becjonz
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Posts posted by becjonz
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I had planned to continue to log in to vote for them. We couldn't have made it without them so we need to pay that back.
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I wish I could put it on television and listen to the play-by-play while I do housework or something.... You know...
...."It's PANDAS at number five and Colo nesco at 10... Pandas is gaining 37 votes in the last 5 minutes... PANDAS moves to number 5 and Tunes for Troops moves to 9... It's tunes for troops closing in on bethany berg...
Now THAT would be a great show to watch!
And then the camera pans to a very large group of kids with PANDAS all cheering and jumping up and down. The commentator then talks to a doctor over satellite connection and says "now I thought you said that PANDAS was a rare disorder..." and the doctor is left sputtering, having nothing to say.
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I keep trying to do other things but keep finding myself opening up the PANDAS Pepsi Refresh page in order to be sure we are still safe. Logically I may know that we aren't going to drop that much but I can't help checking. I'm starting to relate some of our kids with OCD.
Well, I wasn't checking until I read your post and now I can't help myself, LOL. I'm going to have to just go to bed and hope we hold strong for the next 2.5 or so hours.
Susan
Lol,I won't go to bed until it is official. It is forcing me to work on my preparing for my yardsale while I wait to see final results.
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I keep trying to do other things but keep finding myself opening up the PANDAS Pepsi Refresh page in order to be sure we are still safe. Logically I may know that we aren't going to drop that much but I can't help checking. I'm starting to relate some of our kids with OCD.
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I posted earlier in the week about the quick decision to take my DS' tonsils and adenoids out. We did go through with it this morning. The doctor felt on Monday that his throat looked real good but said prophylacticly it was a good decision as a way to reduce PANDAS exacerbations.
After surgery dr. said that while they had not appeared to be swollen prior to surgery they actually were rather large just oriented strangely so you couldn't tell. Also the whole back side of them were covered in pus pockets filled with infection. I'm so glad that we decided to go through with it.
He has also been lucky recovery wise so far- no nausea and generally not feeling too bad.
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The local newspaper in in my hometown wants to interview me about Pandas and my son. As far as I'm aware there is noone in NM diagnosed with PANDAS. I have written several post but no response. This is a great opportunity to educate others. I am so scared because I do not know how to prepare and I do not want to mess up any information.
I didn't do anythng to prepare other than send out press release that Beth Maloney had sent out. The reporter took our story but as far as medical info they really can't take that from us, they have to speak to a dr. for that so I would say just tell your DS' story. The reporter that interviewed us contacted the specialist my son sees and also contacted Beth Maloney since it the interview mentioned watching Mystery DIagnosis. It was a thorough article because of this. Maybe you could just have some links available to give him/her and your doctor's number.
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You mentioned your dh has bipolar. Could it be strep? Has he been tested? Wouldn't it be great if a dose of abx stopped the mood swings?
He has not been tested but has strep multiple times per year as well as is on antibiotics quite often. Hmmm...I'll have to think about this. I've wanted all of us to get tested....Also it doesn't seem as though as he is as sick now that he no longer lives with us and between the kids and myself being a teacher that could have been a factor. I guess this is one more reason to push for the family being tested.
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That's awesome. Not a strange measure...so many of us know it is the little things that only we would know but are milestones for our kids.
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I'm not but would be curious where in CT. I am in RI and I'd have to guess this is probably more western CT but if south eastern I'd be very interested.
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This stuff is good to hear, I have been told by dd9 docs. that they think there is co-morbidity (sp?) the ocd/ anxiety piece, and then another severe mood disorder. it is crushing to hear that and to have your thoughts go from pandas to a lifelong struggle.
This was my thought exactly...PANDAS with an expectation of out growing it to a lifelong sentence of bipolar. Hard thought to adjust to. Hopefully PANDAS will be the extent of it for our kids.
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I don't know how it works where you are but the tests are always done by a lab affiliated with our local hospital so I wait the week that it usually takes for the AntiDNAse B to come in and then go and fill out a records request at the medical information office of the hospital. As his parent they need to provide me with with a copy of his medical records. It costs me a quarter a sheet but is totally worth it to me to have all the lab work in my binder.
(it is a good thing too as I have not been called by either of his doctors with lab results any time that he has had them done.)
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I too was brought to tears upon reading your post. First of all, you are an amazing 15yo! I wish you had the support that you so deserve. As a parent I know I don't always do this PANDAS thing right. I still get frustrated some days with my DS' behavior towards his brother and I've lost my patience. I also really cringe when I think back to some of the things that I said or did before I ever knew it was PANDAS. I can't change any of that but I can try to remember and try harder in the future. Hopefully your mom will realize that she let her frustration or anxiety over money get the better of her today and that she said some thing she shouldn't have. I don't know anything about your situation but even gathering info from your post it sounds as though she does make some effort (going into your school to talk with teachers, researching about PANDAS, etc) I hope that she will get herself together and support you in the way you deserve to be. (((hugs!)))
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Thank you for all the feedback. I really needed that support tonight.
LLM- Your post is what makes this board so amazing. For some reason I am still surprised and awed by posts such as yours that show the wonderful caring and support this board provides. Yes, we are the ones that have the T&A on Friday, So you are right I need to focus there on getting him through that and moving on safely from that. I am going to call the ENT tomorrow regarding what abx he can safely take following the T&A.
Also my son's specialist who dx the PANDAS is a pretty no nonsense woman so I guess I will call her too. I had planned to anyway when school was over in order to get off all his meds since I feel we are attacking symptoms (tics, ADHD, anxiety) but not cause and I don't know what effect the psych meds could be having on him and his behavior.
I appreciate hearing aobut all your kids too and their stories because it gives me perspective. Having lived with a dh with bipolar for 13 years I guess there is always that fear in the back of my mind for my kids... long before PANDAS even so boy did the therapist know how to push my buttons. It is good to hear that really PANDAS can be mistaken and so I need to not let my own anxiety take hold.
Boy, this disorder sure keeps us parents on our toes.
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My son's therapist just called and I had sent her the charts that I was using on my son. I had been trying to make sense of the ups and downs that I was seeing. He would be totally hyper one day and then the next low. Well therapist just questioned if those real high days of activity are really PANDAS, instead she is going to call dr. to consider bipolar. My heart is crushed right now. My soon to be ex is bipolar and it has been so hard for him to successfully manage it. Right now it is making PANDAS look like a fabulous diagnosis, can't I just keep that one.
THis probably is incoherent I'm just so sick over her even mentioning this possibilty
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Thank you to everyone for your input. I think what had my head spinning last night was to have a.)a doctor who didn't need me to educate him on PANDAS and b.) recommended treatment to help him. Sad that I have come to expect so little from doctors and instead feel I need to go into battle with each new person.
But many of you have helped me see it a different way too--- DS has never been the sick kid in my house, my younger one? Geez he has had it all and used to spend from Oct. to April with one infection after another, snoring, always tired so for him I took him to the ENT seeking the tonsillectomy. DS with PANDAS has had none of that UNTIL this school year since the PANDAS. He is always sick with one thing or another and as someone else described I keep being told he "looks like an allergy kid" He has allergic shiners, has had sinus trouble, etc.
Younger (non-PANDAS) DS had a super easy recovery when he had his done a few years ago so I too am hoping that will hold true for his brother. I'm good with the decision today and if it will help reduce things even as we struggle with his inability to have abx I think it is worth it.
Am I going to call his ped. or specialist to discuss it with them? No, I honestly don't feel like the potential arguments so I'm making it easy on myself and will tell them when he is all done.
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BTW his tonsils and throat looked fine today. Also DS10 is doing lots of I told you so's since he has been asking for this surgery since he felt one would help reduce his chances of strep. lol Maybe someday he will grow up to do research about PANDAS.
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Went to allergist 2 weeks ago, he didn't believe in PANDAS
but he did say I should take son to ENT to take a look at his tonsills.Went to ENT today, he knew of PANDAS and said it is best for PANDAS kids to have tonsils and adenoids taken out to help reduce infection. AND he had time in his surgery schedule on Friday! I still feel hesitant about this. I just don't like the idea of doing unnecessary surgery. He kept saying that was wrong, it is prophylactic and I get that but prophylactic abx is one thing, surgery is another. Also as some may remember my son has had possible allergic reactions to multiple abx therefore he is undergoing allergy testing but we won't have an answer until at least the end of July. DS has not been allowed to be on abx since March!
I think I just need reassurance that it is worth it to do surgery. Is this really going to help him?
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Someone else mentioned using home strep tests as a kind of quick check when you know of exposure before calling the doctor. That of course sent me on a bit of a search. The original poster said she had entered her medical lic. # to order them but thought other sites might not require that and as it turned out Amazon has them! So I went ahead and ordered and figure they are good to keep on hand.
There are many options available but for me this seemed to be a good economical one to try. http://www.amazon.com/gp/product/B001DD04SQ/ref=oss_product
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I know! I was so excited
It is looking soooo hopeful -
I thought the episode was good. I think it accomplished the goal of bringing awareness about PANDAS but it did that in the framework of Mystery Diagnosis. This show's purpose is to showcase an individual's medical mystery and make it as dramatic as possible in about 20 minutes worth of time. Yes, they do also bring awareness to little known medical conditions but it is not the primary focus to educate on all aspects of the medical disorders or diseases.
I'm happy that this episode has and will continue to act as a catalyst to bring awareness to the uninformed and understanding to our families and friends even if it was not a one size fit all situation.
Looking at the big picture...guys, there was finally a nationally televised show about PANDAS! We spend our lives immersed in this...reading, meeting up on this board, educating doctors
, explaining to and negotiating with schools and trying to weather the storms of exacerbations but the rest of the country is ignorant to all this. Well, maybe tonight there are that many more people who are now aware that PANDAS is not just a bear. -
This is on Discovery Health not just regular Discovery so that may be impacting everyone's ability to find it on their tv listing.
I do plan on having DS10 watch it. If I said no he would probably be much more upset. He has told everyone to watch, he has been eager to see it and set the DVR himself. I read Saving Sammy and while I'd never allow him to read that because I wouldn't want him to feel anxious or worried about the impact on the family, he did read the opening letter to the doctor that chronicles Sammy's behavior. He has a good handle on the idea that Sammy had a severe case versus his more mild PANDAS. THankfully with the things that make him anxious getting worse from PANDAS is something he has been spared from.
If it was my younger son with PANDAS I don't think I'd ever let him see it. He is a very different kid and by the next day he would have all the symptoms of Sammy or at least believe he did. I think it really depends kid to kid and their personality.
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I'm having to copy and paste the article rather than link it since my newspaper only has it online in the pay version.
This is taken from The Westerly Sun in RI. My son is so thrilled! They put the article on the front page, above the fold!
Family pushes for awareness of strep-induced disorder
■ Discovery Health to feature a special program on PANDAS.
By NANCY BURNS-FUSARO
Sun Staff Writer
A S A BRADFORD SCHOOL Special
education teacher, Rebecca Jones is used to observing the behaviors of young people. So it was no surprise that she was able to identify symptoms of mild Attention Deficit Disorder in her son, Matthew. It was a surprise however, when Matthew’s behavior took a turn for the worse — a sudden and dramatic turn. Following a bout with strep throat says Jones, her son’s behavior grew strange and extreme. “He was totally freaked out,” she recalls. He started tapping his feet, playing with his hair obsessively and he began experiencing fears and anxieties, says Jones — “unrealistic fears and anxieties.” For example, she says, there was Matthew’s concern for the family dog. “He was so afraid that the dog would get loose, run away and get run over that he would grab him and hold on to him,” Jones said. “And he wouldn’t let go.”
Assuming her son’s behavior was due to the stress of moving to a new school coupled with his parents’ impending divorce, Jones brought Matthew to a social worker/ counselor for an evaluation. The counselor suggested Matthew first visit Dr. Louise Kiessling, MD, FAAP at Pawtucket’s Memorial Hospital, and be tested for something that sounds more zoological than psychological — pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections, or PANDAS. “She just wanted to rule it out before we treated the symptoms as behavioral,” says Jones who was unfamiliar with the disorder.
Kiessling is a developmental/ behavioral pediatrician and Professor Emerita of Pediatrics and Family Medicine at the Alpert Medical School of Brown University. She is founder/retired director of the Neurodevelopmental Center at Memorial Hospital of Rhode Island. She first wrote about PANDAS in 1989, when she observed an increase in reports of the number of children with tics following an outbreak of a strep infection. Also in the 1980s, Susan Swedo, a pediatrician at the National Institute of Mental Health, came across several cases of children who seemed to have developed tics and behaviors resembling OCD, such as excessive hand washing, overnight.
Swedo noticed that the children in all the cases had recently recovered from strep throat. The traditional strep symptoms were gone, but when she did laboratory tests, Swedo found the children’s blood still contained high levels of strep antibodies. Perhaps most compelling, the symptoms seemed to abate after renewed treatment with antibiotics. Swedo became convinced that the symptoms were the result of an overactive immune response to strep bacteria. She suggested a new diagnosis called “pediatric autoimmune neuropsychiatric disorders associated with strep.” When Matthew tested positive for the disorder, a whole new world opened for the Joneses. Soon they were connected with families around the country dealing with PANDAS, including the Maloney family in Maine.
Beth Maloney, a lawyer in Kennebunkport, has become a sort of unofficial spokeswoman for PAN-DAS. Her recent book, “Saving Sammy, Curing the Boy who Caught OCD,” tells how she discovered that PANDAS was at the root of her son Sam’s extreme and erratic behavior. Once Sam was diagnosed and began taking antibiotics, she writes, his behavior improved remarkably. Her discovery, she says, took years to figure out but has a happy ending. After missing his entire sixth and seventh grade due to bizarre behaviors associated with PANDAS, Sam Maloney is now a dean’s list student at Carnegie Mellon University. The Maloneys will be the subject of a Discovery Health channel premiere of, “Mystery Diagnosis,” airing Monday night at 10 p.m. The program will be repeated Tuesday at 2 p.m., Saturday at 5 p.m. and 9 p.m., and again on Sunday, June 20 at 1 p.m.
Some researchers, including doctors at the National Institutes of Health, believe that natural antibodies produced by the body to fight an undiagnosed strep infection can attack the brain of some patients and trigger a sudden onset of behavioral disorders, such as OCD and Tourette’s syndrome. The disorder is sometimes treated with simple antibiotics.
There are also neurological researchers who argue there is not enough hard evidence to prove that PANDAS exists at all. Even among the many researchers and doctors who are convinced that the syndrome is real, there is still disagreement about whether antibiotic treatment, after a certain point, does any good.
Keissling is cautious when discussing PAN-DAS and is concerned that some parents of children with OCD or other behavioral issues might think that by treating the child with antibiotics, the symptoms will magically disappear. There is an abundance of misinformation she says, especially on the Internet. “It’s complicated,” says Keissling. “It’s not simple and it’s controversial to some degree.”
“I don’t see this as complicated at all,” counters Maloney. Because she doesn’t have a medical degree, she says, she has never felt constrained, never encumbered. Her goal was singular, she says — to find a cure for her son. “I was not bound by traditional medical theories or reasoning,” she explains. “I had everything to gain and nothing to lose. I went for it.”
More and more people are finding that seemingly normal kids can change almost overnight after being exposed to strep, she says. “They have noticed how different their child acts after a sore throat. They seem hyperactive, moody and often keep blinking their eyes,” Maloney says. “The child becomes very particular about the way they do certain things. Their teachers say they are not paying attention in class, and they’re having trouble reading students’ writing.” Of the nearly 8,000 emails she has received from parents, Maloney says the vast majority have discovered that strep is at the root of their children’s problems. A few have been devastated to learn that there is no connection, she notes.
Rebecca and Matthew Jones are among those who are grateful to have learned about PANDAS and hope to raise awareness of the disorder that has so effected their lives. They are encouraging teachers, parents and doctors to watch Monday’s program, not just to understand what they’ve been experiencing since Matthew’s PANDAS diagnosis, but to alert people to the possible connection between a bout with strep and strange behavior.
“We just want people to have an awareness,” says Jones. “And at least to know enough to ask your doctor.”
“It’s not commonly understood,” she adds, “and it can be very, very frustrating.”
Matthew, a fourth grader at Westerly’s Dunn’s Corners Elementary School, is tall, thin and friendly. He is not at all shy about sharing his experience with PANDAS and is comfortable demonstrating how he used to pretend his fingers were scissors and how he would obsessively chop at clumps of his hair.
Although his symptoms have abated, Matthew does have recurrences, often during school. To help his classmates and teachers understand PANDAS, Matthew made a Power Point presentation explaining the symptoms of the disorder. “His teachers have been wonderful,” says Rebecca, “and his classmates have been really supportive.”
And protective. When an adult visitor to the classroom suggested Matthew stop tapping his feet, his fellow students came to his aid. “He can’t,” they told the visitor in unison.
Reached by telephone Saturday morning from her home in Maine, Maloney called Matthew “incredibly brave.” “It takes a certain kind of courage to say, ‘This is what’s going on with me,’ at that age,” she says.
Maloney appeared with her son Sam on NBC’s Today Show last fall to discuss PANDAS, spoke recently at an autism convention in Chicago, and plans to speak to the International OCD Foundation in Washington, D.C. next month. “We’ve opened a lot of doors,” says Maloney, who has Facebook pages for herself and her book.
“We’ve caused people to look at mental health differently, to ask, ‘Is this a mental health issue or was it caused by an infection?’” For more information about PANDAS, visit http://intramural.nimh.ni h.gov/pdn/web.htm, www.pandasfoundation.o rg or savingsammy.net.
nbfusaro@thewesterlysun. com
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I was interviewed this evening re: PANDAS by a local reporter. I had used the sample press release that Beth Maloney sent out and sent it to a soft hearted local reporter. SHe called tonight and DS will be having his picture taken tomorrow. He has been all for spreading the word to others and so as soon as I told him who had just called he said "I love you" No matter what sh&t my ex gives me for doing this will be worth it to make ds happy.
This comes after an appt. earlier today with a doctor who basically told us he doesn't believe PANDAS exists. I was well behaved- smiled and just asked for the allergy tests to prove ds can have abx again.
Where did you get the press release?
I got it from a mailing that Beth Maloney sent out. A mom in Texas that works in media made it up as a way for those of us who don't know what they are doing to have a leg up when contacting the media. It worked because I had tried last month on my own in order to help with the Pepsi Refresh voting and got no repsonse from the same newspaper.
If you PM me your email I can send it to you when I get home this afternoon.
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I was interviewed this evening re: PANDAS by a local reporter. I had used the sample press release that Beth Maloney sent out and sent it to a soft hearted local reporter. SHe called tonight and DS will be having his picture taken tomorrow. He has been all for spreading the word to others and so as soon as I told him who had just called he said "I love you"
No matter what sh&t my ex gives me for doing this will be worth it to make ds happy. This comes after an appt. earlier today with a doctor who basically told us he doesn't believe PANDAS exists. I was well behaved- smiled and just asked for the allergy tests to prove ds can have abx again.
but he did say I should take son to ENT to take a look at his tonsills.
It is looking soooo hopeful
No matter what sh&t my ex gives me for doing this will be worth it to make ds happy. 
No matter what sh&t my ex gives me for doing this will be worth it to make ds happy.
PANDAS doctors in Boston area, NH, MA, ME or RI
in PANS / PANDAS (Lyme included)
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I wrote the above. I was going to respond about Dr. Kiessling, whom we are still impressed with but appreciate that someone pasted this here. I will say that my son has only been treated with abx and there has been no discussion of IVIG. This is even with a possible allergy to penicillin and zythromax which has prevented him being treated with abx for the past several months. Instead he has had increased psych meds (which I'm weaning him off of now that school is out) and we are seeing an allergist to resolve the allergy question. Thankfully my ds' PANDAS is at a manageable level, not as intense as some I've seen on here so I have not pushed the IVIG question. Sorry I can't answer exactly, although if I had to guess I'd say she probably doesn't lean that way.