Mayzoo
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Posts posted by Mayzoo
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We are seeing an new immunologist on the 4th. Can you call in advance and find out what their approach is towards PANDAS, or is it simply not relevant as you need an immunologist regardless of their view on PANDAS?
I am taking with us:
1. A print out of kiddos medical history that I made on this site: https://www.onemedicalpassport.com/lobby/lobby.asp?bhcp=1. It puts all the major history into one place so I do not have to remember it all or carry the 5" binder with me with all the dates.
2. All past lab work.
3. A filled out Pediatric Acute Neuropsychiatric Symptom Scale (but I know our immunologist is on board for PANDAS).
4. Her past MRIs (for other medical conditions).
5. A copy of the lab culture for her recent T & A and the JAMA medical article on how to treat her specific bacterial infection.
6. A list of her SX at time of onset.
7. Logs of changes as they occurred after introduction of treatment.
8. List of all meds and dosage, including homeopathic (which is on that medical history report).
9. Copy of immunization records.
10. A log of recent illnesses, the dates, the treatment plan, and the outcome.
I will look at what articles I took to the pedi that helped get her on board for at least a little while. I know it was an NIMH article, but do not remember which one. Good luck.
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Does anyone have a clue how much an ASO, DNAse test is for cash patients? I would imagine it is "about" the same from lab to lab. I will call the local lab too, but thought maybe someone on here knew already before I get time to call.
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My kiddo does not have the allergies you are dealing with, but she does use Lemon Balm for separation and generalized anxiety. She takes 500mg in the morning and in the evening (to reduce nightmares). She has done really well on this so far. I have been able to turn around several times without almost bonking her, and her nightmares appear to be less. She has sleep uninterrupted for 4 or 5 nights since we started this on the 1st. She even stayed outside and played by herself for almost 10 minutes while I ran into the house and grabbed a few things.
I am hoping to get her off the Zoloft soon, but we are going to see doc Rao first before I change anything else.
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I try not to use too many abbreviations, but if you haven't caught it - there is a thread pinned to the top of the forums that defines some of the common abbreviations that are used. Might be helpful.
I would imagine she is referring to text speak more than common medical acronyms. I am not sure though.
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Do the pills have a bad taste? I'm wondering if my daughter would prefer these, she really dislikes have to take the liquid every evening.
If swallowed whole or just cut in half, I have not noticed any flavor. They have a thin coating on them. If crushed, you will not likely find anything to mask the bitter flavor of them.
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The Saving Sammy website has a provider list. Here is the saving Sammy provider list: http://www.savingsammy.net/providers.php
Here is the thread on ACN for PANDAS providers: http://www.latitudes.org/forums/index.php?showtopic=5023
There is also a PANDAS network site with some provider lists as well.
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I have tried greenstone, warrick and sandoz in the azith tabs. All seemed just fine. The FDA requires generics to be within a +/- 5% strength of the brand. If you have a preference, you will have to inform the pharmacy in advance (24hrs usually) and ask them to order the name you want. As long as you have insurance, the cost will remain the same. If you are a cash customer, you will not notice a significant difference, but maybe a slight difference. The pharmacy can tell you how much in advance of ordering it how much it will be. I worked in pharmacy for 20 years as a licensed technicians, and if your pharmacy is unwilling to work with you in this manner, you really need to find another pharmacy. I prefer independent pharmacy over chains as they are more likely to work with you, but with that said, I use a chain right now that is awesome with working with me, so my statement is very generalized.
Azith and IBU are fine together, but make sure they have food in the tummy. We used IBU daily for about 8 months during a really rough spot. Of course, long term is not preferred, but if it is needed, then it is needed. We are tinkering with homeopathic anti-inflammatories/ABX now to see if we can get off traditional IBU and ABX. For the IBU we are using lecithin, omega 3-6-9, and propolis caps. Kiddo just had her tonsils out as well and we did not reinstate the IBU after the pain was no longer an issue. So far, so good.
Yes, dilated pupils are one of the symptoms of PANDAS.
Thanks for the info. You mentioned "tabs", right now they are giving my daughter liquid form of zith...for older children can they get it in other forms?
Azith comes in liquid, 250mg tablets and 500mg tablets. The tablets are fairly small. You can ask your pharmacy to show you one for size, but I would say they are the same size length as an IBU caplet, but a little thicker in the middle. The color, shape and size will vary slightly based on the manufacturer. The tablets can be broken, cut in half or quarters to accommodate varying dosages. The tablets are bitter, nasty so even though can be crushed, do not try to get those with idea of masking them. Pudding and ice cream still can not mask the nasty, bitter taste of a tablet.
My kiddo hates all meds liquid regardless of flavor, so she "self determined" to swallow pills at an early age (6-7yrs old). She just refused liquids and requested pills when possible, so I tried it and she was fine with almost all sizes of pills that early on. Now she can swallow anything.
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I have tried greenstone, warrick and sandoz in the azith tabs. All seemed just fine. The FDA requires generics to be within a +/- 5% strength of the brand. If you have a preference, you will have to inform the pharmacy in advance (24hrs usually) and ask them to order the name you want. As long as you have insurance, the cost will remain the same. If you are a cash customer, you will not notice a significant difference, but maybe a slight difference. The pharmacy can tell you how much in advance of ordering it how much it will be. I worked in pharmacy for 20 years as a licensed technicians, and if your pharmacy is unwilling to work with you in this manner, you really need to find another pharmacy. I prefer independent pharmacy over chains as they are more likely to work with you, but with that said, I use a chain right now that is awesome with working with me, so my statement is very generalized.
Azith and IBU are fine together, but make sure they have food in the tummy. We used IBU daily for about 8 months during a really rough spot. Of course, long term is not preferred, but if it is needed, then it is needed. We are tinkering with homeopathic anti-inflammatories/ABX now to see if we can get off traditional IBU and ABX. For the IBU we are using lecithin, omega 3-6-9, and propolis caps. Kiddo just had her tonsils out as well and we did not reinstate the IBU after the pain was no longer an issue. So far, so good.
Yes, dilated pupils are one of the symptoms of PANDAS.
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I recently had to fill out my daughter's medical history on a website for her T & A so the nurses could review it. I was initially not thrilled with the information being on the web, but I have thought about it a lot now, and went ahead and filled out the one for personal use as well. My hubby is not very medically literate and one of my big fears is that should something happen to me, he would struggle to pull all of kiddos medical records and important information together in an already stressful time, that would not be an ideal situation. I have a book labeled important information for kiddo, but it is not as inclusive as this site is. I have grown to like this web medical records idea as I can update it and have it all in one place. It is easy to print out to take to new docs appts also. If I forget to bring this to an appt, I can use the web to access it and they can print out in their office as well.
Here is the website: https://www.onemedicalpassport.com/lobby/lobby.asp
I went ahead and filled it out, then copy and pasted it into a text document so I can update it and have it without web access as well. It was not a smooth transition from web to text doc, but with a little tweaking it came out just fine.
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My son's PANS started after a flumist vax. Two days later, to be exact. What most here have found and I, in particular, is that you will get little to no help from your pediatrician. My son sees a PANS expert and I have found a biomedical doctor locally to help. Be prepared for a long road ahead. This started in 2009, when my son was 5. It took us a year to figure out what was wrong with him , find an expert and get the proper diagnosis. Today, after several years of taking antibiotics and having IVIG twice, I cannot say he is cured but he is recovering and doing well........until the next infection. It's been a long road. Find yourself an expert to work with now. You are at an advantage of having discovered this so soon. Also consider seeing if your child qualifies for the NIH PANDAS trial.
Thank you. Where do I find out more information about this trial?
NIH study: http://clinicalstudies.info.nih.gov/cgi/detail.cgi?A_2011-M-0058.html
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I am using Lemon Balm 500mg in the morning and the evening for my daughter's anxiety. It has helped her a lot so far, we started it on the 1st.
We do not have a lot of OCD, but here is a google search of homeopathic items for OCD: My link
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Hi,
I have posted one other thread, about a particularly perplexing form of headache.
Well, I wanted to elaborate more, and ask for other people's stories. For several years I have been having that strange headache, which involves a flulike sort of neck tension and a sort of electrical/"zappy" feeling in my head. Various things could bring it on, from too much caffeine to sleep deprivation to just a general flare-up in my symptoms. I was diagnosed with Lyme in 2002, and treated with about 6 years of antibiotics, but peripheral neuropathy and some nonspecific mood symptoms like irritability remained, along with the above-mentioned bizarre headache, which emerged around 2008 or so (i.e. *after* I had been off antibiotics for several years). These gradually got better with various supplements and mere time for the body to recover.
On the other hand, about a month and a half ago I had a stressful experience with a therapist, with whom I didn't get along and who in some way suggested I was "crazy". I stopped seeing him, but until I had a chance to see a different therapist who reassured me, I was stressed out and had a week of insomnia. In that week, the headache also flared, to where it was rather a constant thing. Shortly before I resolved my emotional stress with the new therapist, I went on a benzodiazepine temporarily for sleep. The first night of taking this, despite taking a rather high dose, it took me a long time to fall asleep. Even when my emotional anxiety had dissipated, it felt like part of my brain, namely the area near the base of my brain/top of my spine from which the headaches seemed to be radiating, stubbornly refused to switch off, even as the rest of my brain was trying to sleep.
Once resolving the psychological stress, which was ~2 days after starting the benzodiazepine, I tapered it to nothing over 2-3 more days. So, this was a very short course. A few days later, the insomnia/headache comes back, without a new emotional trigger. I eventually end up going on another benzodiazepine for about a week, then switching back to the first one because that didn't work. I was only on the full dose of each for three days, but I am having serious trouble quitting the benzo already. The problem is, every dose reduction causes this headache to return, triggering several days of insomnia, even though I have had period of 5 or more days of normal sleep in between. My doctor (who is not a psychiatrist, but a general practitioner with knowledge of mood disorders) has tried giving me other non-habit-forming medications to try and help me discontinue the benzo, but aside from some success with gabapentin, nothing helps better than OTC sleep aids, which still don't help much when in a "flare".
I really feel, given my history with Lyme and the headaches, that it is counterproductive to treat this primarily as a mood disorder. I feel it much more likely to be a neurological disorder with mood manifestations, than a mood disorder with neurological manifestations. My mom (who I live with) seems in general to disagree, and given that I don't have a full-time job, I don't have the money to run around seeing neurologists. Plus, even if I did, I fear that they would not find anything wrong, that any damage to my nervous system is too subtle to be seen by tests.
So I'm wondering, other people who were diagnosed with PANS (or Lyme) as adults, what was the biggest clue that what you had wasn't a "mere" psychiatric or mood disorder? What path did you have to take to get treatment beyond antidepressants/anxiety meds?
Does wind on your face trigger a headache?
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An accupuncturist I saw used propolis for her kids but said anytime it was strep she would use antibiotics.
My DD has PANDAS/Lyme/Myco, I am using herbal anti-microbials in addition to Rifampin & Zith and hope to switch to 100% herbals ovber the summer. I am using Samento from Nutramedix and am looking at adding either Cumanda or Banderol. The Samento seems to have helped but I have not tried it without the abx yet.
My hope is to use exclusively natural for prophylactic and prevention, but traditional abx if an actual infection arises. So far, I am happy with the propolis caps. They are the most recent addition, and this combo has help to get my giggly girl who sleeps through some of the nights back for the greater percentage of the time. We have very few emotional liability issues any more (of course with onset of puberty, I am not expecting complete emotional harmony these days
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Kiddo has trouble sleeping when gut yeast seems to be problem. When I give or increase her probiotics it seems to resolve after a few days to a week. She gets hyper/wired almost like manic and cannot sleep.
I have been putting her to bed lately with her light on and her door cracked open a bit allowing her to read until she falls asleep. This, with abx, has solved most our sleep anxiety issues. After she falls asleep (about 20 minutes), I turn off the light and close the door and she is fine with that.
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Hi,
I am new to this site. My 5 year old was diagnosed with PANDAS last year (an awful year) and has been on prophylatic antibiotics for 6 months. It is controversial to keep kids on antibiotics for so long and I am fearful that the strep/bacteria will become resistant to the antibiotics and then what... After doing a lot of research, I have been trying golden seal and olive leaf extract 2 x per day and probiotics in the middle of the day... Unsure yet how he is doing... I am curious about if others have tried natural antibiotics and with what kind of results. Sometime I feel so scared and hopeless... Always waiting for the shoe to drop... Thanks.
Have you read Saving Sammy yet? He was on abx for several years. I read one site that said kids with PANDAS should/could stay on prophylactic abx until they are 21, but I am trying to get my kiddo off them as well.
Many medical conditions require long term abx. Rheumatic fever, MS, etc..... I do not know about now, but ten years ago it was not at all uncommon for kids with moderate-severe acne to be on abx for years, which is one reason I get frustrated when I see that some kids here cannot get abx with severe symptoms.
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I have my daughter on Olive leaf extract, Propolis capsules, green tea capsules, and coconut oil. She is doing pretty well on these to the point I am going to try to take her off her abx soon. She is much more stable with these added than before I added them, so I am hoping to slowly remove abx successfully. She just had a T & A as well, with a positive culture for a bacteria that is rare in the tonsils, so I am waiting a bit longer to wean her off abx.
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One option is to try the cephalexin for a while (maybe 14 days) and have his nose re-swabbed. If the swab shows improvement, then you could consider weaning off the lovan to see what he is like without that.
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Here are a few articles with symptoms and treatments. There are both pharmaceutical treatments and homeopathic treatments, both of which also include dietary changes:
http://www.drlwilson.com/articles/candida.htm
http://en.wikipedia.org/wiki/Candida_%28fungus%29
http://www.livestrong.com/article/28057-intestinal-candidiasis-symptoms/
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Hi -
I want to explore a new avenue that I know nothing about. How do you test for yeast? What type of doctor should you go to? What are the symptoms? What are the treatments? Any and all info is helpful. Thanks in advance!
From what I have read, I believe it tested with a stool sample. While in the PANDAS and PITAND main area, go to the search forum tool and type in "yeast test" and some relevant links should pop up. If you have trouble with doing this let me know and I can walk you through it.
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Thanks Kathy and Mayzoo, I think I will try to get some tonight and use it with both of my boys. Did you see an improvement w/in a day or 2 or does it take a while? Thanks.
Your welcome. Improvement noticed within a day or two. The anxiety seem to abate a bit the first day and the ensuing independence started improving around 2-3 day and continues to improve thus far. She has been on this since March 1st.
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Our daughter's motor/vocal tics started at 7 years. During August of that year she had her MMR booster, TDap booster, got bitten by an insect and reacted with a large rash. Her physical lyme/bartonella symptoms started 4 months after she turned 10. Shortly after that I noticed the buds on her chest starting to enlarge.
My DD10 has buds on her chest enlarging now. What is that a symptom of?
Pubic hair, growing breasts and even starting menstrual cycles around the age of 11 is no longer uncommon.
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Were using 300 mg once a day, he weighs 133 lbs, six foot tall.
He was backsliding last week so I took him off of it this week just to see if it makes a difference.
He seemed more tired thsn usual. I have tried it, it did not make me tired.
After this week we will try it again. He took it for 2 weeks and it did seem to help with anxiety.
Nevermind. I misread this as a buspar dosage......sorry.
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Can you take lemon balm with other meds? My son has been taking buspar for the past year. We are up to 40 mg and I spoke to his Dr today. He said I can go as high as 60 mg but my inclination is not to add psych meds if I don't have to. Just recently got him off celexa but his anxiety got so bad (more of a social anxiety) that I added 10 mg of celexa to take the edge off.
Kathy N, can you share your dosage info and your childs weight? Thanks!
Some meds yes, others no. Here is a good link to research homeopathic remedies with. It is not all inclusive, but it is a start: My link.
I am giving kiddo 495mg caps by Natures Way (http://www.amazon.com/gp/product/B00020HQU0/ref=oh_details_o00_s00_i00?ie=UTF8&psc=1). Kiddo weighs 57lbs. She is taking it in the morning and at night because we have nightmare issues I am hoping it will keep under wraps. So far so great!!! She has allowed me to go to the bathroom alone several times, she has gone to bathroom alone several times and she is staying in the house when I go outside some times or staying outside when I go in for a short period. The separation anxiety appears to be calming down a decent percentage so far. It is not gone completely, but it is way better. She has also slept through the night several times this week.
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Wanted to post a quick update, we have an appt on the 4th of April, but despite BCBS's website stating Doc Rao accepts BCBS, they do not accept that insurance any longer. They may again some day, but not for now. Of course, we will file after the fact, but just in case anyone else was looking and has BCBS, I wanted to correct my earlier statement that he accepts that insurance.
Also, I informed the receptionist on the phone that kiddo would have to get her blood work done outside their facility or she would never step back into their facility, and they did not seem to have any problem with that.
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Going to see new immunologist
in PANS / PANDAS (Lyme included)
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Thanks for starting this btw, in making my list for you, I figured out a few things I was missing in my packet as well
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