GatsMom
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David A. Geier Mark R. Geier
Toxicological & Environmental Chemistry, Volume 92(5):1025-103? May 2010.
http://www.informaworld.com/smpp/content~d...tent=a921813911
The effects of methylcobalamin (vitamin B12) injection (75 µg kg-1) on
cobalt levels in autism spectrum disorders (ASDs) and potential toxic
effects of cobalt on human neurons were evaluated.
http://mercury-freedrugs.org/docs/100430_P...obaltLevels.pdf
An autism cohort study of cobalt levels following vitamin B12
injections
We've had success using Revitapops (revitapop.com) an MB12 supplement developed by Stan Kurtz. They give ds16 a calm, clean focus. We've tried MB12 nose spray a few times but it didn't produce a result, even at higher doses. I've learned in the last few weeks that folks with type A blood have a difficult time maintaining B12 levels particularly when under stress/illness. Also, clostridia infections in the gut which can come from extended abx use can really screw up the methylation cycle. I wouldn't do long term abx without some form of Methyl B12 supplementation. We've seen no negative backlash from this supplement.
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Could you tell me what symptoms you see in your children when they are having trouble with yeast? Thanks!
Toe walking, hand flapping (both especially in moments of high stress). Rashes around the mouth and nose that come and go within a couple hours. Stomach aches...the very intense, doubled over kind that come on suddenly. Laughing out of normal context including laughing during sleep.
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Ok, I was going to post this last month but felt like I might sound as crazy as this disorder can be. My daughter has been on Biaxin for nearly a month and things have been improving at a pretty steady pace. This morning things were not so good. My daughter has always verbally abused me when in rage form and sometimes the things she says are so hurtful and demeaning that it just ruins my day. I have always been her human target both verbally and physically. Sometimes I think bi-polar would have been easier which is much controlled on meds. Anyway it is what it is and I know the ones who deal with the rage know where I'm coming from. My question is, Does anyone notice a change in symptoms in correlation with a full moon? Sounds crazy but after having so many good days and a blowup this morning and a full moon tonight it just makes me wonder if there is some kind of connection with the gravitational pull. I have taken notice to this several times.
We've had two intense weeks but the past couple days have been more ramped up than ever. I've hear parasites during a full moon.
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DS14 son has been sleeping enormous amounts on and off lately. No, it's not the time change and seems beyond the teenage thing as well. For instance, fell asleep at 7 pm last night and slept till 6:30 this am. Night before same thing - but asleep at 8. Last week missed school saying he felt "bad" - slept until almost 1 pm. Week earlier he missed 3 days of school and spent most of the days home sleeping on and off on the couch. Did the same thing back in August before school started, and in Dec. he was tested for mono, as fatigue was one of his main complaints. We're still waiting on Western Blot testing to be completed after a positive presumptive ELISA, and I know that Lyme is associated with chronic fatigue, so that would make sense. But in the event it comes back negative, I just wondered if this sleeping was a symptom for anyone else??? If so have any of the docs talked about it with you?
How much sleep my ds16 requires is a pretty good barometer of where he is in a PANDAS backslide. 10 wks ago he was sleeping a consistent 12-14 hours per day (all at one time, no naps). Now we are consistently at 10-11 hours. Today was 8. I agree with the fight or flight reference. You can't possibly be in fight or flight most of the day and not be exhausted. Our bodies were not built for that and it's going to take a huge toll. I personally believe that it also accounts for some of his weight loss. His eating wasn't disrupted long enough to account for 20+lbs in 4 wks. I believe he's burning calories in fight or flight, too but I don't know if there is any science to back that up.
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we all have similarities and differences in our struggles with this disease/disorder - whatever we call it. i've felt such help, education, hope and comraderie from this forum. we have been following a different path than most in treatment.
my son's symptoms are almost purely behavioral. we had been using a homeopathic protocol similar in theroy to abx. i've thought i've seen some good results. he had a flu around Thanksgiving and had an exacerbation. in january, i spoke with our dr and said i wasn't sure i felt he was on a good healing path - as i looked over past notes, he seemed okay (not in crisis) but to just be having a collection of good days and bad days. he recommended another dr who does auricular therapy (a type of ear acupuncture and something similar to muscle testing). my son seemed to really be improving since january - a clear reduction on buster's chart from the teens in january to 6s to recently 2-4s. last week, we had a terrible school conference where i learned he is very out-of-sync at school. he seems to have some regressive behaviors and irritabilty this week. (he's been in a change of medication for 2 weeks)
yesterday, we saw the auricular guy - he's a practicing anesthesiologist with a side private practice. as we spoke about ds's behaviors, i brought up the concept of possible lyme. he said given his behaviors, lyme is likely. he did the testing that he does and this is what he came up with. this is a different type of 'testing' but those that believe it, believe it just as other's believe blood tests. if anyone is more interested, i can tell more. of course, the proof is 'in the pudding' so we will see where this leads us but i thought some might be interested in what is seemingly affecting my son.
- as he was first testing my son's energy field (i know - sounds whacked!) - he said "his brain is showing a lot of stress, a lot of stress, so you can't blame him for whatever he does"
- reactive to lyme, non-reactive to any lyme co-infection (lyme mom - i know, i know - you're the town crier falling on deaf ears, i really did not believe him to have lyme b/c he had clear strep, no 'other' lyme symptoms than those consistent with pandas and a completely negative western blot.)
- reactive to cytomegalovirus ( in the herpes family)
- slight reactivity to lead
- reactivity to fungus "a lot, a lot"
- reactive to toxiplasmosis gondii
- low serotonin level
- some trouble gastrointestinal tract
- some trouble liver
- mild, very, very mild reactive to autoimmune
- slight reactive to strep
- slight reactive to radon
- no reaction of EBV
- no reaction to mycoplasma
we live in maryland where lyme is epidemic - this dr believes "half of the people before you have lyme whether they know it or not"
I'm very interested as we have fungal issues to make abx therapy a true challenge. We have a homeopathic consult this afternoon which about which I've heard very good things. We had a negative lyme via labcorp but I'd bet the farm there's something lyme going on in my kid. What's your new doc trying? How old is your son?
Gat's mom
- as he was first testing my son's energy field (i know - sounds whacked!) - he said "his brain is showing a lot of stress, a lot of stress, so you can't blame him for whatever he does"
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Jag10-
That is a beautiful essay, but I just have to say this:
ALL OF OUR KIDS ARE GOING TO ITALY!! We will get them there! We may have a layover in Holland, it may be longer than we like, but we will not stop until our kids are basking in the Mediterranean sun!
(Just had to say it, sorry....)
Beautifully said, dcmom!
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I think that the PTSD burden is one of the bigger ones that we/our kids bear. In some ways, it's just as bad to spend a lifetime worrying as it is to go through an episode. Over time, though, I guess you worry less.
Well before I had kids, I thought about the PTSD aspect from my own point of view. Having had anorexia nervosa that came on out of nowhere literally overnight, drove me down to a 40% weight loss in a matter of a few months, socked me in hospitals for two years with what I was told was mortal physical damage and little chance of getting out alive, and then disappeared again overnight such that I gained the weight back again within a couple of months and returned to health - was bizarre, to say the least. Even shortly afterwards, I could not relate to that anorexic girl whatsoever - I felt like I had been possessed. Although the anorexia itself completely ceased, the PTSD aspect of having basically been kidnapped and held at knifepoint for years stayed with me for a long time, and I really never got support for that. Everyone congratulated me on having gotten better, as if it was something that I had done out of my sheer will. The psychological support I got missed the point all along - it assumed that anorexia nervosa was something that I was doing and that healing weight-wise signified that the psychological issues were past, rather than assuming that it had been something that had happened to me and that the psychological issues/shock were in some ways just beginning.
That "PTSD", while not marked by some of the usual features like flashbacks, etc., had a big influence on my life for a long time. In my late teens and early 20's, I felt that the "extra time" I had gotten by surprisingly getting better was sort of a random lottery winning and that there was no guarantee of any future for me, and so I was VERY reckless with my life - even compared to others that age. If I had no control anyway over whether I lived or died, functioned or didn't function, etc., then why not go for broke and test fate? I'm lucky I lived through THAT. If my kids ever do what I did, I pray that I will never know about it.... Once I settled down a bit in my mid-20's, I always had a low-level paranoia about my future, assuming on some level that a time would come when I would be hit again and wouldn't be able to work, cope, function...so I worked very hard and long hours, scrimped and sacrificed and saved my pennies to ensure that when I got to that point, I was able to get medical care and take time off without becoming basically homeless, if I couldn't work. That put me in a nice career and financial position eventually given that I never did become disabled again (at least not yet!), but it's kind of sad way to spend one's youth -- always preparing for disaster rather than looking to the future in a more balanced, normal, positive way. If it weren't for the experiences I had had as a teenager, I would have had every reason to expect a very bright future that I had some control over.
Nevertheless, that's reality, at least it was for my generation. Hopefully it's not reality for our children. Now I feel pretty much out of the woods myself, but I still feel like I need to prepare, save, etc. for whatever might befall my kids...hoping and praying all along the way that we are on the brink of established better solutions for them than I had, so that they/I don't need to live in fear. It's hard for me to even think about what my life would have been, or could be, like without the burden of worry about the worst case. I think it is very much like cancer in that way.
A friend and I were talking about my son's progress last night and I was sharing with her that there is finally at least a light at the end of the tunnel. We both laughed however, at the fact that it's probably not really the end of the tunnel, just a valley in the mountain range and it's just a matter of time before we hit the next "strep mountain"My friend has unfortuantely dealt with far more than her share of cancer in her life and family, so I thought it was a poingant connection when she equated my son's recovery with "remission".
The road to recovery for a PANDAS child is similar to that of a cancer survivor (although - not as lifethreatening). This "disease" takes over every facet of your child's and faimly's everyday life, and you fight long and hard until they get better. Every parent becomes an expert on their child's condition, reading medical charts and test results better than some dr's and nurses. But, once they come out of the storm, you still live every day in fear that it will return. Every cough, sneeze, hiccup and you immediately start looking for signs and symptoms.
This may not be new to any of you, but personally, I like the word. I think it sums up what we all think and fear even when our kids are "healthy".
A branch of my work is off in the fringe of the oncology world so the word remission is part of my vocational jargin. It has long been the word I use to describe the good times when my son is better. Regarding that PTSD fear that we parents possess, I used to believe for a long time that it was just me. I actually beat myself up for not being so strong in the aftermath that I'd be unaffected when the occasional small symptom would pop up out of nowhere. When he recovers this time, I will take a less passive approach to my own PTSD and look for some therapies to implement to add to my own QOL. It's really a good thing that you posted as these are issues that really need to be addressed and become huge without a strong support net beneath you. PANDAS/PITAND does not, at this point in time, tend to attract a big support net from docs/schools/friends/families etc. All the more reason to search out ways to stay grounded through this storm.
Momto2pandas,
I KNEW you would have something insightful to say on this subject. You definitely bring an element of experience to this that most of us lack. I am so thankful everyday that my ds16 talks about his future in casual ways that show me he doesn't live in the fear of recurrence that I do. Everytime he says something like, "I want to live in NYC someday" or "When I have kids, I'm going to have them involved in sports right from the start." He says them with ease and without dissecting to make sure they are legitimate and able to be achieved by him. What was life like for your parents and I've been wanting to ask you for so long, did they recover and go on to live happy lives?
Thanks for all you contribute!
Gayle
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To You, My Sisters
by Maureen K. Higgins -
Many of you I have never even met face to face, but
I've searched you out every day. I've looked for you
on the Internet, on playgrounds and in grocery stores.
I've become an expert at identifying you. You are well
worn. You are stronger than you ever wanted to be.
Your words ring experience, experience you culled with
your very heart and soul. You are compassionate beyond
the expectations of this world. You are my "sisters."
Yes, you and I, my friend, are sisters in a sorority.
A very elite sorority. We are special. Just like any
other sorority, we were chosen to be members. Some of
us were invited to join immediately, some not for
months or even years. Some of us even tried to refuse
membership, but to no avail.
We were initiated in neurologist's offices and NICUs, in
obstetrician's offices, in emergency rooms,
and during ultrasounds. We were initiated with somber
telephone calls, consultations, evaluations, blood
tests, x-rays, MRI films, and heart surgeries.
All of us have one thing in common. One day things
were fine. We were pregnant, or we had just given
birth, or we were nursing our newborn, or we were
playing with our toddler. Yes, one minute everything
was fine. Then, whether it happened in an instant, as
it often does, or over the course of a few weeks or
months, our entire lives changed. Something wasn't
quite right. Then we found ourselves mothers of
children with special needs.
We are united, we sisters, regardless of the diversity
of our children's special needs. Some of our children
undergo chemotherapy. Some need respirators and
ventilators. Some are unable to talk, some are unable
to walk. Some eat through feeding tubes. Some live in
a different world. We do not discriminate against
those mothers whose children's needs are not as
"special" as our child's. We have mutual respect and
empathy for all the women who walk in our shoes.
We are knowledgeable. We have educated ourselves with
whatever materials we could find. We know "the"
specialists in the field. We know "the" neurologists,
"the" hospitals, "the" wonder drugs, "the" treatments.
We know "the" tests that need to be done, we know
"the" degenerative and progressive diseases and we
hold our breath while our children are tested for
them. Without formal education, we could become board
certified in neurology, endocrinology, and psychology.
We have taken on our insurance companies and school
boards to get what our children need to survive, and
to flourish. We have prevailed upon the State to
include augmentative communication devices in special
education classes and mainstream schools for our
children with cerebral palsy. We have labored to prove
to insurance companies the medical necessity of gait
trainers and other adaptive equipment for our children
with spinal cord defects. We have sued municipalities
to have our children properly classified so they could
receive education and evaluation commensurate with
their diagnosis. We have learned to deal with the rest
of the world, even if that means walking away from it.
We have tolerated scorn in supermarkets during
"tantrums" and gritted our teeth while discipline was
advocated by the person behind us on line. We have
tolerated inane suggestions and home remedies from
well-meaning strangers. We have tolerated mothers of
children without special needs complaining about
chicken pox and ear infections. We have learned that
many of our closest friends can't understand what it's
like to be in our sorority, and don't even want to
try.
We have our own personal copies of Emily Perl
Kingsley's "A Trip To Holland " and Erma Bombeck's "The
Special Mother". We keep them by our bedside and read
and reread them during our toughest hours. We have
coped with holidays. We have found ways to get our
physically handicapped children to the neighbors'
front doors on Halloween, and we have found ways to
help our deaf children form the words, "trick or
treat." We have accepted that our children with
sensory dysfunction will never wear velvet or lace on
Christmas. We have painted a canvas of lights and a
blazing Yule log with our words for our blind
children. We have pureed turkey on Thanksgiving. We
have bought white chocolate bunnies for Easter. And
all the while, we have tried to create a festive
atmosphere for the rest of our family. We've gotten up
every morning since our journey began wondering how
we'd make it through another day, and gone to bed
every evening not sure how we did it.
We've mourned the fact that we never got to relax and
sip red wine in Italy . We've mourned the fact that our
trip to Holland has required much more baggage than we
ever imagined when we first visited the travel agent.
And we've mourned because we left for the airport
without most of the things we needed for the trip.
But we, sisters, we keep the faith always. We never
stop believing. Our love for our special children and
our belief in all that they will achieve in life knows
no bounds. We dream of them scoring touchdowns and
extra points and home runs.
We visualize them running sprints and marathons. We
dream of them planting vegetable seeds, riding horses
and chopping down trees. We hear their angelic voices
singing Christmas carols. We see their palettes
smeared with watercolors, and their fingers flying
over ivory keys in a concert hall. We are amazed at
the grace of their pirouettes. We never, never stop
believing in all they will accomplish as they pass
through this world.
But in the meantime, my sisters, the most important
thing we do, is hold tight to their little hands as
together, we special mothers and our special children,
reach for the stars.
Right on time, Vickie! Please repost it around Mother's Day when we all need to be reminded again. Thanks so much for a moment of clarity!
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A friend and I were talking about my son's progress last night and I was sharing with her that there is finally at least a light at the end of the tunnel. We both laughed however, at the fact that it's probably not really the end of the tunnel, just a valley in the mountain range and it's just a matter of time before we hit the next "strep mountain"
My friend has unfortuantely dealt with far more than her share of cancer in her life and family, so I thought it was a poingant connection when she equated my son's recovery with "remission".
The road to recovery for a PANDAS child is similar to that of a cancer survivor (although - not as lifethreatening). This "disease" takes over every facet of your child's and faimly's everyday life, and you fight long and hard until they get better. Every parent becomes an expert on their child's condition, reading medical charts and test results better than some dr's and nurses. But, once they come out of the storm, you still live every day in fear that it will return. Every cough, sneeze, hiccup and you immediately start looking for signs and symptoms.
This may not be new to any of you, but personally, I like the word. I think it sums up what we all think and fear even when our kids are "healthy".
A branch of my work is off in the fringe of the oncology world so the word remission is part of my vocational jargin. It has long been the word I use to describe the good times when my son is better. Regarding that PTSD fear that we parents possess, I used to believe for a long time that it was just me. I actually beat myself up for not being so strong in the aftermath that I'd be unaffected when the occasional small symptom would pop up out of nowhere. When he recovers this time, I will take a less passive approach to my own PTSD and look for some therapies to implement to add to my own QOL. It's really a good thing that you posted as these are issues that really need to be addressed and become huge without a strong support net beneath you. PANDAS/PITAND does not, at this point in time, tend to attract a big support net from docs/schools/friends/families etc. All the more reason to search out ways to stay grounded through this storm.
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When I was waiting for acceptance letters into graduate school (18 years ago), I drove myself nuts checking the mailbox, internet, and voicemail....checking the phone..was it still working...something must be wrong, I should have heard by now?
Waiting for doctor's appointments that are weeks away can be torture. Waiting for test results or doctor's replies can be torture. Waiting to see how your kid is going to respond to treatment is torture. Waiting for anything important has always been very challenging for me, personally. I'll only speak for myself, but this issue is my mini-version of OCD. This is my child's health, happiness and well-being, I know it is crucially important, but I have to admit; I'm having difficulty getting it out of my head! And I work with school-aged special education children-I'm seeing it all over the place! I'm smart and mature enough to get through work (although that is where I'm typing from right now, shhh) and run my household, ect., but I am clearly preoccupied by this disease and getting my kid the right help. Thank God strep et. al does not throw me into complete dysfunction!
I have put myself on a behavior plan and maybe you can to. A great book (NOT about PANDAS) can be a wonderful distraction. Perhaps others can suggest a real page-turner they have read lately? Limiting your "research" time and, yes, time on the forum will help break the cycle, make you happier and help "wait" time go by more quickly. Pick a project around the house you've been meaning to get done, say organizing photo albums, clothing or your "junk/storage" room. Whenever you notice yourself drifting toward the internet, research; redirect yourself to your "go to" project. Limit the number of times you are going to let yourself talk to your spouse, family or friends about PANDAS per day and stick to it.
I don't want to offend anyone, but I suspect many of us have a little of our own mild OCD tendencies we've utilized on our children's behalf to not take no for an answer and persist on getting them well; but the flip side of this trait we must actively manage and not let life pass us by while we were busy waiting.
We want all the kiddos to get well and healthy. We want peace and some normalcy in our families' lives. Does anyone else have suggestions, strategies, ect. they have utilized to obtain some balance and keep all of this in check?
In recent weeks, I've come to the conclusion that I have to limit my search/research time which is why I check the updates to the board quickly once or twice per day but don't spend all day on it. It is, at best, an oppressive disease. We have been homebound with immovable separation anx for almost 3 months. There are very few moments of mental escape as the evidence of a crashing kid, crashing career and crashing finances are everywhere. Three weeks ago, I resolved to make no move from a place of fear. My days are spent exploring options only when they truly resonate in my gut and head. I busy myself around the house and spend copious amounts of time daily in meditation and prayer. I use inspirational books, cds, websites, etc. I remind myself that he has recovered from this before with far less knowledge than we currently have. In an effort to contain the costs of spring planting (which brings me so much joy), my older daughter and I planted seeds into homemade seed trays last week. (total cost, practically zero) Since it's still cold outside they have been left to sprout in my bedroom by a window. I look at them daily to remind myself that despite my inability to see progress, progress is taking place. Sure enough, yesterday the first green bean, morning glory and black eyed susan plants became visible, proving that point. That said, there are moments (sometimes hours) in almost every day when I cannot imagine how we'll overcome this, when the reality of it is simply smothering. I am but human and when this happens, I do my level best to know the moment will pass and direct myself to a book, cd or website until I can direct my own thoughts in a more healthy way.
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Hi all!
My 9 1/2 year old had plasma pheresis a week ago, she was in the midst of a really horrible episode.
The good news is, thanks to the medical intervention, we are out of a total crisis. She does however still have a lot of healing to do.
The rages and total depression are gone. A lot of the panic ocd is gone. She is left with separation anxiety, lots of general anxiety/ ocd ish thoughts, emotional lability.
The other thing is this regressive behavior.
When she got really bad, and was homebound, I noticed she played a lot more than she has in the past year and a half. She had been kind of growing out of lots of toys- and given most of them to her little sister. At the time, I was happy for the resurgence in play- because it kept her busy. Now though, I have to admit it is really bothering me (its the difference in her- from a really mature 4th grader with maturing interests, to a girl that is excited about stuff she hasn't cared about in 2 years). I know this seems petty, and I do not discourage her, as I only want to see her happy right now. But, she is in fourth grade, and she plays like a first grader. She is so excited over this new Polly Pocket toy she ordered....
Again, I am thanful for any happiness she has- but these dramatic changes are scary...
So, I wondered if others have seen this? And, did it go away as their symptoms abated?
Been there and done that, too. During both the 9 yr old episode and the 11 yr old episode he regressed back to interests and play that he had previously outgrown. It actually seemed to bring him some peace at the time. When the episode ended, he went right back to age appropriate interests. I haven't had that regressed interest in him this episode and I'm not sure what to make of it but it was definitely present in earlier years and he popped right back to "normal" once his body recovered.
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In case anyone is curious ... From IGeneX, negative for all the antibodies--lyme, baronella, rickettsia. On the IGeneX western blot, IgM, western blot was positive for band 41 (1+ out of four possible positives--1+, 2+, 3+, and 4+) and indeterminate (somewhere between positive and negative) for band 39, and negative for all other bands. On IGeneX western blot, IgG, same as IgM, except the band 41 positive was 2+ (instead of 1+). Did not get the CD57 results from LabCorp, the wrong test got ran for that before, got blood draw today to try again on that. There is that controversial band 41 again. In general, the official line would need more than the 41 to be positive for lyme, such as 39 and 41 would do it. Of course, any particular doctor may interpret as they choose. For the indeterminate results, they report recommends re-running test in 4-6 weeks or using different approach to diagnose. So, not too much conclusive in the report. Did get a referral to a local ILADS-recommended doctor in the Infectious Disease field, Dr. C. if I can use that name.
Michael
How about that band 41? How are you feeling these days? Are you still on biaxin?
Gayle
Not sure what the answer to how I'm feeling is. I am seeing some relief from the fluorescent lights and wireless symptoms, nowhere near enough to go back to work, but seeing it headed in the right direction is nice. Those sensitivities have slowly gotten worse over the last 25 years, but with peaks and valleys for overall health and strength. So, maybe the reduced sensitivities is just that I am overall much healthier, with all the treatments, or maybe and hopefully something more, maybe really treating the problem somehow. No idea which it is. I finished the 1 month of biaxin, then took 10 days off antibiotics, and started augmentin last week. The intent of the break was to improve the fungus problem, and really it ended up flaring up for some reason during that time, with now problems with acid reflux during sleeptime, and this fur on my tongue and bad breath to go with it. With the augmentin added to the fungus issue, I am waking up pretty exhausted in the morning. This month of augmentin looks to be quite another grind coming up, so basically just trying to hang in there and appreciate at least I don't have much in the way of responsibility during this time anyway.
Michael
Yeah, we can attest to how brutal the augmentin/biaxin blast can be when there's a background of yeast. I'm sure glad to hear there's a lessening in some of the sensitivities and I would take that as nothing but a sign that things are stabilizing to a degree. Hopefully it's the beginning of a core stabilization for you. It'll be interesting to see what becomes of the band 41 situation.
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In case anyone is curious ... From IGeneX, negative for all the antibodies--lyme, baronella, rickettsia. On the IGeneX western blot, IgM, western blot was positive for band 41 (1+ out of four possible positives--1+, 2+, 3+, and 4+) and indeterminate (somewhere between positive and negative) for band 39, and negative for all other bands. On IGeneX western blot, IgG, same as IgM, except the band 41 positive was 2+ (instead of 1+). Did not get the CD57 results from LabCorp, the wrong test got ran for that before, got blood draw today to try again on that. There is that controversial band 41 again. In general, the official line would need more than the 41 to be positive for lyme, such as 39 and 41 would do it. Of course, any particular doctor may interpret as they choose. For the indeterminate results, they report recommends re-running test in 4-6 weeks or using different approach to diagnose. So, not too much conclusive in the report. Did get a referral to a local ILADS-recommended doctor in the Infectious Disease field, Dr. C. if I can use that name.
Michael
How about that band 41? How are you feeling these days? Are you still on biaxin?
Gayle
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Tired mom - were you only IgG pos for the MP or also IgM? We're on day 7 with mixed results so far. You gave me encouragement to think you're seeing "normal" on day 14... 2002 was our bad onset strep year too. Wonder how many others started then? Seems like I hear quite a few say they've been dealing with this for 7 years. Makes you wonder about the "certain strain" theory....
Throw us into the mix. My ds16's first experience with PANDAS was in fall of 2002, he was 8. It happened again in fall of 2006 when he was 11. This one started this fall at age 15. Looking at his symptoms in each exacerbation and the labs that Dr. T. drew, it would certainly be reasonable to suspect mycoplasma was an issue, if not the key contributor, in each backslide. He was positive this time for IgG and IgM.
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Host cell lactoferrin acquisition by M. pneumoniae is
yet another possible means by which local injury may occur,
through generation of highly reactive hydroxy radicals resulting
from the introduction of iron complexes in a microenvironment
rendered locally acidic by cellular metabolism that
also includes hydrogen peroxide and superoxide anion (419).
Good Lord! Our local ped had our son start iron therapy in mid-Dec due to low ferritin. Things really hit the fan a few weeks after this started and I reduced the iron after about a month - learning that it interfered with the absorption of Omnicef. The daily rages slowed down shortly after which I attributed to the absorption of the abx. Now I wonder...He is now OFF the iron supp (his levels weren't that low to start - no anemia, and our ped never wanted to bother to find out WHY his levels were low...)
Very important observation!
Many kids with PITANDS have unexplained low ferritin levels!
Low ferritin levels usually serve as a red flag to doctors for iron deficiency. In that case --- iron deficiency >> low ferritin levels.
But, these kids are not iron deficient! - there are many markers of iron deficiency - low MCV, low hematocrit, high total iron binding capacity ... these kids are not iron deficient
I have another idea -- what if the low ferritin is not a consequence of iron deficiency, but the primary problem? In that case
low ferritin >> relative iron overload --- i.e. iron toxicity
Where does iron toxicity manifest in the brain ---- surprise, surprise - the basal ganglia
So giving iron here may be the wrong thing to do - patients may get worse!
Another clue
Low ferritin levels, whatever the cause, are invariably related to RESTLESS LEGS SYNDROME. The incidence of RLS, the most common movement disorder in adults (and maybe children too) is much higher in children with tics/Tourette's
Read about restless legs syndrome here
http://en.wikipedia.org/wiki/Restless_legs_syndrome
Does this fit at all with your child ....
Wow! This is every bit the puzzle that autism represents. Dr. T, I hope you know everyday how appreciated you are by parents like me!
Gat's mom
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I hate it too.. most years. This year, melatonin saved us. It's like I've drugged my kids. They can't keep their eyes open.. I almost feel bad about doing it 'cos it works so well, like I've slipped them a mickey finn
The years I fought my dd to sleep, taking well over an hour each night until she was 3 or so. If I'd have known then about melatonin, I'm sure I'd have less grey hair, be less stressed and less fat
I'm buying shares....
I agree! In our case, the melatonin got him to sleep . . . it just didn't keep him there.
We should buy stock, too! Ever since putting DS on it and seeing what a change it made in getting him knocked out quicker every night, DH and I have been taking it, too. IMHO, works better than Benedryl!
Boy, I thought it was just us. When will I learn that it is rarely "just us" experiencing anything. A good hour of flipping and turning in his bed despite melatonin and ocd behaviors (checking dates and other contamination fears) highly increased today. There is a baseline of anxiety present in him that simply has not been so pronounced for a couple weeks. I spread his omegabrite caps out throughout the day and he's just about to have his second one...number 3's coming up asap!
Btw, we've been using melatonin for years with success but wow, do the lozenges act quicker than the pills. We use KAL brand, 5mg lozenge. This is actually a mg less than the pills we were taking and work quicker!
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Danny takes buspar and has for a while .Not a high dosage (I think it needs to increase) He cant really take meds he doesnt do well at all on them Buspar seems very weak .
Any one use something that helps?
IV went well on friday he is crawling out of his skin for the past 2 days and Im oing to have a breakdown before him.
This happens and then he calms down
Cant be soon enough for me
Melanie
Much as I hate the thought of my child being on a benzodiazipine, we would have never survived this long without Clonazepam .5mg. Benzo's are fast acting anti-anxiety medications, not SSRI's. The effects are felt within a half hour or less. My son is only given it when he's really anxious over something. He started taking this during his last exacerbation 3 years ago and I took a lot of heat about it stating that I was giving him something that could be addictive. I'm here to tell you that when his symptoms remit and the anxiety abates, Clonazepam is the last thing he wants. We would be lost without the option of this medication and I thank God daily for the science that created it and the help it brings him in a crisis. Try everything, but don't let anyone beat you up about using this class of medication if needed.
Best wishes,
Gat's mom
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We see the same nutritionist that SF Mom sees and our son is taking 400 billion units (only because I cannot get him to take anymore). A friend recommended this nutritionist to us because this friend had a severe, debilitating auto-immune illness that was never given a name. She had a fever for 10 years and was flown all over the United States for help, to no avail. She lost her job and was housebound for all of these years.
Anyway, after starting on the high dose probiotics, she slowly got better and two years later, she is now a thriving artist and very healthy and happy.
I know this amount of probiotics does seem extreme, but I have been doing it for over a year and I have never been healthier. I just wish I started my kids on this regime sooner. Donna Pessin, this nutritionist, believes that the current probiotic recommendations would take 300 years to really heal the gut.
Anyway, just another interesting health topic to think about.........
Elizabeth
Elizabeth and Wendy,
Are there specific probiotics that Donna really likes? Do you spread this massive dose out throughout the day? With or without food? The Mercola probiotics I just received (but don't start until Sunday) say to take with food. The Klaire's product we currently use doesn't say but our DAN! long ago told me they were best on an empty stomach.
Thanks a bunch!
Gayle
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Faith you will laugh at me.
We are on a mission to repair gut flora under the guidance of a nutritionist that has dealt with a lot of auto-immune illnesses. Our son is taking 800 billion units per day (good bacteria), Bentonite Clay (eliminates toxins and firms up stool), high dose B12 (nerve damage), fish oil (anti-inflammatory, anti-viral)..... no other supplements.
Our entire family is following similar regimen, I am taking 1.6 billion units per day. I've got to say, I feel great. The most improved aspect for me.... is my ability to get a good nights sleep. For the last 7 to 10 years, I have woken up nightly at approximately 4:00 a.m. for an hour or two and typically need to start my day at 6:30 a.m. So, I never really got a good nights sleep. Now, I sleep like a baby and never wake up unless one of my kids do or I've had a glass of wine the previous night
Our son used to complain of stomachs daily and since starting we've had maybe one complaint.
-Wendy
Hi ,I am sure this has been answered but what is a good amount of probiotic to give with children on antibiotics??
Deanna
Hi Faith,
The Klaire's Therabiotic Detox Support is 50bil per cap and we currently take 2 caps. This is was what our DAN! suggested 4 yrs ago.
Wendy: I'm really interested in this. Mine is so sensitive that if we miss his probiotics we see a backlash within a day. We do methylcobalamin B12 lollipops...Revitapops..have you heard of these gems! Methyl B12 is easier absorbed than cyancobalamin B12 which is the standard found in stores. I will say this about my son, the healthier his gut, the better his ability to adapt to change. Thanks for posting!
Gayle
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Hi ,
I am sure this has been answered but what is a good amount of probiotic to give with children on antibiotics??
Deanna
Maybe it depends on the age/weight of your child. My ds16 takes about 100 bill per day of Klaire's Therabiotic Detox Support. We're about to rotate to a Mercola probiotic that will bump him to about 120 bill per day. After that, we'll be back to Klaire's again. I think it might be one of those cases where you get what you pay for, too. Our DAN! really pushed the Klaire's product. If we miss even a couple days, his old yeast symptoms return.
Gayle
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Hello everyone,
My name is Heather and I was fortunate to find this forum today after a couple of months of researching what could possibly be affecting one of our children. We have wonderful, bright, and beautiful children (I am just little biased
). However, all of that changes once our child gets strep. He becomes highly emotional, gets angry, sad, and a plethora of emotions, suffers low self-esteem from "bad thoughts", he starts doing ritualistic behaviors that he can't seem to shake, and complains of terrible joint pain in his legs & arms.We have dealt with this for the last couple of years, but it wasn't until early this year when he had back-to-back strep that we realized that this occurred every time he gets strep. I consulted with several people, but got no where for the most part. I mentioned this to our pediatrician who seemed to think our son had some form of a psychiatric disorder. What she thought he had I researched until I was blue in the face and nothing fit. I keep researching and found something about PANDAS, but it wasn't until the last week when I uncovered more about it and read some case histories that sounded so very similar to what we experience.
I feel like my family and I have just stepped into the light and it is such a relief to know that we are not alone in the journey. Of course I am not 100% sure he has PANDAS, but the more I read the more everything seems to fall into place.
I look forward to getting to know each of you more, and figuring out our next steps, and hopefully finding a doctor who will listen to us and help us find what is right for our family.
Heather
You have stumbled onto a great resource with this group. The compassion and education that is often lacking in the general population is abundant here. It will serve you and your family well. Get a really good doc asap and don't waste much time with those who have to be convinced of the validity of this condition. You can worry about going back and educating the nonbelievers once your child is well.
Best wishes,
Gat's mom
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Thanks, I just read your other post. When I checked earlier I did not see it.
I will stop the benadryl immediatly. To be honest, the least of my worries right now is another tic. (can't believe I say that)
Jack's twin brothers first pandas symptom was that he saw a big black ball in his eye. Both boys have eye disturbances and say their eyes hurt sometimes. but the involuntary side to side movement is new.
Was just telling Dr. T in an e-mail that I used to be a much calmer mother but ever since PANDAS hit, I seem to panic over just about anything. Very uncomfortable way to live!
Thank you for the advise.
Best, Kari
Hi Kari,
My ds16 has had the symptom of eye pain with all 3 of his exacerbations since age 8. No one has ever put their finger on why he has it but after Dr. T tested him for mycoplasma (which he was positive both IgM & IgG) I did more digging into its symptoms and found eye pain to be among them. My son's eye pain always remits with advil. He also has an eye rolling (one side to the other) tic. During his middle school exacerbation (before we ever knew to look for mycoplasma) both the eye tic and the eye pain were far more prevalent. Just something for you to keep in mind.
Best wishes,
Gayle
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Hi there, I was reading up on this and am very interested. I was wondering, do you need a prescription for it and how much does it cost?
Oh DUH... How many times do I have to look at the website before I see the "buy now" link? Apparently abouyt 5
Susan
LOL! Listen, nobody can be as brain fried as I am. I say all the time with 23 years of parenting under my belt, I am far too old for this! I opted for Enhansa because of Lee Silsby's reputation in the very fragile autism crowd. I like the fact that they put effort into making it more bioavailable. It came with a dosing schedule and I've even ratcheted that back to start. This is only day 2. No negative backlash so far. This is another tool in our personal war on inflammatory cytokines which I believe are causing much of the day to day nightmare that we are living.
Keep in touch on this, Susan. I'd love to hear how you are doing with it.
Gayle
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mom-2-2's post perhaps about a month ago, discussing some things she's learned along the way, included suggestion of more EPA per day than DHA (7 to 1 ratio I think). That got me going and relooking, as I had been supplementing with vegetarian sources including DHA from algae, but only extremely small amounts of EPA (4mg per day). I'm restricted more by desire to stay away from fish products, rather than allergy, but it occurs to me to post what I'm taking, just in case anyone dealing with fish allergies is unaware of some of these options out there.
The flax oil is high in omega 3's and is good at balancing out the high omega 6 diets most of us have, and the omega 3's can be converted into DHA and EPA. The issue is that only small percentages are converted.
There are algae based DHA supplements out there. I tested bad for it, so never took it, but Dr. Fuhrman has a website where his brand of it is sold. The product made by NuTru, called O-Mega-Zen, comes in pills or liquid, is another pure DHA product, it is the one I am using. Spectrum Naturals sells probably a dozen varieties of flax oils in the health food stores, and one has added DHA in it, and that has been a mainstay for me for a while. The 130mg of DHA per Tablespoon is still low, and the 4mg of EPA almost nonexistent, thus the reason for getting a pure DHA product. Some stores don't carry it without special order as it doesn't last as long and is less popular, but it does end up on sale sometimes as a result. It is probably cheaper to go with straight flax oil plus straight DHA product rather than flax with DHA oil plus additional DHA product, and I'll probably transition to that eventually, but I have a bit already purchased to use up.
All these things above will likely lead to much more DHA than EPA, and mom-2-2 was suggesting going the other way. I was unable to find a straight non-fish EPA supplement, or even a combination EPA + DHA product that would result in anything more than the same ratio I am already getting. Both DHA and EPA can be derived from algae, so I do believe it's only a matter of time, but right now, the EPA from algae is just too expensive for companies to try to sell. The next best thing is oils with SDA (a kind of omega 3) and GLA (a kind of omega 6), which, particularly when together, can convert better to EPA than the more typical ALA omega 3. Hemp oil is high in SDA and GLA, so I have added that. Unlike flax oil, hemp oil has a good ratio of omega 3 to omega 6, meaning, when combined with most people's diets of too much omega 6, will result in a total ratio that is too much omega 6 (unless also supplement with flax oil). By the way, I use the nutiva brand of hemp oil, along with nutiva brand of hemp protein powder, and am not comfortable posting my reason for avoiding manitoba farms brand, but, if anyone is using or considering using manitoba farms brand, you might PM me and I could discuss there.
Another product I just found is Echiomega, made by igennus, a company in the UK. The capsule has various ingredients, it is a soft squishy style capsule, and includes carrageneenan (mentioned because some with TS have difficulties with it). The contents of the capsule just has pure oil from echium seeds, a seed that is just extremely high in SDA's and GLA's, way more than hemp oil even. I just bite the capsule in my mouth and swallow the contents and spit out the shell, as it is extremely difficult to chew, and I can't swallow pills.
My body is now testing for two of the Echiomega capsules, plus 1 tablespoon of the hemp oil, plus 1 teaspoon of the flax with DHA oil (includes about 40mg DHA), plus some drops of the pure DHA to add another 100mg of DHA. It's a bit of a production, but I am reading emphasis on these essential fatty acids and so have put a bit of effort into it, as needed due to avoidance of fish kind of limiting choices a lot. My body testing says it prefers this blend much better than what I was doing before, so thanks to mom-2-2 for the encouragement to seek out a better EPA-DHA ratio. This approach of using GLA's and SDA's means you really don't know how much EPA you're getting, since you get what you convert, so, not nearly as scientific as using the fish oils, I'm sure. Just started a few days ago, nothing really to report in terms of making a difference healthwise.
Michael
Agreed, she really got me rethinking my omega combination for my son!
Sending PANDAS child back to school...
in PANS / PANDAS (Lyme included)
Posted
Hi Karen,
Like the others, I know exactly how you feel. My cousin holds her PhD in psychology and she's well aware of what goes on in my world. She says that without fail I would qualify for a diagnosis of PTSD. Tomorrow is our first day of school. He wants desperately to go but I know this is just not going to fly. We've had to discontinue all abx months ago because of the train wreck that his gut was. We're trying something new but only 17 days into it and seeing good results but not enough yet to take on the ultimate challenge...school. Anyway, know that you're not alone and I maintain that, given what this group of parents has lived through, your reactions are completely reasonable. I know from our middle school experience that ONLY time brought me to a point of not jumping at the slightest symptom. It took a few years and oddly, this backslide began a few months after I finally let my guard down. I do know, however, that he was going to have this episode whether I stressed about it and kept his life under the microscope or not. You cannot imagine how much I look back on the 6 months before he got sick and am so thankful for the life I had then and the enjoyment I was getting from it at that time. I'm sorry for what you're going through, I live there myself these days.
Gayle