colleenrn
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Posts posted by colleenrn
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I am so sorry that physician was not helpful. I think it is horrible what parents must go through, but there are many physicians who know that PANDAS is real! Where do you live so people can help get you names and numbers?
Hang in there. You will find help.
Colleen
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I had to send this email to Dr. Singer after reading his very maddening articles/presentations/web site on why PANDAS is not real......
Dear Dr. Singer,
My daughter had an abrupt onset of OCD and tics at the age of five. She went to bed one night the most "normal", well adjusted child I have ever known, yet woke up with full blown OCD behaviors and tics. As a psychiatric nurse, I immediately searched for answers. She continued to worsen, at which point she was diagnosed with strep throat. After a few days on antibiotics, she completely returned to her normal state. This was eight years ago. If PANDAS is not "real", please explain to me why her OCD and tics ONLY occur when she has strep.
She was diagnosed with PANDAS by Dr. Susan Swedo, who at the time believed that strep titers must be elevated in order to diagnose. She has since retracted that, yet the NIMH web site does not reflect it.
My daughter has normal ASO and Anti-DNase B titers while culturing positive for strep A. This is a common occurrence in many children with PANDAS. Are you familiar with Madeleine Cunningham's curent study of other antibodies found only in children with SC and PANDAS?
I talk to parents of children misdiagnosed with Tourette's and OCD all the time. Their children have PANDAS, yet are placed on psychiatric medications and their condition worsens b/c they need antibiotics and/or IVIG.
I implore you to stop trying to disprove PANDAS . While it has a genetic component similar to the genetic component seen with rheumatic fever, it is the strep that triggers it.
You have stated that the strep-tic link may be coincidental? It is impossible that my daughter's emergence of tics and OCD behaviors for eight years whenever she has strep is coincidental. You are doing more harm than good in your continued quest to disprove PANDAS.
Sincerely,
Colleen RN
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We will not be getting the H1N1 vaccine. I am also worried about the flu, but much more worried about the vaccine.
For the past three years one or all of my children have had the type A influenza and I never noticed an increase in PANDAS symptoms (I know some PANDAS kids react a lot to viruses though). My 3 youngest had pertussis (whooping cough) and chicken pox last year and I also did not see and increase in PANDAS symptoms.
I highly recommend using oscillococinum at the very first signs of the flu. I have used it while pregnant with the flu and have given it to a 1 year old child. It is amazing- it cuts the viral load in half. It does not have any of the side effects you get from anti-virals (tamiflu).
I am using xylitol nose spray, toothpaste and gargle once a day with all of my kids. Xylitol has anti bacterial (strep) and anti-viral properties. We began this regimen on the first day of school last week. There are already several cases of strep in our elementary school. A bunch of my daughter's friends (8th graders) had H1N1 this summer and all recovered fine.
I am very afraid that they will try to mandate the vaccine. I think they are not going to say that until they have the vaccine in hand, which will be coming very soon. I am also afraid that when they start giving the nasal H1N1 vaccine which is a "live attenuated vaccine" that the kids getting it will have "viral shedding" b/c it is a live vaccine and my kids will be even mored exposed to the flu. I know they say you "cannot get the flu from the live vaccine", but I am not 100% convinced of that. I would LOVE any input about this issue!
Thanks,
Colleen
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I have met many, many physicians who have never heard of PANDAS, but I have never had a physician tell me they do not believe in PANDAS. I am waiting for that day and they will get an earful, to say the least. The docs I have met who have never heard of PANDAS, I always start my explanation with "I assume you have heard of rheumatic fever, well it is very similiar to that process. The body makes antibodies to attack the strep, but in rheumatic fever, these antibodies mistakingly attack the heart. In PANDAS they mistakingly attack the basal ganglia"
I think some of the "disbelief" is just plain stubborness. IF they are even taught about PANDAS in med school, they are told it is still a "theory". I know at our University, they "mention" it in med school and they have ONE lecture on it while they are doing their psych residency. I think that is the extent of it.
Colleen
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What dose is she on 2x/week? If I knew that my child was with someone with strep, I would definitely bump her dose up to everyday, for at least 10 days. My kids are on daily Zithromax and were exposed to strep a month ago. They reacted very negatively, so given that, I know a flareup can occur while on Zith. You may want to think of bumping up the dose to prevent a flareup.
Colleen
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Pixiesmommy,
I cannot at the moment remember how old your daughter is, or her "story",and my computer is being very slow and will not let me read your previous posts, BUT I would say, given her current state, I would "lightly" sedate her. I am thinking she is under 50# (if I remember her story), so given that, IF she were my child I would let her have Benadryl (dyphenhydramine) 50mg max. I have given Benadryl to all of my 4 PANDAS children and it has never had a negative effect on them. 50 mg of Benadryl should knock her out, but safely do so.
I would most definitely also contact, via email or emergency call, Dr. K or ANY PANDAS physician who prescribed steroids to her and ask their opinion. Is she is currently on antibiotics at a treatment dose? If so,I would be highly suspicious that it is strep and treat it aggresssively, with IV antibiotics if needed.
I completely understand your husband's reluctance to hospitalize her in psych. I do not think that would be beneficial. I would keep her where she is and deal with it from there. If you go to psych, they may push for psychiatric meds, which may make things worse.
Hang in there!!
Colleen
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Kayanne,
I agree that there is no in vetro resistance of strep with PCN (in a dish), BUT it is much different in the body. There are two reasons why PCN may not work on strep. One is that if the strep is intracellular, PCN is ineffective.
The second reason is that in the body, with certain other common pathogens (Streptococcus pyogenes and Moraxella catarrhalis), these pathogens cause the strep to adhere to the epithelial cells (coaggregation).
http://www.entrepreneur.com/tradejournals/.../169459644.html
I think it is always best to use the "least potent" antibiotic, but these two reasons are why penicillin/amoxicillin do not work sometimes. It was my experience with using thes two antibiotics with my oldest child and not seeing a positive response, that I switched to Augmentin, then a cephalosporin, and finally Zithromax. I am worried that possibly one day the Zith won't be effective, but fingers crossed and lots of prayers, it seems to be working now.
DCmom-
It is imperative with PCN that no doses are missed or you will not have coverage. B/c Zith has a long 1/2 life, this is not the case. If you are using PCN, try to give it on a very regular schedule. I too wonder if after using Zith for a long time, would it be best to switch to Augmentin??
Dee45-
If PCN is working well for you I would stick with it, but have a low threshold as to symptoms and think about switching if you think it is not working (intracellular strep or coaggreagation). You could always switch to Zith or a cephalosporin, then return to PCN. I definitely disagree with not testing unless you are prepared to treat b/c PANDAS is such a "mystery" that I feel any piece to this puzzle would be helpful.
Debbie-
What testing did yo ask your Ped about that he declined??
Colleen
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My children have had positive throat cultures, but normal ASO's. They have hardly ever had a positive rapid strep test. The 72 hr. culture is b/c some kids strep cultures do not turn positive by 48 hrs. I would have to say a big yes to doing a culture.
Colleen
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Hi. I was wondering if you could talk more about your reason to use PCN instead of Zith. My kids are on Zith now and would love to have any input!
Thanks!
Colleen
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It was probably an ASO and/or antiDnase B, both looking for strep antibodies. Have you had a 72 hour throat culture? I would suggest that asap. You may want to also post on the PANDAS section of lattitudes.
Colleen
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LeLe-
How did your doctor rule out strep? I am asking this b/c some PANDAS children can have strep without any physical symptoms. Often the rapid strep test is negative, but if you do a full 72 hour culture it can be positive. Also, strep can hide in many other places in the body that a throat culture cannot test. Some children can have an active strep infection somewhere in their body, but still have completely normal strep titers (blood test).
Colleen
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In my experience, which I learned the hard way, subsequent episodes can be worse. That is why I strongly feel PANDAS children must be on prophylactic antibiotics. I believe PANDAS must be treated as if they had rheumatic fever, which requires prophylactic antibiotics through childhood.
When things would get much better with my daughter, I would let her go months with NO antibiotics and then all ###### would break loose eventually and I would kick myself for not keeping her on antibiotics. That is just my experience.
Colleen
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Yep. Read all about it before you call him. It is the main cause of peptic ulcers, so he cannot dispute that since she is not on NSAIDS.
Hopefully he was NOT thinking that antibiotics were not needed b/c she is on a low dose of Zith, b/c Zith would not be enough to erradicate it.
Good luck!
Colleen
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How did they diagnose CVID- was it just by the low IgG or other tests?
I was looking at the clinical picture of CVID and it fit my childhood to a tee. Since my first child was diagnosed with PANDAS 8 years ago, I began to realize that I was a PANDAS child, but when I read about CVID, I could not believe what I was reading b/c I had a lotl of those symptoms/diseases (lots of strep, lots of ear infections, mono, camylobacter, pneumonia 2-3 times before the age of 12)
I need to read more about it, but any info that anyone has would be appreciated! I have never had my children's IgG,IgA, IgM tested. Should I? What didferent treatments would I do if there was something off with it?
Thanks!
Colleen
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Hi Susan,
Did they detect H. pylori bacteria? If so, the treatment is antibiotics along with acid reducers. Here is what the Mayo clinic says for treatment:
Because many ulcers stem from H. pylori bacteria, doctors use a two-pronged approach to peptic ulcer treatment:
■Kill the bacteria.
■Reduce the level of acid in your digestive system to relieve pain and encourage healing.
Accomplishing these two goals requires the use of at least two, and sometimes three or four, of the following medications:
■Antibiotic medications. Doctors use combinations of antibiotics to treat H. pylori because one antibiotic alone isn't always sufficient to kill the organism. For the treatment to work, follow your doctor's instructions precisely. Antibiotics prescribed for treatment of H. pylori include amoxicillin (Amoxil), clarithromycin (Biaxin) and metronidazole (Flagyl). Combination drugs that include two antibiotics together with an acid suppressor or cytoprotective agent (Helidac, Prevpac) have been designed specifically for the treatment of H. pylori infection. You'll likely need to take antibiotics for two weeks, depending on their type and number. Other medications prescribed along with antibiotics generally are taken for a longer period.
■Acid blockers.
■Antacids.
■Cytoprotective agents. In some cases, your doctor may prescribe these medications that help protect the tissues that line your stomach and small intestine. They include the prescription medications sucralfate (Carafate) and misoprostol (Cytotec). Another nonprescription cytoprotective agent is bismuth subsalicylate (Pepto-Bismol).
If H. pylori isn't identified in your system, then it's likely that your ulcer is due to NSAIDs — which you should stop using, if possible — or acid reflux, which can cause esophageal ulcers. In both cases, your doctor will try to reduce acid levels — through use of acid blockers, antacids or proton pump inhibitors — and may also have you use cytoprotective drugs.
Colleen
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Melanie,
That is awesome!!! I wish you the best of luck!!
Colleen
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How long didi it take to get your results from Dr. Cunningham? Did you receive them via email or mail? I sent ours in on Aug. 4th and was just wondering when to expect them.
Thanks, Colleen
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I just wanted to add to make sure and rule out PANDAS as a cause of the tics in a 7 year old child. Some children with PANDAS have primarily tics and not OCD. There is tons of info on the PANDAS section. Hang in there!!
Colleen
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I will second that amen!!!
Colleen
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Susan,
Unfortunately, to my knowledge, there are no Zithromax studies with PANDAS using that dose. Dr. Swedo's study used 500mg/week. Here is a link to a study using Zithromax prophylactically with cystic fibrosis patients, but it is 250mg on Mon/Wed/Fri.
http://jama.ama-assn.org/cgi/content/full/290/13/1749
My kids have been on 250mg/day since October. My 6 year old weighs about 45#. When I have cut his dose to only 125 mg/day, his symptoms start to creep back.
Did you say that your neuro gave you six months of Zith? I am not telling you what to do or not do, but if I were in your situation, I would increase the dose on my own to 250mg/day for at least 2 weeks and see if there is an improvement.
I have posted about this before, but thought I would add it again. Two of my sister's children have PANDAS and her pediatrician is super conservative, BUT when they have strep her doctor puts her 8 and 10 year old on 500mg/day for 10 days. This pediatrician says that new research shows that with strep this higher dose is required. I have not been able to find research supporting this, but given how conservative this physician is, I believe her and trust her. This would not apply to your child quite yet given her weight. My sister has also noticed that her children respond better with taking all 500mg at once instead of 250 in the am and 250 in the pm, which I think is very intersesting.
Colleen
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Absolutely pathetic.
Sorry for a rant, but I am sick to death of hearing "I don't know if I believe in PANDAS" or "PANDAS is very contoversial" or worse yet, "PANDAS does not exist"
I think every parent whose child has had a positive throat culture WITH a NORMAL titer should contact this misinformed physician. I plan on doing it after this post. I want his expalnation as to why my child has a positive throat culture yet a normal titer. Physicians such as Leckman, Dr. K, Dr. Swedo, Dr. Latimer, all need to speak loud and clearly to this physician and educate him as to strep titers.
So many precious children are being harmed b/c of physicians like him and it needs to stop.
Colleen
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Elizabeth-
Did they also do a 72 hr. culture? Lots of kids have neg. rapids, but pos. cultures. Sometimes my kids have neg. cultures also, but I know they have strep and they respond to antibiotics.
Colleen
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So sorry to hear what you are going through.
It most definitely sounds like you are dealing with PANDAS. Who prescribed the Zithromax and for what reason? If she has strep somewhere and weighs 50 #, 100 mg for 5 days is not enough. A treatment dose of Zithromax should be 12mg/kg/day. For a 50# child it should be 250mg/day. The usual course is 5 days, but with PANDAS children they usually require at least 10 days if not longer. Then, when you are ready to bump it down to a prophylactic dose, IMO M/W/F is not enough. You are better off decreasing the dose to 125mg/day, but given everyday. Some kids can eventually go to every other day, but you want to start with the higher dose, then decrease it. Every child is different, but this is what I feel works best.
You may really want to consider not giving a flu shot this year. Many, many PANDAS children react negatively to vaccines, especially flu shots.
There are a lot of parents on this forum who will have info for you. Hang in there!!
Colleen
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Bless you! Thank you SO SO much for finding this! We're on our way out the door with print out in hand!
You guys are the best! -Dawn
Any info on Harvey Singer?
in PANS / PANDAS (Lyme included)
Posted
Thanks. I mentioned in another post on another thread that I have never personally had a physician tell me they don't believe in PANDAS. What I did not add is that I have sent emails and called physicians who I have read about who do not believe in PANDAS. I can't read that someone doesn't believe in PANDAS and not call them on it. My feeling is, how dare they try to say it is not real when my kids live it everyday.
Colleen