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dsnow777

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Posts posted by dsnow777

  1. Our son has lyme and co-infections and has been treated for 2.5 yrs with minimal success. He has several sx, but one sx, belching, has been getting worse over the last few months. I know that this can be a sx of lyme or general GI issues but I am wondering if any of you have seen this sx spike and what you have used to help reduce it. One potential reason for the increase is our start of biofilm protocols 5 months ago. I guess it's possible that breaking down the biofilm could release more bad bugs which can cause GI sx.

     

    Any thoughts or experiences are appreciated. Thanks, John L

     

    Random question, but does he swallow air a lot as a habit??

  2. Hey man,

     

    Went through something similar this past September.

     

    Question, when the ###### seemed to hit the fan out of nowhere, was there any kind of sickness that preceded it all like a virus, cold, vomiting, anything?

     

    For us, our daughter had vocal hums/throat clearing along with eye rolling and a bit of head jerking at one point.

     

    It all came out of nowhere for us after she just came home from school one day and fell asleep at 5:00PM with a fever. She vomited and was sick for about 2 weeks after that and the whole onslaught of tics followed along with a huge personality change, obsessions, anger, tantrums, etc.

     

    Long long road since September.

     

    We've been to every kind of doctor you can imagine.

     

    I may have more advice or leads based on your response to the above. Or maybe you're experiencing something else.

     

    On an upswing.... tics aside... your boy seems like a great kid and with time this shall pass!

     

    I'll follow up with some stuff that has seemed to work for us on another follow up post but I'm interested to hear your answer to my main question above.

  3.  

    My thought is that yes, the vocals can be caused by yeast.

    Per me and fcefxr we have direct correlations to treating the gut and remittance of vocals.

    Yes, Augmentin raises yeast to the point that when/if ds goes on it, he needs to have an antifungal with it. For my ds12 the yeast gets so bad on Aug. that it gets into the joints and causes severe pain.

    If there is a disbiosis in the gut that could cause pans symptoms. And unfortunately sometimes as you treat the disbiosis the pans seems even worse. So you start to fear treating.

    It is a vicious circle.

     

    It is hard to confirm lymes, but i would definitely investigate further. I am not that lyme literate and not sure what your bands indicate.

     

    Im curious...

     

    I see this over and over again about how everyone seems to correlate yeast. But how do you even know if there is a yeast problem? I asked my pediatrician about this too and he said unless her stools are white or she has rashes that there is no yeast. He seems to believe or care about nothing. I need to find someone else.

     

    The joint pain is another thing we had happen a few days BEFORE we started augmentin.

     

    My daughter said her knee hurt. She didn't injure it in any way, it just hurt and she was limping around for 3-4 days. It is fine now. There was no swelling.

     

    How do you go about finding out if there is a yeast issue?

    Where/How do you even go about "treating the gut?

     

    I can deal with everything else, we just wish so bad this vocal tic would go away so she can go back to school. It's so frequent and distracting now that there is no way she could be in a classroom at this point :(

  4. Thanks guys,

     

    Yes, Dr. T is awesome. He said our next step was to find a Lyme specialist and Integrative Doctor near where we live, which we did but she's booked here until January 27th. I need some type of advice before then so today I have a phone consult with a Dr. who was a contributing writer to a book on Lyme I found. He's in San Francisco.

     

    We're in Orange County, CA.

     

    We are using probiotics.

     

    I'm giving her 2 of these per day: http://www.jarrow.com/product/535/Jarro-Dophilus_Allergen-Free

    and 2 of these per day: http://www.jarrow.com/product/265/Saccharomyces_Boulardii_MOS

     

    She's also taking cod liver oil and the liquid natural calm vitamin.

     

    Switched to GF/CF diet about 45 days ago although it hasn't seemed to make any difference in anything :(

     

    Can't wait to see what the lyme doc has to say today.

  5. We are in 911 mode at this point.

     

    Quick history (i've posted elsewhere).

     

    Early September: Lethargic, Fell asleep at 5PM, High fever at night

    1 week later: Complete personality change, anger, rage, mean, anxiety

    Vocal Tics develop

    Weeks that follow: Motor tics (mostly eye rolling, delayed blinking)

    Behavior Issues Continue through October.

     

    November:

    Tics stay, not as strong.

     

    Dr. T tests revealed early lyme: IgM positive for 23, 41

     

    Our pediatrician says its not lyme, high probability of false positive, etc.

     

    We started her on Augmentin 400mg twice a day from Dr. T this past Saturday.

     

    All of her bad behaviors came back.

     

    Her vocal tic is so bad, worst ever, 40 a minute at least. mmmph mmmph deep from the lungs grunting like a laugh sound.

     

    Have to pull her from school.

     

    Do these symptoms confirm lyme since the Augmentin seems to have quadrupled the tics?

     

    I don't know what to think anymore. Dr. T says might be lyme, lets treat it. Local peditricians have no clue or say its probably false and it cant be lyme.

     

    My head is going to explode.

  6. Does anyone know of a good immunologist that specializes in PANDAS/PANS in California?

    Preferably in Orange County, but we're 1 hour from Los Angeles as well.

     

    We went to an ENT at CHOC who thinks we should see an immunologist but did not know if any of the immunologists from CHOC would be interested in taking our case on or not. Still hoping to hear back but its been a week.

     

    Thank you!

  7. Is this dentist the same that put that crown on? Was it part of a root canal?

     

    I would consider going to a different dentist and get another opinion. They can xray it and see if there is decay.

     

    re: Xylitol products: they can be found online like at Amazon. As for teeth cleaning, if it's been over a year, I would really consider getting them cleaned. you could increase abx prior to cleaning and give an anti-inflammatory after the the appointment. Tooth decay, the need for novocaine and possible anesthesia is scarier to me than a cleaning.

     

    Yeah same dentist. We've booked another appt to have it checked out. I've been saving the floss every night in a scrap book. Each time a black reside/granule is left on the floss near that crown. So strange.

  8. I'm hoping someone might have some medical answers to this. I'm waiting back to hear from a dentist but am jumping the gun.

     

    Some months ago I noticed that while flossing my 6 1/2 year old daughter's teeth every night, the tooth she has a crown on would leave some black residue or even a tiny black spec on the floss.

     

    I thought it was strange so 2 months later (about 6 weeks ago) I asked her dentist. He said it sounded like it's just food. I said it's black every time. He said that it's probably just dried blood. It is definitely not dried blood.

     

    I have been paranoid that her PANDAS symptoms may be caused by some type of metal leaking from the crown.

     

    But after digging in deeper I started to come across the possibility of a cavity developing underneath the crown. Then found that "tooth decay" can indeed be black and that it's possible to leak out from the crown.

     

    What I found next kind of made my stomach drop, that "Dental Caries" or cavities/tooth decay is "an infection, bacterial in origin."

     

    and...

     

    The bacteria most responsible for dental cavities are:

    Streptococcus Mutans

    Streptococcus Sobrinus

    Candida Albicans

    Lactobacilli

     

    Now I know those forms of strep are in everyone's mouth (from what I've read) but COULD it be possible that this "black" tooth decay is leaking out and causing my daughter's:

    Vocal Tics (non stop throat clearing, grunting)

    Motor Tics (Eye blinking, rolling)

    Rage

    Major Mood Swings

     

    I appreciate any thoughts or advice in this matter.

     

    I have started to keep the floss from each night and taped it to a paper inside of a plastic sheet. You can clearly see blood on some next to the black stuff and they are completely unique. This is not blood I am dealing with.

     

    Thank you!!

  9. We're still trying to get to the bottom of our 6 year old DD's vocal tics.

     

    One strange thing we've noticed that came about at the exact same time was under arm, armpit odor (BO). Like strong and potent.

     

    Also on a random note, her hair almost always smells like urine. Always has.

     

    But the armpit thing is new and its come about just as strong as the vocal tics... at the same time.

     

    I'm wondering if anyone has heard of this because so far each doctor we've told doesn't seem to think much of it.

     

    Thanks

  10. Thanks everyone for the replies so far.

     

    We are in Orange County, CA.

     

    On another thread I found doctor Chitra Bhakta in Santa Ana but she is booked until Mid January.

    http://www.ocimc.com

     

    I'm not even sure if thats the right doctor to try or If I should go to a more PANDAS friendly pediatrician first.

     

    I think Dr. Sears family might be good but not sure:

    http://www.askdrsears.com/

  11. A bit of background on our daughter.

     

    Each year for the past 3-4 years she's had a mild vocal hum tics. ALWAYS during and after becoming ill. Usually after fever, etc.

     

    This is what's going on so far for us.

     

    We took her to a psychiatrist last week and she's been diagnosed with Generalized Anxiety and Separation Anxiety.

     

    But now that I've pieced together the timeline. Something is definitely out of whack.

     

    We have had the blood test already for ASO, CBC. We didn't see the #'s but our pediatrician just said "everything looks great on the blood test" and told us to see a psychiatrist.

     

    TIMELINE:

    9/4: First day of school. 1st grade.

    9/10: Daughter acting off, fell asleep at 5:30PM (8pm is usual bed time)and woke up in the middle of the night with a fever. First signs of mild hum vocal tics started within a couple of days near 9/10.

    9/11 & 9/12: Daughter home sick from school.

    9/16: Horrible uncontrollable bad behavior. Anger, rage, defiance, crying. Constantly hurting her sister. Totally out of character. Never had experienced this type of behavior in her. Pooped her pants (pooped her pants a few times over the next week too, NEVER happened before).

    9/10 through 9/29: Very mild vocal tics (soft hums)

    9/26: Daughter woke up feeling sick. We sent her to school, she felt sick all day, ended up throwing up twice at school. She ended up in nurses office. Nobody from school called us to come pick her up.

    9/27 & 9/28: Daughter Missed school, sick.

    9/30: Daughter Lethargic all dayThrew up again in the middle of the night, was feverish. (first time we started to hear the vocal tic develop into more of a grunt).

    10/1: Missed school, sick

    10/1: Grunting and humming vocal tics started in combo, very strong. Also noticed subtle eye tics during this week (rare but did notice her kind of looking side to side).

    10/10: First note to teacher alerting her of vocal tics. More grunt type tics had become stronger.

    10/14: Eye tics & Vocal Tics very strong. Very very bad day with emotional behavior and tics. Eye tics strong while watching TV.

    10/18-10/21: Tics less frequent but still there. Vocal tics are now a hum, grunt, and throat clearing (all 3). On 10/21 the tics were very minimal.

    10/22: Daughter wakes up sick again, nose full. Vocal tics pick up intensity again.

    10/23: Vocal tics strong again and constant, nose full. Daughter sick. Full nose, coughing.

    10/19-10/23 Range: Major rage/anger/crying. Almost always set off by her little sister such as little sister drawing on her papers, or accidentally hurting her/grabbing her. Rage/Anger is to extremes we have never seen. Screaming, spitting, etc. just completely loses it.

     

    Separation anxiety is strong also.

     

    I should also add that the Psychiatrist thinks her current classroom is too over the top for her. It is unstructured and she has recommended switching classrooms to a more structured environment with familiar faces to help with the anxiety. If that doesnt work she suggests a smaller school setting (maybe private). This is all great but looking back at the timeline with all the fevers and sickness and weird behaviors it seems like there might be more at play here. Or could it be that all of the sicknesses and tics are all stemmed from the classroom setting and anxiety (due to the timeline of starting right after school started). But yesterday our daughter actually asked to go back to school and say she likes it so we're so confused.

     

    We mentioned to her current teacher that a boy next to her was constantly complaining to our daughter about her vocal tics and to please move her. She said she would and a week passed by and she still hadn't done anything. So we've kept her home since last Thursday until we can get her moved just to rule the class situation out.

     

    OCD is not really an issue. She is persistant on things and gets upset if they don't go the way she wants but in no way is she doing OCD type behaviors such as counting or washing hands or anything like that. The other day some books fell at bedtime, I asked her to deal with it in the morning but she frantically insisted on putting them back to normal while crying uncontrollably, that would be the extent of the "OCD". Anger/Range getting mad at her sister like never before is the bigger behavioral change.

     

    HELP

  12. Forgot to add...

     

    She had had this "onset" vocal tic thing every single year, once per year for the past 3 years. Usually its a soft hum and it has always been right after she's been sick, though not necessarily when she has "strep". This year however, right after she was sick again (and also the start of 1st grade) she got the same hum but this time it has progressed into a more loud hum/grunt as well as an eye brow raising looking side to side type motor tic. The personality change extremes have come along with it. Rage, OCD, fears, etc. So strange and so sudden.

     

    Her last swab for strep was maybe 6 months ago when she was very sick, but it was negative. She has not had any vaccines for at least 6-8 months either.

     

    Our gut tells us this is not just a typical stress related tic. Something is very very wrong with her system. That's our feeling anyway.

  13. Thanks for all the quick replies.

     

    This provides me with a great deal of relief. The pediatrician we are dealing with is very traditional and only prescribed the blood test at our urging. His diagnosis was that it would all "just go away with time" and immediately referred us to a psychiatrist without even actually physically seeing our daughter.

     

    We did the blood test tonight and we'll see what the current doc says tomorrow.

     

    Her vocal tic has progressed so badly within the course of 5 weeks that she cannot go one sentence without doing it in between and after.

     

    Tonight a stack of books fell in her room and she frantically insisted on re-stacking them. This is so out of character for her.

     

    Based on what this doc says we'll try to find a PANDAS specialist here in Southern California.

     

    Thanks!

  14. Our daughter is 6 and started the 1st grade in September.

     

    Since she was 2 years old she would develop a soft, repetitive humming tic immediately after becoming sick. It would last for maybe 1 month and happened every year for 3 years in a row.

     

    This year (the past 5 weeks specifically) have been a roller coaster and have basically started to turn our world upside down.

     

    One weekend (exactly 5 weeks ago), it was as if she had a complete personality change. She became defiant with uncontrollable rage/anger, constant aggressive tormenting of her 19 year old sister, and on and on. The ocasional sibling rivalry has always been common but the degree to which it has now escalated to has never been seen before. This type of behavior has always occurred with her but everything has been amplified to the extreme. If her sister accidentally marks her with a pen for example... the amount of anger and rage sounds worthly of a neighbor wondering if everyone here is ok.

     

    This same weekend is right around when we noticed the onset of her yearly hum, which came about and within 1 week soon escalated to an all out air blowing through the nose followed by an immediate hum/grunt. Over and Over and Over.

     

    This hum/grunt has gotten so bad that she sometimes can't even get through a sentence without pausing to do it between words. Some days its about 9-15 per minute. Other days it seems like a machine gun of sounds. It completely stops if she is drawing or trying to complete a task.

     

    Adding to this, within the past week she has now also started doing something with her eyes where she raises her eyebrows as high as they will go and then looks to the right and to the left. This is really bad if she watches TV but less so without it. The vocal hum/grunt and eye brow/eye jerking is now a pair.

     

    We are so broken up about all of this as it just seemed to come out of nowhere and has snowballed since. Every single day has been worse than the one before it.

     

    Our pediatrician thinks they are probably stress related transient tics brought on by school as everything started immediately after the first week of school. It's also worth noting that she was sick the first week and this all happened immediately after. We called him again a few weeks later to tell him about the behavorial changes as well and he referred us to a psychiatrist. Not a psychologist or neurologist.

     

    We found PANDAS researching online and have a blood test scheduled for today. So that is our first step.

     

    We're also getting her tested for food allergies later this week.

     

    We also sent a note to her teacher to alert her to the tics and soon found out that our daughter seems "zombie" like in class. She seems lost and is having trouble remembering where things go, etc. Which is completely out of character as in kindergarten she was one of the top students, finishing her papers first, etc. This just does not sound typical of our daughter.

     

    Her handwriting, drawings, etc. all still look great. She has no learning disabilities, finishes all her homework with little direction at home, etc. So the learning is fine and unchanged.

     

    FEARS have intensified. She will not even go to the bathroom here at home alone without one of us walking her to it. She is afraid of everything. This has been a problem always, but again it is now amplified.

     

    With friends she is anything but shy or "zombie" like. She is very outgoing but also has extreme problems with bossiness, others touching her things and losing her temper if things doing go exactly how she wants.

     

    She has been active in dance and gymnastics for years but now does not want anything to do with them. She says she is worried my wife will leave her there.

     

    We are at such a loss and feel helpless.

     

    The such sudden and seemingly never ending escalation of vocal and facial tics and uncharacteristic + amplified personality changes all seemingly out of left field makes us feel as if something is very very wrong.

     

    Any and all advice is appreciated.

     

    I just bought this to start trying daily (magnesium). How many mg of magnesium is recommended to improve ticking symptoms?

    http://www.iherb.com/Peter-Gillham-s-Natural-Vitality-Kids-Natural-Calm-Multi-Fruity-Splash-Flavor-30-fl-oz-887-ml/22855

     

    Thank you!

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