Jump to content
ACN Latitudes Forums

filinha1

Members
  • Content Count

    93
  • Joined

  • Last visited

Reputation Activity

  1. Thanks
    filinha1 got a reaction from eacampbell67 in Anybody seen Kayleen Clute, APRN in Washington D.C. for Lyme?   
    Hi,
     
    My daughter is being treated by Kayleen and we like her very much. Feel free to pm me if you have specific questions.
     
    Heather
  2. Like
    filinha1 got a reaction from Mimi4 in Handling Raging Behavior   
    I sympathize with your plight completely. When our dd was at her worst last fall, she trashed our house, threatened to kill herself while holding a knife, spat at us and told us she wished we would be murdered. In her case the extreme rage was a result of using the sari Celexa (for ocd), before we really understood the negative effect it can have on many children with PANDAS/PANS. Our p-doc worked with us to keep her from being hospitalized, which in our case meant more meds. We put her on Risperdal increasing to 1 mg/day and quit the Celexa. It did work to calm her and kept her and us safe from harm. Many times I felt nervous if she wasn't directly in front of me, for fear she might do something to me. I'm not advocating the use of psychotropic medication; I wish we hadn't started it sometimes, in retrospect, because it makes it more difficult now that she is being treated with abx, to really know what is working. Given our knowledge at that time, intent to keep her out of a hospital and prevent serious damage to her person and our home, we used the Risperdal. And it worked.
     
    My take on these meds is to assess your situation by looking at what you can and can't deal with as a family. Can you keep her and her siblings safe during this exacerbation? What are the alternatives...hospitalization, having a relative live with you (someone strong enough to physically contain her), having her siblings stay with a friend or relative? Like you, we physically held our daughter at times to contain her. Like your daughter, ours hated it. Manhandling my child like that goes against every fiber of my being. I felt appalled and guilty but I did it anyway. In the end I'm glad she is of an age that she is small enough that I could do it. What we literally did was grab her arms from behind and cross them over her chest, try to lower her to the floor in front of us and then hook our legs over hers to prevent flailing. I learned to cant my head sideways because dd would bang her head repeatedly back and forth. (My nose is still intact:). Usually we'd talk calmly and agree to release one arm if she agreed to sit still, then the other arm etc. The worst part of the process was in the five minutes after dd was contained - it was when her fear was at its peak. After ten minutes I think the adrenaline starts to decline - nothing bad has happened after all - and there is some small reduction in fear and rage.In all we probably had to do this 7 or 8 times and then the statement "I will hold you if you can't calm down" became enough to stop the destructive behavior.
     
    Dd still takes risperdal 0.75 mgs a day, 6 weeks into abx treatment. I tried to lower it recently to 0.5, but her irritability increased noticeably. Every week that passes though, she is a bit better so I'll keep trying the lower dose until she - hopefully - doesn't need it.
     
    You have my heartfelt understanding and wishes for your the return of daughter's health and happiness. This is a heartbreaking illness to go through - for everyone involved.
     
    Heather
  3. Like
    filinha1 got a reaction from EAMom in Anybody seen Kayleen Clute, APRN in Washington D.C. for Lyme?   
    I believe that as a NP she specialized in pediatrics and she works part-time at a pediatrician's office, but she treats both kids and adults for Lyme.
  4. Like
    filinha1 got a reaction from mommybee in New Lyme Article from the Boston Globe   
    Interesting. I find it hard to place a lot of blame squarely in the lap of a researcher like Steere; he may be guilty of being incorrect in his conclusions and may not be asking all the right questions in the first place, that much is true. But Steere clearly isn't a dummy and likely isn't an uncaring monster. When there is equally compelling science that contradicts research like Steere's, I blame our insurance companies for adhering to the views of the side that costs them less. After all there are two diametrically opposing viewpoints in the medical establishment - not the mainstream and some fringe noisemakers, but heavy-hitters on both sides.
     
    If ILADS came out with some miracle protocol that worked and cost less than 3 weeks of doxycycline, insurance would be happy to accommodate.
     
    I think our best bet is to lobby our local and state politicians, to force laws that require insurance to pay for treatment that a licensed physician has prescribed for his patient.
     
    Heather
  5. Like
    filinha1 reacted to kimballot in Interesting perspective from Beth Maloney   
    I know I've not been posting much lately, but I feel a need to chime in here. My son is 16. Grant is 17. My son had a major exacerbation in 2011. So did Grant. My son had severe OCD that made it difficult for him to get to school. So did Grant. I struggled to find help for my son. So did Grant's Mom.
     
    My son's exacerbation was so bad that he had to be hospitalized in a psychiatric ward. We had a file at the local police department so they would know what they were dealing with when I called them in the middle of the night to come and help me put my son to bed. My son never hurt another individual, but he posted horrible things on facebook that he SAID he did - though he never ACTUALLY did any of them. I don't know if it was hallucination, fantasy, or OCD. He listened to depressing, gruesome music and fought with me constantly to wear his hair and clothing in anti-social ways. It is hard for me to sort it out. I just know it was horrible ... fast. One police officer told me my son needed to go on PINS and that I needed to get the justice system involved. Thankfully, it never came to that.
     
    I changed insurance so my son could get IVIG and be treated by experts all around the country. I was very fortunate to have that option. Slowly, with each doctor, we made modifications in his treatment. Slowly, slowly, slowly, he came back.
     
    Today my son is a loving, kind, even-tempered and humerous young man. He still struggles with fatigue and brain fog, but overall he is a very likable kid with a big heart. When people hear who my son is the first thing they say is "what a nice kid". My son received treatment. Grant did not.
     
    I do not know what would have happened to him if we could not get treatment. I have no doubt he would be in trouble with the law.
     
    Can untreated PANDAS become antisocial behavior? I don't know.
     
    I do find it interesting, though, that many people in the PANDAS community have gone to great lengths to support the families from LeRoy and the families at Boston Children's when the doctors have said "this is not PANDAS"... but we are so quick to turn away from a controversial case when it is not pretty. No, we do not want our children associated with antisocial behavior... but if this IS the result of untreated PANDAS then it is best that we find out soon!!
     
    I am wondering why we are not screaming at the top of our lungs to find out if Grant has PANDAS and if immune treatments remove the antisocial behavior. Is it possible that a portion of the children in juvenile detention centers could be helped with antibiotics, steroids, and IVIG? Wouldn't that be amazing.
  6. Like
    filinha1 got a reaction from nicklemama in New PANDAS on the news from AZ   
    From this short news clip it certainly sounds like Tyler has PANDAS, poor kid. Regardless of what else other than PANDAS may or may not have been going on with Tyler, I'm not going to keep my daughter's diagnosis any more private than I currently do.
     
    I'm not too keen on dd herself finding out about this story for her own sake - she is only 11 and has enough self-doubt and anxiety as it is. We homeschool her, so we don't have the pressure of worrying what other kids might say or that school personnel might put her under a microscope for strange behavior. I do sympathize with those concerns.
     
    I think I'll take this opportunity to tell any interested parties what I know - and don't know - about PANDAS/PANS, when and if it comes up. Any friends and family who were going to steer clear of us and our 'problem' have already done so. (Not too many thankfully). I can hardly imagine it would be harder to deal with strangers who might do the same.
     
    Maybe one of the best things we can do for our kids, one of the most honorable things, is to tell the truth as we understand it, about their illness.
     
    Heather
  7. Like
    filinha1 reacted to tpotter in Just published   
    http://www.jneuroinflammation.com/content/10/1/43
  8. Like
    filinha1 reacted to peglem in I haven't felt this good in a long time!   
    I know everybody always says we should take care of ourselves so we can be good and strong for our kids...yada,yada. And that makes a lot of sense, but finding the time and energy to take care of myself has been hard- and you'd think me taking care of EVERYBODY else, somebody would step up to the plate and take care of me. Anyway, I've been a huge crankypants lately and whining and complaining and just irritated all the time. So, for mother's day, My oldest daughter (she's a mom, too) and I decided we'd play hooky from motherhood. We really didn't do anything special- just some shopping, some eating- saw a stupid movie...w/ no particular plan or time we had to be back by. I haven't had a day off since....well a very long time. It really, really did me good! I just feel very happy- all that irritating stuff in my life is kind of amusing now. And I appreciate my PANDA girl more, too!
  9. Like
    filinha1 got a reaction from JenniferG in Mother's Day   
    To all of you incredible, dedicated, strong, kind, supportive and fierce women and mother's on this forum I say "You Rock!"
     
    On this day, the tv ads and magazines and stores everywhere want to show us opening boxes to find heart-shaped diamond necklaces, smiling in our robes and opening cards. Many of us, not only on this forum, are just not those Moms. Those ads can remind us of what we don't have, or they can remind us of what really matters.
     
    Our Mother's Day wish is simple; to look into the eyes of our children and see happiness. That's it. That gift to us may have come as a temporary reprieve last week on a 'good day' or it may come tomorrow or next month.
     
    For me, today, on Mother's Day, I rejoice in the gift of my imperfect life that looks nothing like those ads. I rejoice in the gift of my imperfect child. I rejoice in all of you while we struggle together, fighting for what really matters.
     
    Happy Mother's Day.
     
    Heather
  10. Like
    filinha1 reacted to thenmama in NIMH says "Out with the DSM!"   
    Found this interesting and relevant to our community, so thought I'd share...
     
    http://www.technologyreview.com/view/514571/nimh-will-drop-widely-used-psychiatry-manual/
  11. Like
    filinha1 got a reaction from Joyfulgreetings in Lemon Balm update   
    Hi Kathy,
    I'm glad something like lemon balm seems to be working / helping your son. It sounds like you are using a capsule form - would you give some more details?
     
    Tx, Heather
  12. Like
    filinha1 got a reaction from MomWithOCDSon in Glass Children   
    This is a great reminder that all kids benefit so much from regular interaction with caring adults other than their parents. One of my aunts told me a story about being at her eldest son's college graduation party. She said she had numerous conversations with friends of his who kept telling her what a great sense of humor her son had and that he was easily the funniest guy in the class. She reported being stunned that her 'shy and quiet' son was the same guy his friends described; 'I just couldn't believe it', she said. It's so easy for kids to get typecast in a role determined by their immediate family - the 'good' one, the 'smart' one, the 'athletic' one, the 'ill' one.
     
    Sometimes the kindest thing we can do is to release them into the custody of people who allow them to express the fullness of their minds and spirits and to break loose from our loving chains.
     
    Heather
  13. Like
    filinha1 got a reaction from SSS in Glass Children   
    This is a great reminder that all kids benefit so much from regular interaction with caring adults other than their parents. One of my aunts told me a story about being at her eldest son's college graduation party. She said she had numerous conversations with friends of his who kept telling her what a great sense of humor her son had and that he was easily the funniest guy in the class. She reported being stunned that her 'shy and quiet' son was the same guy his friends described; 'I just couldn't believe it', she said. It's so easy for kids to get typecast in a role determined by their immediate family - the 'good' one, the 'smart' one, the 'athletic' one, the 'ill' one.
     
    Sometimes the kindest thing we can do is to release them into the custody of people who allow them to express the fullness of their minds and spirits and to break loose from our loving chains.
     
    Heather
  14. Like
    filinha1 reacted to LNN in Glass Children   
    This talk is by a woman who had two brothers. One had severe autism and the other died as a young child. She talks about being the "good" child who didn't feel she was allowed to have problems or add to her parents' burden. She felt like she was made of glass - not fragile, but rather, someone who people "looked right thru", as if she were made of glass - invisible.
     
    In her talk, she doesn't blame the parents. But she talks about the importance of having other adults who can make a child feel visible again, remind them that they count too. A lot of us struggle with this, trying to be there for the healthy (or less sick) child yet having the ill child demand all we have to give. I don't post this as a guilt trip but rather a reminder that it's important to let other adults help us in times of crisis, especially if they can be there to prevent a glass child and be a one mile per hour wind
     
    http://tedxtalks.ted.com/video/TEDxSanAntonio-Alicia-Arenas-Re
  15. Like
    filinha1 reacted to Dedee in Tough couple of days... Need to vent!   
    Oh my gosh! You poor thing......and your poor little girl. That sounds absolutely horrible. I don't know how you keep from just turning around and going back home every day. When everything started for us my daughte had horrible seperation anxiety and terrible anxiety about school. We had many days where she couldn't go to school and many days we had to force her to go to school. Finally we got a letter from her pediatrician and filled out the papers for home bound schooling. This is different from home schooling. This says your child has a physical condition preventing them from attending school and the school is responsible for sending out a teacher to the home to work with the student. In our case my daughters teacher was going to come to the house 3 days a week for 3 hours after school was over. Turned out my daughter only missed a week of school so we didn't end up utilizing it but it was great to know we had it if we needed.
     
    Honestly, I wouldn't worry so much about school right now. It really is not so significant in the grand scheme of things. It's kindergarten, there is no reason why she shouldn't graduate. She should be able to miss a couple of weeks with you working with her at home and still do just fine. Your doctor should be able to give you a note. For goodness sakes, this poor girl is suffering. Once my pediatrician saw how my daughter was acting out in the office one day, she would write me a note for anything. You are working in survival mode right now. You just need to get through this acute episode and when things are better you can pick up where she left off. I really hope things are better for you soon. Keep us updated.
     
    Dedee
×
×
  • Create New...