ChrissyD reacted to kimballot in Harvey Singers new article
Singer is colleagues with Dr. Kurlan - who was from Rochester, NY but then moved to Hopkins. Kurlin headed up the large, longitudinal study of kids with Tourette that separated out kids who seemed to have exacerbations of tics and OCD when they were sick and called them "PANDAS" and then compared them to the "non-PANDAS" tourette kids. The abstract of his study basically says there was no difference between the groups, and that is as far as most pediatricians or other folks get when they "read" the study.
They published the originial study in a high-profile journal and that study really was a notch in their professional belts. They became famous and basically told the medical community that just because a child develops tics and had a recent bout of strep does not mean that the two are related. Kids fall who fall out of trees and break their arms probably had Pizza recently, but it does not mean that pizza makes you fall out of trees (yes - I have heard that quote from more than one doctor).
This article by Singer is the bloodwork follow-up to that Kurlan study (just like Cunningham's 2006 article was the follow-up to Swedo's 1998 paper).
The thing they don't tell you in the abstract of the original article or in this artical though ... is that
1. The kids in that study may not have even had PANDAS
2. The kids in that study were tested for strep every month and their pediatricians were given permission to put them on antibiotics if they tested positive for strep (heck, most of our kids would not have exacerbations EVER if they had monthly tests and treatment!)
3. The kids in that study stayed on their medications designed to decrease tics and decrease OCD... then the authors reported that they did not have an increase in tics and OCD when they had strep (which was probably quickly treated with antibiotics anyway - see #2 above).
All in all - a whole lot is at stake as far as the reputations of the researchers here and, unfortunately, our children are caught in the crossfire.
ChrissyD reacted to EAMom in Harvey Singers new article
Yes, this is the exact same group as the 2008 Pediatrics article, where the purported PANDAS kids didn't actually have PANDAS, and one of the lead author's (Leckman) even admitted this to the Boston Globe. Singer/Kurlan have used data from this non-pandas group in MULITPLE papers with the aim of refuting PANDAS. "Serum samples were available from 44 subjects with the diagnosis of PANDAS. Individuals were participants in a longitudinal Tourette Syndrome Study Group multicenter study of streptococcal infection and exacerbations in children with tics and obsessive–compulsive symptoms (Kurlan et al., 2008)." Also, the labs were NOT run by Cunningham:
"Methodology is a modiﬁcation of Lopez and Schnaar (2006).Assays wereperformedinsterile96-wellmicrotiterELISAplatestowhich50μl of antigen (10μg/ml; N-acetyl-D-glucosamine conjugated to bovine serum albumin (BSA), GlcNAc, Dextra Laboratories; puriﬁed bovine brain tubulin, MP Biomedicals; or human dopamine D2 receptor, PerkinElmer) were incubated overnight at 4 °C, then washed with 0.1% Tween in phosphate buffered saline (PBS). Plates were blocked with 1% BSA, washed, and incubated with serum diluted 1:500 in PBS with BSA. After washing, plates were incubated with secondary anti- bodydiluted1:1000in1%BSA,washedagain,anddevelopedwithpnitrophenylphosphate (Sigma). Optical density values were measured at 405 nm on an automated Bio-rad (Hercules, CA) Model 680 Microplate Reader and corrected by blanks (antigen without serum). Assays were performed in duplicate. All assays were performed in the laboratory of Dr. Harvey Singer at the Johns Hopkins Hospital." This paper is a bunch of garbage and I suspect even Harvey Singer knows that.
ChrissyD reacted to MomWithOCDSon in Harvey Singers new article
I have to say, I am always so impressed (NOT!) when a paper authored by someone (in this case, Singer), constantly refers back to previous papers by the self-same author (Singer), as though those references offer some sort of impartial support or corroboration!
ChrissyD was kind enough to forward me a full copy, and I count no less than 9 such references. Reminds me of a similar nay-sayer paper authored by Stanford Shulman in which he repeatedly quoted himself from previous papers.
I guess the pressure to publish is such that these guys have to keep doing it, even if they have nothing new to say.
ChrissyD reacted to JoyBop in Harvey Singers new article
I didn't get to read the while study but I'm not buying it. Who's to say those are the antibodies that are even causing the damage? Read this by Dritan Agillou. He's the scientist who has proven what cells are crossing the BBB and how they get there. If you scroll down you'll get to the part about pandas. His research is currently undergoing peer review and will hopefully be published within the next 6 months. It should change everything! A and by the way, its TH17 cells that are infiltrating the BBB.
ChrissyD got a reaction from rowingmom in Flu Vaccine
I will no longer do vaccines for anyone in my family, but it's a personal choice you need to make once you inform yourself fully.
Here's a great article detailing 10 facts about flu vaccines and the flu--
In our family we plan on practicing good hygiene & continuing our vitamins, probiotics and daily Zinc, Vitamin C & Vitamin D, to strengthen our immunity & to reduce our risk of influenza.
If you do choose to do a flu shot, avoid the live flu vaccine -- flumist. And please look at this chart by the CDC of influenza vaccine manufacturers for 2013 (see link below). It lists which brands/formulations contain thimerisol (aka mercury), and which formulations are live vs. inactivated for the 2013-14 season. Please ensure your child only gets a single dose flu shot without thimerisol if you feel a vaccine is warranted.
P.S. I did not come upon this decision lightly. I'm a nurse practitioner and I currently work in a large rehab facility/nursing home, so I see a lot of influenza and I'm exposed to it every season. After preaching the benefits of vaccines and recommending them to my patients for 20+ years I had a change of heart. This year, after many months of in-depth independent reading and research I had a paradigm shift in my thinking. I now realize vaccines aren't the 100% safe and effective intervention I'd been led to believe through my medical training.
ChrissyD got a reaction from momcap in My husband's 23andme result...feeling overwhelmed
Yes momcap, the 23andme test is a very comprehensive test...all this was tested for $99 and included MTHFR and these other mutations. When you receive your results-- you'll need an app or a website to help you upload the raw data & interpret the results--- the 23andme website doesn't go deeply enough. As LLM suggested, we used genetic genie (http://geneticgenie.org/) ....we uploaded my husband's results and it gave me all his mutations with a brief explanation of each one. Please see the thread LLM referenced above for more detail.
ChrissyD reacted to SSS in Dr.an Extreme Disappointment!
'Originally, T. Anna made a comment about the nurses and socks, but my personal opinion is dress your kid right if they can't dress themselves. I'm sorry, but that's how I feel.'
Lauren, you have stated previously you have a son who is going through your same protocol, but, 'had more going on'
Does your son, or you, have OCD? How is he doing on this protocol?
Can you imagine a child who has crippling OCD around their clothing?
I can. Been there, done that.
Trust me, there is no 'dress your kid right' when in the worst of episodes, in order to get them out the door.
You do the best you can to get them out the door without a complete nervous breakdown, literally.
ChrissyD reacted to mama2alex in Vaccinations for 12 year old, how to deal w/Dr.
First of all, HPV is not required for school. There have been reports of many reports of major, long-lasting, devastating "side-effects" from this vaccine, not to mention about 25 deaths. From your description of this doctor though, I imagine he will dismiss these reports as anecdotal and push for it anyway. Your son does not need this vaccine. It is to prevent cancer his future girlfriends and wife many years down the road and their are many questions as to its effectiveness anyway.
Tetanus - would that be the TDaP? That's actually 3 vaccines coming out of one needle.
Hep A - That isn't required for school in CA. Is it actually required in your state?
Meningitis - Also not required in CA.
So if he's talking about the TDaP, that's 6 vaccines he wants to inject into your son in one visit. That's a lot, even for a healthy kid. He is obviously in denial about your son's illness, so he doesn't even recognize that he will be injecting a sick kid with 6 vaccines at once - something the package inserts even warn against.
I wouldn't do it, and I agree with others - dump him. He's not listening to you, not helping you, and is pushing you to do something very risky for your child.
There are many pediatricians out there who will respect your decision and even pediatricians (though they are more likely to be out-of-network) who take a more holistic approach and understand that vaccines harm some kids.
Good websites re the vaccines are: www.nvic.org (National Vaccine Information Center) and www.sanevax.org (talks a lot about HPV/Gardisil vaccine). I would educate yourself on the vaccines and then make your own decision.
ChrissyD reacted to LNN in Close to being diagnosed Bipolar
There's no way I'd accept a bipolar dx for any child so young. To me, that's an "I don't know what this is, so I'll put this label on it and send you on your way". No way would I give a 4 yr old bi-polar meds. Especially after seeing improvement on abx and probiotics. That points to gut/nutrition/system deficiencies - where mood swings are a symptom, not a cause.
My DD8 could have easily gotten a bi-polar label had I gone that route. She is now completely stable by treating her MTHFR mutation (tho she does have a thyroid problem we're trying to figure out) - but no mood swings anymore. You should read this:
"MTHFR plays a direct role in how well the BH4 cycle works – and the BH4 cycle controls those two neurotransmitters that are so essential to people with behavioral and emotional challenges – serotonin and dopamine....Supplementing with methylfolate has made a huge difference for my daughter (and has also helped my own health). Over a few months, my daughter’s anxiety, mood cycling and sadness evaporated..... (read the whole article)
I'd encourage you to re-do the MTHFR lab test and then follow up with a 23andMe spit test (which takes 7 weeks to get the results but is only $99 and requires no doctor involvement). There is a lot more to the picture than just MTHFR and treatment needs to consider the whole picture (for example, my DD also has a CBS mutation that needed to be addressed or else the whole system would've remained stuck in overdrive). But for now, I'd absolutely look at MTHFR. IMO, a 4 yr old should not be given a bi-polar dx and I'd look into nutritional remedies, not psychotropic drugs developed for adults. They have no idea what sort of damage these drugs can do to a developing brain over time. Yet it's a no brainer that proper doses of the proper form of Vitamin B9 (methylfolate if you have MTHFR) will do no harm.
Do no let a psychiatrist make you doubt your mother's instincts.
ChrissyD reacted to mdmom in Good Advice for all of us when dealing with doctors
Many of you probably have had similar experiences....
I have taken my son to many, many medical professionals. By the time we got to our current treating doc, I started counting the number of medical folks we had seen. She was #25. She has helped us the most.
Why is she the best so far? Because she takes a lot of time with us, listens, is respectful and even empathizes on a personal level.
I have fired doctors after one visit. I now believe that you can tell in only one visit whether or not a doc is a good fit.
I am currently reading the book Blink by Malcom Gladwell and he states the same on page 43:
"Next time you meet a doctor, and you sit down in his office and he starts to talk, if you have the sense that he isn't listening to you, that he's talking down to you, and that he isn't treating you with respect, listen to that feeling. You have thin-sliced him and found him wanting."
Thin-slicing refers to the concept that you can form a pretty accurate opinion of a situation or person in just short clip of interaction or time.
When finding help for your child, listen to your gut feelings about a doc. I wish I had done this so long ago. Perhaps the doc that now helps the most wouldn't have been #25 on my list.
ChrissyD reacted to JuliaFaith in A bright star in the midst of treatment
My son has been on the PANS journey for over 3+ years now and is currently doing GcMAF injections to try to get his immune system working again. This has caused him some additional inflammation and so doing school work has been a bit more difficult.
He is currently doing an on-line free public school and I am the coach! :-0 Anyway, he has a medical 504 for his schooling which gives him some extra time for assignments. He is currently about a month behind in one class because of an illness and now treatment. The teacher of this class just gave him a "Student of the Month" award for April! Yes, mom was crying!
This was so unexpected and gave my son a much-needed boost during a difficult time. So good to know there are caring and loving people out there willing to help during these difficult times that we are all facing. Here is hoping that you all will find people like this during your journey as well!
Best wishes to you all on healing!
ChrissyD got a reaction from chadzilla333 in I had PANDAS
Thank you so much for taking the time to share your amazing story. We parents really love hearing recovery stories, especially told from your 1st person perspective. You're so lucky to have a wonderful mom and great friends that supported you. Good luck to you in the future.
ChrissyD reacted to Dedee in Leaving On a Jet Plane....(With a Raging Child)
I am so sorry. I know how you feel. I am so proud of you for not caving under this pressure. This is a terrible situation to be in. Not many people understand a raging child on a plane (except PANS parents). You are doing the right thing by making a plan. I agree with the previous poster.....I say just do whatever it takes to get through the situation. Block out everyone else and concentrate only on your family. Don't worry about what she wears. It won't kill her. The most important thing at this point is getting her to the doctor. Even if it's in her PJ's. You are doing a great job in this very difficult situation. Keep up the good work. Let us know how it goes. Keeping you in my thoughts and prayers. Best of luck.
ChrissyD reacted to mdmom in Leaving On a Jet Plane....(With a Raging Child)
I suggest calling the airline's customer relations department and letting them know of your daughter's current state. They may let you board first with passengers with disabilities, which might ease some of your daughter's stress when boarding since being touched and bumped during boarding and deboarding is inevitable. Also , the airport puts everyone on edge even on a good day, and I would worry that the TSA might have issues with outbursts and rage if they aren't informed ahead of time that your daughter is in a fragile state right now and you are traveling to get her help.
When I flew Southwest with my son 2+ years ago and expected him to have outbursts in the airport and on the plane, I called ahead and explained the situation. They made a note on his file (and mine) that he needed extra care, so it helped everyone involved. They let us board early and it helped immensely.
ChrissyD reacted to Hopeny in WWYD? Low IgG
One thing that stuck in my head from the psychiatrist is the more you can maximize the good times and happy memories the stronger the recovery. If your son wants to go I take that as a very healthy sign and would support with precautions. Maybe this is a chance to try to work thru food issues like if you go you need to eat etc. good luck.