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Horrible evening here


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Oh dear Lord... she just had another rage episode, during which she threw one of the dog's heavy bones at my husband's knee, so he took her Nook that was playing music and calming her somewhat. I broke down and started crying, sobbing & shaking, really, for the first time during one of these... he tried to comfort me and she got more upset, separating us... what a horrible, horrible evening! :~(((

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I feel like I failed on so many levels this evening.... she totally freaked out, starting crying hysterically and thrashing when he took it, so I gave it back and she calmed some.

She's been on homebound instruction for over a month, but is falling further and further behind in classes. We see Dr. B on Jan 26 and I hope he will be able to help, but I don't know...

My breaking down like that has never happened before. I'm a nurse and usually seem to be able to put myself in "nurse mode" when these happen, but this evening, I realized that I'm stuffing my own feelings with all this and how terrified I am... I don't know if I will ever get my daughter back and I'm so scared.

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Denise, I am really sad for you tonight. So sorry you are having a rough time again tonight. I am just throwing this out there, and this may be totally useless in terms of helping, but it's all I have. I suggest, until you have appt. with doc B., that you spend as much time outside having fun. Forget school right now as much as is possible. Take her out and let her be in nature somewhere- go for a walk, hike, whatever. Just spend as much time outside having fun. It is becoming more evident from studies that the less time children are outdoors, the more psychiatric issues they have. I know this is PANDAS, but I think it still applies. Get her tired. Let her get as much exercise as possible so that she is good and tired in the evening. Then, a nourishing meal, and hot bath, and melatonin. Get her to bed as early as possible. I hear the Melatonin is a life saver for these cases. Then you have the evening to collect yourself and recharge.

 

 

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I'm so so sorry, Denise! I can really relate...my DD raged on and off for years. Some days the rages were quite violent and they could last up to two hours. For a period of time we had up to 3 rages per day. She has punched holes through walls and doors, broken lamps, and even my finger.

 

It really wears you thin! I honestly don't think there is anything wrong with you breaking down every once in a while. You're a nurse in your profession but at home you are Mom. Your daughter needs to see how it affects you. For the most part, I usually remain calm and collected. BUT, every once in a while...usually when I am on overload or not feeling well...I will lose it. I'm not proud of it, but my daughter needs to see that I'm human and I get upset.

 

What stopped the rages was HD IVIg and putting her on HD Augmentin XR. BUT, it has always taken 10 weeks for the infusions to kick in.

 

Is your daughter completely dye and additive free? I have found that dyes in particular send my DD over the edge very easily. She gets very psychotic-like.

 

I hope things get better for you really soon. Hang in there and remember, you are human. It's okay to fall apart every now and then...

 

Nancy

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Listen hon, all of us who endure this really extreme behavior with our children lose it from time to time. The stress is just too great, and so horribly, horribly scary. Forgive yourself.

 

You will get your daughter back- you're working too hard not to. And I have to tell you, though it seems inconceivable right now, you and your daughter will get something positive out of this in the end.

 

I'm praying that God will bless you with some peace very soon and Dr.B will have some answers for you.

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YES, YES, YES. Great suggestion. When my daughter was at her worst she rode horses and worked at the stables almost every day. She came home exhausted and slept really well. It gave her a sense of accomplishment. This is really what saved her during the worst of times (me too, as I finally got some respite!).

 

Also, lots of epsom salts baths! That's very calming. And keep lights down low, talk in low voices, try and keep the household calm. Quiet reading, keep demands and stress to a minimum. Calming music. I did lots of snuggling with my daughter.

 

 

I suggest, until you have appt. with doc B., that you spend as much time outside having fun. Forget school right now as much as is possible. Take her out and let her be in nature somewhere- go for a walk, hike, whatever. Just spend as much time outside having fun. It is becoming more evident from studies that the less time children are outdoors, the more psychiatric issues they have. I know this is PANDAS, but I think it still applies. Get her tired. Let her get as much exercise as possible so that she is good and tired in the evening. Then, a nourishing meal, and hot bath, and melatonin. Get her to bed as early as possible. I hear the Melatonin is a life saver for these cases. Then you have the evening to collect yourself and recharge.

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You probably won't agree with me right now. But IMO breaking down in front of your daughter and husband gave them a gift. You showed your daughter that no one - not even super mom - is always in control of her emotions. Imagine the pressure on a kid who rages if they never get to see their own parents lose control once in a while. You gave her "permission" to be less than perfect. You showed her that everyone "fails".

 

And you allowed your husband to be there for you, to comfort you. You allowed him to be the strong one and allowed him to be needed, to have a role that he could play well, even if it was for too short of a time tonight.

 

So hats off to you! Belly up to the bar with the rest of us mortals and celebrate the fact that you care so much, love so deeply, that dang it, you bawled because losing what you love most hurts so unbearably. And you may have saved yourself from a nervous breakdown in the process ;)

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Yes, in the evening, low lights, soft music, epsom salt baths, quiet talks while she is in the tub, head rubs and back rubs before bed. Also small amounts (.3mg) 2 hours before bed of melatonin followed with .3mg at bed. (Chop a 3 mg tab into ten pieces). Anxiety is always worse at night, limit conversation and stimulating stuff(tv, games, playing, )Did this three years, yes three years and it saved our evenings.

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I so understand. Just a couple days ago, my dd's ODD kicked in full gear the whole day and after walking on egg shells all day and then her starting in on my 2 1/2yr grandbaby, I ended up reaming her out (practically flipping out) which sent her into a full-blown rage. I felt bad, guilty etc. and ended up in the bedroom with her for an hour., while DH was consoling the baby. Its like you get mad, then you feel guilty cause you know they can't help how they feel; but some part of me thinks they still have to somehow be accountable for thier actions.

 

Anyway, I had apologized to my DD for hollering and said I'm only human, her response was well then how come you never cry? I was shocked. I have cried so many tears that I don't seem to have any left. I hid them from her trying to keep her calm. Maybe I was wrong. Maybe you did a good thing. She told me that she has never seen me cry. Something I never thought about.

 

I don't know but I'm sending you cyber hugs and if I could just reach right through this screen I'd give you the biggest hug. I can't wait for you to see Dr. B. Once you just even meet him and talk to him, he will put your heart just a bit more at ease. My DD in a couple weeks has come so far and has been showing more like herself/ after months at the ocd clinic could'nt help her. Your on the right track; have hope.

 

Incase you did'nt know, my DD only went to less than one month of school this year and has been doing homebound schooling also. She is also way behind, but after meeting with Dr. B, I still have hope that she will pass to the next grade. I'm saying this and I know she will not be in school in the near future. Right now, just consentrate on letting her get better and heal. Push the thought of schooling way in the back of your mind. It really is not that important. You and your family come first.(((hugs)))

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Thank you all for sharing and for your encouraging words. Perhaps it was good that they both saw me break down into a lump of tears last night; sometimes it's hard being the one to hold it all together. He apologized this morning for last night. She is still sleeping, but when she wakes, we ARE going out to walk the dog!

 

Epsom salts are on the grocery list; however, I've been getting her whatever scented bubble bath she wants, but last night, I told her to brush her teeth and that was actually the start of the episode... she said she could not get wet, but would not tell me why - said it was embarrassing and didn't want my husband (who was upstairs at the other end of the house from us) to hear.

 

I guess my concern about school is that it would be so hard on her to lose a grade & be held back, so that worries me at times.

 

Unfortunately, Tuesday evenings and every other weekend on Sunday's are tough because she is with my ex for visitation during those times and almost can count on an episode when she returns home. Maybe I better see if he will agree to give her the Risperdal when she is with him, before she arrives home... I don't know, maybe that would help. I wonder though, if the reduced IVIG she got recently is part of the problem too.

 

Ok, she's up so I'm on now... oh, how I pray this is a better day; I'm so tired...

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I read your post and replies with bone-chilling recognition. I have gone through many similar days, and am noticing that the rage episodes spike higher as my daughter gets older. She is now 8. We have done periods of antibiotics, relieving the rage symptom by about 80-90%.

 

In the midst of an episode, as a Mom, I feel so helpless and vulnerable, watching this demon take over my child and my family. The level of stress and arguing in my household is so high, at times I feel like I just want to disappear!! I know your frustration. You are not alone. We all cry, we all lose it, we all feel like we are on a roller coaster ride, not sure when the next hill is going to have us all holding on for dear life.

 

What's so hard in those moments is to try to create something rational - their behavior is so bizarre, so out of control, how can we turn it around??? I wholeheartedly agree with the parents who say that outdoors and activity truly do help. But it is harder in winter months to find those outdoor activities. My husband works on a farm, and being around those animals does help all of us find peace of mind, if it is only for that time.

 

I am still searching for a behavioral therapist to try to help us with the family dynamic. I don't think anyone "gets it" unless they live it. Period. You can go for an hour or two and walk away from an appointment thinking you are getting somewhere, and then you walk in the door of your home and WHAMMO - something sets your child off and "bye bye rationale". It's almost as if we need a super-nanny for PANDAS!! I'd welcome that!!

 

Good luck, God bless and know that you are not alone.

Noelle

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Come back and let us know how today is going. I know the dread you feel when they wake up in the morning in this state.

 

I am sorry you had to go through that again. I have to say that every time I "lose" one of my boys, my biggest fear is "what if THIS TIME I can't get him back?". That's how I felt with the recent psycho rages with the orapred. It is so scary. I feel very confident you will get to the bottom of it. It just may take more time than you would like, as it is for most of us.

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Would you believe that this morning she cleaned up the mess she made in the kitchen last night, we danced for a while and she is now making deviled eggs? I feel like I'm on a roller coaster!

 

Oh... and I did talk with her about why she "does not want to get wet" with the bathing & brushing teeth. She eventually shared that is when she thinks most of her 'accidents' (urinary) happen. We discussed some options for managing that and I assured her that we are still working with her medical team to help her get better... please Lord... I never want to mislead her; let me be right that they can help!

Edited by browneyesmom
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I know what you mean about misleading her. I have been telling ds6 for so long that I am going to fix this. At this point I don't even want to say it anymore b/c I'm afraid he is starting to lose faith in me. I think he is starting to "get it" though. Last night, he asked for ibuprofen. He can now tell me that it is coming on even before I know for sure myself. How empowering for him to finally be able to understand that he has "tools" to help him get through a bad day.

 

Keep on plugging she will see that you mean it when you beat this thing in the end. She will love you for fighting for her.

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Hi All!

 

I'm a newbie here. DD11 was diagnosed PANDAS at the end of December and she is under the care of Dr. K. She is nearly at the end of her 21 day "testing" of the steroid burst and she is on Augmentin. Thankfully, the positive results are really kicking in. She has had 2 full days of school this week after beeing out of school since the end of October.

 

To browneyesmom and all the rest.....we have had some HORRIBLE evenings (and mornings) here too. I have broken down a couple times this month and then poor DD thinks I don't love her, this is all her fault, etc..... This is the most horrible thing I have ever experienced and some days I feel like my soul had died. LLM -- I loved what you said -- its so completely true. Its shocking for our kids when the realize that we are human too and that we can't just fix everything -- even on the 3rd or 4th try. But the child's frustration has to come out too and its going to fly out at the person with whom they feel most safe -- mommy. Thankfully, we've had very meaningful and tender make-up moments after these awful meltdowns. Make sure you do too and everything will be fine.

 

I'm so eager for her to get better so our family can start to heal. We are all so raw.

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