Mayzoo

My kiddo is heterozygous for A1298C and she takes 100mcg of methylfolate and 1000mcg of methyl B-12 sub-lingual every day. I finally had to put her on a multi that has no folic acid, and we have seen improvements since then. Kiddo is 63lbs.

My kiddo had her T & A February this year. She was in a significant amount of pain for 7-8 days. The doc gave an rx for lortab (hydrocodone/APAP) liquid with a refill and he wanted us dosing her EVERY four hours regardless of what her pain level seemed. He wanted us to wake her up for a dosing as well. We dosed only as she needed the lortab, but did every four hours IBU and alleve at night. She needed the lortab almost every four hours while awake for the first 5 days, then she started not having as much pain. We kept ice on her throat for the first day (on and off of course), then had an ice bag prepped for every morning after she woke up so it took the edge off until the meds kicked in. I also crushed a popcicle to spoon into her mouth until the meds kicked in. After the meds kicked in, she did pretty well so long as we did not let the meds wear off. It took almost the full 10 days to get her back to eating normally. She did not stay in the hospital overnight, but my kiddo sleeps and throws up for 24 hours after any anesthesia, so it was the next 24 hours that was pretty rough for her. I doubt she remembers much of the first two days.

We started Virastop2x 1/2 capsule twice a day on an empty stomach on September 4th. So far so good. Some improvements, but I am going to increase really slowly. She is whispering more (was not talking at all for about 2 months). Her energy level seems a bit higher. I have not started her on the lysine yet. She is a go very slow with all her treatments kinda kid. She is still on amantadine as well.

Thank you .

I agree pharmacies should be more careful, but my main complaint is that the FDA is clearly aware of these issues and continues to allow these companies to ship into the US. I have no idea how hard it would be to stop these companies, but it seems it would be worth the effort. When I scanned through the letter, yes it is from 2011. It mentions that there have been issues at the '05, '07, '09, '10, and the '11 inspections. It also states that they have apparently falsified their documents even when they did state they resolved issues (pictures later showing plates that they had stated they destroyed). They have also had tests they ran that came out fine, and then soon after the same tests run by the same people in front of the FDA agents show serious problems. Their batch records are incomplete or non-existent. I would not be concerned with one or two old complaints, but this is moderate to serious issues at five different inspections since '05, and evidence that they are not resolving any of the concerns the FDA has. Why the FDA continues to allow them to ship meds in is beyond me. Maybe most or all their meds are fine, but since kiddo just got back to a decently good place and there are so many other generic companies, I am unwilling to take chances with her health.

Take with his doc and see he could have giardia or some other water born infection. Hubby had it, and it was moderate to very intense gut pain that resolved with abx and metronidazole. http://www.cdc.gov/parasites/giardia/

It appears Maryland has nixed *all* direct-to-you genetic testing. You can get the tests ordered from a doc (probably very expensive), or I believe you can have a relative outside the state of Maryland order and send back the 23andme test for you. This could be tricky with what I recall as a 15 day time restriction after you spit in the vial. You may be able to drive outside Maryland and just mail it yourself. That would be faster. I do not recall an address being needed to register the kit, but if one is needed, you would need to use the address of the person who ordered it for you. Good luck.

My daughter's pharmacy filled a partial fill of her Augmentin XL with Aurobindo a few days ago. They are based in India and are a company I had never heard of, so of course, I did a search about them. Here is one FDA laundry list of issues spanning from '05 to '11 with no indicator the issues were ever resolved: http://www.fda.gov/iceci/enforcementactions/warningletters/2011/ucm256861.htm. I am sure there are some good companies in India, but kiddo is just now getting back to a "good place" again, and I simply will not take any chances like this. Kiddo had not taken any of the six pills, and I took them back to the pharmacy. They filled all of them in Teva after I took them this article. Please be alert to what generic brands your kids are getting, and use the site I posted to check for FDA warnings against a company you may not be familiar with. Aurobindo's issues are broad in scope and vary in severity, but all are listed in the above article.

We were told selective mutism as well, but this was by a neurologist who stated her behaviours were "behavioral issues" regardless of what she presented with.....100% of the time, and no I am not exaggerating. If you look at my siggie, you will see it is VERY unlikely every issue she has ever had was behavioural. Some yes, all no way. We are with an immunologist now, and he says it is not common, but he himself has a handful of patients that have whispered since onset of symptoms. I hope if you try it, you are as pleased as I am right now. My hubby was able to have a two way conversation with his child on the phone for the first time in almost two years . He is thrilled so far too.

My kiddo spoke in a normal voice until PANDAS. Then she stopped speaking for three months, and has whispered for the last 18 months. Usually so quiet, we struggle to understand her and frequently she has to write down what she is trying to say. We have been trying for 18 months to get her to talk louder, much to everyone's frustration. I decided recently to try a new approach and so far so good (we just really started this morning, so too soon to tell, but I am very hopeful). I bought a personal voice amplifier much like what a speaker to a crowd uses. Now, we have to break some really bad habits acquired over the last 19 months and learn some new rules. But, I am so far thrilled! I can finally hear my kiddo without being an inch from her mouth. I am hesitantly VERY hopeful. It was 21.00 total, and I ordered it from Ebay via China. It took about 8 days to get here. I could have gotten one from the US for about 35.00, but I figured I could save over a 1.00 a day since I have already waited 18 months to be able to hear my child talking again. Here is a link to what we bought: http://www.ebay.com/itm/Red-Mini-Waistband-Portable-PA-Voice-Amplifier-Booster-Smile-Size-FM-Radio-25W/121148781993?_trksid=p2045573.m2042&_trkparms=aid%3D111000%26algo%3DREC.CURRENT%26ao%3D1%26asc%3D17369%26meid%3D1353306841241413515%26pid%3D100033%26prg%3D8089%26rk%3D4%26rkt%3D4%26sd%3D171046008813%26

Have you considered a kids version of encyclopedias? The two sets we have are written in a more lively, story based manner than the boring adult ones. I have The Young Children's Encyclopedia by Encylopedia Britanica. I also have The Golden Book Encylopedia by Golden Press set that is a little less story based, but not as dry as adult encyclopedias. Our sets are fairly old, but much of the information is not dated. What is dated, can be corrected with little effort. My kiddo loves to read these. Also, I am trying to get my kiddo into reading free kindle books on a laptop computer. Kindle has a free PC app and a lot of free books on amazon. http://www.amazon.com/s/ref=nb_sb_ss_i_2_15?url=search-alias%3Ddigital-text&field-keywords=free+books+for+kids+9-12&sprefix=Free+books+for+%2Cdigital-text%2C360

Minocycline, along with the other cyclines, can cause teeth to discolor. Something to do with altering the saliva chemistry and causing yellowing or browning of the teeth if they are not brushed really well (sometimes even if they are brushed well). A good, regular dental cleaning usually gets the stains off, but wanted to mention it.

IF you do decide to get it, I recommend you go with the injection---not the nasal flumist. The flumist is a live virus. The injection is the "killed" virus. My kiddo has never had a flu shot, and has had the flu one time. It did not seem to aggravate her PANDAS at that time, BUT I bet that is kid specific.

Unlikely this will help, but when I was in school (AP kid, but not a pandas kid) I found that taking notes while reading my texts helped me to feel like I was not missing anything. I could condense a chapter down to a few pages of notes this way, and use them as a study guide for a test. This served me well for college also. I used a linear format for clarity as well. I. Main topic A. First main sub topic 1. Minor point a. Detailed point B. Second main sub topic 1. Minor point 2. Second minor point II. Main topic ETC...... Maybe this could help him speed read through, jot down the important stuff he sees, and he can feel more assured that he is not missing or will forget an important point.

Here is what we use: 1 cap a day Healthy Origins with a Sacc B and two Inulin Prebiotics by sun down. Healthy Origins, 8 strain, 30BU, 60 caps for $19.35 and 150 caps for $36.21. http://www.amazon.com/gp/product/B00309ZDS2/ref=twister_B00309S4C4?ie=UTF8&psc=1 "A powerful blend of 8 friendly bacteria strains. Help support a positive balance of micro flora in the intestines. The stomach acid resistant to ensure that the maximum amount of friendly bacteria reach the intestinal tract to exert their greatest benefits. Stable at room temperature." Lactobacillus acidophilus (La-14) 12 Billion CFU's † Bifidobacterium lactis (BI-04) 12 Billion CFU's † Lactobacillus casei (Lc-11) 1 Billion CFU's † Bifidobacterium breve (Bb-03) 1 Billion CFU's † Lactobacillus salivarius (Ls-33) 1 Billion CFU's † Lactobacillus plantarum (Lp-115) 1 Billion CFU's † Bifidobacterium longum (Bl-05) 1 Billion CFU's † Lactobacillus rhamnosus (Lr-32) 1 Billion CFU's I will read over the other replies and see how ours compares .

We did a test for neurotransmitters that spelled out kiddos glutamate/gaba levels for us. Your doc can order this from probably almost any lab. Our doc wanted to use Pharmasan labs for what ever reason. http://www.pharmasan.com/testing.php?CatID=1&CatName=Neurotransmitters

Any time you log onto a site, your IP address is recorded. You can use a psuedonym, for surface security, but the IP of the computer you accessing from will still be recorded. If you use a library computer or public wi-fi site, then *your* home IP addy will not be recorded, but those options come with public security risks as well. We did all the surface security stuff when we ordered the 23andme. But I use my home computer to access the results, which gives out my IP addy. You cannot avoid all risks, you simply have to decide which risks you deem necessary.

Here is a pretty good guide for interpreting TSH, T3 and T4 all together rather than individually. http://www.patient.co.uk/doctor/thyroid-function-tests

As I understand it: 1. Antibodies go "rogue" and attack the basal ganglia. 2. This attack causes inflammation in the basal ganglia. 3. This inflammation causes most the symptoms we see in our pandas kids. 4. Certain antibiotics have an anti-inflammatory property which mitigates the symptoms we see: http://www.ncbi.nlm.nih.gov/pubmed/12054075 and http://www.aldf.com/Book_Review_on_Antibiotics_as_inflamatory_agents.pdf ABX are used as anti-inflammatories in our kids since our kids also need prophylactic protection from infections, so the ABX are a two for one treatment instead of just using anti-inflammatories.

Information on reading the candida: "Candin® Skin Test Antigen Candin® is the only FDA licensed DTH skin test antigen made from Candida albicans. It is potency standardized by DTH skin testing in humans. The product is indicated in the assessment of immune responsiveness in clinical situations involving the cellular immune system. Intact cell-mediated immunity (CMI) requires a complex interaction between lymphocytes, macrophages and cytokines. Various immune disorders and disease processes can alter the CMI response. These include congenital immunodeficiencies, acquired immunodeficiencies, cancer, malnutrition and viral and fungal diseases. A positive DTH response to Candin® indicates that the CMI is functioning properly. Candin® is frequently used as a control for tuberculin skin testing to rule out anergy as a possible factor in persons who are skin-test negative to tuberculin. For full prescribing information see insert. " http://www.allermed.com/candin/ http://www.healthcentral.com/allergy/tests-6229-146.html http://dailymed.nlm.nih.gov/dailymed/lookup.cfm?setid=634f5c5e-8625-4aa3-baa6-8ab82d5c1afa Information on reading the diptheria/tetnus: http://www.cdc.gov/diphtheria/downloads/skintest-guide.pdf

Probably will not help, but here are a few sites I found: http://improvisedhomeremedies.com/how-to-get-rid-of-impetigo-fast-with-home-remedies-within-3-days/ http://www.apsense.com/article/home-remedies-for-impetigo-get-rid-of-this-skin-infection.html

I live in a tiny town (pop 3200ish) and most everyone at the businesses know my child. Some even know her by first and middle name . Many of the people (non-workers) in town know her. Everyone has been fabulous with her and her issues before and after PANDAS. Lots of folks take time out of their busy days to greet her while we are out, they stop and talk to her and let her touch them. They ask how she is doing and what she has been up to, and many stop to give her hugs. She has more of a "fan" following in town than I do HAHAHAHA. The one that stands out the most right now was a July 2012. My kiddo has social boundary issues due to her autism. She will get right into people's space and look in their cars if she has a chance. We run a small firework stand, and one of the days she was working with me, she ran out to this ladies car. She was looking into the car and rubbing the ladies arm quite a bit when I got out there. I was reminding kiddo how you must ask permission before touching people, and the lady was very emotional. She asked me to not stop kiddo from touching because she felt like she was being touched by an angel. She later told me she had been trying to have a baby for a few years, and maybe kiddo's special touch was just what she needed. I love my small town for several reasons. The biggest would be for the amazing reception my child gets here. No body has been rude to her, and many have gone out of their way for her needs.

Kiddo is currently on Amantadine 100mg for very high rubella titers. I am considering putting her on low doses of Virastop for high coxsackie, hhv-6 and ebv. I want to try l-lysine as well and not sure which I will try first. The immuno is neither excited or hesitant to try them. He feels nothing touches coxsackie despite anecdotal info saying valtrex works.

Wait on the pandas friendly doc's advice for maintenance meds, but definitely retest for strep when the azith is gone. Do not assume it went away with the azith. My kiddo had strep for almost 60 days and she was being treated and retested all 60 days, so keep retesting until rapid is negative, then culture to be sure it is gone.

My insurance does that too, but they only cover 80% of what THEY deem to be reasonable and customary. I just had some work done for kiddo and the charge was over 400.00. The insurance company stated just over 100.00 of that was reasonable, so they will reimburse around 80.00 of the 400.00 meaning I owed 320.00 of the bill. The way to know for sure what they will cover is to call them and ask what do you cover for these specific CPT codes. Then they will tell you how much they believe is "reasonable", and they will pay 80% of only what they deem reasonable (MAC=maximum allowable cost). Out of network labs that you use can charge what ever they want to, and if you agree to the service, you agree to the charge. An in-network lab can only collect what the insurance says is reasonable since they are the ones who agreed to the contract. Good luck. Right now we are not doing the Cunningham because we already had about 5000.00 of lab work recently, and so far, the insurance has agreed to about 300.00 of it. Some is still pending. All the out of network----I called on first with the cpt codes so I would know in advance how much I was going to be responsible for. I do not like surprises when it comes to bills.