GatsMom
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My dd brought home the 'lice letter' today.. you know the one that tells you that someone in the class has lice and what the signs are and what to do.... well lets just say that it is not exactly the best thing for a PANDAS child like my daughter to see... I had her to the dr yesterday (rapid neg - waiting on culture results -Fri) but dad has strep... and she has sore throat... she has been ramping up since Sunday (tantrums/rages yesterday and today) high OCD questions/rituals. urinary frequency...
so the letter is making her nuts.... she is convinced that she has lice and that she can feel them sucking the blood out of her brain! She as woke 2xs already tonight to ask me to check her head! and she wants to miss her field trip (it is to a soup kitchen to help prepare the place settings) to go to the doctor and then in the next breath she want to go on the field trip but everyone will know that she has lice because they will be able to tell that the lice have been sucking the blood from her brain!
NOTE TO SELF - tell the school to send all 'ILLNESS / PARASITE / GERM RELATED" materials home in a sealed envelope addressed to me!
the dr did give her another course of antibiotic.... 10days.... and I gave ibuprofen before bed so I am hoping she stays asleep (even though she is in our bed) and God help us if she does get it! I can only imagine the reaction!
Lice letters, CNN, FoxNews (and any other scrolling 24 hour media blitz), yard signs in front of grocery stores and pharmacies touting H1N1 vaccines to keep us all from dying of the flu, SSRI ads on tv that list boldly the potential side effects....and on it goes. Fear tactics utilized by advertisers and mass media designed to get us to buy or conform. Most people can put all of that into proper perspective but proper perspective is currently lost on my ds16, adding the difficulty of his life currently.
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Hi all,
Haven't posted in a while... Baby was born two weeks ago, baby girl, everything went great, thanks all for the good wishes.
So now we are back to reality, and I'm feeling so disappointed ds12 is sliding back again
This is the fourth month in a row he has a set back roughly at the beginning of the month. Nov and Dec were clearly linked to strep, January was impetigo (staph or strep?), but right now no one seems to be sick. His sister's tummy aches turned out to be constipation (or so the doctor thinks), and it turns out even though I had almost sold the strep connection to him, the bloodwork got sent to the wrong lab so we never did get those titers, grrrrr!Matias is going through scrupulosity attacks, worrying about having touched this or that, his eyes look swollen, his knee is hurting again, and his wrist looks swollen.
So, has anyone else experienced this monthly cycle thing? Am I going crazy? Or shall I say "lunatic"
I was just thinking, what in nature follows a monthly cycle... the moon
I just don't know what else to do. The pediatrician doesn't totally agree with the strep connection. He said he would not run a stool test on my daughter unless she had diahrrea. They have swabbed her but she has been negative in Jan and so now unless she shows symptoms I'm not going to get anywhere trying to prove we have a carrier.
And then again, he could be getting exposed somewhere else, who knows. I just feel this is such a losing battle, you can't even see the enemy!
I called today to make an appointment with the infectious disease specialist but got the answering machine all day. I shall insist tomorrow and see if they are any help.
I might have to go back to our initial doctor... even though she seemed to be going in a million different directions, she did test for everything that might be affecting him.
Well, that's it. I am sorry to be so negative tonight, I wish there was some definite test for carriers...
Isabel
Over in the autism world there are so many families who see consistent and predictable flares monthly. I never followed those threads far because its not a problem we have but I do know they believe it to be parasites of some kind and treat accordingly. I have a friend locally with a dd10 with PANDAS (not autistic) who also has the monthly fevers. Her care is shifting from a DAN! (the one we used) to Vanderbilt's Neurology Department in the next few weeks, so it will be interesting to see if that organization has something new to add.
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Well, things did calm down a bit after lunch, and are starting to act up again. Antifungals with every meal, so hopefully dinner with antifungals will help. I've started with probiotics every couple hours and hopefully that will help too.
Vicki--I did NAET on mycoplasma a few days before starting antibiotics, and the result of that was a little coughing did eventually start, a couple days after treatment. I'm assuming that got the body starting the fight a little before the antibiotics kicked in. (Faith--turns out the NAET did clear.) Yes a little bit surprising that the yeast would get that out of control after 2 doses. It had been a serious yeast infection, but I had made quite a bit of progress with it--not sure how much was left, or how quick the yeast can explode, my first experience like this. Guessing it's not mind over matter, but who knows, really came on pretty suddenly after a relatively uneventful doctor's appointment, my mind was certainly elsewhere at the time it happened.
Gat's Mom--Haven't heard of activated charcoal in a while. You're talking about the capsules people swallow? I am taking in the morning psyllium husk powder for yeast mop-up. Charcoal is good for yeast mopup or bacteria mopup? I was mycoplasma positive, but not strep positive, on the bloodwork. NAET testing showed sensitivity/allergy to mycoplasma and strep, but stronger reaction to mycoplasma, for whatever that's worth. That is not necessarily indicative of current infection, but could indicate had a serious problem with the infection at one point.
Michael
Yes, Michael activated charcoal in capsule form for mop off of all sorts of toxic die off. Citrus pectin is another one. You've really got to be careful about taking it far away from meds/supps because it will mop up the good stuff as well as the bad. I know I sound like a parrot about that but its always been stressed that same way to me. However, I know it can offer significant relief from some of the die off symptoms that come from using antifungals when you've got a big overgrowth going on. I don't know if die off is a problem from killing off bacteria like strep with high dose abx though I would think the same logic would be true. Am curious if anyone else has dealt with die off symptoms when killing strep...or is that the sawtooth recovery that I've read here before?
Sure hope you're feeling better each day.
Gat's mom.
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HI,
Thank you so much for your response, we use to live in Tuscaloosa but moved down here just for the programs for autism. Birmingham isn't to far maybe 6 hours or so but was looking at maybe trying to see the dr. in Florida that would prescribe the abx that we are wanting to try. good luck with dr. Adams, we may have to see him eventually. does anyone use probiotics and if so what kind?
Thank you,
Lotafaith
Hi,Have a son with autism and lots of symptoms of PANDAS. Our regular Ped told us a few years ago that a blood test that we had done for something else indicated to him PANDAS or gave him some hint of it, I can't remember at this moment but he said that his numbers were somewhere around 600 or so, I am heavily researching this now because of stomach issues and severe noise sensitivity like a roller coaster ride sometimes (noise sensitivity all the time) was wondering if there is a web site that I could get some really good info for our Ped to read and which Dr. is close to us that we might could see? I did not find any on the list that were in Alabama or Mississippi, we are closer to Florida and saw a couple that some of you have used, Dr. Smith and Dr. Murphy. I have found two Dr. Murphy's in Florida I am not sure which one is the one for PANDAS. Thank you for any info and help
Lotafaith
Lotafaith,
We saw David Adams, MD in Birmingham for the past several years. I can tell you he has some experience with PANDAS. He's also a DAN! doc which certainly is a great thing if your son is autistic. Dr. Adams is no stranger to working with gut and sensory issues. I, however, was unsuccessful in gaining a trial of abx that so many people have had success with on this board. I did find Dr. Adams to be very intelligent and highly dedicated to his ASD population. I know my son was not his only PANDAS patient. I suspect he'll be at the AutismOne Conference in May and he'll gain even more knowledge on PANDAS. By that time I hope to be able to communicate my son's success with antibiotics back to him for the benefit of others in his practice. Best wishes to you and your family.
Gat's mom
Dr. Adams started my son on Therabiotic Detox Support by Klaire Labs. I buy it from The Wellness Pharmacy in Birmingham and they ship it to me cold.
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Lynn,
Boy, sounds very similar. I will bet you will see elevated Cam Kinase, and strep titers. You are right. It becomes very difficult at the ages my kids are to get them on board for treatment. Most of the time they are tired of false promises and dead ends you have tried before. When they are so far under emotionally, it is hard for them to imagine feeling better. That's why I have felt that we are at the very end for both of my kids to try and get treatment. I am willing to use college funds if needed to get any treatment that may work (because they will both be unable to use them anyway unless things change).
One of the most difficult things with these older kids, is to piece together when the earliest symptoms really began. With my daughter her big flare began when she was 15 but she had milder symptoms of OCD starting back at least several years before and flared to severe following a series of strep infections. According to Dr. K., pediatric onset and adolescent onset are actually different processes. Pediatric onset is autoimmune. Usually get flares with any infection. Adolescent onset may be strep in the gut causing inflammation resulting in elevation of a hormone called cholecystokinen (sp) which results in anxiety and all that goes with it. Treatment may be easier in this population. We will see. For now, we are seeing improvement with both, but have a way to go before fully independent and functional.
My thoughts are with you. It is bad enough to have one child struggling and to navigate the path to healing, but then the overwhelming burden and guilt when you realize that while you have been focusing on one, another child in the family who has been suffering for years with vague but devistating symptoms has a varient of the same thing and now to navigate a healing path when all else have failed is hard.
Keep me posted on your progress with your kids. If it is easier, PM me.
Ellie
I have the same problem keeping my ds16 optimistic or even remotely hopeful that therapies are going to work. His previous exacerbations have been 1-1.5 yrs each with a year or more between them. Half of the last 7 years of his life have been with debilitating anxiety that colors every aspect of his life. How in the world do you keep them trying and hopeful in the face of those statistics?
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I am a 22 year old and I have had PANDAS for 10 years now. I was diagnosed at 12 but no one knew how to treat this or what to do. No one would listen to me or my mom for years, and ignored my extremely high ASO titers (1450 in 2006). My ASO titers have always been high. Recently they have been what I call "low" at around 670. I finally am seeing a specialist who I noticed posts on this page, Rosario Trifiletti. I just started 150mgs of clydamicin twice a day for 15-30 days depending. I am hoping this will eliminate my symptoms, anxiety disorder, OCD, separation anxiety, depression, and excessive sleepiness. I also have a 2 year old daughter who I sometimes have difficulties taking care of because of my anxiety. All I want is to be better and for no one to have to suffer this long, like I did. I would just like to hear stories of others who have overcome this disorder, or people in treatment, and if there is anyone out there not in the "pediatric" age that has PANDAS. thanks for listening.
Jane
Welcome Jane,
You have reached the right forum and you have clearly found one of the best doctors around for treating this. You are farther ahead of the game then you may realize. You'll find amazing support, optimism, hope and utter genius within this forum. Best of all, the forum will continue to reiterate that you are not alone in any of this. Vickie makes great suggestions (she always does!) regarding supplements. I'll add my 2 cents also by encouraging you to take a minute for appreciation for this forum, for that doctor, the fact that you found both and for how much help there is available now compared to a decade ago. You're among friends.
Gayle
Gat's mom
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I wanted to give an update on my ds20, where we've been and where we are now. Since it has been several months since I posted wondering if the struggles we've had over the past 4 years with my son could be Pandas varient, I will do a brief (ha, if there is such a thing) update on history.
Sister 17yo definite Pandas probable onset late elementary school/ early middle school with severe OCD and some choreaform movements. Effective Pandas treatment began this August and is responding to T&A, steroids twice, full strength antibiotics and hoping for IVIG sometime before summer to get her back to 100%. Now pre IVIG at 70% tapering off second round of steroids.
DS20 sudden onset symptoms at 16yo end sophmore year high school. Had been good athlete, great student, self starter, motivated young person. Had hopes and aspirations of further education. Taking honors classes pulling mostly A's. Sudden onset depression/ anxiety, fatigue, mental fogginess, difficulty processing, rage and anger. No life trauma's to consider for triggers. Grades started falling off, athletics stopped. Weight loss, stomach pain. Sister at the same time ramping up with OCD, recurrent strep infections. Approached it with mental health arm of healthcare system (had never even heard of Pandas at this point and for the next 3 years). Psychiatrist diagnosed anxiety and depression. Began meds. No big help. Still felt anxiety, mental processing difficulty, depression and stomach issues. Stopped meds after about a year, and tried to muscle his way through his senior year. Was able to apply for colleges and was accepted on acedemic scholorship to a good 4 year college. Around graduation in June, sister got another strep infection and exploded with her own symptoms over the summer. DS20 left for college in August off meds and with some anxiety and worry he would be unable to handle the work. By October in full crisis at school 6 hours away. Unable to get to classes, further weight loss (120 lbs as a male 5' 6") due to anorexia from stomach pain, tremendous fatigue, severe depression, panic attacks, total mental fogginess and inability to write a paper or understand the coursework and dilated pupils. Started counselling and meds in hopes to keep him in school to complete the first semester (Pandas still unknown to us). Pulled him out and home about 2/3rds through the semester on medical leave. Restarted mental health care with a different Psychiatrist and psychologist with regular visits and living at home. Took meds until weaned himself again this summer as he felt they were not really helping. Tried an introduction to Botony class at a local college in September and completely was unable to process his thinking to allow for learning despite tutoring trial. It reminded me of what his sister's mental processing was like during her worst with Pandas. With a shot in the dark, I started piecing the puzzle together and wondered if he also was struggling from a form of encephalitis and decided to get his Cunningham test done and strep titers. Strep titers all elevated and elevated Cam Kinase at 158. Anti neuronal antibody titers all high end normal but normal. Begged a local doc to start him on Zith for 60 days while I did more research. Found Dr. K.'s information on adolescent onset and it fit pretty well.
Two weeks ago had a phone consult with Dr. K. for both kids but mostly ds20. He agreed with my thoughts and changed his meds to Augmentin 875 twice daily and 5 day steriod burst (Augmentin for only 4 weeks then stop).
What we have seen for response has been nothing short of amazing. After 4 years of going nowhere with mental health approach, within 14 days of Augmentin and 5 days of steroids, we have eye clarity and sparkle, increased energy and drive, motivation, decreased rage, significantly improved communication, laughter and a skip in his step. We are seeing his personality return and are almost giddy. Still present is the almost ADD difficulty in prioritizing and sequencing actions during a several step project and anxiety. The fact that we are seeing any movement in the right direction with this treatment makes me hopeful for him getting his life back (he so much wants to go to college and learn, and be able to live on his own like any other 20yo).
A side benefit has been that his sister seems to be responding better to this second dose of steroids since her brother in on antibiotics.
I hope that this may help someone else out there think about the Pandas varient. I know most of you have young children, but look at what we have been through when it was not diagnosed early. It does not go away on its own, and significantly interferes with normal learning and life as a young adult. Thank God for Dr. K. and describing and helping us with unlocking what seems to be the key to our son's lost 4 years. I will keep you updated.
Ellie
Such wonderful news! Great medicine for those of us with older kids. I often wonder if mine can fully recover after so many years of assault that went untreated. I really needed to read this today. Thank you so much for posting!
Gat's mom
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Started clarithromycin (generic of brand name biaxin) last night, for PANDAS that Dr. K. believes is caused by mycoplasma pneumonia. One 500mg pill last night before bed, another pill this morning--2 pills per day is the idea. Results were edgy during sleep-time last night and slight headache, more headache this morning, not so bad headache in late morning, but very severe hunger issues (as if blood sugar is now uncontrolled). Wondering if that can be yeast growing wildly, as I have had bad yeast issues and am still on 3 antifungals, it's my best guess, but wondering if that type of thing can happen with just the antibiotics fighting the bacteria. Also, maybe a bit more coughing and sneezing, as if the body is fighting something. Feeling pretty weak right now...
Michael
Maybe it is a big yeast overgrowth if you were battling yeast prior to abx. Possibly a healing regression (herx)? Since you are going to continue forward, I'd sure be pushing fluids, adding epsom salts baths and think about the possibility of a little activated charcoal to mop up the die off. Just be SO careful about keeping that charcoal hours (at least 2 and I'd aim for 4 hours) away from all other meds as it will mop up the good stuff as well as the bad. If you can time it correctly, it can really give relief from those toxic feeling regressions. Were you mycoplasma positive? High strep, too?
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My 13-year-old PANDAS son is looking to network/penpal with other kids who have PANDAS. He enjoys corresponding with other kids (both boys and girls) of any age. A couple of weeks ago he created his own website for kids with PANDAS, and today he asked me to post about it to invite you and your kids to check it out. He hopes to hear from other PANDAS kids (or their parents) about how they deal with PANDAS, and he would love it if you would sign the guestbook and include any comments you might have about his website or your family's experiences with PANDAS.
The website address is www.pandas-syndrome.webs.com. You will see that in spite all he has been through, he has not lost his sense of humor. Please encourage your kids to browse and comment if you feel it's appropriate for them. He would also welcome private emails, so feel free to pm me for his email address.
Ellen
Wow, look at him go! You must be very proud of him!
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Hi,
Have a son with autism and lots of symptoms of PANDAS. Our regular Ped told us a few years ago that a blood test that we had done for something else indicated to him PANDAS or gave him some hint of it, I can't remember at this moment but he said that his numbers were somewhere around 600 or so, I am heavily researching this now because of stomach issues and severe noise sensitivity like a roller coaster ride sometimes (noise sensitivity all the time) was wondering if there is a web site that I could get some really good info for our Ped to read and which Dr. is close to us that we might could see? I did not find any on the list that were in Alabama or Mississippi, we are closer to Florida and saw a couple that some of you have used, Dr. Smith and Dr. Murphy. I have found two Dr. Murphy's in Florida I am not sure which one is the one for PANDAS. Thank you for any info and help
Lotafaith
Lotafaith,
We saw David Adams, MD in Birmingham for the past several years. I can tell you he has some experience with PANDAS. He's also a DAN! doc which certainly is a great thing if your son is autistic. Dr. Adams is no stranger to working with gut and sensory issues. I, however, was unsuccessful in gaining a trial of abx that so many people have had success with on this board. I did find Dr. Adams to be very intelligent and highly dedicated to his ASD population. I know my son was not his only PANDAS patient. I suspect he'll be at the AutismOne Conference in May and he'll gain even more knowledge on PANDAS. By that time I hope to be able to communicate my son's success with antibiotics back to him for the benefit of others in his practice. Best wishes to you and your family.
Gat's mom
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Don't worry. In a month or so you'll be rattling off info to the new 'newbies". My son's first exacerbation was in Sept 08. I've been reading this forum almost every day since I joined in April 09. So, it's been a while.
Actually, Dr T did mention a book recently he suggested. I don't think it was directly about PANDAS, but he did suggest one. I'll find the link.
I see how much you and all of the others on this board know and I just feel so far off from having that knowledge. It's frustrating but I will keep trying!The book I mentioned was about Streptococcus itself.
I'm sad to say there is no medical textbook on PANDAS, something written by doctors for doctors. I want to write or edit one. Long overdue.
Does anyone want to help me? Work in the publishing field?
Dr. T
I have two contacts, one in publishing and one is an author with six books to his credit. Both are aware of the journey my son and I have been on for the past years. I have emailed them both.
Gat's mom
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my non-pandas son, although i do some mild, mild possiblities, has occasionally recently complained of cold legs - not hurting joints, cold legs. we are experiencing cold weather here, but anyone heard of anything with that?
thanks.
My daughter has ice cold feet. They did warm while she was on augmentin. Not sure what it means.
My son has very cold hands when anxious which I always thought was odd because blood flow is diverted toward the limbs in a fight or flight response. He has an awful time regulating his temperature perceptions when in an exacerbation. His hands may feel cold to me, but he's forever complaining of being hot.
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Thank you both for the replies. I was looking through some labwork that we had done for gastro issues and I noticed that he was at the high mid-range for alpha & gamma haemolytic streptococcus. Is either the same "strep" that is at the root of PANDAS? He is also very deficient in zinc but I'm not sure if that plays any part in a diagnosis other than the sensitivity to light that I read about on the PANDAS website. We will have the rest of the family tested for strep too.
Your zinc comment sent me searching....take a look at these-you may be onto something:
http://www.ncbi.nlm.nih.gov/pubmed/3896271...ogdbfrom=pubmed
http://www.ncbi.nlm.nih.gov/pubmed/1969150...mp;ordinalpos=4
http://www.ncbi.nlm.nih.gov/pubmed/1951946...mp;ordinalpos=7
Good reading! Our DAN! always insisted my son be on a zinc supplement. Not ridiculous quantities but a boost everyday. In my quest to keep his daily pills down, I've back-burnered zinc thinking that because he's home he's not needing it to help ward off opportunistic stuff prevalent in school. I'll bring it back on again, at least 50mg for my 150lb'er. If anyone else is supp'ing zinc, be sure not to use it at the same time as any calcium supps as it will block their action.
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Well, let me start by saying some kids need IVIG or PEX. Some kids may not have found the right antibiotic yet. If you are not seeing any improvement after a decent amount of time on abx, that may be the case.
With my son, I saw all the other PANDAS symptoms that had surfaced go away, but a decent portion of the OCD stayed. The OCD wasn't as bad as it was during the exacerbation, but it was still definitely there and affecting life.It was our third step triggered excaerbation so I had the recovery of the others to compare it to and that's also how I got a sense of what was PANDAS for him and what was not.
For some, including my son, CBT, ERP or any other type of intervention like that don't work during an exacerbation. Or maybe it slightly works but not enough to make a real difference. Even when it was residual, my son would not cooperate with CBT.
Through our elementary school experience, middle school experience and now high school experience we've been through many different psychs, all well respected among their peers. We tried all manner of learned coping mechanisms and tricks to disassemble his ocd/anx. Nothing worked...nothing. However, once he was in a recovery phase at the tail end of the middle school exacerbation, I would apply some of the therapies that Tamar Chansky wrote about in Freeing Your Child From Anxiety. Only then did they make a dent and I know it was because his brain was functioning, physically, closer to normal. Again, I can only speak for my child, but he continually is aware that when an exacerbation happen the way he thinks changes. He's aware that a few weeks ago his thoughts were different and not stressful. Since we've been historically blessed with nice long remissions, I can tell you when the exacerbation ends, we have a kid with zero residual damage both physically and emotionally. I think that is what separates PANDAS driven ocd from other typical ocd and why psychological treatment, in our case, needed to differ. Sadly, we never found the psych that could understand that. My approach is to fix the physical impairment while offering all of the comfort measures of psychological support that I can think of because when the physical problem abates, he processes information normally and flourishes.
As with every aspect of PANDAS, I think it is important to list the tools and acknowledge that they work differently depending on the severity and stage of the child. We were blessed with great psychological support & were able to use ERP very effectively. But NOT as a cure - as a tool to get through the days. To get to a party, or to touch the playground, or to stop washing till she bled. Or to eat. Just getting through an otherwise impossible day. Once we FINALLY became blessed with Medical help, then we did find that shedding residual OCD was really easy using ERP tools as a support. Maybe she would have shed as quickly - maybe not. She is really good at them now, and during the 2 minor blips, those tools have served her very well. We actually use a version of CBT to deal with all kinds of childhood "woes" now, and it helps her think through a lot of situations. The workbook we used at home to help her understand what was happening to her (which was a huge relief to her) is called "What to do when Your Brain Gets Stuck".
Meg's Mom: I will see if I can find a copy of that workbook. I'm all for anything that might help. I only meant that in our experience, we had no luck with the 6 different psychs that we worked with over the years. In some cases, they did far more harm than good. I would love to find one who could really help Gat process the things he's going through and add insight that I may be too close to the situation to see. Can the workbook be used without the guidance of a psych?
Vickie: I did mean Freeing Your Child from OCD. I do have both books and found them both to be very good.
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Well, let me start by saying some kids need IVIG or PEX. Some kids may not have found the right antibiotic yet. If you are not seeing any improvement after a decent amount of time on abx, that may be the case.
With my son, I saw all the other PANDAS symptoms that had surfaced go away, but a decent portion of the OCD stayed. The OCD wasn't as bad as it was during the exacerbation, but it was still definitely there and affecting life.It was our third step triggered excaerbation so I had the recovery of the others to compare it to and that's also how I got a sense of what was PANDAS for him and what was not.
For some, including my son, CBT, ERP or any other type of intervention like that don't work during an exacerbation. Or maybe it slightly works but not enough to make a real difference. Even when it was residual, my son would not cooperate with CBT.
Through our elementary school experience, middle school experience and now high school experience we've been through many different psychs, all well respected among their peers. We tried all manner of learned coping mechanisms and tricks to disassemble his ocd/anx. Nothing worked...nothing. However, once he was in a recovery phase at the tail end of the middle school exacerbation, I would apply some of the therapies that Tamar Chansky wrote about in Freeing Your Child From Anxiety. Only then did they make a dent and I know it was because his brain was functioning, physically, closer to normal. Again, I can only speak for my child, but he continually is aware that when an exacerbation happen the way he thinks changes. He's aware that a few weeks ago his thoughts were different and not stressful. Since we've been historically blessed with nice long remissions, I can tell you when the exacerbation ends, we have a kid with zero residual damage both physically and emotionally. I think that is what separates PANDAS driven ocd from other typical ocd and why psychological treatment, in our case, needed to differ. Sadly, we never found the psych that could understand that. My approach is to fix the physical impairment while offering all of the comfort measures of psychological support that I can think of because when the physical problem abates, he processes information normally and flourishes.
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Okay . . . a new one!
DS12 returned to school for a full day today for the first time since October! Once we got him on abx, we've been slowly re-integrating him, basically one class period at a time. We are SO proud of him! And I am very grateful for having found this forum and "Saving Sammy," which, were it not for both, I know we wouldn't be in the positive place we are today.
Thank you, All!!
What a great thing to read! Hope springs eternal and there is, truly, strength in numbers. Thanks so much for sharing this and congratulations to both your son and you. Enjoy the end product of your dedication!
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About 10 days ago, started on some new supplements and they have made quite a difference. From the TS conference DVD's, I heard glutathione levels are very important in chronic conditions, and the combination of alpha lipoic acid and n-acetyl cysteine can help restore these levels. I had been taking the alpha lipoic acid (ALA) for a while, but added the n-acetyl cysteine (NAC). Dr. Martin Pall's book "Explaining Unexplained Illness" discusses a lot about the cycle of nitric oxide and when oxygen gets added and subtracted. It is an appropriate cycle, but when it gets heated up and happens too much, bad things happen and you have chronic diseases that are hard to get rid of, because it's hard to get out of the cycle. Seems pretty relevant for PANDAS, and he does include rheumatic fever as one of his chronic diseases he discusses.
Okay, I also added an "oxygen" supplement (Oxygen Supreme, but there are many brands), and started taking Zinc in liquid form--only 6 mg instead of 25 mg tablet--as I heard Zinc is so important, and I do believe the liquid is more usable (particularly for those with digestive issues, such as myself), and a couple Xymogen products which are expensive--Immunotix (beta-glucans) and Xyrographis (anti-bacterial anti-viral ...)--both of these for immune system.
This combination of things has helped a lot, and also reduced need for some of the other pills I have been taking. Not necessarily suggesting the whole combination, but for anyone looking for ideas, I think the ALA and NAC and oxygen and Zinc are good ones to consider for chronic conditions like PANDAS or TS.
The same book mentioned above give good mention to Albert Donnay and his theory that carbon monoxide poisoning can cause a lot of chronic conditions and multiple sensory sensitivity. From Albert Donnay's suggestion, I have been on oxygen therapy (breathing equipment) for 2 hours a day for about 2 1/2 months now, and it has definitely helped sleep. While Martin Pall believe's carbon monoxide poisoning is but one of the possible causes for chronic conditions, I think his belief is, regardless of cause, it can be important to work on the nitric oxide cycle to get out of vicious cycle, and oxygen treatments and ALA/NAC can help do it. Not nearly done with the book, so there is probably more I have not gotten to yet.
Well, a bit rambling here, hopefully it makes some sense, just wanted to pass on a few ideas that seem to have made a good bit of difference in a short period of time.
Michael
While under the care of a DAN! doc during my son's last exacerbation, he insisted on NAC and zinc daily. When my son was better and life got back to good we were permitted to discontinue those supps (there were many we were encouraged not to discontinue...ever). When he started another exacerbation 6 wks ago the DAN! doc started him on Fluconazole (antifungal) which is the route he takes versus abx. He told me after we treated yeast, he wanted my son on 600mg of NAC again. I never have restarted the NAC because we continue to treat with Fluconazole (to keep yeast at bay while treating now with augmentin). Any idea why NAC was to be added after yeast treatment instead of during?
Many thanks,
Gayle
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I had a recent phone consult with Dr. K., and he believes my PANDAS is from mycoplasma pneumonia. I will be starting on clarithromycin, probably on Monday. In the meantime, if the theory of this disease is auto-immunity from bad anti-bodies, I thought I'd try NAET to treat the "allergy" to the buggies. Finally gave this a try today. My NAET practitioner had 4 separate bacterias we tested. I tested okay for one (don't remember name), and bad for 3--one was mycoplasma pneumonia (tested worse for), one was strep (next to worst response), and the third I don't remember. All this testing was done at least single-blind, then she read the names off and results after we were done with them all. We treated just the mycoplasma pneumonia today. Since I'll be starting antibiotics in just a few days, not sure how much we'll be able to tell happened as a result of the NAET, but I thought I'd give it a try.
Michael
It is worth a try. I understand the concept of one new therapy at a time but that's hard to stick by when you are suffering, particularly when not all of the new therapies are invasive in nature. Good for you. NAET is another option that we have yet to explore but one that I continue to consider. Interesting, and promising, that you tested positive for the bugs that Dr. K is also treating. I'd call that a step in the right direction. Keep us posted, I think this is very interesting work.
Gat's mom
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Hi,
My daughter, 16, is being treated by a classical homeopath. I thought I would check to see if anyone else is going this route. It would be nice to compare notes.
My daughter does not have a formal diagnosis of PANDAS but I suspect that is an element of her case. She has sensory processing problems as well as contamination type OCD and had completely messed up sleep. She was sleeping all day and up all night. She is not doing any school at this point.
We are in month three with the classical homeopathy. Her sleep has recently flipped around to normal so that is a wonderful positive. Her raging had stopped but just this week she got a cold and has had 3 OCD/rageful meltdowns. I am thinking the cold is the trigger. The homeopath is pleased that she developed a cold as she sees this as the body fighting back (she had not had any colds/flus for years).
So far - I am very hopeful with the homeopathic treatment. Anyone else out there trying this?
Sandy
Have never tried but have given much thought to it. I know of another discussion board for parents of autistic kids and while my son isn't autistic I garnered much good information through the years from that group (before I knew of this godsend of a board). They are, as a group, pretty opposed to abx for their PANDAS population and many rely on homeopathy. Pleo San Strep is a remedy that I would like to try for my son. We're currently finally on a good abx trial but I strongly suspect that even if it works perfectly, I will be looking for some maintenance therapy that is gentler to his system and effective in keeping strep at bay. I also work with a herbalist who has been watching all of this through the years who agrees with this theory.
Has your daughter had any of the testing that our kids typically have to conclude a PANDAS diagnosis?
Gat's mom.
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I like to raise the issue of "hot" condition. There are many posts from parents regarding their PANDAS children complaing of "being hot or sweaty." I have a strong conviction that being hot or sweaty is closely related to a defect in thyroid function.
About one year ago, my 15-year-old Japanese son had severe vocal tics accompanied by a feeling of hotness even in the middle
of winter. A tic doctor advised us to see a thyroid doctor. His TSH (thyroid hormon) reading taken at the thyroid doctor showed he has had acute thyroiditis. The thyroid doctor prescribed β blocker for the son. The prescription instantly proved effective. A few days into taking B blocker, the son'ss sweaty conditions dissipated quickly and his tic symptoms also shifted to mild levels. Combing through literature, we found a document that says that low IGG, which was also a problem for the son, causes autoimmune problems
including mulfunction of the thyroid system. My son also had low IGG and failed on most of 14 pneumo titers, which provided a reason for
monthly IVIG. He has been in a fairly good condition in the past year, aided by monthly IVIG at Dr. B's office. At present, his TSH level is within a normal range and also IGG levels are nornal. My reasoning is that if streps infect the son, he will not be able to launch
counter defense because of low IGG and failed pneumo titers. This will cause autoimmune problems such as attacking the brain's portion governing vocal and motion control and also mulfunction of the thyroid system. And the thyroid system becomes defective, the patients tend to get sweaty or complain of being hot. Thyroiditis is also an autoimmune disease. My instinct is that beta blocker can be a quick fix for thyroid problems. So, I strongly recommend any patient feeling hot should take TSH readings.
My son has been on IVIG treatment every month since one year ago. IVIG has kept his IGG at normal levels, keeping irregular reaction to strep infection and thyroiditis at bay.
Interesting possible correlation. My son, whose 16, has the "hot" thing going on, too. We just had labs ordered among which are quantitative immunoglobulin levels. If his IGG is low, I'll be looking more closely into thyroid testing. His maternal grandmother has had considerable thyroid issues for years.
Thanks for the good information!
Gat's mom
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Do any of you live in GA?
East TN...pretty close
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Hi all-
My son is off his second round of antibiotics, testing negative for strep, and his pediatrician (who diagnosed the PANDAS) says that it all we can do for him, and to call if we notice a "behavioral spike", as that will be our sign he has strep. Well, in our house there is a behavior spike every couple of hours. He had a bad cold last weekend and his tic went away, only to return once he could breathe through his nose again. Consulted a child psychologist about pursuing treatment for our meltdowns, hyperactivity, and defiance that have been a mainstay around our house for the last few years (in retrospect, probably since he first started struggling with this). She had not heard of PANDAS but strongly encouraged us to get a second opinion, as she was concerned about starting therapy until we had a handle on the PANDAS.
Long story short, I am tired of screwing around about this. Neither pediatrician around here thinks there's anything else to do, just sort of wished us luck if we wanted to go try some behavioral therapy. I have a 4 yr old who has constant fight or flight responses any time he feels threatened, defiance at an unbelievable level, hyperactivity, and significant fine motor problems--he has never even had a chance to learn to write his letters because he refuses to pick up a pencil. Now he has a tic, as a result of his recent strep infection. Likely we won't make it much longer at our current preschool, as I can't expect them to go through all this with us.
I just discovered that Dr. K is covered in my insurance network. I have drafted an email to him summarizing our story. We are about 5 hrs away, but I would drive there tonight if I thought he could help us. My question is whether I should offer to make an appointment, or just let him decide how to proceed? I am afraid he will just tell us the antibiotics should have been enough, and then I am left with hanging again.
I understand your frustration completely and you are certainly not alone. I say get the appointment, the first one he has available. From everything I've read and my experience with Dr. T, I cannot imagine that any of the true experts in this field, Drs T, K, L & B, would tell you they were out of suggestions if the antibiotics you've tried weren't effective. There are multiple options available, abx is just one. Further, your child may not have been on the right abx or correct dose. You are very fortunate to have Dr. K in your network. That's a great sign, jump on it!
Gat's mom
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Hi Lynn,
During this exacerbation, tics are not our big issue...it's separation anxiety and some contamination fears thrown in for good measure. We have the please of being under Dr. T's service so for the first time ever, I'm not trying to convince someone of what's going on with my son. As frustrated/sad/scared to death as I am, we actually have it so much better now than ever before. Just having a great doc adds a layer of hope that we'd always lacked previously. If needed, I'd pull out every big gun in the arsenal to get him back to his life of a few weeks ago. Since he's a good responder to advil, I suspect if needed he might be a good responder to steroids but I want to know we're not dealing with lyme as well before even bringing that up with Dr. T. Historically we have ridiculously high titers during an exacerbation, so I'm really hoping oral abx will pull the trigger for him. He's been through enough...they all have.
Thanks so much for your support!
Gayle
(((Gat'sMom))),I'm soooo sorry to hear your frustration. Does your son suffer primarely from tics/ocd or both? I know with tics, they are the hardest to eliminate. Sometimes resulting in pulling out the "big guns"-IVIG! Have you considered IVIG? Do you see a PANDAS doc? I hope you find your answers/resolve, soon!
Thinking of you and wishing you success.
Lynn
My dd has been on antibiotics now for 2.5 months. It's hard to notice the changes on a daily basis because life is still stressful each day to some extent, but when I really take a step back and look at the big picture, that is when I see the progress.I have never once (except the first day she was on steroids and when we first added Advil) noticed that in one or two day that things improved.
Yet, 3 months ago I was wondering what on earth we were going to do. Psychiatric hospitals were on my mind and I had help coming over daily to just get us through the day. I was crying daily and my dd couldn't even get to the horse show she so BADLY wanted to ride in, on time. She couldn't walk, couldn't dress, couldn't brush her teeth, couldn't get into bed. She cried and raged daily. I could go on and on.
Frustration is still a daily problem for us, but its more along the lines of...I get frustrated watching her dress becasue she puts on the clothing 4 or 5 times. She's done in 5 minutes. I get frustrated prodding her to brush her teeth, but she does it once a day (most days) without crying or raging. We make it to places on time now and before I couldn't even tell people whether we'd make it or not, let alone on time. She still has problems walking (shuffling and repeating) and getting through doorways, but it isn't holding us up. Her mental state of mind is one of feeling frustrated almost all the time, yet she can deal with it now most days without lashing out.
Hang in there. It will come.
Angela
"Hang in there. It will come." I need to write that on my bathroom mirror. Geez, thank you so much.
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My dd has been on antibiotics now for 2.5 months. It's hard to notice the changes on a daily basis because life is still stressful each day to some extent, but when I really take a step back and look at the big picture, that is when I see the progress.
I have never once (except the first day she was on steroids and when we first added Advil) noticed that in one or two day that things improved.
Yet, 3 months ago I was wondering what on earth we were going to do. Psychiatric hospitals were on my mind and I had help coming over daily to just get us through the day. I was crying daily and my dd couldn't even get to the horse show she so BADLY wanted to ride in, on time. She couldn't walk, couldn't dress, couldn't brush her teeth, couldn't get into bed. She cried and raged daily. I could go on and on.
Frustration is still a daily problem for us, but its more along the lines of...I get frustrated watching her dress becasue she puts on the clothing 4 or 5 times. She's done in 5 minutes. I get frustrated prodding her to brush her teeth, but she does it once a day (most days) without crying or raging. We make it to places on time now and before I couldn't even tell people whether we'd make it or not, let alone on time. She still has problems walking (shuffling and repeating) and getting through doorways, but it isn't holding us up. Her mental state of mind is one of feeling frustrated almost all the time, yet she can deal with it now most days without lashing out.
Hang in there. It will come.
Angela
"Hang in there. It will come." I need to write that on my bathroom mirror. Geez, thank you so much.
This is the fourth month in a row he has a set back roughly at the beginning of the month. Nov and Dec were clearly linked to strep, January was impetigo (staph or strep?), but right now no one seems to be sick. His sister's tummy aches turned out to be constipation (or so the doctor thinks), and it turns out even though I had almost sold the strep connection to him, the bloodwork got sent to the wrong lab so we never did get those titers, grrrrr!
My praise for today...
in PANS / PANDAS (Lyme included)
Posted
Perfect news, K! Congrats and good job taking the time to be observant of the forward motion. Onward and upward!