Mayzoo

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 .

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.

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.

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.

I would imagine she is referring to text speak more than common medical acronyms. I am not sure though.

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.

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.

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.

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.

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.

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

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

Does wind on your face trigger a headache?

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 ).

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.

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.

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.

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.

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/ http://www.thecandidadiet.com/candidasymptoms.htm

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.

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.

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.

Nevermind. I misread this as a buspar dosage......sorry.

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.

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.