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cynditk

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  1. Like
    cynditk got a reaction from SSS in Michel12 feeling hopeless   
    Hi Michel,
     
    Here's my son's story in a nutshell: He was 12 when he became seriously ill. Bedbound for about 6 months. Initially dx with immune deficiency, started on IVIG. Some improvement, doing ok for next 3 years. Then mysterious onset of PANDAS symptoms. Again bedbound, left school, but this time became seriously anxious, OCD and depression, some psychosis, would not leave his room most of the time. Became a different person. This went on for about 2 years. We were very concerned for his safety during this whole time and concerned inpatient many times, but never did because of all his sensitivities. He was treated with oral abx for the PANDAS and steroids as well. He had his tonsils out. We flew to Connecticut to consult Dr.B and do high dose IVIG, and we did this for a year, flying back and forth between Seattle and CT. He did not improve much. In 2012 he was dx with Lyme and coinfections by a LLND in Seattle. Started Lyme treatment. Still did not improve much until we started intensive IV abx 6 months ago. This is the first time in 8 years that we have seen significant sustained improvement and now we have some hope that he can get better. Also he takes celexa for depression and medical cannabis for his pain, which is the only thing we have found that reliably helps. Both of these have been hugely important in getting him through the symptoms so he can continue treatment. If you are in a state that does not allow medical MMJ you can try a product called high CBD hemp oil , which is legal everywhere, from Bluebird Botanicals. Many people find this has similar results as MMJ, though it is pricey:
     
    https://www.bluebird-botanicals.com/CONCENTRATED_CBD_Oils_2.php
     
    I second the Lyme dx. My LLND does phone consults if you would like to try talking with her. There are many good docs out there, ILADS has a list they will send you: http://ilads.org/ilads_media/physician-referral/
     
    I know how much you are suffering, please hang in there. Keep looking for answers and don't give up. I will ask him if he would like to connect with you and offer you some support.
  2. Like
    cynditk got a reaction from fuelforall in Michel12 feeling hopeless   
    Hi Michel,
     
    Here's my son's story in a nutshell: He was 12 when he became seriously ill. Bedbound for about 6 months. Initially dx with immune deficiency, started on IVIG. Some improvement, doing ok for next 3 years. Then mysterious onset of PANDAS symptoms. Again bedbound, left school, but this time became seriously anxious, OCD and depression, some psychosis, would not leave his room most of the time. Became a different person. This went on for about 2 years. We were very concerned for his safety during this whole time and concerned inpatient many times, but never did because of all his sensitivities. He was treated with oral abx for the PANDAS and steroids as well. He had his tonsils out. We flew to Connecticut to consult Dr.B and do high dose IVIG, and we did this for a year, flying back and forth between Seattle and CT. He did not improve much. In 2012 he was dx with Lyme and coinfections by a LLND in Seattle. Started Lyme treatment. Still did not improve much until we started intensive IV abx 6 months ago. This is the first time in 8 years that we have seen significant sustained improvement and now we have some hope that he can get better. Also he takes celexa for depression and medical cannabis for his pain, which is the only thing we have found that reliably helps. Both of these have been hugely important in getting him through the symptoms so he can continue treatment. If you are in a state that does not allow medical MMJ you can try a product called high CBD hemp oil , which is legal everywhere, from Bluebird Botanicals. Many people find this has similar results as MMJ, though it is pricey:
     
    https://www.bluebird-botanicals.com/CONCENTRATED_CBD_Oils_2.php
     
    I second the Lyme dx. My LLND does phone consults if you would like to try talking with her. There are many good docs out there, ILADS has a list they will send you: http://ilads.org/ilads_media/physician-referral/
     
    I know how much you are suffering, please hang in there. Keep looking for answers and don't give up. I will ask him if he would like to connect with you and offer you some support.
  3. Like
    cynditk reacted to bigmighty in Michel12: IVIG update   
    Have you tried steroid taper at any point? DS did augmentin 875 for a few months, then added a three week steroid taper. He started seeing positive changes during steroid use, but lost them again after he was done w/the prednisone. Doc said to bear with him. Two months after the steroids, DS went into remission. Doc said once infection is fully gone, brain inflammation needs to die down for symptom abatement and this takes time.
  4. Like
    cynditk got a reaction from SSS in Still learning how to seek/sort care for my child...   
    7 years of treatment. Here is some stuff I've learned:
     
    *Question and research everything your doctor tells you, understand the treatments inside and out. Just because they think it will work doesn't mean it will.
    *doctors love to sound authoritative and reassuring- but ultimately, you are responsible for your child's care. Not them, they get to go home at the end of the day.
    * Track all treatments, write down as much as you can of the day to day reactions to treatment, this will help you and doctors know if you are on the right track.
    *There is no one right treatment for everyone. Treatments must be customized for the individual. Different things work for different kids.
    * Be aggressive with treatment, and find a doctor who will as well. this is your child's life you are talking about. DO NOT let doctors minimize what your child is going through> Press for answers until you get them.
    *Learn about methylation and detox, genetics are really helpful in choosing the right treatments.
    * welcome to an alternate universe. get comfortable with living outside the box.
    *learn to not take anything personally. Friends and family will reject you, doctors will ignore you or let you down, you child will rage at you. Take none of it personally.
    * Kids with PANS and Lyme are at high risk for suicide. Take all suicidal talk very seriously.
    * Avoid the psych ward.
    * If they will tolerate it, Foot rubs, massage, and loving touch help ground the kids and feel that they are loved. These kids are incredibly isolated and need to know they are loved and cared about. Tell them the good things about them every day, touch them, reassure them.
    * Alka Seltzer Gold, baking soda and epsom salt foot baths or regular baths, charcoal, and ibuprofen can help with exacerbations.
    *medical marijuana, if its allowed where you are, can really help with anxiety and pain> It has absolutely saved my son's sanity. It does not interfere with his treatment, just allows him to tolerate the ups and downs.
    *have a regular outlet for your own stress. get counseling, exercise, whatever works. this is a long road and you have to keep your sanity too.
  5. Like
    cynditk reacted to momslove in Still learning how to seek/sort care for my child...   
    We've been at this for 7 years now--5 since diagnosis of PANDAS and 4? since finding an expert. Along the way I have learned some lessons and yet I'm still disappointed in myself when I'm stumped as new situations present with providers...
     
    I have learned to be assertive with providers to tell them when I need some time with them without DD present. At first, I followed their lead and thought I needed to see how things went (e.g., with mental health care providers). My DD did not need to hear me describe all that was happening and speaking in code or hinting was not effective. I simply said I needed some of the time without DD. She REALLY appreciated it and it saved time overall.
     
    I have learned that if a provider does not "see" DD, it may cause problems with insurance coverage. Had an appointment for DD early on with a general practitioner and we couldn't get her out of the house. My DH and I went and had a good consultation, but insurance denied coverage. (Not my biggest battle, but lesson learned.)
     
    I have learned to keep calling when something is taking too long--lab orders, lab results, doctor response to questions. I'm not sure though if my calls made anything happen or just kept me busy...
     
    I have learned to follow my gut--based upon my observations and readings. We have found things that were not "right" because of this.
     
    I have learned that appealing insurance decisions can pay, literally. It is a lot of work though...
     
    I still have to learn how to make things happen...
     
    DD can be a "hard draw" when it comes to blood work. I'm trying to help her learn to assert herself. She now will tell them that she often needs a warm pack before a poke, but for some reason, they seem to want to try it first...
     
    The labs DD needs are often not standard so I bring in the order a day or more before the appointment for preparation. Still this last time, we waited for over an hour as they looked up or coded or whatever they have to do before drawing blood.
     
    When DD last had a blood draw, the woman wore no gloves. I stood there and watched and said nothing. This one still angers me (at myself) that I said nothing. Still need to figure out what I will say if it happens again... But we have already had one lab tell us they will no longer honor the lab orders from our PANDAS/PANS doc, so I don't want to burn this bridge...
     
    I also need to learn how to better coordinate the care from multiple providers...
     
    What lessons have you learned along the way? What are you still trying to figure out about seeking and sorting through the care for your child?
     
    Just wondering...
     
  6. Like
    cynditk reacted to HopeinHIM in Still learning how to seek/sort care for my child...   
    Oh my,
    there is so much that I (we) have learned this past year. Our DS 10 was diagnosed with PANS and then Lymes. Treatment has been up and down and mostly down these past few months.
    I have learned that you can NOT actually run out of tears while watching you child struggling to maintain sanity each day. NO...Each day there is a whole new fresh batch of tears produced.
    I have learned that the power of a mother's love will take you to the end of the universe if need be until your child has some peace and normality.
    I have learned that that this illness can absorb every part of your being if you are not careful.
    I have learned that I MUST force myself to focus upon other family members despite me not wanting to do anything but research PANS and minister to my sick and needy child.
    I have learned that most people don't understand and that when mental illness is mixed into the equation, people will run away faster than a roadrunner. It is as if your child has leopercy.
    I now have more compassion for others who are ill and remember to send frequent notes of encouragment .
    I have learned that sometimes, with much prayer , that I am a mighty worrier for my boy but at the same time in the same day I can also fall apart and lose all hope.
    This is a journey that nobody would dream of or wish on their worst enemy. None of us asked for it and yet most of us embrace and face the challenge. I have most importantly learned that all that I do and all that the doctors do.... ultimatley, our children's future rests in the arms of God.
  7. Like
    cynditk reacted to ktdommer in Still learning how to seek/sort care for my child...   
    I have learned that there is never a dull moment in the world of Lyme and PANS.
    I have learned that it is harder to treat a sick 19 year old living on his own than a 12 year old.
    I have learned that all doctors get something wrong and that they can let you go whenever they want to.
    I've learned that husbands struggle with chronic illness in their family and handle it differently.
    I've learned that an advocate can help at the school level.
    I've learned that nothing good ever comes from a psych admit.
    I've learned that the disability process is a long one and a time consumer. I wish I knew to organize better early on.
    I've learned more about private labs, supplements and body systems than I ever would have cared to.
    I've learned that housing for the chronically ill and mentally ill adult has a long waiting list.
    I've learned to seek out state programs for things I never dreamt I'd be inquiring about such as food resources and job training for people with disabilities.
    I've learned that adding PANS to an existing Lyme, FMS, CFS, depression, mood disorder, bartonella, babesia and Mycoplasms diagnosis is pure !
    I've learned that people on forums going through what you are going through can be lifesavers.
    I've learned that you keep going on and look for the simple pleasures.
    I've learned that my kids are worth every bit that I personally struggle.
    I've learned to accept the new normal. I think.
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