Jump to content
ACN Latitudes Forums

Leaderboard


Popular Content

Showing content with the highest reputation since 02/25/2019 in all areas

  1. 1 point
    Chemar

    Possible PANS/PANDAS or Tourette's

    Hi there I just wanted to welcome you to the forum tho sorry for your child's struggles. Hopefully parents more knowledgeable than me re PANS/PANDAS will soon reply, but my understanding is that Tourette Syndrome and PANDAS are not mutually exclusive, and that yes, some kids are dx TS when in fact it is PANS
  2. 1 point
    h202

    Does PANDAS always have OCD and tics?

    We have a son who likely didn't have any significant tics or OCD relating to PANDAS. His primary symptoms are rages and increased hyperactivity. He had adhd symptoms from birth, but the rage and extreme hyperactivity came out of the blue when he was 6. He was always a quirky kid, but during the 6 months of his initial onset, many doctors and therapists and teachers suggested autism. After two months of abx and some trials of steroids, most of the problems had completely disappeared subject to periodic flares. Our situation is muddled by his pre-existing adhd diagnosis. He was already on adhd medication for his hyperactivity. It has been very hard to untangle four possible sources of behavior: (1) regular evolving behaviors of a 5-7 year old; (2) adhd; (3) pandas; or (4) adhd medication. Several months before he fell off the pandas cliff, he started having some increased problems in school. We increased his adhd medication. In hindsight he had a bunch of minor symptoms crop up between the time of increasing his adhd medication and his "pandas cliff" moment a few months later. Tics: Throat clearing, swallowing, sniffing, but usually only during concentrating on an activity. A significant increase in a complex stereotypy that he'd had since infancy. He developed a significant fear of spiders, bugs, hurricanes and sinkholes. But not serious enough fears that they interfered in daily life. In hindsight, we have no idea if all of this was pandas. Or caused by the adhd medication. It took almost a full year to tease out what symptoms came from what (and honestly, we are still working on it). The rages and increased hyperactivity went away on abx, so we are sure they are pandas. The fears mostly went away when we changed his adhd medication. The tics and stereotypy lingered. And then we stopped his adhd meds altogether over this xmas break, and both tics and stereotypy 90% disappeared. His pandas specialists never though the tic was from pandas - because he only did it when he worked on certain activities. And she never thought his fears were sufficient to count as pandas OCD, because they were pretty minor. She said that anecdotally she has seen a subset of pandas kids who don't exhibit classic pandas (ocd and anxiety) but instead show as more autism/stereotypy/hyper -- and that these kids are often adhd/autism-light kids to begin with. Which describes my son. Not sure if that helps your question.
  3. 1 point
    mmw

    Does PANDAS always have OCD and tics?

    When my son was young we thought he was very sensitive and had a difficult temperament. He eventually did get tics, hallucinations, you name it every time he had strep but before that he was just a VERY difficult child when it turned out he had strep. Like having to be physically pulled out of the car at preschool. He never quite seemed to know how to act either- lots of social issues. We treated with abx for years and did Brain Balance and all of his aspie symptoms went away. When he did have an episode of rage it turned out his younger sister had a simmering strep infection. He is now 18, totally healed, sweetest and the most laid back guy you would ever hope to meet. It was the PANDAS. It is gone .
  4. 1 point
    mdl, We knew our daughter had processing issues when she was 2 years old. But we never really thought of pandas. I think of some of these conditions are connected to a compromised, or hypersensitive immune system. So PANDAS is probably a side effect of something else, rather then the cause of all of this. The OCD was sort of as you described. Like if a child hit her, she might tell that story as her greeting statement as if it just happened. "Ellie hit me, right here on the arm" for months after it happened. But that might be the only sign. When the PANDAS hit, she suddenly wouldn't go to some restaurants, checked the locks at night, was terrified of bridges, limited diets, no one could say "blood" without her freaking. I literally had to read her science book to her and replace the word "blood" with "red stuff." But things are much better. There was a freaky event back in October where we went to a restaurant and the wall (2 stories high) was literally covered with spiders. Anyone using the handrail would have gotten hundreds, maybe thousands of spiders on them. She couldn't see them in the dim light, so I told her to stay away from the wall. So she looked closer. Ran to the car and screamed and cried for an hours. We just went back to that restaurant yesterday for the first time. So, even with the PANDAS being low key, it took her months to process that event enough to go back.
  5. 1 point
    mdl

    Does PANDAS always have OCD and tics?

    For a long time we thought that our daughter had one of the rare cases of PANS without OCD until we figured out that her OCD just didn't look like the typical manifestations of OCD. Sometimes she would get stuck on something and not be able to let it go or she would be very negative about everything. She was actually having obsessive thoughts that fit an OCD pattern, but there usually were no particular compulsions that went with the obsessive thoughts. Later we also realized that there were obsessive thoughts underlying some of her behaviors and she just never articulated those thoughts. No one knew what was going on in her mind except her. Now that she's a bit older we have lots of conversations about what constitutes a normal worry and what is an obsessive thought and we have a window into her mind that has helped us to help her. I think it's also has been a relief to her. For a long time I read list after list of OCD symptoms in kids and nothing seemed to fit. I don't know if this is common for PANS/PANDAS kids, but her OCD didn't fit anything I read. She's doing much better now, but has some lingering symptoms that come and go, and it's only been more recently that we've seen some more straightforward OCD symptoms.
  6. 1 point
    When I was young, I used to take apart old computers, turn them on, and then watch what happened as I took my ground probe and touched different circuits. I could get all sorts of colorful patterns on the screen, but oddly, never the same pattern twice. I think PANDAS is a little like that. The immune system goes crazy and generally in a predictable way. But it's also different with everyone and even within the same person, it changes. I know my daughter has pandas, but right now, I wouldn't say that she is really OCD. She has been really bad in the past, but right now, it doesn't hamper us too much. To me, most mental issues come down to identity. If something in my daughter's day implies that she is stupid or fat, she gets super distressed, even suicidal, filled with rage, and then depression. This is tricky because kids aren't dumb. If you do too much for them, they think they are stupid and that can trigger a downward spiral. But, if you don't do enough, or imply that they need to do more, it can trigger that they are not loved, and BOOM. I think, because of the increased sensitivity because of the over-active brains stuff, destructive mental loops can be very harsh on these kids. I try to set rules that are "necessary" and be pretty lax on other stuff. My daughter likes to change clothes 10x a day, then complain there isn't anything to wear. Convincing she that wearing something twice, if worn for a short time is OK, has been tough, but laundry is once a week. She has to work within that. She doesn't like it, but she doesn't freak out anymore. I don't lie to my kid, but I think of things to say that can build her self esteem back up. Getting her to realize that she WILL get her feelings hurt and need to continue on has been tough. Just today, some off handed put down from her cyber school teacher had her in a tizzy for 15 minutes. But, it was only 15 minutes and not 6 hours (or even days) like it has been in the past. Suicidal feelings are actually confused survival instincts. When the consciousness feels like it has changed too much from what it was, or has been rejected by those it loves, it wants to hit the reset button, (assuming its self immortal (which is another discussion.)) So, the suicidal expressions can really require some quick reassurances that you still love them and even if this stuff is really crazy, you will always love them. It can seem like you are carrying a lot of their personal responsibility for self preservation, but having gone through this, that is something that you can teach later.
  7. 1 point
    jsl25

    Does PANDAS always have OCD and tics?

    Some of the things you listed at the bottom of the post could be considered OCD. For example, my daughter’s OCD is around clothes and how things “feel”.
  8. 1 point
    mamafour

    Information about Plasma Exchange

    Our daughter was treated with plasmapheresis in 2017. She has pandas/Pans but not Lyme (we think?). She was typically treated adequately with antibiotics but for whatever reason we couldn’t get that one flare under control with abx or prednisone, so we went looking for ivig. .. The immunologist we found had more success in his patients with plasmapheresis than ivig. Our daughter’s symptoms were severe at this point. It is also often easier to get insurance coverage for plasmapheresis than ivig, which is curious to me. For all these reasons, we went with plasmapheresis, and would do it again in a heartbeat. I cannot express how life-changing it was. (Two years out we may be needing it again, and if we do, I will be nothing but optimistic going into it.) We are in VA so I don’t think I can help as far as who can treat near you. However, don’t take the “it’s impossible to get in CA” and just give up.... start making phone calls. Call area hospitals and ask if they do plasmapheresis at ALL, regardless of reason. Ask which immunologists order it. Work backwards from there. You are at an advantage because of your son’s age, as the issue is often finding an apheresis unit with the capability of treating a peds patient. Your son is not a peds patient so you already don’t have that barrier! I do not have experience with Lyme related to plasmapheresis. Also don’t take the “insurance won’t cover” without checking your plan on your own. You can call and ask if the cpt code is covered (I don’t have it in front of me but could find it) and whether it needs preauth. Don’t give up. Hope I helped or at least gave hope. Good luck.
  9. 1 point
    MomWithOCDSon

    Looking for success stories

    Welcome to the forum, but sorry your family has been forced to deal with PANDAS/PANs. As you do some reading here, you'll find that our stories, including treatment protocols, can vary widely. What does seem to be a thru-line to some extent, however, are commonalities among behaviors that we see in our kids when they're sick. There's some commonality in response to various medications and supplements, too, but not always. Time frames vary dramatically, also; I have my suspicions that this variance has to do with age at diagnosis, length of time the child was suffering due to PANDAS/PANs but went incorrectly diagnosed prior to diagnosis and treatment, and similar temporal differences. My DS was diagnosed with "regular OCD" at age 6 and went through a second "flare" or exacerbation at about 7.5 years. We inquired about PANDAS with ped, therapist, and ultimately a psych as well but were told it wasn't "real," and since our DS was classically asymptomatic for strep, we couldn't demonstrate a link, either. So we treated with therapy and finally an SSRI (Lexapro) until he turned 12. At 12, he completely flipped out. Went from being fully functional, funny, social, academically gifted, to a basket case. Couldn't read, sleep, play, eat. Psych kept switching up psych meds . . . different doses, different formulas. Nothing worked, and he just got worse. "Saving Sammy" and subsequent email conversations with its author, Beth Maloney, turned our attention back to PANDAS/PANS, particularly since Sammy was classically asymptomatic also. Ultimately, we were able to prove some atypical immune response through blood tests, and our ped was, gratefully, willing to give us an abx trial. Based on Sammy's protocol and our DS's similarity to Sammy in terms of age, behavior set, etc., we began with Augmentin XR, 1,000 mg., twice daily. When I found this forum and connected with a number of other families and great minds who were deep into the latest research, helping their own families and others, too, we began to explore other supplements that could assist DS with respect to immune balance and behavior; we also found a PANDAS-literate psych and reduced his SSRI dose and changed the med, as well, to Zoloft. We looked into IVIG but did not pursue it for a number of reasons, not the least of which was DS was so positively responsive to abx, we didn't entirely see the need for another, more expensive intervention. DS was on the XR for nearly 2 years; we slowly weaned him off the last 4 months or so. He also continued on Zoloft and certain supplements we found seemed to help him on an ongoing basis: NAC, B6, zinc, quercitin, omegas and magnesium. We also kept him on probiotics (sach b. and a mixed flora) during the abx and for quite some time afterward. ERP therapy was also his constant companion, twice each week for the first year or so following his PANDAS dx, and then edging off slowly as we saw him gaining more traction over the OCD, and as we became more and more literate as parents in terms of helping him beat back the OCD at home, rather than accommodating it. He's now 17 and I consider him a success story. He can now maintain his health -- mental and physical -- even when exposed to strep. He's been off abx for nearly 3 years, though he continues on a low-dose SSRI. I've found a compounding vitamin supplier and have been able to order a custom blend multivitamin for him that contains the things we know help, and leaves out the components we've seen can have negative impacts for him. He is back to his functional self -- funny, fun, bright, in AP and honors classes in his senior year in high school, has friends, etc. He still contends with some OCD; whether or not that's because he was dealing with that for 6 years before we were successful in getting PANDAS intervention I can't say for sure, but that's what I suspect. His brain was being wired those 6 years, so undoing that will likely continue to take some time. I wish you all the best, and from our experience I will offer two key perspectives: 1) time is an important component in the healing process; and 2) don't ever give up!


×