Mayzoo
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Posts posted by Mayzoo
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Every visit with our kiddos neurologist is frustrating, but I am learning to not let it get to me. We only see him to keep a neuro-ophthalmology doc accessible at our Scottish Rite Hospital. If we don't stay current with a primary in neurology, she cannot keep seeing the eye doc
. Her neurologist at SRH has always stated that every symptom she exhibits is strictly behavioural
. When she screams in pain for days on end until exhaustion overtakes her after about 6-8 hours of screaming, this is also behavioural in his opinion. DD has confirmed diagnoses by this neuro of Arnold Chiari Malformation, syringiomylia, arachnoid cyst, autism and torticollis....yet no matter her symptom....it is behavioural. Of course, we do not rely on this doc for actual care, we go elsewhere. I gather he feels her symptoms are behaviours she could control, but since I allow them, she does not control herself. In other words, he thinks it is bad parenting.I have not even broached the subject of PANDAS with him yet since when I took her in for an eval recently (and naive me, I presented him with all her symptoms hoping for some actual help), again all her symptoms were behavioural according to him. I only later read up on PANDAS on my own. His office only knows of her strep infection incidentally since the MRI he ordered had to be canceled twice due to the strep.
You are not alone with the frustration with neuros. All I can say is good luck, and I hope you can find a doc that will listen to you.
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Prednisone:
Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); (My link.) I did however work in pharmacy for 20 years and do not recall a rash associated to prednisone, BUT I am not saying it could never happen.
To your knowledge, has he been exposed to chicken pox or measles? If so, both can present more strongly when a person is on immunosuppressive agents.
Have you called the doc yet?
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My 14 year old started putting his fingers in his mouth when he had P...something he never did before.
When the P symptoms went away, so did the fingers in his mouth.
Mayzoo...does the nail polish do a good job of keeping fingers out of the mouth? My son with autism
has been chewing his nails since his dose of depakote was increased.
Yes, it works well. I got it off amazon.com (My link) It does have to put on 2-3 times a day, and it can burn a little if they have an open area from the biting. I use application times to positively reinforce why she should stop nail biting. I just list the benefits of not biting and mention all the germies on her fingers that I know she does not want in her mouth (we do not have germ fears as part of the OCD and seem to be dealing more with vocal tics and compulsions). If she says it burns a little, all I say in an upbeat voice is that it will not burn anymore when she stops biting the nails/areas. I tried it on one of my open wounds first, and it is only a pretty mild stinging sensation. We are having a hard time getting rid of strep right now and I suspect this plays at least a minor role.
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Mayzoo, did you end up getting the MRI on Thurs, and how'd that go?
We've actually gotten Allie off all psych meds. Maybe I'll try going off abx again after this polyp/cyst thing in her sinuses is taken care of. Its just that when she flares, its really, really bad- she and her family get pretty beat up, and I'm not just talking emotionally beat up.
Eamom- the only imitrex we have is the nasal spray cartridge. When it does work, it does so very quickly.
No, we did not get to do the MRI. Her throat is still red and the hospital and I do not want to take the chance (2 hour sedation). Her next pedi appt is on the 29th, and if her rapid culture is still positive (or even if it is negative) I am going to have them send it off to see if anything else grows since we cannot rid of this strep (yet). She tested positive on 1-5 and no telling how long she had it before that because she had no symptoms other than the red throat (I did not know her throat was red
). The hospital says we need to go to an ENT, and if she is still positive we probably will because I am guessing we may need to discuss a T & A even though the tonsils "look fine".
I am very glad you got almost everything done that you wanted in the one visit. That makes a huge difference in trauma sustained to the poor kiddos.
That is great you were able to get her off the other meds, and it is a good expectation that you should be able to eventually get her off abx, but that will sadly just have to be a trial and error guessing game---seems to be no way around that.
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No thumb sucking, but nail biting started out of the blue for DD at almost 10 years old. Those two are somewhat related soothing techniques for anxiety.
We are trying the product "Thum" which is a bittering agent in a clear nail polish, plus discussing the health risks of nail biting. I am trying to recommend alternative soothing behaviours as well.
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Well, got her through the MRI. Dermdoc did the biopsy on her sores- she thought it would turn up something because it turns out there was some pus in there, but so far the culture for bacteria/fungal is negative. They did not do contrast like they were supposed to for the MRI, but found an "inflammatory polyp" in her left maxillary sinus. Her ped says this is very likely the cause of her photophobia and pressing on her eyes when she gets a headache. So we're off to the ENT this Friday.
So, I did what turned out to be a stupid thing. We stopped abx for 11 days prior to the procedure because we didn't want it to interfere w/ wound culture growth. Well, Allie seemed to be doing okay, so I decided to see how she'd do off abx and did not start them back up again. Allie started a bad flair on Wednesday- the demon possessed kind. So now we're back on rifampin/omnicef and prednisone. Just started yesterday evening, and actually she's much better this AM. Yesterday afternoon, it took @ 20 minutes to get her from her doc's waiting room to the exam room- all the while she's pushing back and slugging, biting, trying to flee.
It was not a stupid thing in my opinion Peg. Isn't the goal to get her off all the meds you possibly can in the future? You cannot predict how she will react as you attempt to remove a med from her therapy, you simply must try and see what happens.
If you never try, she will never get off any meds, and since you do not have a magic crystal ball to inform you of the outcome without the risk--you just have to go with your gut; HOWEVER, if you find a magic crystal ball that lets you know the outcomes, please do let me know where you got it or better yet just buy two and I will gladly and expediently repay you any cost you incur to get it--I promise
!!!! And see, now you have it writing, that is a contract is it not? -
My sister sent me this article yesterday. Nothing new it, but it is nice to see the word getting out more and more.
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Bumping this up so it does not drop off the first page since I am sure I read some kids are on doxy.
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The below quote reminds me of a TOTALLY UNRELATED incident, but it was a media circus at the time (1989).
"Some of the girls originally believed they didn't have enough stress in their lives to bring on these symptoms but Dr. McVige says now they're starting to come around."
The issue it reminds me of is when Margaret Kelly Michaels (Wee Care Nursery School) was indicted for 299 offenses in connection with the sexual assault of 33 children (1989). Turns out the kids were questioned for long periods of time in a VERY leading manner. The vast majority of the kids said nothing happened, but then after basically being told what to say, and not being allowed to leave until they said it, the kids made statements; some ended with recorded "It's all lies" at the end. Final outcome "The New Jersey Supreme Court upheld the lower court's decision and declared "the interviews of the children were highly improper and utilized coercive and unduly suggestive methods." My link
Unrelated I know, but I lived in this time frame and this was not an isolated type of problem, so I remember it well.
My point of this post is that suggestive questioning can be dangerous, and if that is what is going on, I wonder what the backlash will end up being for these girls later in life.
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Also, do different labs charge more than others?
Melanie
Sorry, I missed this part, but sorta covered it.
What your lab is allowed to charge is decided by your insurance company even though you have not met your deductible yet. 99.99% of the time, all labs that have signed a contract with your insurance company (listed as providers) will charge the same because the insurance company determines what is allowed, not the lab.
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I do not see your doc, but I have worked in pharmacy, reviewed and signed insurance contracts and actually done home medical billing for a total of 20 years.
The first labs we had were the ASO and Anti-dnase. The lab said they were going to be 189.00. The insurance only allowed the lab to charge 18.82. Most insurance companies have what is called a MAC (maximum allowable cost) that they allow any provider to charge, even if you have not met your deductible yet (we had not met ours yet either.) Every insurance company has slightly different MAC prices and each insurance company has different contracts with their providers, so your company will likely be different.
Have the lab send you a bill after the insurance has reviewed the claim rather than paying up front and ask if you can pay in installments as well. The lab we went to asked us to pay the day of the draw, but when I told them I had no idea what the insurance was going to allow yet, they quickly agreed to send us a bill after the review.
You can also call your insurance company after the blood work is ordered with the names of the lab work, but before the blood draw and ask how much they will allow for each item so you will not be surprised. They may not "want" to answer, but they likely will if you ask them enough.
We also just had celiac, lupus, western blot (lyme) and the two thyroid test run and the insurance company allows around $35.00 for those.
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My daughter was unexpectedly rapid test positive on 1-5-12 (so I have no idea how long she was strep +). I took her in to get the blood work ordered and found out her throat was red, so they tested her. Her ASO was very low when tested on 1-5-12 (I believe 6 but I do not have it in front of me) and her Dnase-B was I think 65 or 95.) She was placed on amox for 10 days, and was positive again on the 16th, the 26th and still positive on 2-1-12. We have changed antibiotics numerous times, and are now just staying on Zithromax 250 per day for 4 weeks before we retest on 2-29-12. We have not retested the ASO or D-nase-B.
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So far this is what I have found on the test:
"Streptozyme is a screening test used to detect antibodies to several streptococcal antigens. An antigen is a substance that can trigger an immune response, resulting in production of an antibody as part of the body's defense against infection and disease. The test is not as sensitive or specific as the ASO test, but can be performed within minutes, providing presumptive results that can be confirmed by use of the ASO or other more specific streptococcal antibody tests."
A five page article: Specificity and Sensitivity of the Streptozyme Test for the
Detection of Streptococcal Antibodies
We did not test for this on my kiddo, but I hope the links help you some and that someone who has some first hand knowledge comes along to better answer your questions.
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Thanks again for all the prayers and support. But, let me just scream in utter frustration here...AAAAAARRRRRRGGGGHH!!
Everything went well- got Allie ready to go (which is so smooth when you don't need to feed her!). Only took 20 minutes or so to get her into the building and back to waiting room #1. We checked in and allowed her to exhaust freak-out #1. Then called back to waiting room #2- working our way through freakout #2, and the "take you back to the next area" lady asked if she needed to be sedated...uh, yeah! So, anesthesia was not on the MRI order, and the anesthesiologist is booked solid and will not be able to fit us in. Not only that, none of the specialists had ordered their parts of the tests-so only the MRI had been ordered. So we rescheduled for Friday and I get to spend the rest of the day making calls to make sure that Friday is set up properly. On the bright side...maybe Friday will go smoother now that we've practiced!
My daughter is scheduled for an MRI on the 23rd (if we can rid of the active strep inf), so I will make sure they have her down for general at the MRI dept too (thanks for the reminder, sorry it was such a pain for you guys).
I will keep you in my thoughts and prayers for Friday.
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Praying for you too. Balancing the greater good vs immediate suffering is hard in parenting.
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A google search shows the most recent published diagnostic criteria are Feb 24, 2011 (so far as I can tell). Apparently it is not up on the net yet.
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I was given wockhardt brand azith 250mg recently for a sinus infection for me. Anyone have any experience with this brand for PANDAS kids?
All the ones I have gotten for kiddo so far have been Sandoz.
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I just received this from Beth Maloney -- a press release which she said she is distributing on behalf of Dr. Trifiletti.
Press Release:
February 6, 2012
LE ROY, NY TEENS: BEHAVIORS LINKED TO INFECTIONS
Ramsey, NJ — February 6, 2012 — Rosario Trifiletti, MD has announced the results of the laboratory data that he collected in standardized fashion from eight of nine girls he examined in Le Roy, NY. National attention has been drawn to the plight of the teens who have been unable to control various bodily twitching and jerking movements. Dr. Trifiletti reported that five of eight girls show evidence of Streptococcus Pyogenes (common Group A strep) and seven of eight show evidence of infection with Mycoplasma Pneumonia (the bacteria that causes walking pneumonia). All eight girls tested show evidence of infection with at least one of those pathogens. Both of these bacterium have been associated with a PANDAS-like illness of sudden onset of motor and vocal tics. “A PANDAS-like illness is my working diagnosis, rather than a mass conversion disorder as others have suggested,” said Dr. Trifiletti. He has already started treating the girls with antibiotics and anti-inflammatory agents. When asked to comment on the continued insistence by Dr. Laszlo Mechtler that the girls have conversion disorder (or mass hysteria as Dr. Mechtler originally stated), Dr. Trifiletti said, “I'm confused by that because he's never actually seen or interviewed any of the nine girls I examined.”
These findings provide a significant clue in the Le Roy High School mystery, but certainly many questions remain. Streptococcus Pyogenes and Mycoplasma Pneumonia are common pathogens that children throughout the world are exposed to every day. Why this town? Why this particular child and not another? Why such a curious presentation resembling Tourette syndrome? Until these questions are fully answered, the doctor said that the cluster will remain a mystery. “I suspect that genetic, environmental factors provide an immune background where the PANDAS-like response is possible to common pathogens. The infectious exposure is simply 'the straw that broke the camel’s back,'” said Trifiletti. However, the infectious exposure points the way to rational medical treatment for these children, which he said is of immediate importance. “Clearly, their response to the treatment I've started will be helpful in supporting my working diagnosis,” he added.
As with most illnesses, Trifiletti said there is a complex interplay of genetic and environmental factors involved. As with all illnesses, psychological factors possibly play some role as well. “All we have done here is provided evidence for exposure to two infectious agents as potential factors,” said Trifiletti. “I encourage efforts to further explore genetic and other environmental factors that likely are playing an additional role here.”
To reach Dr. Trifiletti contact: Telephone: 201-962-7284
Email: trifmd@gmail.com
Website: http://www.site.neurokidsr.us
For additional Information about PANDAS:
http://www.pandasfoundation.org
http://www.nimh.nih.gov/health/publications/pandas/pandas-frequently-asked-questions- about-pediatric-autoimmune-neuropsychiatric-disorders-associated-with-streptococcal- infections.shtml
Why disturbing?
Did you get disturbing from this sentence? "a press release which she said she is distributing on behalf of Dr. Trifiletti."
If so, it is distributing--not disturbing. Sorry if I misunderstood you.
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My daughter has to have regular MRIs for other conditions. She has another scheduled on the 23rd if we can ever get her strep culture negative.
My first bit of advice, no matter the diagnosis, keep in mind nothing physically has changed from the day before the diagnosis to the day of the diagnosis. You are not suddenly fighting something new, you just know what you are fighting. What a diagnosis really is essentially is a tool or a weapon. The saying information is power is very true. You cannot combat the unknown, so a diagnosis gives you a fighting chance for improvement.
My daughter has: Arnold Chiari Malformation I (part of the brain distends into the spinal column), Arachnoid Cyst (a cyst almost in the middle of her brain), a Sryingiomylia (a cyst in the spine), Autism, and a myriad of other issues.
If you want, you can PM me for more information or just to chat.
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We have an MRI scheduled for the 23rd, if we can ever get a negative strep test (Hosp does not want her there if she is sick).
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Oh, wait....I reread your title. Penicillin is in the same category as augmentin, so scratch that one. Sorry.
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DS4 (x2) got taken off of Azithromycin because they tested pos for strep throat on it and it is wreaking havoc on there bellies. No weight gain, reflux etc.. Changed to Omnicef now they are allergic to that too. Now what? Joe has been sick for almost 3 weeks. Pos for strep, then massived ear infection.....had to suction pus out of his ear. And now still has a bellyache, sore throat, stuffy nose and is starting a cough....not too mention the emotnal side of it. He can't stop crying. I broke down into tears today, just overwhelmed with 3 sick kids.. Thanks for letting me vent
If he is home with you, you could try penicillin. The dosing is much more frequent, but it is listed in the literature I have read for Pandas and strep. Not sure how effective it may be for you son though.
I have a similar situation with my DD. I took her in to get blood work ordered to see if her titers were high or not and to discuss Pandas with her pedi. She, to my surprise, tested positive for strep in the office. Ten days of amoxicillin-still positive, 10 days of augmentin--still positive, 3 days of zithromax and her throat is still as red as it was day one. She was not symptomatic in the normal strep way, so I did not think she had strep
. I thought we were dealing with issues from a past September illness. Now, I wonder if she ever got over the strep in September. Her pedi wants her to go to an infectious disease doc, for further testing I believe. -
What's TBI.
I believe it is Tick Borne Infection; however, I am not positive.
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Mayzoo- did those meds help your daughter?
She was on the topamax for headaches and neuropathic pain related to Chiari and yes it helped a great deal. The baclofen was helped with neck spasms.
. 
. When she screams in pain for days on end until exhaustion overtakes her after about 6-8 hours of screaming, this is also behavioural in his opinion. DD has confirmed diagnoses by this neuro of Arnold Chiari Malformation, syringiomylia, arachnoid cyst, autism and torticollis....yet no matter her symptom....it is behavioural. Of course, we do not rely on this doc for actual care, we go elsewhere. I gather he feels her symptoms are behaviours she could control, but since I allow them, she does not control herself. In other words, he thinks it is bad parenting.
!!!! And see, now you have it writing, that is a contract is it not?
. I thought we were dealing with issues from a past September illness. Now, I wonder if she ever got over the strep in September. Her pedi wants her to go to an infectious disease doc, for further testing I believe.
Vision oddities?
in PANS / PANDAS (Lyme included)
Posted
Peg, I take sweetie to a pediatric neuro-opthamologist. They can use lenses to determine fairly accurately what her vision is without her ever having to answer a single question. I think how they do is by shinning a mild light into her eye through the lens and see where that light makes its focal point. They then tweak the lens strength until the focal point is on the retina. No big machines, just a 1.5" lens and a mild/moderate light. At least that is how I understand what they are doing. Sweetie is almost visually blind in one eye and they think it corrected to 20/60 or so with the glasses, but without glasses an object would have to be touching her eye lashes for her to be able to see it clearly. Her other eye is not fantastic, but nothing as bad as the first.
Hope that helps some anyway.