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rhyanen

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  1. Hi pepper1, My son is now 17 and he still rarely leaves the house. He made some improvement for a while and went out a couple times to his friends house but that was about the extent of it. He will go to the occasional doctor appointment, but other than that he doesn't leave. He hasn't been to a store, School, or other facility in four years. He is just going to have to get his GED through the local College because the school district has washed their hands of him. Over the past few months he was having nosebleeds quite a lot.... meaning a couple times a week at least. At first I didn't think much of it but then he started complaining that his anxiety was getting worse and he wanted to go on anxiety medicine. This coming from him and actually communicating to me was a really big deal so I listened. I consulted his pediatrician who put him on a very low dose of Zoloft...25 mg. It has been two weeks that he has been on the Zoloft and it hasn't helped much. Yesterday he came out of his room and told me that he wants to go on the PANDAS medicine. I asked him if he meant the antibiotics and ibuprofen and he nodded yes. I finally realized that the nosebleeds could be related to a possible strep infection in his sinuses and that a flare-up is starting. It is also possible that because my husband and I have been sick with something viral he may be reacting to it. At any rate I am calling his pediatrician in the morning to see if we can do some kind of strep swab and then get him back on antibiotics. I have noticed that the antibiotics with ibuprofen usually seem to help with his flare-ups but it doesn't completely eradicate all his symptoms. If only IVIG were affordable for us we would be doing that in a heartbeat.
  2. Hi tinaw. I just wanted to check in with you to see how things are going. Are things any better yet? Have you found any solutions to getting your son out of the home? It's still a work in progress with my 16 year old. He still won't leave the house but has improved in other ways by reconnecting with his friends through online gaming. And his tics are gone. Anxiety still lingering enough to keep him homebound. But he did have a friend come over last weekend...first time in a year! I know we're kind of in the same boat with our boys, so I just wanted to check with you. Hang in there!
  3. Lyme-N

    I'm curious about this treatment too. Cannot afford IVIG right now and antibiotics don't seem to be having that much of an effect.
  4. Btw, I forgot to mention that one thing that helped us to get him to go to doctor appointments was to start playing the video games with him. He loves us being a part of HIS world. So I would give him plenty of preparation with appointments. I would remind him daily that his appointment was coming up, so he could allow himself to mentally prepare for it. I would also allow him to go to the car once the doctor was finished examining him. It provides a comfortable place for him to be alone and stress-free.
  5. Wow! When I first read your post, I had to go back and read it again because I thought I had written it! We are in the same situation however my 16 year old son is now going to doctor appointments occasionally. But that's the only time he'll leave the house. He hasnt been to a store or in school for 1.5 years now. He would have been a junior this year if all had gone normal. But at 14, his freshman year, he had the worst flare to date, and it has incapacitated him. He plays video games all the time too. It does help to distract him when going through flares.
  6. Could it be pandas

    I'm so sorry you daughter and family are going through this. My son was 14 years old when his worst flare up of autoimmune encephalitis occurred. Of course we had no idea at the time that that was what it was. He has a diagnosis of autism since age 3. He kept having what we called autistic regressions every few years. Then at 14 he started having paranoia, hallucinations, severe anxiety, sleep disturbances, ocd and loss of communication. He could no longer attend school due to the cognitive damage it caused over the years. His IQ dropped 18 posts. Once an honor roll student with friends, he is now without friends and extremely agoraphobic. He has become completely disabled by it. Diagnosis PANS/PANDAS. HOWEVER, I still wonder if it might be some other type of autoimmune encephalitis. Antibiotic treatments aren't helping much and steroids made his tics worse. Do a Web search for Anti-NMDA Encephalitis and see if it sounds like what your daughter may be going through. It is much more common in females aged teen through child bearing years. It is often related to ovarian teratoma cysts. It can be diagnosed through bloodwork and cerebral spinal fluid( lumbar puncture) Please keep us all posted. Hope you find some answers soon.
  7. Can anyone tell me what the difference is between the two, or are they basically the same thing? Has anyone's child been diagnosed with Anti-NMDA receptor encephalitis via CSF analysis? After reading about this type of encephalitis, the similarities are striking!
  8. Paying for IVIG?

    I guess what I meant was, if insurance isn't paying for it, how does a person get the funds to just drop down $10,000, $20,000+ on treatment? Especially if you are poor or middle class? Do you take out loans? Sell your car? How do you get the money? Are you wealthy?
  9. How does one pay for IVIG? Especially if insurance refuses to cover it? Does it have to be paid up front in full? Any information would be greatly appreciated. Thanks in advance.
  10. Hi we drove from a neighboring state so that my 16 year old son could be seen there in the hopes of getting IVIG.. He already had a diagnosis from another physician in AZ, but this was just to confirm it. Staff was ok. I think they are not quite as knowledgeable as I had hoped. RX for antibiotics...yet again. Steroids caused an increase in tics. Was discontinued. I was hoping he would see the sleep specialist and nutritionist as his sleep schedule is a mess and he has limited food intake...he's only 117lbs and 6'1". Please send me a private message and I can give you a more detailed response.
  11. Thank you! That makes me feel validated because I had been reading alot on Lyme and the confection connection and when he told me that he couldn't have it, I was pretty shocked. The first specislist he saw diagnosed him with PANS/PANDAS. She told us specifically that he needed to see a Lyme specialist based on the results of the Western Blot. Several months prior to that appointment, we were camping in Colorado and my son was feeding wild chipmunks and squirrels. 3 months later, he develops symptoms, can no longer function, or go to school, etc etc. The worst exacerbation we had seen. He had not been diagnosed yet when all this occurred. After coming across information about PANS and Lyme, it prompted us to seek the opinion of a specialist in AZ. But we reside in New Mexico. We've been having to travel to AZ for appointments as New Mexico is not up to date yet regarding autoimmine encephalopathy.
  12. Thank you so much for the response. He has been through a host of testing and came back showing mycoplasma, coxsackie, HHV-6, and western blot positive for 3 bands. Immunologist says he does not have Lyme because he does not have 5 bands per CDC guidelines, which I am skeptical about his opinion on that. Currently strep antibodies are negative, but have been positive in the past. He's been suffering through this for a good 14 years. He was diagnosed with high functioning autism at age 3, so for years we just assumed it was that. But we started noticing a pattern with illness, and each time resulting in some serious regression. He is now 16 years old and cannot go to school anymore nor leave the home. His last big exacerbation was it 14 years old, during which time he had a psychotic episode. His cognition has declined by 15 points on his IQ test. He has become severely disabled by this and can barely communicate anything. It's devastating because he was on an honor roll student in between his flare-ups and had several friends. Now he is homebound and a social. I will contact his immunologist and his pediatrician regarding his reaction to the steroid and hopefully they will have some thoughts.
  13. Hi everyone. My son's immunologist just prescribed 50mg prednisone for 5 days to take down inflammation. 2 days in, his verbal tics have increased to where they have become incessant. He has also started a new tic where he violently shakes his head back and forth all while having the verbal tics. Is this a normal response to steroids? This is his first steroid treatment. Before he just took Nsaids for inflammation. Thanks Amy
  14. Hi. My ds is 16 and I've noticed that he tends to get migraines often in the beginning of his flares, which tend to taper off with time. Does anyone notice this in their child during a flare?
  15. Hi. My 16 year old ds seems to have migraines often at the beginning of his flares, which tend to subside as time goes on. Have any of you noticed this pattern in your children during flares?
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