Mayzoo

My kiddo's vocal tic shows up when she is more tired. Also, what vitamins, meds, or herbs do you give exclusively around noonish? Maybe some die off from that? We had that for a while, and I just gave some charcoal between noonish meds and night meds and that seemed to help. No advice on tic tamer, but I will read up on it.

What testing was done to determine the primary immune deficiency? He tested her IgG, IgA, IgM and IgE levels. I believe the test name through labcorp is "Immunoglobulins A/E/G/M, Serum"

Some abx need to be 2+ hours apart, some do not. My kiddo is on augmentin in the pm and it is fine with magnesium. Either look it up at drugs.com, or let me know what he is currently on and I can look it up for you. ETA: Here is a quick list of drugs that interact with magnesium: http://www.drugs.com/drug-interactions/magnesium-oxide-index.html Here is a decent interaction checker: http://www.drugs.com/drug_interactions.php

My daughter has very low titers even when she had a confirmed strep infection for almost 60 straight days (positive rapid test every ten days). Her titers were ASO 6 and Anti-Dnaase 86-95. They never rose. Her PANDAS Immuno still states she has PANDAS, not PANS since her problems started with strep. In testing her immune system, we found she has a primary immune deficiency and that explains no rise in titers. The titers are a gauge if high, but not concrete evidence of anything by themselves if they are low.

Kiddo takes magnesium, taurine, and TR melatonin every night and is doing well most nights now. When sleep a problem we throw in a capsule of "sleep relax" by Natural factors. Benadryl is a time tested standard if you prefer traditional meds.

My daughter has a loud vocal tic that I call a "holler". It is just short of a scream of the sound AAAAAHHHHH. It comes and goes and may be gone for weeks to months at a time. My kiddo is verbally delayed. One thing that has helped me cope with it is that about a year ago she began begging me to make it go away. I was a bit baffled why it bother her so much since she was the one making the noise after all. Then I started to ponder at great length, how would I feel if I frequently lost control of my body and it started moving or saying things I could no longer control? As if someone else had taken over my body. And then I pondered, how much more upsetting would this be if I was young enough to not understand at all what was even happening to me. The more I pondered this, the more I realized how very disturbing this tic disorder can be for the person experiencing it and that this is truly beyond her control as who would choose this? Knowing deep down this is out of her control and it really bothers her, helps me cope since what I have to go through is minor compared to what she goes through. We always have generic excedrin on hand to help me cope as well . Now when kiddo kiddo asks about the vocal tic, I tell her sometimes it comes to "visit" her and other times it is "visiting" another little girl or boy. She then knows that she is not the only one with this issue, and I try to make it out like "no big deal" either way. When it is here, it is here. When it is gone, that is great too , but I assure her I love her either way and it is no big deal.

I have not read all the responses yet, but wanted to mention my daughter has very low titers even when she had a confirmed strep infection for almost 60 straight days (positive rapid test every ten days). Her titers were ASO 6 and Anti-Dnaase 95. They never rose. In testing her immune system, we found she has a primary immune deficiency that explains no rise in titers. The titers are a gauge if high, but not concrete evidence of anything by themselves if they are low.

amoxicillin is not a very effective antibiotic when it comes to strep. you may need to try another. If doc will not, make sure you retest after the amox to see if the strep cleared.

We see him currently and have been seeing him since April. In general, we are pleased with him and our daughter's current regimen. You can PM me with any specific questions, and I will try to pm you tomorrow with some generalities.

My b-12 shots are cyanacobalamin, but they also contain other b vitamins as well. Mine contains B1, B6, B12 and d-panthenol (a form of b5). When I give myself a b-12 shot (500mcg of b-12) it tends to make me jittery, but being an adult, I compensate fairly well. What form are you using, what dose are you using (ie 2 mls of mine contains 1000mcg of b-12) and what else, if anything, does it contain?

We opted to not do this test. Kiddo was text book PANDAS, and we had already done about 5000.00 worth of other testing for co-infections. We could not justify another 1000.00 for a test that would only tell us what we and the doctor already accepted as fact. I can see needing the test when the case is not as clear cut as our kiddo was, if you have doubts, or if you are still fighting with a doctor.

Kiddo had 14 of the then 14 symptoms of PANDAS. Her severe nightmares, OCD, vocal tics, separation anxiety, incontinence, aphasia, etc were all sudden onset right after a failed attempt to treat a sore throat. The second abx seemed to treat the sore throat, but the other symptoms remained. We tried a neuro and psych route for three months first before I stumbled onto PANDAS on the internet. After the three months we went to the pedi to get blood work ordered for ASO, and Anti-Dnase and found kiddo still had strep asymptomatically then. It took an additional two months to get rid the strep then, but the symptoms began improving almost as soon as the strep cleared.

I would see how it goes for a week also. One "episode" is not enough with my kiddo to make changes since many, many things affect the onset of a short "episode" like you described. I look for trends over a few days rather than an isolated incident before I make changes. If you have not already started a DETAILED log of changes in meds, supps, behaviours, improvements, episodes, etc...... start one now so you can tell what is helping, what is neutral, and what is detrimental. Keep handwriting samples over time in there too. I would consider adding a traditional probiotic in a week or so as well (if everything is going smoothly). It would need to be taken 2 hours apart from the augmentin to protect the beneficial bacteria.

My daughter's ASO (6) and anti-Dnase (86) are always low even when she was in the middle of a 60 day strep episode. Further investigation showed she is immune compromised, so she does not make antibodies the way she should.

No, you do not come off as defensive . I probably come off as aggressive, sorry. Our insurance pays for autism coverage up to the age of 10 and my kiddo is 11. I guess they figure it goes away or should be "handled" by then...LOL. Traditional medicine has never helped her autism anyhoo, so no sweat off my back there except the doc coding her stuff wrong. Maybe insurance will get better, maybe it will get worse. Either way, it is out of our hands. I spend tons more time on the net when kiddo is down and out. It is an outlet that helps me keep my sanity. She is back to doing pretty well right now :D, but it is raining outside, so movies, nintendo, a few games, school work and net around here today.

Insurance companies spend millions upon millions of dollars lobbying the government in regards to coverage. I do not honestly want to know to what degree they control what is covered as it would likely infuriate me. We have BCBS and they alone spent almost 10 million dollars lobbying with the government this year and this has been going on for decades. In 2006 BCBS spent over 8 million prior to Obama even taking office, so it has little to do with Obamacare. Insurance corruption is one of my pet peeves I no longer really have the time for. Our insurance company does not cover office visits or most labs if that office visit/labs is related to autism (among other dxs). Heck, we pay them almost 400.00 a month to cover only kiddo and she has no vision or dental either . Our immuno incorrectly placed the dx as autism for the first two office visits we had and several of her lab work. We never even discussed autism during the visit. I am fighting with them to get them to cover the office visit that were correctly recoded and then denied again. They want proof now that she needed to be seen by a doctor for starters and then proof that the visit was not pertaining to autism. They may cover them eventually, but I am not holding my breath since this has drug on since April already. Point being, an insurance company covers only what is outlined in the policy, and much of what they do not cover are medically proven dxs, treatments or meds. We are responsible to read our policies and if we do not like what they dictate, then we are to find another company that is more to our liking. In my families case, kiddo is only eligible for one policy based on her dxs. If we do not like what she currently has our only other choice is no coverage at all. In January all the pre-existing stuff changes, and the coverage kiddo has will be terminated since it is only for those otherwise uninsurable due to pre-existing. I worked in pharmacy for 20 years and watched insurance companies buying out drug companies, then stacking their formularies in favor of the companies they themselves owned rather than based on safe, common, or generically available medications. I really do not want to know the complete picture of corruption in the medical and insurance industries in the US. I do not have the energy or time to become that enraged any more.

Internationally a T and A appears to be highly advisable once a PANDAS dx is reached. However, they do go out of their way to state a T and A will not prevent a future dx of PANDAS in a child who is not already symptomatic for PANDAS. In the US, the insurance companies do not want to go back when T & As were common since they do not wish to pay for them. So far as I can tell, it is all about politics and money rather than patient care. The NIH site states they do not recommend it since so few kids are helped by them . "Tonsillectomy has also been considered as a treatment for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection (PANDAS), but only a few cases in which tonsillectomy helped are documented in the literature as case reports, said David E. Tunkel, MD, director of pediatric otolaryngology at Johns Hopkins University in Baltimore." http://www.enttoday.org/details/article/588765/The_Great_Unknowns_Panel_discusses_research_on_pediatric_tonsillitis_ottitis_sin.html "Since the international recommendation for the treatment of P.A.N.D.A.S. is tonsillectomy it should come as no shock to anyone that the insurance industry in the United States is not eager to have a mandate imposed that would return us to a time when tonsillectomy became rather routine as opposed to exceptional." http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain

These articles seem to recommend T & A as a possible treatment for PANDAS: http://www.ncbi.nlm.nih.gov/pubmed/21466900 http://www.ncbi.nlm.nih.gov/pubmed/18817720 http://www.enttoday.org/details/article/588765/The_Great_Unknowns_Panel_discusses_research_on_pediatric_tonsillitis_ottitis_sin.html http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain These do not: http://www.ncbi.nlm.nih.gov/pubmed/23518825 What I gathered is that tonsillectomy is a major treatment option after PANDAS has presented. Tonsillectomy is not a consideration as a preventative for PANDAS nor does a past T & A rule out the dx of PANDAS. My guess is NIMH does not want folks just willy-nilly removing tonsils again for no reason, so they are trying to be conservative in recommending it.

You can buy both "pressure vests" and "weighted blankets". Look on E-bay for sensory items. The weighted blankets supposedly help with regulating sleep as well as providing security. You can buy them in different weights. Ebay weighted blankets: http://www.ebay.com/sch/i.html?_odkw=sensory+items&_osacat=0&_trksid=p2045573.m570.l1313.TR11.TRC1.A0.Xweighted+blanket&_nkw=weighted+blanket&_sacat=0&_from=R40 Youtube video on how to make your own weighted blanket: One article discussing how much weight to use and benefits: http://www.especialneeds.com/benefits-of-using-weighted-blankets-to-help-children-with-sensory-processing.html

Our doc ordered it as well. I received the letter stating it was not covered, but have not received a bill yet. This test was ordered with about 45 other tests, which also are not yet resolved through the insurance for various reasons. This will likely drag on for a while since it has already gone on since April. I have yet to even contact the insurance.

The urine tests will give you a picture of what is going on absorption wise in this moment in time only. The 23andme test gives you tools for a life-long plan. We did both so I could see how her absorption was on her current regimen, and I wanted to know for the future what to look out for as well. For us, my kiddo has a lot of other dxs going on as well, so I wanted to maybe get one step ahead of a possible serious issue if I could. Too many other dxs snuck up on me since the symptoms to those were also part of what she already had been diagnosed with. With the 23andme, I had a tool to look up all the symptoms for what she is at risk for so I can better identify a problem early on rather than later.

I have read up on this method, but fail to see why they would use this instead of checking Ig levels to determine the status of the immune system, but that is probably too general. Since it is for a more specific immune testing, I am now curious what that would be? I have not read up on it a lot, so if you happen to know off hand, please fill me in. If not, I will try to read up on it more later.

BCBS did not pay for the MTHFR gene test. They determined it was not medically necessary as in their opinion it is experimental/investigational. Just an FYI, it depends on your insurance company in case you have BCBS.

Here is the list off Pandasnetwork.org in case your first lead does not work out. I know of one other member here is near you, I will see if she will PM you also. *Dr. Sesgagiri Rao (Leading PANDAS Physician) Immunologist 972-964-7374 Plano, TX will treat more complicated cases involving PANDAS and Autism*Dr. Bruce Russell (Leading PANDAS Physician) Pediatrician 391-794-1930 Port Aransas, TX will treat more complicated cases involving PANDAS and AustismDr. Shreenath Doctor Neuropsychiatry and Clinical Pharmacology 713-524-3399 Houston, Texas

Off topic a bit, but my grandmother's doctor's name was Dr. Death. I would have to change my name!!