browneyesmom Posted January 2, 2011 Report Posted January 2, 2011 I really hate to even consider this; but, has anyone tried using soft restraints during PANDAS rages to prevent harm to PANDAS child & others in home at the time? If so, can you tell me a little about them... where one gets them, how helpful they might be?
browneyesmom Posted January 2, 2011 Author Report Posted January 2, 2011 I am sitting here in tears, after yet another violent episode, where she was attacking both me and my husband as well as pulling her hair. Earlier today, she was biting her wrist & could only stop when I gave her some gum to chew instead... after trying several other things. I do not want my child institutionalized... I want to wait this out while she gets more IVIg and continue trying to help her at home, where we understand what is happening and why. How did we get to the point of even considering soft restraints for this amazing, wonderful, precious child?? :'(
peglem Posted January 2, 2011 Report Posted January 2, 2011 Lots of experience with restraint here! I have come to the conclusion that restraint only works with the consent of the child. Once my daughter got to where she could understand that she was hurting herself involuntarily during these episodes (head banging, biting) she has been willing to allow some restraint- though too much accelerates the rage/panic and makes things worse. We actually got insurance to pay for a helmet, but the one they provided is hard shelled and hurts like crazy when she head butts- however she cannot remove it herself. The one we use is just a karate helmet from karatedepot.com. It is soft, she can remove it herself, but will leave it on when she needs it. Now, as far as getting beat up by my child, I've kind of just accepted that as inevitable and work on minimizing damages. Honestly, she's not really angry when this happens to her- she is terrified and comes "at us" in an attempt to get help- but her body is automatically responding as though she is in grave danger and she can't control the striking out very well even though I can tell she's trying to pull her punches...So, I hold her as gently as I can (which is not very), and assure her very calmly that I'll help her get through this and we can deal with it. When things are beginning to calm, I congratulate her on finding ways to deal with it... We can't stop it from happening, but we can learn to deal with it. The helmet is the only device we use-
browneyesmom Posted January 2, 2011 Author Report Posted January 2, 2011 Thank you for responding, Peggy. I wasn't sure if anyone would - feeling kind of alone on this atm, but I know I have to keep her safe somehow. We have tried the calming approach... her counselor gave us handouts to help us assess what stage she is in and what things we can do to help her and what to avoid. We utilize it, but it won't prevent damage to her or others during an episode. She is very ill at this point and we are seeing Dr. B in about a month - just got out of hospital where she got first IVIg infusions. In my DD's case, she has clear intent to harm either us (usually) or herself (frequently) & episodes can last for up to 2 hours with a strong level of intensity & strength. I completely hate having to be at the point of even considering using them; but, right now, I feel like I'm running out of solutions to keep us (her included) safe. Obviously, this is something that would only possibly be utilized during the violent part of the episode & released as soon as she moves into another phase. For her, it seems it would be more helpful also in the sense that there are times she does not want to be soothed by touching, so holding her while she is violent only escalates her. She also will sometimes go outside without appropriate clothing/footwear and do unsafe things, so that is another concern in her case. I looked up helmets at that site, and I guess if she were banging her head, it would help that. She has not done that for a long time & we were able to handle that. I was thinking that the soft wrist & ankle restraints would be helpful as she seemed less agitated when the paramedics & nurses used those with her rather than trying to hold her to restrain her.
PhillyPA Posted January 2, 2011 Report Posted January 2, 2011 My 8 year old son goes through periods of rages. Just last week he was hitting me and crying. He also is drooling during these rages. As he is hitting me he was saying "I love you Mommy". I feel so bad for him. I pray all the time that Dr. Latimer can cure him and he can get his life back. His father is 6 feet 2 inches. He is really tall for an 8 year old. I hope he gets better before he gets really big. So far I can take the beatings. I don't think that he would react well to restraints. My son was the sweetest child before he got pandas. Such a charming, social, personable little guy. Always helped me around the house. Charmed the pants off of everyone he met. I miss him so very much. It is so hard to watch the suffering every day.
browneyesmom Posted January 3, 2011 Author Report Posted January 3, 2011 (edited) It is tragically hard to watch the daily suffering. When this started, she was 9 & we could manage it better. My ex (her dad) is a little over 6 feet tall and now, at 11.5, she is stronger, especially during these episodes. When they are violent ones, if she remembers after, she is so upset at what she did/said... heart-wrenching. Occasionally, they seem limited to OCD and/or movement tics & sometimes, she cries out for help - or writes it, when she can't talk, "Help me, Mommy". My heart is shredded for this beautiful, amazing child who is suffering so much... I pray that Dr. B will be able to help her restore her life - they lose so much. My DD11 was also just the sweetest child before PANDAS. She never had tantrums as a young child... so thoughtful and sensitive to others, so polite, loving and giving - I miss her terribly. I know she is in there and I have to continue advocating to help restore her health from this horrible condition. It breaks my heart to watch her endure this. My 8 year old son goes through periods of rages. Just last week he was hitting me and crying. He also is drooling during these rages. As he is hitting me he was saying "I love you Mommy". I feel so bad for him. I pray all the time that Dr. Latimer can cure him and he can get his life back. His father is 6 feet 2 inches. He is really tall for an 8 year old. I hope he gets better before he gets really big. So far I can take the beatings. I don't think that he would react well to restraints. My son was the sweetest child before he got pandas. Such a charming, social, personable little guy. Always helped me around the house. Charmed the pants off of everyone he met. I miss him so very much. It is so hard to watch the suffering every day. Edited January 3, 2011 by browneyesmom
rockytop Posted January 3, 2011 Report Posted January 3, 2011 (edited) h Edited May 26, 2011 by rockytop
airial95 Posted January 3, 2011 Report Posted January 3, 2011 Our son is still young, so right now, when he needs it, I physically restrain him. It's tough, and even though he's only 3, he's already more than half my height so it's getting tougher each time. We bought a swing, like a hammock, and just put it in his room this week as a calming place for him. It's made of lycra, and it wraps around him. I know they're used for autistic kids, and kids with sensory issues. I can't tell you how well it works yet, we just got it. But when I restrain him during his most violent times, I noticed that rocking with him would calm him - so we thought we'd give it a try. It's not restraining, but it is secure, and snugs up tight around him to give him that secure feeling. Just a thought. I know others have used weighted blankets that are used for children with autism too.
browneyesmom Posted January 4, 2011 Author Report Posted January 4, 2011 (edited) Well, after yet another trip to the ER last night after an episode while out shopping, MD there called pediatric neurologist, who told her not to give Ativan again (I had just told her that I thought it made her worse) because it can increase symptoms. Aha! I wasn't imagining that! He suggested Risperidal instead, so we have her on that 0.25 mg BID now & able to increase to 0.5, if needed. We see her pediatric neurologist this am and her pediatrician this afternoon... going to ask if they are consulting with Dr. B on her case or not - was very hard to get those answers last week during all the holidays & snow. Not combative this am on the Risperidal, but not really cooperating either - does not want to take a bath again... we may have to go as she is, but at least he might get a better glimpse how ill she is. Oh... and ped neuro told ER doc last night that it is too soon for her to have IVIg again - just had 2 doses the 2 days before Christmas - we need to find out about that too. Edited January 4, 2011 by browneyesmom
Mary M Posted January 4, 2011 Report Posted January 4, 2011 Browneyesmom, I painfully remember the days of violence and rage. The trip to the Children's Hospital will forever be etched in my memory. You are not alone...even though you feel desperately so. This forum will become your strength and your guide. You story sounds so similar to ours. Many weeks and the five weeks following IVIg were very difficult in our home. We, too, as one of the other posters mentioned were able to create an environment that was minimally invasive for our dd at home while her brain tried to heal itself. I often used my body to restrain dd's aggression. It was sorely ineffective but there is little else to help. Physical restraint, at times, seemed to only intensify our dd's rage while at other times gave her some support. Each moment needs to be evaluated for safety, security. No one is better qualified to do this than the child's own parents....and believe me as much as I believe that, I often felt inadequate to determine what to do. When you are in the midst of it...it is hard to imagine this can ever get better...but there is hope. IVIg and abx are effective. The brain just requires a tremendous amount of time to heal. It has suffered such an assault and needs time to heal. Healing will come... With hope, Mary
smartyjones Posted January 4, 2011 Report Posted January 4, 2011 not sure if this would help . . . i seem to remember some time ago, there was discussion about a weighed vest that was helpful for some kids. it was like a jean jacket vest and had weights. i have no OT background so i can't remember the theory. would something like that be helpful. i think some found success in putting on the jacket when trouble was brewing. anyone?
browneyesmom Posted January 5, 2011 Author Report Posted January 5, 2011 Today was a much better day... I'm going right now to start a new thread & post an update.
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