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Sirena

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  1. Like
    Sirena got a reaction from eacampbell67 in PANDAS - Hearing Sensitivity Treatments   
    For what its worth, I developed hyperaccussis--extreme sound sensitivity which responded to Aleve at prescription doses for 5-10 days or so to get it to calm down and if it starts to act up again, I go back on the aleve (naproxen sodium). 
  2. Like
    Sirena reacted to EAMom in desperately sick/starting Rituximab infusions - what to expect?   
    I don't think Dr. B is a lyme expert (he's not an LLMD), but I think he knows enough to test for Lyme (esp being in CT!). IMHO I would treat the Lyme (did he test for any coinfections like Babeisa or Bartonella?) before considering Rituximab. Rituximab may decrease the autoimmune response to Lyme (don't know why it wouldn't) but since it suppresses the immune system, I'm worried that won't be enough and it may make the underlying infection harder to treat in the long run.
     
    I know Prednisone (esp. long term) is contraindicated in Lyme, and I would think Rituximab would be even worse (in terms of immune suppression).
     
    If he is worse on the doxy it may be a herx, or he may not be tolerating it for other reasons. I know a LLMD could help you sort this out. Some also use herbal antibiotics.
     
    Also, if tick borne diseases are your underlying problem, treating those may be enough, w/out going down the Rituximab road.
  3. Like
    Sirena reacted to EAMom in desperately sick/starting Rituximab infusions - what to expect?   
    I would be worried that there is still an infection, esp with the history of Lyme. I wonder if Lyme is still there (and or coinfections like Babesia or bartonella).
  4. Like
    Sirena got a reaction from bigd2442 in Pandas - When to move on to IVIG after trying Augmentin?   
    Hi Newbie,
    I have a couple thoughts on getting the compliance/participation. It seems that often our kiddos' "fight or flight" reaction is hypersensitive-hyperactive and beyond their physiological control, so anything that might trigger it is going to get you into the battle zone rapidly and unwittingly. So, preparing ahead by thinking about how to keep kiddo soothed will help. So, if you've had to resort to calling the police, your going to have to prepare in the future on how you can make the experience 5x more fun/positive than however "bad" it seems to him. So, while in a normal situation being over the top accommodating would be looked at as encouraging bad behavior, here you are dealing with a brain on fire that doesn't work normally and can't be expected to handle even minor stress well. With our kiddo, when we started this mess, I took him to buy a small lego set after getting his blood drawn. He's Lego crazy, so this helped. Little did I know how many blood draws were to follow!!! But we have kept up this tradition and he earned larger Lego sets (or playmobile) when he had other procedures like IViG, MRI, EEG, etc, etc. Often he will pick out the gift ahead of time so that you can use the anticipation of something good happening immediately after he does what you want him to do. I hate to think how much we have spent on Lego, but it has REALLY helped him cope and find an "upside" to the whole mess. One other thought, these kids often secretly blame themselves for being ill/behaving badly and it's very important for their psyche to externalize the illness. So, you might want to share that you know it was the PANS itself doing a number on his brain that made it so hard to get into the car to go to the doctor, but that you understad that it was not "him" misbehaving. So, you are going to devise a plan to help fight the PANS/Bad antibodies/or whatever you call "it." You can get his input or surprise him. For example, I'm imagining a colorful gift bag with balloons attached and perhaps some small (dollar store?) gifts and kiddo gets to open the first one when he is buckled in the car. I'm sure you'll know what your kid is likely to respond to positively. Lastly, giving kids lots of opportunities to feel "in control" in this crazy situation if helpful to them and the situation. So, choices like, "Do you want to wear or not wear your coat in the car?" Would you like the radio on or off? Do you want to take the ipad or not? They need empowering in this difficult situation...Hugs, hope something in this helps...
  5. Like
    Sirena reacted to Sirena in Could PANS/PANDAS cause high blood pressure and brain seizure with additional infection?   
    Way to familiar...our journey started with strep and negative "standard" it/Tim Lyme tests and lots of treatments over a year until we finally found and started treatment for Babesia duncani, bartonella and Lyme. Babesia ca lead to nasty horrible PANS. Cunningham and full igenix panel was well worth it for us.
  6. Like
    Sirena reacted to mama2alex in Pandas - When to move on to IVIG after trying Augmentin?   
    MC2 and Confusedmom, I'd highly recommend comprehensive testing for any/all infections that could be involved. This is often more complicated than "just strep." A good LLMD can test for all of the following plus: Lyme, Bartonella, Babesia, Mycoplasma, Epstein Barr virus, HHV6, and Candida overgrowth.
     
    Once you've done all the testing and had a comprehensive evaluation by an LLMD, you can really target the antibiotics and make sure you're not missing anything right from the start.
  7. Like
    Sirena got a reaction from wisdom_seeker in babesia testing (ECP? IGeneX?) and Malarone + Alinia treatment   
    Can we start a Babesia subgroup????
    Our DS is in the 3rd month of Babs treatment and going for IVIG tomorrow as his encephalitis is bad (CAMKII was 231%). He is on mepron and clindamycin, plus glutathione and probiotics.
     
    Sirena
  8. Like
    Sirena reacted to wisdom_seeker in Anyone going to the PANDAS conference this weekend in DC?   
    I went. Would have loved to meet up with other Latitudes parents!
     
    What did you think? About the different IVIG protocols, Amy Smith's talk (I was impressed!!), behavioral treatment advice, etc.?
  9. Like
    Sirena reacted to JSL25 in Philadelphia Area Doctors that believe in PANDAS/ PANS   
    I'm also in the Philadelphia area seeking out treatment. I've been calling around all week and will let you know if I come up with anything. So far CHOP has been no help at all. Neither has DuPont. I've been to several docs at both places.
  10. Like
    Sirena got a reaction from EAMom in Cefdinir VS Amox   
    I'd ask for cefdinr. My son was on it once for a long time while waiting for an oral surgery date. Maybe a 3rd antibiotic worth trying...meanwhile, you'll need to figure out if there is a reservoir of infection (like tonsils) and where things stand with inflammation...
  11. Like
    Sirena reacted to nicklemama in Heartbroken--I feel like were losing ds, age 6   
    When PANDAS kids fail to get better, it's time to look at Lyme and coinfections. Been there, done that.
  12. Like
    Sirena reacted to rowingmom in Heartbroken--I feel like were losing ds, age 6   
    I agree with dasu. If treating PANDAS is not working, you need to investigate PANS triggers. Bartonella, babesia, and with seizures, ehrlichia. Aggression and raging is often caused by bartonella infection.
     
    Please don't give up. Your child will improve when you target the proper infections.
     
    Check for methylation defects, which can be caused either by genetic deletion or simply result from the methylation cycles being overwhelmed by toxins (produced either by bacterial die-off or by pesticides/metal adjuvants in vaccinations).
     
    Try to eat as organically as possible. Glyphosate acts as both an antibiotic (will kill beneficial gut bacteria which is a significant part of the immune system) and a mineral chelator (will tie up essential minerals found in both plant and animal food, rendering it unavailable for absorption).
     
    http://www.mdpi.com/...-4300/15/4/1416
     
    http://articles.merc...th-effects.aspx
     
    http://people.csail.mit.edu/seneff/
     
    Be aware than almost all conventional legumes and grains are sprayed with glyphosate (RoundUp) before harvest to help to uniformly dry the plants. If wheat, beans etc. don't say "organic", they are likely sprayed. GMO's get a double whammy.
     
    Most GMO's are grown to feed CFAO animals. Glyphosate is stored in their tissues and we eat it when we eat conventionally raised meat. Try for grass fed.
  13. Like
    Sirena reacted to ibcdbwc in I want to know the "why's".....   
    I would like to add just 1 cent to this conversation. My son is 14. An interesting development occurred in that he is now able to describe what a flare feels like for him. This never used to be. When he was not flaring, he barely remembered the flare itself. And in a flare, communication was next to impossible.
     
    But a light bulb occurred. He can now describe it. He can now remember it. Unfortunately he also lives in fear of "it happening again." When he is flaring, his brain is swollen. To him, he feels like his head is wrapped tightly in a dark cloth. He can still hear noise and see light but he cannot process quickly enough. It's like everything is completely muffled and filtered. He's present but things are moving along without him. He simply cannot follow along in class. And that makes him feel so sad and so anxious. Because normally, he is sharp and follows right along. In fact normally he's used to being very efficient and at the top.
     
    When reading text in a flare, he must read words over and over and over to make any sense of them. His short term memory in a flare is completely gone. His working memory is also gone. With complex math for instance which is normally easy for him - he still knows how to do the problem but gets lost in the steps. He cant remember which steps he's already completed. And simple math concepts like adding positive and negative numbers are all but forgotten. There is some sort of plug in his brain. Some sort of block. I have caught him a number of times, literally smacking himself trying to figure it out.
     
    The anxiety created from all of this is incredible. He literally loses his mind -- and he now knows it -- and that makes him understandably incredibly anxious in a flare. It's horrific. Add in the OCD and food refusal - ugh. My son isolates in a flare. He knows its not his normal him.
     
    If your son is like mine its no wonder they don't want to go to school when they are flaring. It's painful to not be able to do the things they know they should be able to do.
  14. Like
    Sirena reacted to EAMom in FREE tick testing   
    "Ticks will be tested for 6 pathogens: Borrelia burgdorferi, which causes Lyme disease;Borrelia miyamotoi, which causes tick-borne relapsing fever; Anaplasma phagocytophilum, which causes human granulocytic anaplasmosis, Ehrlichia chafeensis, which causes human monocytic erhlichiosis, and Rickettsia rickettsii, the agent of Rocky-mountain spotted fever, and the protozoan pathogen, Babesia microti."

    More info here http://www.bayarealyme.org/lyme-disease-prevention/tick-testing/


  15. Like
    Sirena got a reaction from MissionMama in I want to know the "why's".....   
    Hi Kristi,
     
    It is so crazy and difficult--and so hard for the whole family...we are 10 months in with a severe case and while it's better than a month ago, it's still so debilitating. Anyway, just a couple other thoughts...we've started antioxidants and I feel like it's helping--buts that's ancedotal. Also--how about ANA? Maybe there's a clue there.
     
    sirena
  16. Like
    Sirena reacted to demeter in 100% Ritual Free in Six Weeks.....CBT/ERP Works!   
    We went to Rogers Behavioral Health in Tampa. I am speaking from our experience at their facility, which was awesome!
    Their program starts at 8:00 and is done at 2:30 M-F. There is some group therapy and lunch for all the kids together. But mostly the kids spend time working on their own exposures. It is fun environment and lots of interaction between all the kids and the staff. Every family has their own room, although there is always lots of activity and freedom. Although all the staff interacts with everyone, they will be assigned a therapist. My son's therapist, Dr Katie was fantastic, she is great with all the kids and parents. All the therapists incredibly knowledgeable and caring. Although we had never really tried CBT/ERP, many families had and we're amazed at how this program was sooooo much more effective than any other so called CBT therapists or programs they had used. Most families travel to Tampa from far away. My non pandas daughter came with us most days,they were great with her and she enjoyed the environment as well. I was worried about how hard it would be as a parent to watch my son struggle after all our years of comforting him, and majorly accommodating his OCD. It was not mean in anyway, they truly start at a low level before working on the very difficult issues. The amazing thing is these kids do not appear to fight the treatment, if they do it seems short lived. Our son was very motivated, he was so tired of OCD and being dragged from doctor to doctor and intervention after intervention. The kids work very hard for their therapist and most try to do their "exposure" homework each night. The program is very individualized. Although my son is 11 the other kids in his group were in their later teens. He is texting with them on a regular basis! Friendships made here I think will be lasting.
    The best things to come out of this program is my son is back! And I don't mean just a little better, I mean 100 percent back! He has no intrusive thoughts, no anxiety no compulsions, no rituals.....NO OCD! The things that created such fear and anxiety that he would cry and scream about, he laughs at now, I am not exaggerating! The other great thing is he feels so empowered over his OCD, rather than beholden to the next treatment and "wait and see" game. The third is I am not as fearful of the next dip or flare. We as a family know what to do.
    He truly is a Pans kid, diagnosed and treated initially by Dr T. The treatments worked at first. When he flared big time almost two years ago, no medical treatment seemed to help and we went to several Pandas specialists, and did many interventions and treated many underlying infections. I wish we had added Rogers sooner. CBT/ERP and medical treatment don't need to be mutually exclusive, they can be done together! I think this gets hugely overlooked in the Pans world! The amount of money and time we would have saved would have been worth all the effort it took to travel to Rogers. I highly suggest you look into Rogers as well as Rothman. If you are going down you might as well get a full day of treatment. I know each kid is different, but I strongly feel my kid is like many of the kids here from the stories I read on this forum. As much as it may be hard for some to think a "pysch" treatment will help an autoimmune condition issue, in the end it doesn't matter as long as your child is better! My kid is fantastic, truly fantastic. CBT/ERP worked for his OCD despite what the underlying trigger may have been. We have no known family history. I know the verdict is out on how long this will last. However, he has a therapist he will be following up with, and he is continuing to stay on top of things so the OCD doesn't reignite. The statistics are very positive for the proper CBT/ERP in kids.
    Please, please feel free to ask me questions, or contact me personally. I am more than willing to share, and I also have some personal contacts as well. Also my son is willing to talk to parents or kids. I truly want others to feel how we are right now, eight weeks ago we are a wreck!
  17. Like
    Sirena reacted to Sirena in Confused mom in maryland - need advice   
    Another vote for Dr. L. You might also print off a copy of the diagnosis algorithm from the ppn and try to get another doc to run them. Send rate and crp are useful for indicating active inflammatory process which tends to get a doctor's attention. Also, you can request lidocaine cream to be placed on your kids arm for twenty minutes before the blood draw to minimize the discomfort. I was able to get a tube prescribe by our pediatrician and I carry it with me in case they don't have it handy at the lab.
  18. Like
    Sirena reacted to bigmighty in insurance appeal advice   
    Not getting anywhere finding insurance companies that cover IVIG for PANDAS. Are there any out there that are covering it for PANS rather than accompanying CVIDs?
  19. Like
    Sirena reacted to qannie47 in IVIg authorized & scheduled! Any tips and advice?   
    Fill the prednisone script to have on hand. At the first sign of any headache...give it to him. The second time around, I waited 4 hours to fill script after headache appeared, and the headache got too out of control and took days to go away..... The first time, when I administered immediately, it went away instantly and stayed away.
  20. Like
    Sirena reacted to mama2alex in IVIg authorized & scheduled! Any tips and advice?   
    Start hydrating pretty aggressively the day before and contine until he feels back to normal (if he has side effects). Good luck!
  21. Like
    Sirena got a reaction from MomWithOCDSon in One month post tonsillectomy & doing great!   
    Or DS, who just turned 7, had a tonsillectomy one month ago as advised by Dr.L. Dr.H at GU did it and sent samples for DNA based identification. Based on the results, DS was given azith on top of the clindamycin he's been on. Just this week, our kiddo is back!! Such a blessing! I know we are fortunate bc this started for us in Mid-May so in the big scheme of things--we got pretty lucky figuring it out and getting the right help.
     
    We still have emotional and behavioral "fall out" to deal with -meaning some bad habits that were acquired--but I think that is all manageable if we can maintain the gains. So thanks to everyone on this board. Your support and hard won wisdom and advice has been our guiding light and absolutely Indispensible. I realize that this might not be the end of it all so I will continue to rely on your collective wisdom. Wishing you all strength, hope and perseverance.
    Sirena
  22. Like
    Sirena got a reaction from mama2alex in One month post tonsillectomy & doing great!   
    Or DS, who just turned 7, had a tonsillectomy one month ago as advised by Dr.L. Dr.H at GU did it and sent samples for DNA based identification. Based on the results, DS was given azith on top of the clindamycin he's been on. Just this week, our kiddo is back!! Such a blessing! I know we are fortunate bc this started for us in Mid-May so in the big scheme of things--we got pretty lucky figuring it out and getting the right help.
     
    We still have emotional and behavioral "fall out" to deal with -meaning some bad habits that were acquired--but I think that is all manageable if we can maintain the gains. So thanks to everyone on this board. Your support and hard won wisdom and advice has been our guiding light and absolutely Indispensible. I realize that this might not be the end of it all so I will continue to rely on your collective wisdom. Wishing you all strength, hope and perseverance.
    Sirena
  23. Like
    Sirena got a reaction from MaryAW in Heartbroken--I feel like were losing ds, age 6   
    Hi All,
    Thanks for encouragement and support. For the record, we are still very new with this diagnosis, but we are lucky that we have a diagnosis relatively quickly (1-2 months from major onset). We have done Lyme and Co-infection tests, but all normal so far. I was worried about those even before all of this especially because my husband has Anaplasmosis. I think we've now ruled out just about all other likely alternative diagnoses and so I'm settling into a PANDAS diagnosis.
     
    So, game on! Somehow we'll get through it... Right?!!
     
    Holding on,
    Sirena
  24. Like
    Sirena got a reaction from putting together the piece in Child in Psych ward need advice asap. please!   
    Just a couple of thoughts: 1) Do you have a case manager with your insurance or is there a special needs coordinator? You may find them helpful in advocating for appropriate care--but remember, they still work for the insurance and will not necessarily have your child's best interest all the time. 2) If there is some medicine that they want to give him that is not appropriate for his particular condition or previous bad reaction, then you might find dropping the term "contraindicated" into your conversation with the doctor such as "Hmm, I thought Risperadal is contraindicated given his previous reaction to it." 3) Is he on or has he been given any anti-inflammatories? Do they help him? If not, you might insist that they try one prior to trying any anti-psychotics. I still can't believe the difference it makes for my kiddo. 4) You might also ask the treating physician point blank "How many PANS patients have you personally treated?"
     
    Also, there are state based advocacy groups for kids with special needs. I have found them to be extremely knowledgeable and great resources. You might want to find them and make a call to a family advocate. They can be helpful in connecting you to resources and helping to know your child's rights and how to advocate for them. They may also know about alternative settings or the possibility of home healthcare to help keep your child safe but at home...
     
    Wishing you the best,
     
    Sirena
     
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