DebC
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Another mom and I are organizing a Dallas area support group for PANDAS. We invite you to join us for the first Dallas PANDAS Support Group meeting on Monday, May 24th at 7:00 p.m. It will be held at:
Water's Edge
5475 Coit Road
Frisco, TX 75034
Please shoot me a message if you have any questions! We would like to target the 4th Monday of each month for this meeting!
If you plan to attend, please send me a message. We are trying to determine how many parents will attend. Thanks!
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I think there's a very special place in Heaven reserved for PANDAS moms. It's completely stress-free, where you have nobody to worry about and nobody to second-guess you and nobody to blame your child's traumatic illness on your parenting style.
This special place is also the entrance gate for doubting doctors who desperately want to get in. And you, the PANDAS moms, get to smile at them with condescending smiles and say, "I don't believe in death, it's just a psychological problem. If you just believed you were alive, you'd be fine. Until you can bring me the results of five double-blind, peer-reviewed studies proving that you're dead, I'm afraid we can't help you and you're stuck in Hades."
Payback is heck, ain't it?!?
That quote totally made my day!!! I laughed out loud and will be sharing it with my family! Happy Mother's Day to all you moms out there! Have fun and enjoy these special gifts we've been given -- our beautiful children and our supportive husbands!
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I called the station to ask about getting a copy. They said that they subcontract that out to VMS (Video Monitoring Services). I have contacted them about getting a copy on DVD. I'm not sure if I'd be able to upload from that or not... I'm waiting to hear back from them about getting this digital copy. Their voice mail said it could take 48 hours for a return call.
Thanks, everyone, for all of your positive responses. I am totally blown away and was in tears reading them all this morning.
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Everyone!!! We are making a difference. Here is a message on a local area board to which I post awareness information:
"Deb, your WFAA story has certainly caught the attention of many parents who had not heard of PANDAS previously. I work at a behavioral center for children and we have had two parents call in today with concerns after seeing your story. Whether or not their children are affected, I think it is great that you are raising awareness! " This is just 2 I've been told about. I would guess that area pediatricians are all fielding calls today!
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Thank you very much for spreading the word !
I showed the segment to DS9 (PANDAS) a few minutes ago.
Had to promise him to let you know, that your daughter is very, very beautyfull ;-)
I (and my son) wish you all all the best !
PANDAS Denmark -- Thanks!!! I will pass your son's comment on to my daughter. I'm sure she will be flattered!
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excellent.. wot a great segment!!
Thanks, everyone!!!
I have been working for public awareness for the last 16 months since Lillian's diagnosis. I e-mailed the health reporter on Tuesday asking if they could just do a quick public service announcement regarding the Project PANDAS Pepsi Refresh vote. Within 10 minutes of sending my e-mail, the health reporter e-mailed me back asking if we'd participate in a story. I was stunned and called my husband at work to see if he was okay with it. I think I got maybe 3 words out before I broke down sobbing (everything just came rushing back on how we've been working for awareness and I was overwhelmed -- I never thought we'd be at this point 16 months ago when finding information on this was difficult at best). He thought we'd been in a terrible accident before Lillian spoke up from the backseat and said, "Mom, are you really crying about this?" I finally got the words out and my husband was all for it. Our daughter doesn't want other children to go undiagnosed so she was all for it. All her friends, their families, and our school know what has been going on, so this wouldn't be a big revelation to anyone. We agreed to do the story and they came out yesterday (5/6) and shot it. It was on the ABC WFAA Dallas 10:00 news last night and was touted as a lead story at the intro to the news. It should also run today again at noon and may run on Saturday morning. I was nervous as to whether they would present the story the way I wanted it to go and I felt they did a really good job in educating the general public. It will also air in the Houston, San Antonio, and Austin markets in the next several days to week -- a lot of people reached. They also included a link to the Pepsi Refresh Project PANDAS site along with the web story. I can't say enough nice things about Janet St. James, the health reporter or her camera man. They were both phenomenal as doing something like this was way out of my comfort zone. They put us totally at ease. Lillian and I said a quick prayer for the right words and peace about 15 minutes before the reporter arrived and we were good go to (I should add that after I finished praying aloud, Lillian piped up and added, "And dear God, please help momma not to cry." I didn't and the rest is history. It's amazing how they can take a 45 minute interview and turn it into a 90 second segment!
Thanks so much for your kind words!
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I am wondering if any one who's child has done the 5 day/40 mg prednisone burst had seen their child have withdrawl symtpoms from it? My son did the burst from 4-22 to 4-26. He reported feeling dizzy while he was on it. Was phycially better from 4-27 top 5-2. On Sunday night, about 20 minutes after going to bed he came downstairs saying he felt nauseous and dizzy. He was clammy and had lost color. He did not throw up, but rather thought he might be hungry. He ate 3 peices of bread and felt well enough to sleep. I chalked it up to too many nighttime meds on an empty stomach. Monday he called home from school reporting the same feeling. Again - too many morning meds - I'm thinking the Ibuprofen has finally gotten to his stomach so I discontinue that. He comes home saying he still doesn't feel well, but it got a bit better after lunch. I take his bood prssure and its kind of low (94/54 his lowest reading). He mows the lawn but then decides not to go to hockey practice becaue he feels crappy in general. yesterday I hear no complaints, but find out he took Ibuprofen at school for headache and asks for more at bedtime (meanwhile he played on the trampoline for several hours with the neighbors in between). Today he calls home again saying he's dizzy,weak and has a headache. I am bringing him into the pediatrician this afternoon. This might be a physiclogical stress reaction to school or somethng else. But I also googled prednisone withdrawl and it mentions his symptoms. So I'm wondering if anyone else has had this experience after the 5 day burst? Is it weird that it would start 5-6 days after discontinuation? We also discontinued the Biaxin on 4-26 to give his stomach a break. Thoughts???
I am just finishing a round of prednisone for serum sickness. I took 40 mg. for 3 days, 30 mg. for 2 days, 20 mg. for 2 days, and 10 mg. for 2 days. My last tablet was Saturday night around 11:00 p.m. Since then, I have been battling a wicked headache. Ibuprofen helps a bit, but it is still there lurking. I have noticed slightly shaky hands. I'm not sure if this from prednisone or recovering from serum sickness.
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Hi everyone...it's been a while...but I have a quick question...
Alex's tics never really went away completely after gettting strep in September (he was completely symptom free all summer)....he is on 125mg Azith daily...
two weeks ago he came to me as said he started 'counting' again...his steps and movements.....this broke my heart as he hasn't "counted" since June 09...
off to the doctor last Wednesday and rapid and 48 hr cultures of strep A & B negative...(which puts me back on the 'crazy mother' train again...)
his seasonal allergies are full swing being controlled by Zyrtec
The teacher just told me today that the child who sits next to him was out Tuesday with strep...
So, my question...can simple exposure trigger an exaserbation coupled by a hightened immune response to the allergies?
Most definitely! We see an upswing in behavior even with exposure in our daughter's classroom. We saw an upswing in behaviors January through March this year even while on a low dose prophylactic antibiotic. Behaviors have nearly diminished now that strep season at our school seems to be ending. She is currently not on an antibiotic and we are praying that she remains healthy!
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Welcome.
I am brainstorming here so bear with me. At first, I read what you wrote and it looks like he's allergeric to a lot of meds. But then I also step and wonder if the hives is a form of herxing. 2 of my kids get hives when their body is trying to rid itself of an infection. Does anyone know if hives could be a form of herxing?
Also, for some, hives could be their symptoms of strep.
How are his PANDAS symptoms right now? Do they believe he is strep free?
One other thought on the antibiotic allergy. I just developed serum sickness myself last week from a reaction to Augmentin. My doctor would not switch me to another antibiotic until the reaction was complete and I was symptom free from the reaction because while my system was compromised by this Augmentin reaction, it might automatically respond to any other antibiotic introduced because the autoimmune system was now hypersensitive and totally out of whack. You may want to ask you doctor if this is what occurred when the Zithromax was introduced. I was on Augmentin and she said this could occur if they immediately tried zithromax.
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One other thing to watch for with antibiotics is serum sickness. Our children have not experienced this, but I am in the midst of it right now thanks to an an autoimmune response to augmentin. Two days into the meds, my joints felt achy and luckily I called my allergist since I'm allergic to Cephalosporin. They recommended that I discontinue and I did. Six days after discontinuing the meds, serum sickness set in. For me it consists of very swollen joints (basically like arthritis, knees twice normal size and painful), rash everywhere (not itchy, just looks bad), and fever over 100. I'm currently on prednisone to counteract the reaction. My grandmother was allergic to penicillan so I probably inherited this from her. My biggest fear is that our PANDAS daughter will end up with this as well. I'm praying that she won't. She's been off of antibiotics since the end of March and I'm hoping she can remain off for awhile.
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Good job making a difference! Keep up the good work at advocating for our kids.We went to our pediatrician today for a follow up phone conference with our Dr. and Dr. Nicoliades. We will continue another month or two with Augmentin XR. Our ds10 is doing well (as of now). The icing on the cake is...since our Dr. has been researching this along with us, he has been sharing the information with his other 2 Dr. partners. Now, today he shared with us that because of our story, one of his partners believes that she has a patient with PANDAS. And...our son has been seeing a psycologist for CBT who had never heard of this and is now researching all of the links that I have shared...he believes that this could be the answer to one of his other patients that he has just begun to see. So there you have it...possibly 2 children that may be saved from the road of psychotropic meds. and hospitals for who knows how many years!!! Prayer for all!!!
Amazing! I am always blown away by how many people we are able to reach and educate. Our ENT is now seeing 8 to 9 PANDAS patients after the information I have shared with him. The other week our daughter had an ear infection and we went in to our general pediatrician. While we were there, he had a med student trailing him. I went out to my car and brought a PANDAS Foundation card in for her. There was definitely a reason for that ear infection and it was so that I could get that card to a med student who can share it with her peers.
Keep up the hard work and educating! This movement is steadily increasing!
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Brandy....good to hear! Where are you from?
I am from Plano, Texas ( outside of Plano) We just saw my friend who is also my Chiropractor- she is an MD/DC- amazing woman. When I told her about PANDAS- she did research on her own ( love her!) and she agrees 100% that my DS has PANDAS!!! The confirmation is great- It sounds as if I am lucky since it was my Pediatrician's office that first suggested it( another Doctor in the practice thinks it is "likely" too) and this other Dr agrees. Neither will treat it but one will write me a note for the school-so that is a HUGE step forward. My son is not Exacerbated at this time so it is not an issue but next time he is- OUT of scool he goes and no more battles!!!
Where are you from?
Brandy
Brandy --
We are in Plano too!!!
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Since I am a week into this my head is SWIRLING with information, fear and hope.....what does my future look like with my DS?? What does his future look like??? He has always been very active- sports etc.... will he be able to play sports( baseball is his favorite and best) or is that just too much of a risk? Are their kids who attend regular schools or are most home schooled? If he attends regular school do I need a 504plan(I think that is what it is called)? He is a young second grader and I am thinking about having him repeat the grade since we don't know what the next year will bring medical treatment wise? Do any kids live "normal" lives??? If so how long did it take to get your PANDAS under control???
Thanks!!
Brandy
There is definitely hope! Our daughter was diagnosed a year ago this past January after waking up consumed with OCD fears. She was in the second grade as well. We kept her in school the whole time and had a plan worked out with the school counselors to keep her there. She had a free pass to see them any time she needed help with her fears during the day. At the beginning, that meant she might be in their offices 4 times in a day or more. Dropping her off each morning was a struggle as she would cry to be allowed to stay at home where I could ease her fears, however, we wanted to maintain her schedule as normal and have her keep up with her studies and remain in the same class with her friends. I would hold it together until she was out of the car and then would sob all the way home, but deep down inside, I knew I was doing what was right for her. We treated with antibiotics and between that and time, the basal ganglia swelling gradually decreased. Her visits to the school counselors gradually declined until she didn't need to see them anymore. We also began CBT (cognitive behavioral therapy) with a wonderful child psychologist. This gave our daughter the tools to deal with her fears. By April, she was doing quite well. At her worst, she had extreme separation anxiety along with the OCD. I went to every activity with her and she continued to function. I would sit right outside the door of her dance class so that if she needed encouragement, she could look out and see me smile and urge her on. Granted, she wasn't herself, but it kept her among her friends who were very supportive and loving. By the end of April, she didn't need this encouragement anymore. During the summer, when there was little exposure to illness, she was her normal self and I saw no symptoms. She entered third grade in the fall and in October had a mild exacerbation after flu mist and strep exposure from her brother (both in a week and a half time frame). This exacerbation was obsessive straightening, so was more manageable than the fears that consumed her last January. Any time she was exposed to strep, I called her ENT who would put her on Augmentin to protect her from catching it. Her teacher is great about calling me anytime there is strep in her classroom or any of the third grade rooms. Any time I saw her behaviors increase, I would call our ENT and he would again prescribe Augmentin. I find that in our daughter's case, she has been able to lead a very "normal" life. She has a few more hurdles to overcome than the average child, but is happy and has a great attitude. As for me, I worry quite a bit about the next episode and if/when it will occur. However, I continue to research and keep up on the latest information so that if/when it occurs, I will know where to turn and how to proceed. Our daughter lives a very happy, fulfilling life! She played soccer in the fall, takes 3 dance classes a week (ballet & jazz), danced in The Nutcracker, attends Brownies, and her church Tweener group. It's hard to let her out there among all the germs, but in our case, it is what is best for her. She loves her "normal" life and routine. There is still much happiness with a PANDAS child, it is just peppered with more worries and effort.
Hang in there! I know how overwhelming everything is at the early stages of diagnosis when you are thrashing about and looking for answers. We are all here to support you and cheer you along this path.
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WOW! I have already learned so much just by reading as many posts as possible....Yesterday I hear the words PANDAS syndrome for the first time... I have been reading ever since... I am part scared, part relieved and part exhausted.
My son is 7 almost 8. He has had behavior issues we have dealt with off and on his whole life. Every Spring is gets bad- REALLY BAD. Last weekend he knocked over his chest of drawers, thinks nothing of trying to bite or scratch me, is defiant and disrespectful. It is as if he is a different kid- not that he does not have disrespectful tendencies to start with but it has gotten really bad. He had to spend a whole day locked in his room for his unwillingness to function appropriately- I almost took him to the ER because I could not get him calmed down. He has often said he can't control it- he also has said there are these cards in his head that tell him to do these things.
We had strep about a month-6 weeks ago- started with stomach pain as always. Had a course of Amoxicillan and then got a stomach bug after(threw up all night)- followed up with stomach pain again- negative strep test. Went back to GI Dr and figured h pylori must be back ( had an endoscopy in the Fall and tested positive for h pylori- thought stomach problems would be over) been having stomach issues after last round of strep went back to GI b/c negative strep test and started h pylori meds again. Had been on Amoxicillan for 8 days b/c of h pylori treatment ( which I realize now was not a re-occurance of h pylori but of strep) and and we tested positive for strep yesterday- now we are on Omnicef. The Doctor suggest PANDAS due to his behavior shifts with strep. I know for a fact he has always had a deterioration in behavior when he has strep.
He does not have any tics- but has had some in his life- lip licking, excessive blinking but none that I know of at his time. WE have night wetting, sometimes day wetting, compulsions, a greater fear of the dark than usual- must have doors closed when upstairs- someone must turn on lights, defiance ( SERIOUS defiance), emotional lability- rages, moodiness etc... I have always thought he had some anxiety issues. He is the kid that can't keep his hands to himself and when he is in a bad space will just hurt people.
We live in Texas and have an appt with Dr mark Mazade April 21st...Any tips what to do until then?????
Brandy
Welcome! Hope all goes well with your appointment on the 21st! We are in TX as well. If you need a neurologist, Dr. Majeed in Dallas treated our daughter and we saw Dr. Debra Phalen, a psychologist as well. Dr. Phalen was phenomenal and used CBT to rid our daughter of some of her OCD thoughts.
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A friend was telling me about electrodermal screening. Has anyone tried this for a PANDAS child?
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Our daughter started cleaning one day in first grade and we thought it was a phase. This gradually waned over several months. However, she had just had strep when the cleaning began. A year ago in January, she went to bed a "normal" child with strep and just starting an antibiotic and literally woke the next morning a changed child. Therefore, I chose sudden as the symptoms literally occurred overnight for her.
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This is what I meant by the allusion to Enrico Fermi
http://en.wikipedia.org/wiki/Fermi_paradox
which is very interesting in its own right!
I love reading your posts "real" Dr. T. Thanks for sharing your insight. Our ENT quizzes me every time we are in for what I feel is a root cause and I continue to tell him genetics combined with an environmental trigger. In our daughter's case, possibly the varicella vaccine as she had a chicken pox blister with the first injection and a full blown case of shingles with the booster when she was 7. My side of the family has rheumatoid arthritis, polychondritis, Sjogren's syndrome, and Behcet's syndrome. I think researchers and doctors such as yourself are getting closer to determining which factors play into this illness.
Our ENT is very interested in learning more as we were his initial family with PANDAS and he mentioned the last time we were in that he is seeing 8 to 9 other patients that he suspects are PANDAS cases as well. I passed this web site and your name along to him for reference points.
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I'm always in the school of thought that every child is different.
When she received the flu mist, your daughter also a had a double whammy on her immune system by being exposed to strep in the household then strep outbreaks at school. Her immune system hasn't had a chance to calm down. When did she get the flu mist?
Also, you can try ERP type therapies in the home. Perhaps she has had that OCD ritual for so long that it is residual. Maybe she can overcome it.
Vickie -- she had flu mist in October and within days was cleaning again. About 2 weeks after flu mist, our 5 year old contracted strep and h1n1. Her symptoms continued but were very minor. Since then, there has been constant strep exposure at school so she's been treated with augmentin in prophylactic doses to prevent infection. At this point, her cleaning is much less impulsive than 3 months ago so she is doing well. Last summer when there was very little exposure to illness, she showed no residual signs of her OCD at all.
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Thanks everyone for your well thought out replies. It's nice to know that I'm not the only one struggling with these issues.
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Our daughter was diagnosed with PANDAS 14 months ago. Her symptoms pretty much disappeared over 3 months post diagnosis. She had a slight increase in obsessive cleaning after receiving Flumist this fall (we will not administer that or a flu vaccine in the future). She still cleans a bit, but behavior is manageable. She is happy, healthy, well adjusted in school, enjoys her friends, and is making A's. We feel like we have her back. Our ENT prescribes a precautionary round of Augmentin when strep flares at her school and so far this has kept her strep free this year. I listened to the Chicago radio story on PANDAS and felt my stomach drop when Dr. K stated that IVIG needed to be administered before the onset of puberty which occurs at the approximate age of 10. Our daughter is currently 9 1/2. We don't feel that her symptoms warrant IVIG at this point. However, after hearing Dr. K's comment I am beginning to second guess our choice. There are so many different schools of thought out there and I'm not sure which is correct. Any thoughts on this?
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Checked him out without too many problems, surprisingly ( not) they didn't give me an evaluation form this time to fill out hhmmm. But upon the discharge instructions, which of course are not done by the dr and I still have not spoken with him, they advised meds penicillin and clonidine. I asked her if they had contacted Dr K about the augmentin and she said she wasn't sure. I went back and forth with her about it for a long time and then said well, can you go check with someone so I don't have his regular doc do something that he has already done because you wouldn't go check. She reluctantly did this, came back and said he is picking up the phone right now to call. She told my son to put his coat on and then went to let us out. I said, well how am I supp to know what he decided on this? She said we will prob give you a call.
I was very surprised when 20 min later they did call and did order the augmentin 875- twice a day in to the pharmacy. I guess the persistance paid off!
The whole thing was very weird though, and I can def say he will never be going back there!! Have not had a lot of downtime since we got home, he has been pretty high maintenance, and just very high anxiety- extreme silly and two year old type behavior going on but VERY exaggerated. Don't really know how to explain it, but suppose its just been pent up emotion and its coming out- which is fine I will def take that over the selfharm/ violent stuff!
I am really curious to see how the augmentin works for him! and have been giving him ibuprofen also
Thank you again to everyone for all the support through this! I may not have answered everyone back like I would have liked to but it all meant a lot and really got us through!
7UpMom -- I wish I could just reach out and give you a big hug! You are doing such a great job with your son and someday he will realize exactly how wonderful you are!
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Our son has had his adenoids removed twice (he is our nonPANDAS child). When he was on an antibiotic, the swelling would go down a bit but not completely. He pretty much had sleep apnea and sinus infections all the time from the swelling regardless of the presence of an antibiotic. Removal was the only thing that helped him. Unfortunately, his adenoids grew back and he had to have them removed a second time. He had his tonsils removed a bit over a year ago and they checked for adenoid regrowth then and nothing had come back, so we're hoping that we're done with them.
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There are no PANDAS doctors in our area. Therefore, in October, I wrote a long letter with our story for both our pediatrician and ENT documenting Lillian's PANDAS journey along with research. I asked them in my letter if they could be the doctor in our area who could possibly treat PANDAS. I didn't hear from either of them, however, when we were at a routine ENT visit in January, our ENT started a fairly in depth conversation about PANDAS and agreed that we needed to prevent Lillian from contracting strep. He told me to call during outbreaks and that he would put her on Augmentin during those times. A week later, strep was rampant in her classroom. I placed a call to our ENT and he prescribed Augmentin for 10 days as promised. When the outbreak continued, he extended the prescription for another 10 days and gave us permission for one refill. I am holding on to that refill for the next outbreak. It's nice to know that it is there when we need it. So far, this has worked and she is symptom free. She's in third grade and they are learning so much that it's hard to pull her from the classroom.
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So happy for you! Isn't it amazing how God puts people in our path at just the right time and in just the right way. All it takes is for one person with compassion to hear your story. I just experienced this when I sent 4 page letters to our pediatrician and ENT regarding PANDAS. The letter made all the difference and our ENT is on now board. When there was a strep out break at our 9 year old's school, he agreed to put her on Augmentin for 10 days and then ordered a refill of an additional 10 days when the outbreak continued. He even put one additional refill on the prescription so that I can use it at the next outbreak. Keep fighting, mom! You're doing a great job!
THE new Pepsi Thread
in PANS / PANDAS (Lyme included)
Posted · Edited by DebC
I'm currently out there voting. Erika Kate and Missing Patient are in the 50k category. Should we be voting for these?