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ktdommer

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  1. Like
    ktdommer got a reaction from mommybee in Your input please   
    Mommy bee your post is amazing.
    My son's processing speed is far below his IQ. He is frustrated by it as are we as parents. I'm not talking auditory processing. The doctor believes it is an effect of bartonella mostly.
    If your daughter has Lyme would it be congenital? Do you remember a bite?
    It gets tricky knowing what might have been despite PANS or Lyme.
    K
  2. Like
    ktdommer got a reaction from momslove in This is a family affliction...ugh   
    It is all hard. I'm married to an engineer who sees things black or white. With Lyme and PANS things are mostly grey. Another strain is the financial aspect of treatment. I just stopped talking about all the details of three of sick with Lyme which made it easier and he stopped questioning all the bills. It hurt deeply though that he mentally could not get to my level of involvement and caring. I realized he couldn't and never would. He didn't have it in him. This realization also was helpful. I sometimes would think he had bartonella.
    Hang in there and know you are not alone in your struggles.
  3. Like
    ktdommer got a reaction from hkp901 in New to this...   
    Having a sick child is a lot to deal with. Having a child with possibly PANs and or Lyme is a lot.
    You are smart to think about limiting pokes but I don't know how open your doc is going to be to testing. A regular western blot at a local lab probably won't catch Lyme disease, especially if an older infection.
    Igenex labs is the best place to test. A Lyme doc may want to do an antibiotic challenge. The timing of all of this would be difficult. With Lyme and coinfections there are a ton of labs. A good doc will be able to prioritize what needs to be tested first.
    So does your son have A PANS doc? How old is he?
    Feel free to post often and ask questions as you begin this journey.
    I know your heart is breaking and you are worried. Make sure to take care of yourself, too. I'm sorry you are having to go through this time of unknown.
    Best wishes,
    K
  4. Like
    ktdommer got a reaction from cynditk 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.
  5. Like
    ktdommer got a reaction from SSS 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.
  6. Like
    ktdommer got a reaction from putting together the piece in calling all PANS/LYMES children's caretakers.   
    You are in a tough spot and one. I relate to very well. I too spent years explaining my son's behavior and illness. You two will have to set some rules sort of speak. For us, it isn't over despite my son being kicked out of the house. Now we battle over rent, lost phones, smoking, stolen bikes, meds and treatment and finances. We sort of stopped speaking too much about it. Easier. I knew he didn't get it and that in his brain he couldn't get it. He did not see what I saw nor did he hear everything our son would say. I've stopped expecting anyone to get it.
    Chronic illness is hard on any family, but a misunderstood, chronic disease is worse.
    For us we had to calm the reacting to the behaviors part. We had to, for sake of sanity agree that we wouldn't deal with the illness the same way and accept it and respect it.
    I've often wondered if it would have been easier on my own. Things are getting better I think. Hang in there!
    K
  7. Like
    ktdommer got a reaction from lilliepad in Advice/Help   
    Welcome,
    I am a new member also. I feel your pain. So many unknowns in the beginning. You are really going through a lot. I would think that PANS testing is warranted. I had our Lyme doc write the orders for the Cunningham panel. Information at Moleculara Labs. I will tell you they are running behind.
    Your doc should know that strep is not the only trigger. Maybe you could give them information on PANS.
    Are you healthy?
    Have you asked to get on a cancellation list?
    Best wishes,
    Kari
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