right now - but if you can find a similar course and find a way to get there - I do believe it would be helpful for you. It would give you a lot of strategies to help keep you, your daughter, and the rest of your family safe.

 

Again - my thoughts are with you - you must be truly exhausted. Hopefully things will get better soon and you will see some relief.

 

PKM

 

 

:( Yeah, I'm on a roll today. This is the first week DH is back at work (after being home all summer and then the few weeks at beginning of school year) and week 3 post IVig for us. She's in week 2 of school and week 2 of having our special needs nanny. We have A LOT going on.

 

I'm just feeling fried. I don't know what to do and how to react because there is always something new to react to. The rage attacks are directed at me when DH is not here and they HURT. It is all I can do to hold her. I managed to restrain her today for 30 minutes but then she must have sensed my weakness because she suddenly bolted and I could not stop her. I just physically could not. Luckily at that point she ran to her room and didn't throw herself into anything. She's also started biting and I have bruises up and down my arms and today I think she must have popped a vein because I have a lump on my forearm that is blue and swollen and hurts beyond belief.

 

We hired the nanny in the hopes that we could have someone help me restrain her in her loft bed when needed, as that is how we have managed her for the past two years (she needs total quiet and no stimulation for a few minutes) and we found out quickly that that isn't going to work. It takes both of us totally muscle strength to force her up the ladder while kicking and hitting and biting and spitting at us and then on Monday she threw herself over the edge saying she didn't care if she hurt herself and she hoped she did. Luckily, we were there to catch her, but still....

 

We've tried making a safe room with mattress and cushions, we've tried having her go to a quiet safe space where she feels safe and confined (she will sometimes hide in the drapes or in her closet and slide the door shut) but she will actively seek us out to hurt us- like, chase us all over the house knocking over furniture and hissing and clawing us until she's put someplace on her own a few minutes. Holding her door shut does nothing- she will fight for hours. She seems to have endless energy. And she can somehow get out of any restraining hold I can do. In fact, when she was a toddler we called her Baby Houdini because she could undo any straps and everything- car seat, etc.

 

I'm just at my wits end. She is literally abusing me. I'm sore from head to toe from the beatings and have popped almost every joint out of place trying to restrain her (I have Fibromyalgia and have bone spurs on hips and shoulders) so I am walking around (barely) with a migraine trying to do all of this and I am really just wanting to hide in a hole with some strong pain reliever.

 

I also have a 2 year old who got slapped a couple of times on Monday before I could get her out of range and I'm just SCARED for all of us. Believe me, I would not put a hand on her except she really is endangering herself while doing this too- like, throwing herself at the piano and picture window, screaming at furniture while tossing it over and rolling around or spinning or flailing with eyes shut tight while it's all going on.

 

I feel like I'm at my wits end. I am really opposed to hospitalizing her :( but I know that when we did an outpatient stint a year ago it really helped.

 

???

Manda

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It was a tiny hotel bar from Bath and Body avocado. It was only a second so he would get the taste on his tongue. I am not sure where these bad words are coming from he is only 7! He used the f word. We don't ever use that word. Just the other day he was upset when my daughter said freakin. I explained while it is not nice it is not a bad word. Well now two times in a week he used the f word at me! It is hard to ignore that. I already have my two year old telling us all to shut up since my others have used that word so much. Now this is feeling like a family crisis. It is like everyone is picking up on the elevated language. My 13 yr old is so annoyed with him. She won't let anything he does go unturned, then he runs after her, the baby is screaming from his picking and my 10 yr old wants away from him. The older two are the most affected because they know he shouldn't be doing this. They resent what he is getting away with. I am taking them to counseling next week. Isn't this exhausting? I have the baby's teachers coming out today to work on her demanding, screaming and mean words! I wonder where she has picked it up from?

 

On the up side, he is doing well in school according to his teacher last night at conference. He shows no signs of frustration there and is trying very hard. I guess it is only us he can't stand!

SOAP??? You're kidding, right??? OMG
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As for the swear-like words (like freaking, darn, etc), those are on tv a lot in cartoon like SpongeBob. Well, I don't exactly know about the freakin, but I know darn and stupid are. When I'm in the room with my kids, their in the middle of watching it and I have to start my speech, "That's just not nice, is it. You know we're not suppose to do that." If someone was wathcing me they'd probably find it humorous. Yeah, I should turn off the tv and not let them watch it, but with 3 kids, I just want my 25 minutes of quiet!

 

My 3 year old loves the word "darn". When I tell her no it's a bad word, she's learned to say "I didn't say it, Mommy, the Little People said it" because she's playing with them while she says it. Yeah, pass the blame onto a piece of molded plastic. I swear I have to get rid of those Little People. They swear, they land up in pretend cemetaries my son built. They are real trouble makers!

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Hi Manda - I am so very sorry for what you are going through. I hope things improve. I'm sure you have considered if there might be a co-morbid diagnosis in addition to PANDAS - but I know how hard that is for anyone to figure out. A decision for hospitalization must be the most difficult crossroads in a parent's life. At a recent conference, I was able to meet a number of people who had severe OCD (not PANDAS) who were hospitalized, and greatly helped by that. It was good to hear the perspective of those that have been there. I have heard very good things about Ramuda Ranch.

 

Whatever you decide, you have my empathy and support. It is clear how much you love your child. Do whatever you need to do to keep her safe. If you think she may harm herself or anyone else in the house - then that maybe the time to seek help, even if for a short term period. Hope to hear more positive news soon.

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