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Today Show - Sneezing Tic

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laurenjohnsonsmom,

 

Wanted to leave you a some info on those two vaccines. I have included links to the package inserts. Not sure if the one I'm leaving here is the one she got (Tdap), but alum adjuvants are in the majority, if not all of the combo's of that vaccine.

 

If you scroll down to the fifth post in the first link, you will see a post by a woman with an EXTENSIVE background in vaccine research. Alum and thimerosal/mercury (still contained in the seasonal flu shot in most cases) are something that I'm very leary of injecting into my neurologically sensitive kids. After doing a lot of research myself, I was left feeling very betrayed regarding the safety and effectiveness of the whole program. I read a waiver that I had signed, regarding the birth dose of Hep B for my younger son from his birth records that I had retrieved form storage. I literally had tears of anger running right down my face. It was a "hold harmless," letter for the hospital and anyone connected with any adverse events that my son may experience from that vaccine. WAS I NUTS? That letter was not complicated, it was straightforward. My trust was so complete that I wouldn't be asked to give my child anything that didn't have a proven track record of safety, and a clear benefit to his health, I didn't even READ the thing. I just glanced at it and signed. I will never quite forgive myself for that. I didn't know what Hep B was, how you caught it, how you treated it if you did contract it, how long any protective immunity was thought to last, or consider long term risks to his health. Ditto for the other vaccines. I just did what they told me, and thought I was protecting my babies/children. That luxury/misconception is forever gone, now. As far as a SIXTH Tdap, how well can a vaccine work, that requires SIX between the age of approx 2 months and approx. 11 years of age?

 

Well, here are the links anyway. Didn't mean to get carried away on the subject, but it is something that you will probably want to become knowledgeable about. I'm wondering if Lauren completed the HPV series? If not, PLEASE do some research on that vaccine before you continue!

 

Here are some things that you might find helpful

 

Momtezuma....alum info fifth post down

 

http://www.mothering.com/discussions/showthread.php?t=392079

 

 

http://www.merck.com/product/usa/pi_circul...gardasil_pi.pdf

 

Each 0.5-mL dose of the vaccine contains approximately 225 mcg of aluminum (as Amorphous

Aluminum Hydroxyphosphate Sulfate adjuvant)

 

 

Tdap

 

http://docs.google.com/gview?a=v&q=cac...WbD67YUdNvEyIng

 

1.5 mgs aluminum (.33 mgs aluminum)

 

Preventing Gardasil Vaccine Injuries & Deaths

http://www.nvic.org/NVIC-Vaccine-News/July...ies-Deaths.aspx

 

 

***I included this one because the first time I read it in a vax insert, I was astounded. Tetanus-560 cases reported in 1947....prior to routine use of the vaccine???? I thought tetanus infected thousands and the vaccine was essential. Now, I wonder how in the world my infant was supposed to contract tetanus? WHY are we jamming our infants with an immature immune systems full of these vaccines, and what part is it playing in autoimmunity along with genetic susceptability and other environmental toxins? The risk/reward ratio just seems severely out of balance.

 

 

excerpt

http://74.125.95.132/search?q=cache%3AfUIn...hl=en&gl=us

 

Following routine use of tetanus toxoid in the US, the occurrence of tetanus disease decreased dramatically from 560 reported cases in 1947, to an average of 50-100 cases reported annually from the mid 1970s through the late 1990s, to 35 cases in 2000.

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I wish I had more time to contribute to this board. Spent all day at more Doctor/psycotherapist appointments. Lauren needed a hairct then we raced back home to met her new tutor, who just left at 9 pm. My children are having dinner at 9:30 pm. I am the worlds worst mother! Last night and today have been extremley hard emotionally for both Lauren & I. The cracks are starting to show. :(

 

I need to find more hours in each day..

 

We go to CHKD tomorrow morning at 6:30 a.m. for Lauren's cat scan, MRI and the 1st blood draw. (they have to do three seperate blood draws because they can only take so much blood from her at one time). Than at 11 a.m. and EEG. I had to pick up a heavy sedative at the pharmacy to bring with us in case the "snough" (1/2 cough, 1/2 sneeze) tic make her move to much-than she will have to have the sedative.

 

To those of you who wrote me at the laurensneezing@gmail.com address. I just got those emails today, even though I set the account uplast Friday?? I will respond to you all soon.

 

I am so tired! I can't even type! Thank you again for all the helpful resources and words of wisdom (& hope).

 

to be continued..

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Lauren'smom,

 

Just take a deep breath and take care of your family. I suspect most of us will still be here when you have more time.

 

I almost hate to say this, because it seems to be different for each child, but many times it seems these tics can run in 6 to 8 week cycles. We have found that to be true in our house. I'll be praying that Lauren has a remission soon.

 

Make sure Lauren is well hydrated for the blood draw (unless she has to limit fluids for the other testing) it makes it easier.

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Take care of yourself. This is an overwhelming time, and all that matters right now is you and your children. You owe nothing else to anyone. There will be time enough, once you have found answers for Lauren.

 

I can't imagine what you are going through. I could barely get through many days without any attention from the media - you are juggling a lot with great class.

 

We are all wishing you the best, so just take care. All my best -

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Hi LaurenJohnsonsMom,

 

I really, really encourage you to get a throat swab for strep first. It takes 5 minutes for a rapid and 72 hours for the culture. They can do the swabs together. If the rapid is positive, that's enough to get you on antibiotics. This has extremely high risk with low risk.

 

Are you or your doctor thinking that she has brain damage or ADEM? It doesn't sound like it for your symptoms. MRIs are really hard for tic-y kids and Cat Scan's have a lot of radiation. It would seem these would be good if you've ruled out the easier tests.

 

Also if she's on any psychotropic drugs already (like SSRIs or atypical antipsychotics) you need to be careful with any sedative. Please ensure you inform the pharmacy of anything your daughter is currently taking.

 

Regards,

 

Buster

 

 

We go to CHKD tomorrow morning at 6:30 a.m. for Lauren's cat scan, MRI and the 1st blood draw. (they have to do three seperate blood draws because they can only take so much blood from her at one time). Than at 11 a.m. and EEG. I had to pick up a heavy sedative at the pharmacy to bring with us in case the "snough" (1/2 cough, 1/2 sneeze) tic make her move to much-than she will have to have the sedative.

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Laurensmom,

have you gotten the throat (and hopefully a vulvar/vaginal culture and throat cultures on family members) done yet? IMO it seems a little backwards for these docs to rec a CT scan (lots of radiation there!) and MRI (esp. if it requires sedation)...before a simple throat culture (which any ped can do).

 

What do they expect to find on the MRI/CT scans? If it's PANDAS it won't show much. If it's non-pandas tics, it won't show much either. There are a couple of kids on this forum that had PANDAS and the MRI showed a sinus infection (but it makes sense to do the cultures first if that is the concern).

 

Have you tried Advil (Ibuprofen) yet? I'm not sure how much Lauren weighs...but if she's 12 I would think she could take 400mg. It would be interesting to give her a days worth (every 6-8 hours) to see if you notice a difference (give with some food).

 

RE blood draws: I don't know if you are aware of something called EMLA cream. It numbs the skin b-4 a blood draw (you need to apply it before hand...I think an hour b-4 if I remember correctly). It is an rx so you might need to ask your doctor about it. It great for kids, esp. if there is stress about the needle pokes.

 

I would also call the mom's of the kids that Lauren had the sleepover with...see if anybody at the sleepover got sick (fever, sore throat etc) with anything in the week after the sleepover.

 

Bronxmom...I agree trying antibiotics first is an idea. For us however, tics were the LAST thing to go away once we started Azith (250mg/day). Mood/OCD/anorexia improved in 10 days...but tics took about 6 weeks to dissipate! So, if Lauren's mom is going to try them, it may take a while to see a response if that is her only symptom. That is why I am so interested in cultures. (I think for others however, tics have gone away sooner???) The other problem is, if we don't have evidence of an infection and Lauren starts antibiotics, "experts" are likely to say it's coincidence if the tics go away in 4-6 weeks. A positive culture will give Lauren's mom more "evidence" towards a PANDAS diagnosis.

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You are NOT the worst mother! But I can probably talk for many here that we've all had those thoughts now and then. Your family not only has been thrown into the world of not knowing what is going on with your child and tryint to make her better, but doing it with a lot of attention and eyes on you. There's only so much one can take befroe they reach the point of exhaustion and just breaks down. It's okay if that happens. Everyone needs a good cry, but as long as you then come out of it with determination still intact.

 

At some point, try to find the time to write down your questions, and brainstorm anything you remember out of the ordinary about Lauren over the last few months. There may be some small clues there that you may not realize you have. Is she "neater" than usual? Is she going to the bathroom more? Does she seem to have a shorter fuse? Is it harder to calm her down when she's upset? Does she have moments of extreme hyperactivity? Has her eating habits changed? Is she more sensitive to touch or feels more overwhelmed faster?

 

I'm not trying to provide leading questions that may lead to a PANDAS diagnosis, but these are things many may overlook as symptoms. When it's just a couple of things, it easy for a parent to find an "excuse" for it happeneing. I can reason any odd behavior if it's not accompanied by a meltdown.

 

As for sedatives or any other meds, watch her carefully on them. Sometimes, PANDAS kids react different.

 

I know she doesn't have that diagnosis yet, but I want to thow all that stuff out there.

 

Good luck with you appt!

 

 

 

I am the worlds worst mother! Last night and today have been extremley hard emotionally for both Lauren & I. The cracks are starting to show. :(

 

I need to find more hours in each day..

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My daughter is 9 and saw the Today show segment that was posted here as I watched it. I may have posted this already, but she immediately said, "She has TICS!" when she saw the sneezing. She also asked if Lauren had a shoulder tic. I wondered why she asked this and she asked me to back up the tape. It does look like there may have been something going on with her left shoulder during the segment, but she was also (obviously) sneezing, so it was hard to tell if it was part of that or something else. She was also pulling a good bit at her shirt, which makes me wonder if she has sensory issues (again, please understand that we were really scrutinizing this at my house because my daughter was very interested since she feels quite alone at times...) You are right when you say that a few minutes of a show can't give us a full picture though, because any of those things in isolation could be misinterpreted... the shoulder could have been due to the sneeze, the pulling at clothes could have been that she was wearing a truly uncomfortable shirt or the mic she was wired with or the attention she knew was on her making her fidgety, etc etc.

 

But having said that, I think Pixie (my daughter) is a good observer and there may be some things that seem like a part of Lauren now that when you really stop and think may be quirks or tics that tie in with PANDAS.

 

In some ways you are lucky (I know it doesn't feel like it at the moment) that she presented with the sneezing/tic that she did. So many PANDAS kids present with such extreme and really scary symptoms like becoming suicidal or homicidal or anorexic... really life-threatening things that carry a lot of stigma. I know that doesn't help her stop sneezing or "lessen" it.. and I don't mean to. I'm just glad it wasn't something worse and that you were able to get attention and help as quickly as you have.

 

Please let us know how things are going. You are in our thoughts at my house!

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My daughter is 9 and saw the Today show segment that was posted here as I watched it. I may have posted this already, but she immediately said, "She has TICS!" when she saw the sneezing. She also asked if Lauren had a shoulder tic. I wondered why she asked this and she asked me to back up the tape. It does look like there may have been something going on with her left shoulder during the segment, but she was also (obviously) sneezing, so it was hard to tell if it was part of that or something else. She was also pulling a good bit at her shirt, which makes me wonder if she has sensory issues (again, please understand that we were really scrutinizing this at my house because my daughter was very interested since she feels quite alone at times...)

 

:( Pixie is so awesome!! Maybe you can convince her to be a MD that treats PANDAS kids when she grows up!

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I'm tired, so I will make this quick..Quick strep on Lauren was negative. Had them do TWO 72 hour cultures just to make sure. Cat scan and MRI were done without any sedation and she did great. EEG went well, she was even able to fall asleep at Noon so they could do an awake and sleep study.Blood work is complete and we spoke to Madeline Cunningham and she going to test her blood!

 

Lauren has no other tics up tp this point. She was figiting with her shirt because it "rides up" on her when she sits. She had an undershirt on when they ran the mic up her shirt and i think it got it discomboblled (I know that's not a word)! I did catch her "rapidy blinking" for a shrt period, tonight. Anyone else every experience this?

 

The tv show "The Doctors" are going to be doing a segment on Lauren's story but we are not going to participate in it.

 

Our local news, Wavy News 10, did a follow up story at her EEG and I made them promise to make reference to PANDAS and THEY DID!!!!

 

http://www.wavy.com/dpp/news/health_news/S...gets-sleep-test

 

Hopping a plane up to New Have in the morning. I will log on tomorrow and try to update!

 

YOU GUYS ARE THE BEST!!!!

 

 

 

 

 

My daughter is 9 and saw the Today show segment that was posted here as I watched it. I may have posted this already, but she immediately said, "She has TICS!" when she saw the sneezing. She also asked if Lauren had a shoulder tic. I wondered why she asked this and she asked me to back up the tape. It does look like there may have been something going on with her left shoulder during the segment, but she was also (obviously) sneezing, so it was hard to tell if it was part of that or something else. She was also pulling a good bit at her shirt, which makes me wonder if she has sensory issues (again, please understand that we were really scrutinizing this at my house because my daughter was very interested since she feels quite alone at times...)

 

:unsure: Pixie is so awesome!! Maybe you can convince her to be a MD that treats PANDAS kids when she grows up!

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Quick strep on Lauren was negative. Had them do TWO 72 hour cultures just to make sure.

Oh well. it was worth a shot. The exposure was over 3 weeks ago. Did any of the parents at the sleepover say that their kids got strep? That would be another good test.

 

EEG went well, she was even able to fall asleep at Noon so they could do an awake and sleep study.

Probably could use the sleep :unsure:

 

Blood work is complete and we spoke to Madeline Cunningham and she going to test her blood!

That's great. Just a reminder that it's still a research study and they're still working out what the results mean. We think they are finding some separation of kids with Sydenham Chorea, kids with PANDAS/OCD/tics and non-PANDAS OCD/tics.

 

Our local news, Wavy News 10, did a follow up story at her EEG and I made them promise to make reference to PANDAS and THEY DID!!!!

 

http://www.wavy.com/dpp/news/health_news/S...gets-sleep-test

Nice clip. Looks like she was pretty calm about the whole thing -- what a trooper.

 

Hopping a plane up to New Have in the morning. I will log on tomorrow and try to update!

Thank you for posting the updates.

 

You probably don't need more information about PANDAS... but... since you are being so great about getting the message out there... a couple things:

  • PANDAS defines a subgroup of kids who are diagnosed with OCD and/or tic (i.e., it defines some symptoms and isn't a bacteria or virus.).
  • It's thought to be caused by an antibody response to group A streptococcus (a pretty common bacteria)
  • The antibody is thought to interfere with neuronal signalling causing tics and OCD -- but the research is still really early here
  • It is thought to be very similar to Sydenham Chorea -- a symptoms of acute rheumatic fever
  • Luckily it doesn't seem to cause heart issues

There is lots of debate about PANDAS and it's possible that you'll receive a lot of mail that she's just got a vocal tic (i.e., that there isn't a cause). Most of us on this board don't accept that explanation because we observe really different behavior correlated with strep exposures. Whether it's a tic, PANDAS, TS or something else, we really hope your segments and your daughter's courage encourages more research here that helps both Lauren and other kids.

 

Regards,

 

Buster

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Re the eye-blinking: Yes, in fact, that was Pixie's first and only tic for about a year and a half. It started out sporadic and then became really intrusive. Doctors all gave us allergy meds and her teacher decided she was doing it for attention :wub: but finally we saw a ped neuro who asked a lot of questions about other tics she may have (we didn't realize it but she had had sniffing and throat clearing that were also tics) and we put it all together and she was diagnosed with Tourettes at that point. To get a dx of TS there has to be 2 different kinds of tics present for at least a year (vocal+motor.) There is a really high number of kids who have a least one tic during childhood who don't qualify for diagnosis of TS, and most grow out of it from what I have read. Even when we got the TS dx for Pixie, I was told that she would probably grow out of it.

 

(The reason we were led to PANDAS with her is that we started seeing some strange behaviors that also coincided with "unexplained" fevers.)

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Lauren'sMom, I am so glad that Dr. Cunningham agreed to run the test for you! Also, thanks for sharing this segment. I think you are doing an absolutely amazing job in your search to find help and answers for Lauren and you are helping countless others by spreading the word about PANDAS. Please keep us posted on how things go at your Yale appointment with Dr. Leckman.

 

Ellen

 

I'm tired, so I will make this quick..Quick strep on Lauren was negative. Had them do TWO 72 hour cultures just to make sure. Cat scan and MRI were done without any sedation and she did great. EEG went well, she was even able to fall asleep at Noon so they could do an awake and sleep study.Blood work is complete and we spoke to Madeline Cunningham and she going to test her blood!

 

Lauren has no other tics up tp this point. She was figiting with her shirt because it "rides up" on her when she sits. She had an undershirt on when they ran the mic up her shirt and i think it got it discomboblled (I know that's not a word)! I did catch her "rapidy blinking" for a shrt period, tonight. Anyone else every experience this?

 

The tv show "The Doctors" are going to be doing a segment on Lauren's story but we are not going to participate in it.

 

Our local news, Wavy News 10, did a follow up story at her EEG and I made them promise to make reference to PANDAS and THEY DID!!!!

 

http://www.wavy.com/dpp/news/health_news/S...gets-sleep-test

 

Hopping a plane up to New Have in the morning. I will log on tomorrow and try to update!

 

YOU GUYS ARE THE BEST!!!!

 

 

 

 

 

My daughter is 9 and saw the Today show segment that was posted here as I watched it. I may have posted this already, but she immediately said, "She has TICS!" when she saw the sneezing. She also asked if Lauren had a shoulder tic. I wondered why she asked this and she asked me to back up the tape. It does look like there may have been something going on with her left shoulder during the segment, but she was also (obviously) sneezing, so it was hard to tell if it was part of that or something else. She was also pulling a good bit at her shirt, which makes me wonder if she has sensory issues (again, please understand that we were really scrutinizing this at my house because my daughter was very interested since she feels quite alone at times...)

 

:wub: Pixie is so awesome!! Maybe you can convince her to be a MD that treats PANDAS kids when she grows up!

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