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MC2

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MC2 last won the day on January 4 2018

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  1. Hi All (I realize orignal post here was in 2009 but it would be great to hear more/new updates!), Vision: My DS (now 10) has complained of burry vision in full flare and has also had worsening of vision in recovery (needed reading glasses suddenly). Note that my son's treatments included 6 months of high dose Solumedrol infusions. We learned that high dose steriods can cause some vision issues, though generally relatively temporary. Negativity: We also have experienced significant negativity. This has become one of the biggest challenges because we have had a hard time figuring out
  2. TIna, I am so sorry, I know many of us have been in this exact situation. A crazy catch 22: you can't get them to go to the hospital for much-needed medical treatment and the psych wards won't provide that sort of treatment. Your entire tale of video game addiction and refusal of doctor apptmts/blood draws was exactly where we were in February of this past year. I posted on this forum what all we did on a more general basis (gist was 6 months worth of High Dose Solumedrol infusions (every 4 weeks) plus ABX plus Naproxen plus Plaquenil). I tried to attach that summary with the link below.
  3. We also had very severe separation anxiety as the first symptom. Then we got many others (physical as well as behavioral/psychological). During the first 2-3 months, while DS (age 10) was getting worse and worse we did 2x weekly CBT with lots of "homework" (exposures etc). It did absolutely nothing. In fact, I think the CBT had a very negative effect: permanently imprinting truly awful memories of his school in his brain (thankfully he is now back in school but there was no way he was going to go back to the school where this started; to this day, he won't set foot on that campus). I wish I ha
  4. This is a very helpful post. Our 10 yrs old DS is now in recovery after awful flare/diagnosis last year. He is soooo much better. But just as you all have detailed, a significant remaining symptom is cognitive struggles at school (especially reading and writing, but also anything that falls in second half of the day/when brain fatigue sets in). The main concern we have is keeping his frustration level down enough so that he doesn't get so frustrated that he refuses to go (it is struggle to get him there as it is - not due to social but all due to academic anxiety). We did some partial days at
  5. From the start of HD Sol and Plaqenil until he was significantly better was about 4 months, but then it has gradually improved in smaller increments since then.
  6. Our DS (age 10) is now so much better and recently went back to school for the first time in nearly a year. I look back at how surreally awful things were a year ago and wanted to summarize for this forum how we got to where we are today. I can only hope this might help others in the doldrums of this thing. It is a dark place. Pardon the long post, but I want to share as many details as possible. I first set out our son’s symptoms/some observations about diagnosis, then detail what our treatment consisted of (son is 90% back!) Background of Symptoms/Onset What I now know to be class
  7. Our DS (age 10) is now so much better and recently went back to school for the first time in nearly a year. I look back at how surreally awful things were a year ago and wanted to summarize for this forum how we got to where we are today. I can only hope this might help others in the doldrums of this thing. It is a dark place. Pardon the long post, but I want to share as many details as possible. I first set out our son’s symptoms/some observations about diagnosis, then detail what our treatment consisted of (son is 90% back!) Background of Symptoms/Onset What I now know to be cla
  8. Very sorry for the long, frustrating road. I just thought it worth mentioning that antibiotics (with or without naproxen) is not sufficient to make a dent in many PANS/PANDAS patients (my 10 year old DS included). For us, high dose Solumedrol (steriods) infusions may be key. IVIG is hard to get approved by insurance, though that may also work. Something you could try is taking the pill form of prednisone for a 5-7 day course (assuming you can get a script for it) and see if there is any symptom relief (then again, not seeing improvement is not a clear sign of no brain inflamation - it could be
  9. D id they give her Solumderol along with the IVIG? If so, we have had horrible stomach pains with our 10 yr old ds (we even went to ER) after Solumedrol infusions. It was all cured by pushing Benadryl during infusion and post infusion for about 2 days.
  10. Our 10 year old son did oral steriods (60 mg for five days, then stopped cold) and we saw a small improvement on day 3, which went away as soon as we stopped. It was just a glimmer. We had also done 4 weeks of antibiotics by then. We then got high dose steriod infusions. That is when we saw real improvement (7 days post a 3 day infusion). I am no doctor, but it seems like what your 16 year old had may not be enough of a dosage to see much improvement....
  11. H there, We have been doing 5 months worth of high dose Solumedrol for our son. The first two months worth it was three days in a row (since then only 1 day, spaced by 4 weeks). The main side effects we have had: exhaustion for the first few days (but weird exhaustion where you also have underlying restlessness), no appetite first 2 days but then moving to huge appetite for salty chip type stuff, puffy face, weight gain, grumpiness (note, we push benadryl for first 2 days after infusion b/c son gets red cheeks and weird stomach pain, which were deemed an allergic reaction, but this also
  12. Sham7Rock, So sorry to hear about your son's experience, not to mention you having this on your hands as a single parent. My son (9 yrs old) has had nearly identical symptoms. After three months of cognitive behavioral therapy and SSRIs, we realized that there was something else terribly wrong (he also had dialated pupils, light sensitivity and couldn't stop moving, and those same bedtime fear/rages were simply awful - the entire family was in a state of panic/stress). We have not had IVIG, though I have heard that it works for many (though in some cases it is needed every 4 weeks - uncle
  13. Hi KLW, I am curious how your DS is doing? Better I hope! My DS (age 9 - diagnosed this past Fall) has just finished his second set of three high dose Solumedrol infusions. This was the first thing that brought him any improvement (we saw him get approx 1/3 to his baseline approx a week after completing the first set of three infusions). We then waited 3 weeks and have just finished another set of three Solumedrol infusions (I don't know what the dosage is, but it is "high dose" and he weighs 95 pounds). I can only hope this round brings him further improvement. He is also on Plaquinil to try
  14. I believe many children with PANS/PANDAS have the exact Chorea movements you speak of (milkmaid, and the hands out in front moving a bit with the eyes closed, there is also something they can test involving the tongue). My son has this too and is PANDAS. Apparently, this comes with the current thinking by doctors that PANS/PANDAS is a "forme fruste" of Sydenham's Chorea. Your son's other symptoms also sound very consistent with PANS/PANDAS. I am not sure where you live, but seems like it would be very good idea to get him to a PANS specialist... Best of luck. Sorry you are dealing with this.
  15. I realize it has been a year since your query about a provider in Florida, but thought I would make note even if late: I have heard a lot about Dr. Tanya Murphy at the Univ of South Florida. With any luck, you no longer need this information. Sorry you have been dealing with this.
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