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DsMom

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  1. Like
    DsMom got a reaction from MomWithOCDSon in Most Effectives Treatments for PANS/PANDAS   
    My DS is now 17 and applying to colleges, never thought we'd see that day. Like BOBH  mentioned my DS reacted to Vit D and O3's like we had given him LSD. Super scary. But he was a paradoxical reactor as so many PANS kids are.
    He also was super sensi to Probiotics but I vetted the ones he took like no-tomorrow and keep copious notes on how he reacted to everything. He's the full meal deal - PANDAS Plus who never stopped flaring once he started for almost 4 years, missed almost 4 full years of any type of school he was so impacted, and was also diagnosed with Lyme and POTS. I think he was on Abx for over 4 years straight.
    Game changers for him were getting the Strep out (took over 6 months and a tonsillectomy) at the beginning of his illness, then 2 years later him getting Plasmapheresis  (TY Dr. L), and now for the past year HBOT has been UNBELIEVABLE for Lyme symptoms, so we now have one of our own. Look into hyperbaric oxygen therapy for Lyme...
    My boy was almost 12 when he crashed, IVIg didn't help at all, Abx kept him from getting Strep again but didn't help him stop flaring, ibuprofen took the teeny tiniest edge off him and he took 3 caps every 4 hours for 12-18 months if not longer. PEX was huge for us, although he got worse before better, but we got the suicidal depression and schizophrenic crazy gone and our boys mind back as a result of it.
    He's 17 now talking about perusing an engineering degree. Dec 11th as the 6th year anniversary of his crash. It's like a bad dream we are waking up from finally, thank gosh. I sincerely hope your boy gets well soon.
  2. Like
    DsMom got a reaction from eacampbell67 in Most Effectives Treatments for PANS/PANDAS   
    My DS is now 17 and applying to colleges, never thought we'd see that day. Like BOBH  mentioned my DS reacted to Vit D and O3's like we had given him LSD. Super scary. But he was a paradoxical reactor as so many PANS kids are.
    He also was super sensi to Probiotics but I vetted the ones he took like no-tomorrow and keep copious notes on how he reacted to everything. He's the full meal deal - PANDAS Plus who never stopped flaring once he started for almost 4 years, missed almost 4 full years of any type of school he was so impacted, and was also diagnosed with Lyme and POTS. I think he was on Abx for over 4 years straight.
    Game changers for him were getting the Strep out (took over 6 months and a tonsillectomy) at the beginning of his illness, then 2 years later him getting Plasmapheresis  (TY Dr. L), and now for the past year HBOT has been UNBELIEVABLE for Lyme symptoms, so we now have one of our own. Look into hyperbaric oxygen therapy for Lyme...
    My boy was almost 12 when he crashed, IVIg didn't help at all, Abx kept him from getting Strep again but didn't help him stop flaring, ibuprofen took the teeny tiniest edge off him and he took 3 caps every 4 hours for 12-18 months if not longer. PEX was huge for us, although he got worse before better, but we got the suicidal depression and schizophrenic crazy gone and our boys mind back as a result of it.
    He's 17 now talking about perusing an engineering degree. Dec 11th as the 6th year anniversary of his crash. It's like a bad dream we are waking up from finally, thank gosh. I sincerely hope your boy gets well soon.
  3. Like
    DsMom reacted to 4Nikki in Cunningham Panel results help? Anti Tubulin means....?   
    It's All way over my head: http://www.jimmunol.org/content/178/11/7412.full
     
    Home WHAT DOES THE CUNNINGHAM…
     
    The Cunningham Panel™ is comprised of five (5) different tests. Four of these clinical tests include enzyme-linked immunosorbent assays (ELISAs) to measure antibody titers against four neuronal antigens present in the brain; these neuronal antigens include:
    1. Anti-Dopamine Receptor D1
    2. Anti-Dopamine Receptor D2L
    3. Anti-Lysoganglioside GM1
    4. Anti-Tubulin
    Each of these neuronal antigen targets were chosen because of a correlation with symptoms of neuropsychiatric behavior. Many targets were originally screened and tested, and did, or did not, show significance. The tests we selected include the four (4) autoimmune neurologic targets (anti-dopamine D1, anti-dopamine D2L, anti-tubulin and anti-lysoganglioside) which are highly concentrated in neuronal cells in the brain and have involvement in neuropsychiatric and/or motor movement activity.
    Anti-Dopamine Receptors
    Dopamine D1 receptors are highly concentrated on post-synaptic neurons in the brain whereas Dopamine D2L receptors are highly concentrated on pre and post-synaptic neurons. Normal functioning of dopamine receptors are responsible for many neurologic processes such as fine motor control, cognition and other forms of behavior.
    Anti-Lysoganglioside
    Lysoganglioside GM1 is a concentrated in the central nervous system and associated with membranes of nerve cells. Autoantibodies directed against lysoganglioside may interfere with normal neurologic activity and have also been associated with degenerative neurologic conditions such as Gillian-Barre syndrome and other neurologic disorders.
    Anti-Tubulin
    Tubulin is an intracellular scaffolding protein located in all cells but in high concentrations within the cells of the brain. Anti-tubulin antibodies may interfere with normal neuronal cell function and have been associated with other autoimmune related conditions such as Hashimoto’s Thyroiditis and other autoimmune thyroid conditions.
    CaMKII
    The fifth test, CaMKII (Calcium-dependent Calmodulin Protein Kinase II) is a cell stimulation assay in which human serum is incubated on human neuronal cells. CaMKII is involved in the up-regulation of many neurotransmitters in the brain. The increase or stimulation of CaMKII activity by serum antibodies is measured compared to a baseline control and elevated activity may be associated with an infection-triggered autoimmune condition.
    Reference Normal Ranges
    Each of the five tests include a “Normal Range” which is a range of values ascertained by testing an appropriately identified normal pediatric population for this type of panel. The normal ranges are listed in a table under each of the five test headings.
    PANDAS and PANS diagnoses are based upon defined clinical characteristics. The results from the Cunningham Panel™ are provided to the physician as an aid in their diagnosis of PANDAS and PANS. Because these are metabolic tests, laboratory values can change over time and certain immune modulatory treatments may affect the laboratory results. These treatments include intravenous immunoglobulin (IVIG), plasmapheresis or plasma exchange, and steroid treatment. Therefore, we recommend taking specimens prior to these treatments or waiting 6-8 weeks after treatment.
  4. Like
    DsMom reacted to nicklemama in Cunningham Panel results help? Anti Tubulin means....?   
    I don't know specifically what a high anti tubulin means but my sons was high as well. It was the highest of the 4. I was interested to read what was posted from the Cunningham website. I've never read that before. My son was in the research study and had the panel in 2010, just after starting treatment.
     
    You can google anti tubulin. There are several papers on it. It's thought to be linked to movement disorders. My son had chorea like movements rather than severe tics. He was primarily OCD, anger and emotional lability before treatment.
  5. Like
    DsMom got a reaction from mmiglio in Won't drink water   
    Maybe popsicles or smoothies/milkshakes? with juice and/or aloe in it, or that pediasure stuff, not sure how that tastes so maybe it's gross, but I'm just trying to brain storm for you.
     
    And I think you speak for many, many of us re/ addiction to the board. It certainly helped me keep my sanity when the thread was ready to snap, and that's a fact.
    If I think of anything else I'll ping you...
  6. Like
    DsMom got a reaction from mmiglio in I just really need some help/advice   
    You might want to pay attention to the supplements to see if you notice anything different after she takes them, specifically Omega 3's, Vit D and Nac.
     
    They all did a HUGE number on my kid, amped everything up for him, the anger, depression, tics, itching sensation, mood swings, you name it - he took those supps and he exploded in any and all of the above.
     
    Many PANS kids react that way to those suplements, I have to keep food w/ extra O3s in it and Vit D at bay even now.
     
    Steroids also were the worst thing ever for my DS, unbelievable really how bad they were for him, but he manifested PANDAS in the tic/Tourettes fashion, OCD was in form of anxieties like your DD, no rituals, but lots of fear of germs, etc.
     
    Per NIMH kids w/ tic-type PANDAS should be wary of steroid use and I can assure you they were correct based on our experiences (probably 4 different trials that were all disaster). Also SSRI's ; stay w/ the Start Low and Go Slow method, basically on virtually everything in mho.
     
    The advil/Ibuprofen was a help for us, a tiny help, but a help none the less, so I would definatley give that a whirl, 3x a day, lots of water w/ it if you can get it into her. I set my watch by the dosing, if we missed one we really could tell immediately.
     
    Dr. L is great, & Dr. F at Stanford as well, but they only see CA residents at her clinic.
     
    Oh, I wanted to mention that DS's handwriting never really went super wonky, and his math skills seemed to stay fairly intact, although in year 2 he got serious brain fog which could have been the POTS he had by then, and/or the Babs he's being treated for now as well. He didn't have any urination issues at all until the 2nd year either, but then that started and stayed around for another year, so I think some symptoms can come and go...and then come back again sadly.
     
    Hang in there, try the Ibu and hopefully you will see some positive movement.
     
    ET
  7. Like
    DsMom got a reaction from mmiglio in Is it just part of PANS/LYMES that the children refuse to out much?   
    DS 14 was 11 when PANDAS hit. He was in 6th grade, what, 3.5 months in? He missed all of middle school, no home school, no online school, no tutoring. He didnt' have 'flares' per se, he just had 1 non-stop long 'flare' that stopped him in his tracks. There was no way he could do any type of schooling and all his social interaction also ceased completely.
    Video Games saved his life, period. He's just now gone back to school, into 9th grade, started w/ 1 class and is up to 3 now, will add another next semester. He's begun to swim for his old private club and just was asked by the HS coach to join the boys team (3 weeks into season, he's so flattered) so our new normal is amazing.
    Where he's been, I can't hardly believe he's where he is now. He also has been extremely sensitive to all typed of meds, paradoxical reactions all over the place. I wish you the best, it's so hard, hang in and do what you have to do. If it means he plays excessive VG...well, there are worse things. My son is getting an A in Algebra after missing ALL of Middle School math. They didn't warp his brain, I think it saved him actually and there were times when I can say he was completely obsessed, in fact he obsessed about obsessing....but somehow he's made it out the other side.
    Wishing you strength, you can get through this and so can he.
  8. Like
    DsMom got a reaction from MissionMama in Is it just part of PANS/LYMES that the children refuse to out much?   
    DS 14 was 11 when PANDAS hit. He was in 6th grade, what, 3.5 months in? He missed all of middle school, no home school, no online school, no tutoring. He didnt' have 'flares' per se, he just had 1 non-stop long 'flare' that stopped him in his tracks. There was no way he could do any type of schooling and all his social interaction also ceased completely.
    Video Games saved his life, period. He's just now gone back to school, into 9th grade, started w/ 1 class and is up to 3 now, will add another next semester. He's begun to swim for his old private club and just was asked by the HS coach to join the boys team (3 weeks into season, he's so flattered) so our new normal is amazing.
    Where he's been, I can't hardly believe he's where he is now. He also has been extremely sensitive to all typed of meds, paradoxical reactions all over the place. I wish you the best, it's so hard, hang in and do what you have to do. If it means he plays excessive VG...well, there are worse things. My son is getting an A in Algebra after missing ALL of Middle School math. They didn't warp his brain, I think it saved him actually and there were times when I can say he was completely obsessed, in fact he obsessed about obsessing....but somehow he's made it out the other side.
    Wishing you strength, you can get through this and so can he.
  9. Like
    DsMom got a reaction from dasu in Is it just part of PANS/LYMES that the children refuse to out much?   
    DS 14 was 11 when PANDAS hit. He was in 6th grade, what, 3.5 months in? He missed all of middle school, no home school, no online school, no tutoring. He didnt' have 'flares' per se, he just had 1 non-stop long 'flare' that stopped him in his tracks. There was no way he could do any type of schooling and all his social interaction also ceased completely.
    Video Games saved his life, period. He's just now gone back to school, into 9th grade, started w/ 1 class and is up to 3 now, will add another next semester. He's begun to swim for his old private club and just was asked by the HS coach to join the boys team (3 weeks into season, he's so flattered) so our new normal is amazing.
    Where he's been, I can't hardly believe he's where he is now. He also has been extremely sensitive to all typed of meds, paradoxical reactions all over the place. I wish you the best, it's so hard, hang in and do what you have to do. If it means he plays excessive VG...well, there are worse things. My son is getting an A in Algebra after missing ALL of Middle School math. They didn't warp his brain, I think it saved him actually and there were times when I can say he was completely obsessed, in fact he obsessed about obsessing....but somehow he's made it out the other side.
    Wishing you strength, you can get through this and so can he.
  10. Like
    DsMom reacted to MomWithOCDSon in 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!
  11. Like
    DsMom reacted to LNN in Inpatient program at Rogers memorial hospital   
    I don't have any personal experiences. My impression is that Rogers has a good reputation in the OCD community. But my impression is that they view treatment strictly from a therapy+pharmaceutical viewpoint. I don't know that they'd work with you on a bio-medical approach for Pandas. If you have tried psychotropics in the past with positive results, the in-patient therapy may be beneficial. But if you don't want to use psychotropics or have had a bad experience in the past, you may want to ask some questions before admitting your son. I don't know, but I suspect you'd be waiving certain rights over medication protocols and compliance issues. I suspect they face the need to force patients to take medications, so if you go this route, make sure you understand what you will and won't be able to do ahead of time.
     
    If you do feel there's an infection behind your son's condition, there are some blood tests that can give you some sort of support for this, if you haven't done them already.
     
    C3d immune complex shows if the body's immune compliment system has been activated. It can't tell you what sort of infection is there, but a high result will show that the body is fighting something.
     
    C3a and C4a compliments are other immune compliement measurements that are most often elevated as a result of lyme or mold.
     
    CD57 is a measurement of natural killer cells. A low number can suggest a chronic infection may be suppressing the immune system. It is often used in the lyme community as a way to see how robust the immune system is.
     
    There are other tests as well. It depends on what sort of infection or environmental issue may be at play. But the above are available by most commercial labs and are generally covered by insurance. The C3a and C4a sometimes require special handling kits because often they get sent out to a specialty lab as a sub-contractor. So if you go that route, call the lab ahead of time. They may need a day or two to order the kit before you go there for the blood draw.
     
    Only you can weigh the pros and cons. I know you just want to bring your child and family relief. And it's hard to make informed, rational choices when things are so severe. So no one can tell you what the "right" answer is for you. But I would ask as many questions (including worst case scenario questions) as you can ahead of time so you can make the best decision possible.
  12. Like
    DsMom got a reaction from ashley in GFCFSF vegetarian suggestions?   
    Our Costco has the Nutiva brand coconut oil as well as a very nice assortment of GF items (organic, no BPA canned black beans and kidney beans, organic quinoa, coconut and almond milk - rice milk has too much arsenic for us since we eat more than I like of rice products since going GF) which are HUGE staples for us.
    PANDAS DS13 has been a Vegi for 6 years now, and is GF since early in with the illness, so I know how hard it can be to feed these kiddos. Just know it gets easier as you go.
  13. Like
    DsMom reacted to qannie47 in Well this is encouraging....   
    http://abcnews.go.com/Health/anxiety-head-gut/story?id=20229136
     
    Yes, we will all smile and say..."well isn't that interesting".
  14. Like
    DsMom got a reaction from MissionMama in Post plasmapheresis   
    And boy do I agree: PANS/DAS is an incredibly lonely, scary and life changing experience for virtually all of us living it. I am SO thankful for you parents and this forum!
     
    I will chime in with what I've been observing in DS13, as the 'recovery' after PEX is very much a hot topic in our home; DS is 5 weeks POST-PEX today.
     
    DS13 has definately had the 'pages turned back' experience. He had an immediate uptick in almost all his PANDAS symptoms (tics, jerks, insomnia, the non-stop itching sensation skyrocketed, depression worsened (how that could get any lower I don't know, but it did) germ and bugs OCD, started to flush red again at night, etc). None of which I was expecting, and I was freaking out a bit, so I posted from the hospital back in 12/13...warm thanks to the responders, it helped me come 'back' to myself and focus.
     
    Like your DD Jackalibeth, my DS is more than bummed that he's not feeling any significant changes as of yet, and what he's waiting on is a decrease/ cease to the itching.
     
    But I've not given up hope of some positives materializing, since he's got pretty severe stuff going on, and it was his 2 year anniversary of the PANS crash the day he began PEX. Also he's older and majorly in the throws of puberty, which seems to complicate everything.
     
    I do think in the last few days he's ever so subtly gotten 'lighter' in his mood, and is even cracking jokes about some of his OCD behaviors as well as putting irrational ideas he's held on tight to for over a year now into more, I don't know, practical or viable POV's
    (instead of ranting, or being terrified that humans/the world are only a speck of dust on some larger beings fingernail he's now postulated that our universe is just one of many and there most likely is 'life' somewhere else out there. This might not seem like much of a shift but believe me just the rationality of the thought process got my attention. He also PICKED UP a dead bug he found in my office this AM, with a tissue of course, and deposited it in the trash. Then he instructed me to get that trash out to the garbage can ASAP but he didn't hang around and make sure I did it). Baby steps really means baby steps in this case.
     
    My husband (and DS) would poo poo these as victories, but if I'm seeing something different I'm counting it in the plus pile.
     
    I have no idea if he will see any significant gains as we go into the future, but I'm sure hoping we do.
    T_Anna's son has had numerous IVIg since his PEX, and she is seeing small positives thank goodness, slow but still tiny steps in the right direction. We will discuss IVIg w/ Dr.L next week during our flup w/her (first since PEX) and maybe that will be next on our list vs jumping into Rituximab, plus need to get valid AE results back before we go there and most likely PEX really skewed his labs that were taken 10 days ago...
     
    It's this WAITING game that is just so darn hard, so many many thanks to all of you who keep us rallied while we wait. Hang in there, and feel free to PM if you ever need too.
    Erin
  15. Like
    DsMom got a reaction from T_Mom in Post plasmapheresis   
    And boy do I agree: PANS/DAS is an incredibly lonely, scary and life changing experience for virtually all of us living it. I am SO thankful for you parents and this forum!
     
    I will chime in with what I've been observing in DS13, as the 'recovery' after PEX is very much a hot topic in our home; DS is 5 weeks POST-PEX today.
     
    DS13 has definately had the 'pages turned back' experience. He had an immediate uptick in almost all his PANDAS symptoms (tics, jerks, insomnia, the non-stop itching sensation skyrocketed, depression worsened (how that could get any lower I don't know, but it did) germ and bugs OCD, started to flush red again at night, etc). None of which I was expecting, and I was freaking out a bit, so I posted from the hospital back in 12/13...warm thanks to the responders, it helped me come 'back' to myself and focus.
     
    Like your DD Jackalibeth, my DS is more than bummed that he's not feeling any significant changes as of yet, and what he's waiting on is a decrease/ cease to the itching.
     
    But I've not given up hope of some positives materializing, since he's got pretty severe stuff going on, and it was his 2 year anniversary of the PANS crash the day he began PEX. Also he's older and majorly in the throws of puberty, which seems to complicate everything.
     
    I do think in the last few days he's ever so subtly gotten 'lighter' in his mood, and is even cracking jokes about some of his OCD behaviors as well as putting irrational ideas he's held on tight to for over a year now into more, I don't know, practical or viable POV's
    (instead of ranting, or being terrified that humans/the world are only a speck of dust on some larger beings fingernail he's now postulated that our universe is just one of many and there most likely is 'life' somewhere else out there. This might not seem like much of a shift but believe me just the rationality of the thought process got my attention. He also PICKED UP a dead bug he found in my office this AM, with a tissue of course, and deposited it in the trash. Then he instructed me to get that trash out to the garbage can ASAP but he didn't hang around and make sure I did it). Baby steps really means baby steps in this case.
     
    My husband (and DS) would poo poo these as victories, but if I'm seeing something different I'm counting it in the plus pile.
     
    I have no idea if he will see any significant gains as we go into the future, but I'm sure hoping we do.
    T_Anna's son has had numerous IVIg since his PEX, and she is seeing small positives thank goodness, slow but still tiny steps in the right direction. We will discuss IVIg w/ Dr.L next week during our flup w/her (first since PEX) and maybe that will be next on our list vs jumping into Rituximab, plus need to get valid AE results back before we go there and most likely PEX really skewed his labs that were taken 10 days ago...
     
    It's this WAITING game that is just so darn hard, so many many thanks to all of you who keep us rallied while we wait. Hang in there, and feel free to PM if you ever need too.
    Erin
  16. Like
    DsMom got a reaction from T_Anna in Post plasmapheresis   
    And boy do I agree: PANS/DAS is an incredibly lonely, scary and life changing experience for virtually all of us living it. I am SO thankful for you parents and this forum!
     
    I will chime in with what I've been observing in DS13, as the 'recovery' after PEX is very much a hot topic in our home; DS is 5 weeks POST-PEX today.
     
    DS13 has definately had the 'pages turned back' experience. He had an immediate uptick in almost all his PANDAS symptoms (tics, jerks, insomnia, the non-stop itching sensation skyrocketed, depression worsened (how that could get any lower I don't know, but it did) germ and bugs OCD, started to flush red again at night, etc). None of which I was expecting, and I was freaking out a bit, so I posted from the hospital back in 12/13...warm thanks to the responders, it helped me come 'back' to myself and focus.
     
    Like your DD Jackalibeth, my DS is more than bummed that he's not feeling any significant changes as of yet, and what he's waiting on is a decrease/ cease to the itching.
     
    But I've not given up hope of some positives materializing, since he's got pretty severe stuff going on, and it was his 2 year anniversary of the PANS crash the day he began PEX. Also he's older and majorly in the throws of puberty, which seems to complicate everything.
     
    I do think in the last few days he's ever so subtly gotten 'lighter' in his mood, and is even cracking jokes about some of his OCD behaviors as well as putting irrational ideas he's held on tight to for over a year now into more, I don't know, practical or viable POV's
    (instead of ranting, or being terrified that humans/the world are only a speck of dust on some larger beings fingernail he's now postulated that our universe is just one of many and there most likely is 'life' somewhere else out there. This might not seem like much of a shift but believe me just the rationality of the thought process got my attention. He also PICKED UP a dead bug he found in my office this AM, with a tissue of course, and deposited it in the trash. Then he instructed me to get that trash out to the garbage can ASAP but he didn't hang around and make sure I did it). Baby steps really means baby steps in this case.
     
    My husband (and DS) would poo poo these as victories, but if I'm seeing something different I'm counting it in the plus pile.
     
    I have no idea if he will see any significant gains as we go into the future, but I'm sure hoping we do.
    T_Anna's son has had numerous IVIg since his PEX, and she is seeing small positives thank goodness, slow but still tiny steps in the right direction. We will discuss IVIg w/ Dr.L next week during our flup w/her (first since PEX) and maybe that will be next on our list vs jumping into Rituximab, plus need to get valid AE results back before we go there and most likely PEX really skewed his labs that were taken 10 days ago...
     
    It's this WAITING game that is just so darn hard, so many many thanks to all of you who keep us rallied while we wait. Hang in there, and feel free to PM if you ever need too.
    Erin
  17. Like
    DsMom reacted to lfran in Dr. T. Genetic Testing   
    There are several past posts by llm about how to download and use a Zip file that 23andme makes available to you for free of your thousands o snps. There are two websites that I know that will process the data for you. one is geneticgenie.com and the other is mthfr.net. The former is free but asks for a donation. The latter is $20 but is more comprehensive. Then heartfixer.com and any yasko both have resources that can help you interpret the genetic info. Check llm's previous posts for more info.
  18. Like
    DsMom reacted to LNN in What's the story with vitamin D?   
    Vitamin D plays many roles but four important ones are 1. to support the immune system; 2. to support bone strength/growth; 3. to serve as a hormone that encourages sleep and 4. to act as a dopamine precursor.
     
    For those who are high in dopamine, adding vitamin d can trigger or exacerbate tics, as dopamine plays a role in motor movement/control (e.g. Parkinson's is a dopamine dysregulation). Some people have a genetic abnormality in a gene called VDR Taq. From Heartfixer:
     
    Vitamin D stimulates the enzymes that generate dopamine, a good reason to keep your Vitamin D level up, as we need dopamine to defend against microbes and metals, and to keep our mood up. While we utilize SAMe (and indirectly other methyl group donors) to degrade dopamine, we also utilize methyl donors to generate dopamine. Individuals with a normal Vitamin D receptor, those who are VDR Taq (-/-), make plenty of dopamine. They tend not to need or to tolerate methyl groups or dopamine precursor substances (my comment - like a vitamin D supplement). Individuals for VDR Taq defect have lower Vitamin D levels, make less dopamine, and will need and tolerate dopamine precursor substances and methyl donors. http://www.heartfixer.com/AMRI-Nutrigenomics.htm#VDR%20Taq:%20%20Vitamin%20D%20Receptor%20Taq%20Abnormality
     
    So one reason someone may not be able to tolerate a D supplement (always use D-3) is that they may have a VDR Taq abnormality. My son has this and has other genetic abnormalities that make him generally high in dopamine. Yet we live in the north and need to supplement D in the winter months to help him keep his immune system strong. So when we add D3 for the winter, I'll increase the B Complex he uses that's high in niacinamide that sucks up extra methyl groups. Hopefully, this will help him tolerate D3 better. FWIW, niacinamide also helps mellow him out and improves his moods, ability to handle stress and reduces his tendency to get angry when frustrated. This is where his 23andMe/Genetic genie report has helped a lot, since I have a better understanding of which supplements work with his body and which work against him.
  19. Like
    DsMom reacted to LNN in Need assist from seasoned PANS veterans!   
    Trust your mom gut. If clindo is raising your antenna, follow your instincts. Yeast was my first suspicion as well. It could very well be herxing from the yeast. Try adding a charcoal a few hours after a diflucan dose if the schedule allows. Or try molybdenum - My DD and I supplement moly for methylation and we buy it in liquid form from Yasko's company. http://www.holisticheal.com/molybdenum-drops.html That way, I can control dosing much better. It has no taste.
     
    To understand how molybdenum can help with Candida, you need to see how your Candida overgrowth is releasing toxins into your system. The Candida yeast lives on sugars in your gut. When it processes these, one of the byproducts that it releases is a neurotoxin named acetaldehyde. This is just one of the toxins that Candida releases (there are a total of 79!), but it happens to be the most important.

    Acetaldehyde has a whole host of detrimental effects on your health and wellbeing. It can impair your brain function and even kill brain cells. Your endocrine, immune and respiratory systems can all be affected, and it also damages the membranes of your red blood cells, reducing their ability to carry oxygen round the body. Again this directly affects your brain, so you can see how acetaldehyde is linked to Candida symptoms like brain fog and fatigue.
    Acetaldehyde stays in your body – it does not get excreted like other toxins. A build up or accumulation of acetaldehyde can lead to joint pain, a feeling of weakness and aches in muscles, in addition to those harmful effects on your brain.
     
    Molybdenum helps by converting the acetaldehyde into acetic acid. This can then be excreted from the body like any other toxin. Alternatively, the acetic acid can actually be converted into an enzyme named acetyl coenzyme A, which is actually an important part of your metabolism. Acetaldehyde is also released during Candida Die-Off, which is when molybdenum is especially useful. If you think you are undergoing Die-Off and you are experiencing the usual fatigue and flu-like symptoms, Molybdenum may be able to help.
    http://www.thecandidadiet.com/molybdenum.htm

    I was in a situation similar to yours in that DS had a return of symptoms with no apparent infectious trigger and the addition of a third abx did nothing. I tried various things with no improvement. I finally wondered if abx were the problem, not the solution. A candida albicans blood test came back negative but there are other strains. So it wasn't a definitive answer. I had always used garlic as an anti-yeast supplement but apparently you need to rotate your anti-yeast army b/c the yeast can become resistant. After much trial and error, dead ends of various theories and supplements, we discussed two possible culprits with our LLMD. One was yeast/fungal and one was biofilms. Both seemed likely given our long history of treatment and 4 yrs of abx use.

    So LLMD put DS on artimisinin (in capsule form). (DS has been off all abx since April and was only on vitamin/mineral supplements). Two weeks into treatment and the OCD and other symptoms are virtually gone. There is one residual compulsion but it's getting weaker. Tomorrow we double the artimisinin to full dose - did 2 weeks at low dose b/c DS can herx severely sometimes. It seems to be doing the trick. We're waiting on stool test results but clinically, he's responding.

    If diflucan isn't working for you, maybe consider other anti-yeast options. But I think I'd pursue that before adding other abx, given that he was doing well before all this and you don't see any signs of a new infection. Given his history, yeast seems like a logical culprit to pursue as a next step.

    Hang in there and do try the moly. We use 3 drops (75 mcg) daily (maintenance dose) and add a second dose later in the day when die-off seems to be in the picture. Hope this helps.
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