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Everything posted by libera
libera replied to SurfMom's topic in PANS / PANDAS (Lyme included)Thanks for your encouraging post!!! So great to hear that your daughter is doing so well! We are going to a new neurologist next month and would like to start fresh (last pediatric neurologist didn't believe in PANDAS). Any advice on how to approach him? To me it is obvious brain inflammation caused by an auto-immune response, but I don't even know how to get the conversation started . . . both kids did way better on abx but Dr, K only prescribes them for a limited time. Of course we have the usual "bucket list" of symptoms (ocd, anxiety, depression, "adhd", school refusal, et al). What symptoms should we hone in? What tests should we ask for? Your advice would be greatly appreciated. Also, like Bobh, I would also be interested in the details behind getting the tociluzimab prescribed . . .
I totally agree with your assessment - it is most likely instance of labeling a set of behaviors without looking at the cause. Many diagnosed with PDA syndrome share similar characteristics of those diagnosed with PANDAS - high anxiety, school refusal, PDD-NOS. Is PDA syndrome really describing a manifestation of auto immune disorder? I would say very possibly. Truthfully, to me, the value is not in the label of PDA syndrome but rather in the strategies that have been identified to help those with the presentation similar to PANDAS - namely the high anxiety and school refusal. Because not only do we battle in treating the auto immune disorder, we battle with its presentation. And to me, the latter is actually the harder of the two battles. It is already tough to deal with the high anxiety/school refusal, but it is even worse when the prescribed strategies don't seem to work AT ALL. But what they have determined with PDA syndrome is that normal strategies DO NOT WORK FOR THIS KIDS. To me, this is huge! This so correlates with our experience! So now we might have some better ways to deal with the presentations! Some insight on to what is really going on and HOW TO DEAL WITH IT! In the UK, where the PDA syndrome diagnosis is widely accepted, there are actually schools to deal solely with children with PDA. (But on the flip side, these kids may never get the real help for the root cause of their issues). I am currently reading Understanding Pathological Demand Avoidance Syndrome in Children by Phil Christie, et al. Anyway, I just thought I would share . . sorry about the weird spaces and punctuations but I am doing this without my glasses on, which really isn't the best idea.
Researching school refusal and came across PDA syndrome. People with PDA will avoid demands made by others, due to their high anxiety levels when they feel that they are not in control. Anyone else heard of this syndrome? It has more widespread acceptance in the UK. Just so much of it sounds like Pandas son . . . think there is definitely some overlap. Worth looking into . . .
Decided to chime in on my son instead - PAN/ADHD 2016 was a horrific year for us - my twelve year old suffered terrible anxiety, school refusal, agoraphobia, along with suicidal thoughts, all comorbid with his ADHD. Despite an anxiety/school refusal treatment program, we still ended up pulling him out of his private school in February. We enrolled him the public school with the hope at least of getting an IEP for him. To the shock of everyone, he actually did well . . . going to school, and making it through class. He even started leaving the house again. Just when I thought we had passed the rough waters, we were back in the same boat in seventh grade. He started off strong, but within weeks was in melt-down mode. The school refusal started again, and life was a living to get him out of the house. Despite my hesitation to start him on meds again (I believed it to be the Stratterra for his ADHD that caused him to become suicidal), I was desperate and we started him on anti-anxiety meds. There was absolutely no impact on his anxiety from the medication, but rather, he began to show signs of OCD. He would tell me he felt the "need" to spin around or walk a certain way. With zero improvement in the anxiety, it was a no-brainer to discontinue his medication. While the anxiety remained, the OCD symptoms disappeared We then had him work with a school refusal specialist. Ben was awesome, and would literally show up at the house those mornings when we couldn't get Michael to school. He gave us some great tips for overcoming the school refusal, and for the most part they worked. That, and with an IEP in place, we had a much smoother year. And so far for this year, it is like night and day. So not sure how much puberty had to do with it . . . something really triggered him. ADHD is still there but that seems manageable compared to the anxiety and school refusal.
Our son is also experiencing extreme school anxiety and refusal. We put him in a partial hospitalization program but still ended up pulling him from his school because he just couldn't overcome the negative thoughts about it. I really do think it is based more in OCD than anxiety/performance issues. I want to have him tested for Lyme (and we lived in a high Lyme area for awhile) but getting out of the house proves to be very challenging at the moment. DASU, appreciated your rant . . . I could relate on so many levels. Yes, the ever elusive "normal" . . . I pretty much avoid Facebook and social media because it just reinforces how far from "normal" we are. Our dog tested positive for Lyme a few years ago. Has anyone heard of this causing a reaction in the PANDAS kids? I should probably have the dog and cat tested for strep too. Is there a specific test I should ask the vet for?
The backstory: DD was diagnosed with PANDAS last summer, and I began to believe DS (age 12) also had it. He has been officially diagnosed with ADHD and dysgraphia. We began a 2 week Abx trial last October that went well - he showed significant improvement. Also during the time of the Abx trial, we started him on ADHD medication, because sixth grade was proving to be a disaster for him. He couldn't focus, or be organized, and it was contributing to his anxiety. Our daughter had done well on ADHD medication, and we were hopeful it would provide some benefit. His doctor recommended Strattera, which is supposed to good for those that have anxiety and adversity to medication (he does not usually do well). It was disastrous . . . his mood lowered and his anxiety went thru the roof. Then, a strep outbreak hit his classroom in early November and w hat was once "manageable" morphed into full blown anxiety and school refusal. It got so bad that we had to put him in an anxiety/school refusal program. We were optimistic that he learned some good strategies, but two weeks after returning to school he was back in the same boat. And forget ever getting to the doctor for blood tests . . . we are back to not wanting to leave the house. So at this point, I don't even have an official PANDAS diagnosis for him. So, desperate to help him, I decided to focus on his anxiety and gave him l-lysine. That was on Monday. By Wednesday, he was telling me that "the voices were telling him to kill himself." While the ADHD had lowered his mood, he was never suicidal. I immediately made the connection to the l-lysine. Now, his ADHD doctor wants him on anti anxiety and/or anti depression medication, and he wants to do it in a hospitalized setting, so his reactions can be monitored. Of course, his ADHD doctor is skeptical on the l-lysine connection and PANDAS for that matter. So, we don't know what to do. Do we go ahead and try the anti anxiety/depressives (given his past responses, I would only want to do this in a hospitalized setting anyway), or do we try to manage otherwise. Being out of school has helped - he is much less stressed, but I am not sure that is a permanent solution. What else can we do?
Hello, Newbie here . . . dd13 got PANDAS dx in August after years of trying to figure out what what was wrong (I am sure many of you have been there). One of the things we most struggle with is the social deficits . . . over the years, what I have heard is "Asperger-like" but not ASD. And that darn stare. What I really want to know if anyone saw a great improvement with the social deficts after IVIG. Part of me thinks that the deficits are really because her brain has been inflamed all this time, and she missed out on the social learning process. If that is the case, then IVIG won't magically cure the social deficits, but maybe will give her the platform to be able to learn them. Right now, we have put IVIG on hold because of the cost. She is supposed to start high school next year, and I really want her to be a much better place then we are now. If IVIG will help in this regard, I am going to really push for it (DH is somewhat of a skeptic). As a side, I have seen a improvement with the abx . . . she actually began brushing her hair.
Just this week our PANDAS daughter came down with strep like symptoms while on abx. The strep test came back negative, even though my daughter was convinced she had it. She experienced the symptoms for about two days, then seemed to return to normal. Then the note came home from school that someone had strep. From what I have researched, It seems that some PANDAS kids just may react to strep even the infection is actually NOT in their bodies. I liken it to those peanut-allergy sufferers who have the allergic response even if they haven't eaten a peanut (airborne, etc.). A few months ago, also while on abx, she began to show strep symptoms. Thanks to this forum, I realized that the probiotics I had given her had the strep bacteria in them, and immediately discontinued them. The symptoms went away without any further treatment. I know she has also gotten strep from coconut yogurt (but that time she tested positive). Just food for thought.