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sosudden

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  1. I believe getting dd10 tonsils and adenoids out was also a very important part of her continuing to heal. Not an overnight change for us - but part of her answer to healing.
  2. Fingers crossed tight for you!!! And my 2 cents worth, although I do not know much about Lyme, is do not pass up the IVIG. It is what brought my dd10 back from the depths of nonfunctioning and was the beginning of her truly healing. For us it was not overnight fix of everything, but writhing movements stopped after 2nd day infusion, then tics within a few qeeks all gone. OCD and other symptoms are taking a bit more work but progress is being made. IVIG also was not covered by insurance most of the time so I say do not pass it up.
  3. Hi missmom! Thanks! I too just want to help where I think can. This disorder is just so crazy and roller coaster doesn't even give it justice, right? And what works for one does not always work for another... I have found such support and hope by reading certain posts at certain times. ((Hugs)) to you and yours!!
  4. As things are coming together for Sara and her family (us:) I can't help but reflect on this journey. JANUARY 24th 2012 - A day I will never forget. I was at work, trying to actually work, while trying to figure out what the ###### was happening to our beloved little girl. She had slipped away and I was determined to help her. I googled "OCD AND MOVEMENTS" and Saving Sammy popped up. I only had to read an excerpt and watch a video of him moving to know....I literally screamed "This is what my daughter has!! There is help out there!!" Approaching 1 year since official diagnosis of PANDAS/PANS by Dr Kovacevik and IVIG therapy. WOW! Thought I would compile a "Cliff Note" version of our journey. I am hopeful I will be able to write a book myself someday. This has been such a struggle finding help. I have had to research and connect the dots and take the comments and etc etc etc. I have found that the PANDAS/PANS "family" is one of the most supportive, smart, engineering, pioneering, caring, non-judgmental group of people I have ever "met" It sucks that our kids (and families) have to suffer in such an extreme, dramatic, confusing, scary, all-encompassing way. Sucks!!! What an amazing group of brave kids too!!! WOW!! This journey is not "hardening" me as it could so easily do, with the naysayers, the "doubters".... Oh I have moments of weakness, moments of wanting to scream and claw at the medical establishment that has rolled their eyes at my daughter and me. Sometimes the only thing a doctor has said is "This is all anxiety. She needs to be on Risperidol". Saying this without even talking to, asking questions of, or assessing my girl. Weird, huh? Doesn't that sound like the opposit of what a good doctor should be doing? Listening to the patient first??!! I am typing this for me, just to be able to look back at this crazy year in just a few paragraphs (as opposed to the 5 binders I now have in a backpack under my bed;) Also for anyone in this fight, maybe there might be something that can help their kiddo too. And, last but not least, one of the amazing parents out there may see similarities and be able to offer ME and mine some advice! Some Important Dates: (history of multiple strep infections, chronic severe pharyngitis) August 2010 Virus = pale, dark circles, looked different, acted different, NO energy, fatigue easily, constantly felt short of air, achy legs, chest pain, withdrew from everyone and everything, hated school, repeated certain sayings, sudden and SEVERE weather phobia, migraines. Doctors did not test for anything but thought probably mono or EBV. Lasted for weeks. Coughing and forceful exhaling thought was allergies. Allergy testing = negative and allergy medications = NOTHING helped. (Only in retrospect did I see that the vocal sounds were a tic). August 2010 - July 2011 Peeing and drinking water ALL of the time. Doctor checked for UTI and diabetes=negative. Continues with weather phobia. This could be dibilitating -- as in scared to get out of the car when the sky was completely blue??!! Doctor explained it away as "normal". Really?? Lots of kids scared of tornadoes etc, he said. This was the beginning of me slowly realizing that "mental" or "psychological" health is a whole different ball of wax!!! I just knew there was more to this....her personality was changing... August 2011 Started 4th grade, got the FluMist, had 2 molars pulled, pharyngitis = THE PERFECT STORM September 2011 - October 2011 The tics began, eye rolling, eyelash fluttering, squeaking, grunting, tapping, spinning, falling, dropping, circling. The OCD came on strong. Nonstop, all-consuming obsessions and compulsions. At this point she really was just a shell. She could not "talk". She startled. She slept walked. She barely ate. She had migraines. She saw "black circles" in her field of vision. Her color would go from pale to gray to yellow to green and back again. She couldn't say names or numbers. She couldn't watch TV or look at the computer. She stopped reading. She stopped writing (her PASSION!) IF she went to school she spent all her time in the Nurses office until they called me to come get her, about 2 hours at the most. She would get home and pace, tap, circle, fall, roll - until she eventually would crunch down behind the cusion of "her" big chair. Our once super smart, brilliant author, talkative, engaging, creative, sweet, charming, oldest of 4 daughter was slipping away right in front of our eyes. December 4th 2011 Finally got in to see Child Psychologist after waiting for weeks watching daughter decompensate. Official diagnosis, are you ready for this?? Severe OCD, Transient Tic disorder vs Tourettes, ADHD, Depression, ODD, Hypersensative Sensory processing, "BiPolar" tendencies. Are you SERIOUS??!! My husband and I are in COMPLETE shock!! My daughter, on the other hand, was lost in fear in her own scary world. Our daughter who had the world at her fingertips... How in the ###### could this be happening??!! December 2011 After 2nd appointment Psychologist is concerned, says there HAS to be something medical going on. We need more tests. She can barely open her eyes when out in public. Then, our daughter starts having strange movements. Writhing on the floor. She can't physically sit still. She tries and it breaks my heart into a million more pieces.... She spends all of her time writhing, only way I can explain it. Then she adds in headstands - headstands anywhere - the house, her bed, the car, out in public - anywhere! She can't help it...writhing, headstand, neck bend. Then compulsion, compulsion, compulsion. She is exhausted and terrified. So are her little siblings. And so are her parents.... to be continued............
  5. So sorry to hear your kiddo is in this spot right now We have given Valerian root as well - the elixir. Hydroxyzine is RX but helped a bit. Passion flower. Totally Calm kid. We have started CBT/ERP a cew weeks ago and it is amazing the results!!! But I have to say -it there is NO WAY she could have participated any sooner. And at her most anxious really not much helped. That is PANDAS/PANS I think Hugs to you all and hope this flare can get under control soon!
  6. Don't have time at moment to google... Jennifer Espisito was on Dr Drew. Talked about being misdiagnosed for years... PS: Dr Drew just rubs me wrong...anyone else?? I think he would blame it all on conversion disorder:( Will look into more when off work... BTW -i my dd is doing, dare I say, great! Want to post her story soon! There is hope!!!(
  7. Ko's mom A thought about the subway/ipod situation. What a great ERP to set up -but this is where I think you and her would need guidance and a plan of course (a good therapist is priceless). This would also NOT be a starting point for ERP as sounds very intense. But work up to - riding on the subway without her ipod. Sounds cruel I now. But if she has the CBT on board, and you as her trained coach, she could retrain her brain that not having her ipod (simply because she forgot it, not that she can't ever have it) is not going to make anything bad happen. She does this by exposing herself to the situation and at the end nothing bad has happened! Takes work and time and systematic approach but is doable. Give her and yourself big hugs!!!!! These kids are so smart and brave!!!
  8. LLM - that was awesome!! I do think it is important but had you asked me 9 months ago or even 3 months ago - well I know MY brain would not have been able to even believe my DD could participate in anything like this! When symptoms are first coming on it is likely impossible to attempt this type of therapy (at least in our case DD was "gone") I agree about the raging - no "training" can be done during -safety is the main focus. We don't have as much experience with rage - although she did rage during 1st six weeks of initial symptoms --- punching walls, kicking holes in walls, throwing over chairs, attacking brother, screaming and growling. So back then, safety was our concern (we were all in such shock I don't think I could have been taught to be her coach at that time either.) We have set up a reward system. I wonder if that would help for rage --- I don't know?? I won't go in to detail here but this system has helped immensely! Another thing I will add about us during this journey -- it truly takes time to heal from this. All the medical healing, all the psychological healing and time. So like LLM, I agree, when you and your child are ready, the lessons to be learned through CBT and ERP are priceless. ((hugs))
  9. As far as the make-up anxiety: Event: Putting on make up to go to Thanksgiving dinner. Thought: She has to fill this in....for example...If my make up is not perfect people will laugh at me. Feeling: She has to fill this in...for example...Fear. Embarrassment. Anxiety. Panic. Behaviour: Sweating. Undoing. Redoing. Crying. Being late. Avoiding. If she is capable (not too upset) have her write down some answers to questions such as. Have you ever put your make up on wrong before? Have people ever laughed at you and told you your make up is not perfect? Have people ever told you your make up looks bad? Have you ever thought someone else had their make up on wrong? Did you laugh at them? Did it make you not like them? Answer as many questions as she can about this thought. Then ask her how realistic the thought is. There are more steps and it gets more in depth as you go through it but it is a start, ya know? Oh, and have her rate her anxiety before and after you go through the exercise. And in a sense, for my DD anyway, going through some of these is ERP in itself - just thinking through it. ((hugs))
  10. Well I wondered how all of this would work for my daughter as well!! She has never been afraid or "OCD" about germs or anything tangible really so I understand where you are coming from. I am at work so if I can't spit it all out now I will try to get back... Plus wanted to ask if your child also had the fast heart rate - I can't remember if you posted once about that? OK, well this is how the book explains anxiety. Anxiety is a FEELING. So first there is an "event" then there is a "thought" then there is a "feeling" then the "behaviour." Retraining the OCD and anxious brain takes a lot of work and repitition (Hmmm something our kids are good at eh? We can't change the feeling until we change the thought. And the anxious mind works in 2 ways: It thinks only the worst thing possible will happen (which is not realistic) and it also overestimates how "bad" that something would be if it did happen. So here is an example from my DD10: Event - I have to go to school. Thought - I am going to pass out because I am light headed. Feeling - Scared and Panic and Anxiety. Behaviour - Avoidance. Temper tantrum. Crying. Seeking reassuarnce. SO, DD10 has to learn to change the thought. And this is where we are trained by therapist to help her apply CBT (and use ERP.) CBT involves lots of things but one of the main things is realistic thinking. This takes practice and she is resistant sometimes but rewarded for working on it. I want to add that this is total parental involvement because we are being taught how to help her help herself. How likely is it that she will pass out? Has she passed out before? And what would happen if she did pass out? (Her response is always that she will die which becomes another "event" we have to walk through). Does she know anyone else that has passed out? Did they die? DD gathers as much information to the contrary of her unrealistic thought. Writes it down. Examines the evidence. Applies realistic thinking. You are supposed to start with the smaller anxiety-producing situations to get some confidence building. Now, as for ERP, DD fear is being light headed, so we recreate situations that make her feel that way and she works through it and the habitual nature of ERP eventually decreases the anxiety. ERP has already worked on her fears about her heart rate going too fast and her feeling dizzy!!! We don't ERP those anymore!! Also, when doing CBT/ERP it has to be a systematic approach. A good therapist I feel is necessary to guide you through this with your child. The book helps you understand and practice but can not replace a good therapist. ONe more thing I must add. When DD was at her worst there is NO way she could have done any of this! No way at all. So if you don't think your child is ready yet, as she heals through the PANDAS/PANS teartment, she will eventually be able to learn how to control her anxiety through this. ((hugs))
  11. Wish I had time to type more but...IVIG was the kick start to DD10 healing for sure!! It "brought her back" so to speak. She had IVIG Feb 2012 with Dr K. I discovered PANDAS/PANS January 24th 2012 and we got IVIG in Feb. DD10 was basically nonfunctioning. (Had been a high functioning, highly intelligent, curious, creative, strong, talkative, compassionate, amazing writer and more). The IVIG stopped the headstands and writhing movements by the end of the 2nd infusion!!! The tics disappeared over a week or so. The OCD remained. We then discovered, treated and got rid of co-infections -- and she is 9 months out and doing the best she has done in a year!!! She had one flare in June 2012 (this is when we discovered co-infections). She had her infected yukky tonsils and adenoids out in July 2012. She is a work in progress but I say we would not be where we are without having done IVIG!!! There are almost zero compulsions - really just reassurance seeking which we are able to be in intense CBT/ERP now. (She is kicking butt!) We ask ourselves if it is even OCD anymore??!! I am sending good positive thoughts your way!!! Also check out this book if you haven't already: Helping Your Anxious Child: A Step by Step Guide for Parents. ((hugs))
  12. Helping Your Anxious Child: A Step by Step Guide for Parents. This is something concrete for parents to read, know, understand, practice, learn, hold on to... Work pages, activites, explains it for parents AND for parents to explain to children. When DD10 was in the worst of this thing called PANDAS/PANS, I could not ever imagine my DD10 benefitting from intense CBT/ERP. And at her worst she could not even have made it to the building I'm sure. BUT, 9 months postIVIG, uncovering and treating and ridding co-infections, and TIME ---- she is actively partipating and making huge strides. Still a work in progress. Anxiety can still be almost thought he roof at times. But only at times. And sometimes not even daily!! ((hugs)) to all you amazing moms and dads!!!!
  13. Yes my dd had these types of issues. Vision - "black circles" in her field of vision, "sparkling floaters" blurry and snowy vision. Noise - O MY this was intense! Became very obvious at school - could not handle noisy situations. Touch - yes. Could not stand to be touched or hugged - especially her head. Would go days and says without shower - come to find out it hurt her head. Now all of these symptoms were at a 10t- off the charts actually - when she was at her worst and nonfinctional before IVIG and antibiotics and antivirals and time.
  14. My daughter tested positive for a few different ones -both A and B. She did take antivirals for a total of 20the days and it helped her!! I know there are herbal/natural antivirals that can work for people.
  15. The Flu Mist is a live vaccine. I know my daughter received it last year and it was what sent her "off that cliff". I know I have read lots and lots of stories about this happening. I would strongly caution against it.
  16. Yes! DD10 had great results! Also had real improvements once found and treated mycoplasma.
  17. It was good. Not too technical of course. Did stress sudden onset and "anorexia". Urged Dr's and families to check for infection if kids change drastically or suddenly.
  18. HLN Weekend Express!!!! Author from Boston Globe story was interviewed!!
  19. I am wondering if what I am seeing in DD10 NOW is a herx or what??? LLOONNGG story, but my poor girl had to get 3 stitches on the bottom of her foot last Sunday - and in less than 24 hours an infection had spread to her BONE!! Yes!! Osteomyelitis!! She was hospitalized for 2 days on IV antibiotics and home now on mega doses of clindamycin and bactrim. Separation anxiety back and INTENSE at times. AND TICS She has not had any tics since IVIG in February, eye fluttering and jaw clenching/teeth grinding... Also dilated pupils again and "fear" look for hours at a time - these symptoms also gone since IVIG.. SOOOO flare or herx??? Can she have a herx if it is not Lyme related (always tested negative.)
  20. Jaal, our dd got ivig with Dr K 8 months ago. I would do it again. She was nonfunctioning, ticcing and compulsing all day long and doing strange writhing movements and falling to the floor, hadn't "talked" to us for weeks prior, and more.... The ivig with Dr K "brought her back". Immediately after ivig the writhing movements and headstanding and super intense startle response were gone. The tics were gone within a month. The OCD remains...but slowly and truly a saw-tooth pattern of healing. So, Dr K does seem to use the same percentages for these kids - he told us the same numbers. It iz expensive - our insurance denied coverage. But in our case I am so grateful he listened to our story and helped our dd. Like all the others replied -- it is a journey of healing the body, supporting the immune system, possibly consulting other doctors (we aslo have Dr T on board), dealing with flares, etc. So, ivig brought our dd back to us, made her able to function but it continues to be a journey. I truly don't think she will need it again but I would if we thought she did.
  21. Well a big part of me says to with your gut feeling. It is so tricky to rock the boat when they are doing any bit better. If these new doctors "find" something, would it change her treatment plan right now? My thoughts are with you!
  22. So sorry your son and family are struggling right now. I know all too well the feeling of "losing" your child. I agree to definately check for mycoplasma and lyme and also viruses. Our dd, and lots of these kids, have co-infections. It just sucks when our kids change so drastically and suddenly and we feel so alone and at a loss sometimes. But, we PANDAS/PANS families are strong and our kids do get better! There are days I feel I have to put my armor on and fight for what my dd needs and deserves. You will make it through and your son will have learned coping skills that surpass most others!
  23. I agree -sounds like PANDAS/PANS to me. So many symptoms and changes in personality. Sorry your daughter and family are suffering and struggling...this is a great place for support and information.
  24. 10 year old dd here and tour story sounds so familiar. I think we have noticed that before - our dd at her worst was always always on her head upside down and moving strangly on kigchen floor. Heart breaking mar but u are not alone!!
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