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  1. 2 points
    MomWithOCDSon

    Sensory Processing or PANDAs?

    Kelly -- I suspect it is a combination of both...an unfortunate marriage of a genetic susceptibility and the PANDAS-related inflammatory response. And it may not be a "flare" so much as a continuation of the original PANDAs/PANS immune onslaught; many of us find that a "typical" or shorter course of antibiotics is insufficient for fully addressing our kids' conditions, so a two-week course may not have fully addressed the "animal" that is PANDAS/PANs. Our DS, too, had some mild sensory issues prior to a the full-blown PANDAs episode that sent us into a tailspin. Once the PANDAs hit full force, we had him professionally evaluated and as with most of his behavior set, the results came back "borderline." During PANDAs, he was alternately identified as "borderline" a number of things: OCD, Asperger's, PDD-NOS, Sensory Processing Disorder. You name it, the poor kid, at one point in time or another, wore a label for it. What I can tell you is that, with the conclusion of effective PANDAs treatment, the sensory and social issues resolved 100%. One doctor even took steps to revise his file to remove the former ASD notation he'd made there. I would say, however, that I don't think you are wasting any effort in giving her access to OT; I think it will only help her as she heals and enforce positive behaviors and coping strategies that will stand her in good stead going forward. All the best!
  2. 1 point
    puzzledguy

    New Blog!

    I've just started this blog. Feel free to follow it, and please pass it on to your adult children with PANS/PANDAS/Lyme! https://twiceapart.wordpress.com/
  3. 1 point
    MomWithOCDSon

    New member and mystery illness

    Fiddlegrl -- Welcome to the forum, though I'm sorry for all you've been through and the issues you're still fighting. I will say that I've been with this forum for many years now...first during my DS's illness and healing, and then somewhat less frequently for the last few years, checking in to follow up on old friends and any new research, and to chime in when something resonates with my experience. Pretty much ALL of the symptoms you've described, unfortunately, have been discussed here as part of the PANs/PANDAs continuum. It stinks. I don't have any practical experience with respect to Lyme and its co-infections; my DS's syndrome was clearly strep-related, though seasonal allergies exacerbated inflammation and the immune response for a number of years, once the PANDAs had kicked into high gear. Like you, though, we believe his behavioral issues were tied to atypical strep infections potentially as young as 3 years of age, though certainly by the age of 6 when he was officially given an OCD diagnosis. But he never tested positive (via swab and culture) for strep at the time, and no local doctors would give us the time of day regarding PANDAs then, either, so he went without any real treatment until he hit 12. That's when the PANDAs brought him to an absolutely non-functional state, the research coming out of NIMH, Columbia and Dr. Cunningham had progressed, and we were finally able to talk someone into an antibiotic trial. It was a long road, but the rest, as they say, is now thankfully pretty much history. As a result of our experience, though, I do think it likely that PANDAS/PANs sufferers who are at a more advanced age before receiving immune and/or anti-inflammatory therapies may have a harder road with respect to healing and "bouncing back;" not sure if that's because the brain "wiring" has matured more in the interim, or if the chronic inflammatory and auto-immune responses in the body are somehow more entrenched and therefore harder to reverse. In the end, it took my DS about 5 years in total to return to pretty much full functionality, and that was with auto-immune, therapeutic and psychiatric interventions all thrown into the mix. He continues to contend with some OCD and situational anxiety now and again, and I'm not convinced that this will ever disappear completely. But those issues remain at manageable levels (knock on wood), and he's happy and healthy and constructive and functional. Pretty much all we could ask for, after what he went through. I'm not sure how to advise you on any possible next steps, really, except to suggest that perhaps exploring some additional genetic markers and methylation issues might help you for the long term? You mentioned genetic testing for porphyria, but did you get a full work-up? A search here on the forum for "methylation" and "mutations" will lead you to multiple discussions regarding the methylation cycle and how genetic testing has helped point some families to a regimen of supplements and/or medications that proved to be more effective for them in light of various mutations and genetic predispositions. Perhaps that's worth a try? Finding a well-versed LLMD and/or integrative physician who could be your partner in working through these issues would be a bonus. Your post was very well-written, so I'm picturing an intelligent, capable and fairly "together" young woman, so I sincerely hope you're finding moments of joy and contentment in your everyday life, despite this tremendous burden. All the best to you!
  4. 1 point
    There are a few things to consider in this situation. First, how much GABA is he getting and when do you give it to him? Is he also on Theanine (it helps produce GABA)? Too much GABA can actually be converted back to glutamate, increasing that fight or flight response. You would see a jumpier, more anxious and fearful child in that case. You can try giving him GABA just once after dinner (and not in the morning). Second, are you doing anything to help him detox and excrete what the antibiotics are killing? If not, he likely needs kidney and liver support to start and perhaps something to help detox the brain. We use a homeopathic called Drainage Tone for brain detox. It really helps. We get it from our chiropractor or our doctor. Finally, when you start killing bacteria with the antibiotics, often yeast is released too (it hides in the cells with the bacteria and viruses). So, look for signs of a yeast flare. Perhaps treat with an anti-fungal like Nystatin or Lauricidin. Makes sure he drinks lots of water, give him epsom salt baths to help with detox, and, if you have access, a dry sauna. Hope some of these suggestions help.
  5. 1 point
    I am so sorry to hear about your struggles. Have your symptoms changed since you started the abx (antibiotic)? I don't have any experience with adult PANDAS, but can easily imagine that what we see in children can easily translate to what you are describe as an adult. If your symptoms did get worse since the abx started, search "herx" with the dialogue box in the top right corner, once you are in this group (rather than the entire site, or just a thread). That will give you a bunch of hits on experiences of getting worse before getting better on abx. Descriptions of herx are usually dramatic, but that might be because only the most dramatic reactions are noted and reported - there may very well be such a thing as a slow, drawn-out herx.
  6. 1 point
    MomWithOCDSon

    Antibiotics during flare question

    There are studies that speak to other properties of various antibiotics. For instance, beta-lactam antibiotics are thought to have glutamate-modulating properties, and another class (cephalasporins, maybe? my memory isn't what it used to be) are anti-inflammatory. And if your kid is taking Augmentin, for instance, that clavulanic acid component (Augmentin being amoxicillin plus clauvanate) is thought to have some neuro-protective characteristics of its own. There are multiple, older threads here about various antibiotic characteristics, and a Google search will give you some answers, too.
  7. 1 point
    Lydiasmum

    Request for success stories please!

    Hello everyone. I am struggling with positive mental attitude in any shape or form at the moment, even though my DD is in a relatively good place. The usual PANDA parent complaint - I am always looking for every little sign of a relapse. It's doing my head in. Assuming that families with the worst behind them are still using this forum, can I please ask for some good stories and how things really can change for the better. I would love to read about recoveries right now to give me something to look forward to. Thank you x
  8. 1 point
    P_Mom

    Request for success stories please!

    Abx., t/a removal, steroids twice for younger son (which were amazing) That is it. I'd give them a multi vitamin, fish oil and probiotics a few times a week too.
  9. 1 point
    ibcdbwc

    Request for success stories please!

    P-Mom, what treatments did you use?
  10. 1 point
    P_Mom

    Request for success stories please!

    HI! I have been gone from this forum for years, but, received an email notification that I was sent a pm! Imagine my surprise. So I browsed a bit and found this. I will just briefly say that I have (had ) two PANDAS boys. Onsets age 4 (severe) and 7 (mild/moderate). This happened after they both had strep in August 2007..... onsets were weeks apart. Our world was turned upside down....to put it lightly. Fast forward 7 years. Ages 11 and 14 now and BOTH sons are absolutely thriving......not even the most seasoned PANDAS parent would ever guess in a zillion years either of my sons ever had an issue. Hang in there. Time is your biggest healer.
  11. 1 point
    Brese

    Request for success stories please!

    My daughter is 9 and a complete success story. When she was 7 in August she woke up one morning saying she did not want to eat. Within 3 weeks she was no longer the child I knew. Once a child who was afraid of nothing, outgoing, happy, smart as a whip child was gone. She was convinced her food was poisoned, could not leave my side, aggressive, having terrible obsessive thoughts. Her clothes were contaminated everything she touched was contaminated. She was afraid of chemicals, people everything. Her handwriting was on a preschool level, she started developing problems walking, and developed facial tics, and her hands began to turn inward. I brought her to a psychologist because I thought she had OCD. She call the psychiatrist to see her the next morning. The put her on medication, clozipam, and medication for OCD. Her behavior was worse up for 3 days straight running and screaming. The only time she was better is when taking Advil. I could not accept my daughter would wake up with OCD and researched it and found PANDAS. I decided to bring her to neurologist for a consult. She was diagnosed with PANDAS treated with antibiotic for several weeks and received IVIG December of that year. By January she started eating and walking like normal, and touching things, and wearing the same clothes, by March her facial ticks were gone. She has had no symptoms for a 1 1/2 years now. No OCD, no separation anxiety, no aggression, straight A's, handwriting is beautiful like it never happened. She continued to see the psychiatrist and psychologist for behavior therapy. That did not last long because her recovery was so fast. The psychologist never had any experience with PANDAS and is now a firm believer. She said she never saw a child who was so mentally compromised come back so quickly. She now looks for the symptoms. We are blessed that we caught this so early and found people who could help us. We decided to give her the antibiotic when we know someone has strep. However, when she gets exposed she wakes up in the morning not quite right maybe wanting to organize her closet. By the third day of the antibiotic that organization has gone away. Never thought I would say I did not want my kid to be organized. Don't give up I would recommend the IVIG it gave her life back to her.
  12. 1 point
    I was unsure whether to post this to the need to vent or success stories thread. After an embarrassingly long period away from school because he was put on medical leave, my son started school again this past wed -- he is on day 4. Its not the same school he left for medical leave, but...im shocked and flabbgergasted by how well it is going. I set everything up for the return to school as if there will be phone calls to me and problems and...there just hasn't been. THings are going well. My son seems very happy to be there. I have been afraid to write this for fear that something will go wrong. It is a weird feeling when your day-to-day has been defined for so long by PANS-related problems and...then they seem to be fading (I was going to write gone but that seems too optimistic at this point).
  13. 1 point
    mwmmom

    Request for success stories please!

    My daughter just came home with a score of 100 on her math test. She is in 4th grade and doing great! She was totally overtaken by PANS 2 years ago and missed a large part of 2nd grade. Our journey is chronicled in a post titled a Message of Hope on August 28, 2012. Hang in there. You too will have a return of normalcy, but it takes time for our children. I am thankful for normal days and months each year. Please always remember to have HOPE and faith in their recovery!
  14. 1 point
    Lydiasmum

    Request for success stories please!

    Wow, thank you so much everyone. Your responses have made me smile (it's been a while). We are 18 months in to this nightmare and we have had 3 true flares and a few minor ones. Out of the 3 biggies though, I can honestly say the last 2 were not as dramatic as the first initial onset that made us sit up and say "what the *****?!" My daughter is on prophylaxis antibiotics and I use ibruprofen some days when mood is very erratic and it does seem to help a little. I have been struggling to enjoy those days and weeks that are good and this is going to change. I pray we are heading in the right direction - just like you guys! Thank you all. Keep the good stuff coming!.........
  15. 1 point
    amyjoy

    Request for success stories please!

    I love that, Nancy - The Church of Whatever Works. Would you mind if I use that phrase? Here is a copy of a success post I put on a different forum last week. Sharing successes is so important to keeping hope and faith in that all this nightmare can end, and will end, I believe, our children can heal. "A DOSE OF HOPE for everyone on this forum - my son who was sick for 7 years, and didn't even have his first ivig until he was nearly 15 years old- is not only better, but just received the official letter giving him a full four-year merit scholarship to his college of choice, and he is going. He is going off, by himself, because he's better now. There was no way to anticipate this. There was no possible way of knowing one year ago, or even 6 months ago, for certainty, that he could just go off to college like a normal kid. Please, no matter how awful it is, how sick your child is, how much you go into debt, how much you feel like dying at any given moment - please do not give up on your child or on yourself."
  16. 1 point
    We're still around off and on, though DS has been off abx for nearly 3 years now, and -- knock on wood -- things are good! He's happy, enjoys school, enjoys his friends. He's an honor student, and his team won the State VEX (robotics) championship this year, the efforts toward which had him keeping some very irregular hours (staying up late working, getting up early to travel to competitions), to no ill effects. He's now choosing colleges and looking forward to a summer program at one of his possibles . . . three weeks of engineering study on campus, like a real college student. Then back home for high school's senior year. It's been a crazy journey, and it's had its bumps, no question. But I feel pretty confident that we can continue to meet any of the challenges that pop up, what with all our experience, communities like this one, and DS's growing confidence and maturity. And I will say that none of the subsequent bumps, or flares, have been anything like the one that first put us on this road . . . much more manageable, shorter-lived, less intense. I would say know that time is an essential factor in healing, and as Nicklemama and some others have opined previously, consider joining The Church of Whatever Works! We'll all get to the other side, sooner or later!
  17. 1 point
    Broo100

    Request for success stories please!

    I also don't want to jinx it. We caught my son very very quickly were able to treat his strep and myco very early on. We have an ongoing protocol of probiotics and anti inflammatories that has worked very well. It also helped tremendously when I got his sisters' tonsils and adenoids out. They were chronic carriers although no pandas yet.
  18. 1 point
    ibcdbwc

    Request for success stories please!

    Also to the success storytellers - please don't leave the forum! For those of us still in the woods, we desperately need your wisdom!
  19. 1 point
    Rachel

    Request for success stories please!

    Keep sharing! I want to hear more. It's so encouraging.
  20. 1 point
    nicklemama

    Request for success stories please!

    I have a fear of posting this. Don't want to jinx things. After 4.5 years of dealing with this, DS, 10 has been very stable for his longest stretch. We have weathered a stomach virus, 3 colds w/ a terrible cough and a viral illness of some sort that produced a fever of 102. All this without even a blip this winter season. He had sudden onset with every listed symptom. Severe but has always managed to go and do well academically in school. IVIG twice. The big turn around has come after treatment for ehrlichia and anaplasma for the past year with augmentin and biaxin that also treated the Lyme we just got a strong positive on thru Igenex this week. He is not showing active infection but is 5 bands positive IgG. I'm not ready to say he's completely out of the woods but it's the first winter he's not flaired since this started in Oct 2009.
  21. 1 point
    sf_mom

    Request for success stories please!

    It also took a long time for us as well. 4 years and counting. However, I would consider all 3 of our children well recovered. We were dealing with many of the common issues that are associated with gestational/chronic Lyme: co-infections, biofilms, heavy metals, mold, vitamin/mineral deficiencies, methylation/detox issues, etc. We no longer experience the ups and downs of PANS with illness... none of our children currently have OCD or TICS. Our children have an awful disease but there were many blessings along with that diagnoses. All your efforts on your DDs behalf will by off in ways you will never imagine.
  22. 1 point
    LLM

    Request for success stories please!

    Yay Kath!! So happy to hear! We too seem to be out of the woods. It took a long, long time and a lot of money. It was more than strep. It was more than lyme. It was a half dozen things that all intertwined. But both kids came out on the other side and seem to be holding on to the good place they've been in for quite some time. I actually seem to have achieved a long time goal and weaned myself from this forum - a place that was once more essential to me than air. I know it feels like it may never happen, but if you keep digging, keep believing in your child and in yourself, recovery does happen. Hang in there!
  23. 1 point
    My son was very, very ill. It was a long journey from his 1st dx at age 2.5 to now at age 7.5. The very worst was at his 4th b'day right after a T&A. We lost him. He could barely manage to communicate at one point and rocked and rocked. However, we pushed on, 2 steps forward, 1 step back. Ages 4-5.5 were very hard, although I saw a more solid kiddo as time progressed. Big gun abx, 2 IVigs and GF diet later, he is doing great! He is solid, happy, very social in school and doing very well academically. He is a typical 7 year old kid. We occasionally see flares that are mild and infrequent. He recently had what I believe to have been Strep and the "fallout" was quite mild and short lived. He also started allergy shots and strangely, I think that they are immodulating his immune system. I expected them to cause flare but it seems the opposite. Anyway, it took blood, sweat and tears and I bet I have shaved of several years of my life, but he is on track an has been for quite a while now. I believe that recovery is a matter of several factors, not just one. I also believe that recovery (yes, i said the "R" word again) is entirely possible. warm thoughts to you and yours. Hang in there and DON'T GIVE UP! -Kath
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