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LettySC

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Everything posted by LettySC

  1. I am really glad to hear that your DS is doing better. Mine youngest is feeling much better too. He has had fewer anxiety issues, but a bit more fatigue. He only has about 4 more days of antibiotics so we shall see. I know exactly what you mean about what happens when they get sick again. Just got my oldest a flu shot and I literally feel like I am gambling. Will the shot make him flare? If he gets the flu, will that be worse? Considering how many times we all have had pneumonia, I just can't risk flu (I still think the H1N1 that we all had in 2009 was the start of all of this). And now that my youngest is sort of back on track, I am wondering if I should pursue more testing or not. PANS parents just walk around on eggshells during flares and then we hold our breath when our kids are relatively healthy. I really hope you kids keep improving. I am so sorry to hear about how hard it is to get access to knowledgeable doctors.
  2. I have not posted here at all, but have been reading a lot. My DS (16) was formally diagnosed in May after about a year of decline. He is triggered mostly by mycoplasma pneumoniae. He did have severe OCD, anxiety and a bunch of other things, including tics. About 2 months ago 3 of the 4 of us, (me and my two sons) got some kind of virus. We were all sick, but my youngest and I were the worst. 16 year old has been fairly stable with his PANS stuff (on prozac, antibiotics, probiotics and aleve) and the virus caused a mild flare that he quickly recovered from. My youngest started having anxiety (general). We got him tested for strep and it was negative. Then we noticed he wasn't eating his lunch. He does not eat gluten as dad his gluten-intolerant and older brother's PANS is much better when he does not eat gluten (Oldest ate a pizza last night for a Halloween party and we are all paying the price right now--OCD and ticking and anxiety. He will be ok my morning I am guessing.) So back to youngest son (12). He has been generally anxious, but not classically OCD. Major migraines since he was 4. Now He is not eating at school, no matter what I send with him. He craves sugar like no one's business, so I have tried to restrict that. Then we got called in for a big teacher/principal meeting due to behavioral things. (Anger, anxiety, crying, inability to focus--sound familiar?) That was a big sign for us. We told them about PANS and they are working with us. The school has actually been great. We got our youngest into see our oldest's doctor and we are on our second course of antibiotics. Beginning blood tests and trying to see if we can get into the PANS clinic at Stanford. (Our family autoimmune history lights up like a Xmas tree, so we are hoping to find some underlying something that might get treated). So, the point of all of this is that I am in the same exact situation as you, except that my kids are a bit older. The food thing is making me crazy, because not eating is making everything worse, but I cannot get him to eat while he is at school. He has not said anything about sensory stuff (like chewing), but I am going to try and gently talk with him tonight. This is . I cannot believe that I am going to have to watch my second child go through this. AS my husband says, unless you have lived this 24/7 you would not believe it. Even when I try to explain it to non-PANS parents I know that as much as they try to understand, they really, really can't. I am sending you hopeful thoughts. Please stay in touch since we seem to be going down the same path at almost the same time. Your seconds will get better. We just need to find more strength, more patience and more energy. But we are moms, so I know we can do it.
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