colleenrn

Karen, Yes, my kids have PANDAS flareups with any type of strep. Years ago "they" were saying that it coud only be strep A, which I came to discover is just not true. When my kids were having flareups and we did tests for just strep A, we would sometimes get positives and other times negative, yet they would respond to antibiotics. Once I knew to do upper repiratory cultures, differnt results started coming back. I am pouring over all my old labs right now and this is what I have found so far: 1. beta hemolytic strep, NOT group A 2. beta hemolytic strep, group B 3. beta Streptococcus NOT groups A, B, C, F, or G (feel like I am singing the ABC song....) **This result was for ME...I had myself tested b/c kids were having flareup. Three years earlier, my daughter tested positive for the same strep, yet my doctor reported a negative result to me, so she was never treated. The same day my son tested postive for strep A, was treated with penicillin, yet still had strep 2 weeks later. I know now that I missed a lot of strep b/c I relied on the throat culture and did not realize it only looked for strep A. Colleen

I was wondering if anyone knows how a child may react if they have Lymes (and don't know it yet) and they take a month of a steroid taper. Do you know what symptoms you may see? TIA. Colleen

It really looked and sounded like strep to me. You can get negative throat cultures when you have strep. Do you remember if they vigorously (not softly) swabbed both tonsils and the sides of your throat? And how long did they grow it out? If they were doing a straight throat culture they are only testing for strep A. You need to do an upper respiratory culture (still just a swab of tonsils and throat) but it detects other streps. Could that be what is going on? If you are not sure which test they did you could call them and ask. We used to get negative throat cultures when I knew my kids had strep. Then I learned to ask for upper resp. cultures and sure enough, we got positives for all different types of strep. Ugh... Nothing ever seems straight forward and easy, does it?... Colleen

I completely agree with you that with a rise of ASO from 254 to 599 definitely needs antibiotics. Do you think you would have any luck in getting antibiotics if you called back today and told them he now has physical symptoms (sore throat, whatever) I am an honest person, but this is ludicrous that parents have to battle to get the needed medication for their children. Physicians shopuold be treating yong children that have ASO's of 599 with antibiotics in the first place. Does he know of the sibling's rheumatic fever. That alone should make him prescribe.

Juliafaith- This is what my sisiter said about her insurance company. Not sure if this will help or not. Colleen I only got one override, that's all most will allow. Ended up paying over 100 per child per month. Dennis' company switched insurance companies, and although there are lots of bad things about ,as long as we get our meds at Rite-Aid or mail order they have been paying for everything. What is the medicine she mentioned? I haven't heard of it. Other choice is to switch med if possible, b/c they would pay for longer use of other antibiotics, just not Zith.

My sister's insurance did the same thing, but she was able to get an overide I think after many calls. I will forward her this post and hopefully she will comment on how she was able to get them to pay. Colleen

If physicians wish to pick and choose their patients they can enter into a specialty. If a physician chooses to never treat children, they could specialize in geriatrics. If they choose to never treat neurological disorders, they can specialize in podiatry, obstetrics, etc.... BUT when a physician chooses a specialty of neurology, yet flat out refuses to treat a patient with a neurological disorder, I personally feel this is absolutely wrong and contradicts the hyprocratic oath. Telling a mom to not bring her neurologically ill child to him, head of neurology, is wrong, wrong, wrong. These physicians ned to be called out. Colleen

What happened to Do No Harm? If a dr tells a patient, "your child need antibiotics" yet does not give them antibiotics, they are doing harm. I am not turning this into a bash the doctor thread, but quite frankly, my patience has run thin. I don't see how a physician can justify that to himself or his patients. Colleen

So Gilbert confirmed a diagnosis of PANDAS and confirmed the need for antibiotics, yet won't prescribe them himself. So what if that mom cannot get antibiotics from her pediatrician? IMO, it then becomes malpractice. Dr says kid needs antibiotics. Dr. won't prescribe antibiotics. Child has untreated strep and possibility of dangerous, even life threatening outcome. Then what? Who takes responsibility for that child then? Colleen

Gargling with warm salt water before and after you eat may help a little bit. It helps to decrease inflammation which should reduce the pain a little. Colleen

Thank you for posting! I would like to know of few things: 1. When they said they "took duplicate throat swabs simultaneously" did they mean that literally? B/c if so, they did not get a good sample. Putting two swabs together does not allow each swab to collect the best sample. They should know this. And, did they vigorously swab both tonsils each and every time?(sometimes one tonsil cultures positive while the other cultures negative) 2. How long did they grow it out? If it was not grown out for a full 72 hours it could be a false negative. 3. Did it occur to any of the clinicians that the throat is just one place that strep can live? Did they search the child's skin on a regular basis for any signs of strep infection on the skin (impetigo)? Did they do regular perianal swabs? Did they look for strep in the gut? Did they do sinus xrays to look for strep in the sinuses? How would they know if the strep was in the adenoids (can be in adenoids and not tonsils)? When study said, "Remarkably, three of the six observed hits occurred in the same non-PANDAS case, an 11-year-old boy diagnosed at entry with TS, OCD, ADHD, and generalized anxiety disorder. At his baseline (entry) assessment, no association between prior GABHS infections and tic worsening was documented. At each of these exacerbations, his OC symptoms increased, but there was no sudden increase in his YGTSS, Multidimensional Anxiety Scale for Children, or Child Depression Inventory–Short Version scores.it made me really wonder if that child has PANDAS (TS, OCD, anxiety, and ADHD). This child was in the non-PANDAS group. Colleen

Could it be Fifth disease? That also begins with low fever and cold symptoms. Colleen

I hit reply button too soon! I meant to add that this info about basal ganglia and the internal bladder schincter is in reference to Parkinson's Disease (PD), but I think this is what is happening with PANDAS kids when they have the urgency/frequency. Colleen

The normal process of bladder filling proceeds in silence as the bladder's walls become distended. The individual has no conscious perception of the process until the contents reach around 1,000 cc (one liter). At this point, the bladder starts signaling to the brain that the time for emptying has arrived. The brain - consciously now - keeps the bladder from emptying until the person has found the appropriate location to void. Once all is ready, the brain gives the go-ahead. The bladder contracts while at the same instant, a system of sphincters that have kept the bladder closed relaxes. A network of nerve centers including the basal ganglia insures this perfect timing, this synchrony. And it is in these basal ganglia - located deep in the brain substance - that the central malfunction of PD is located. Specifically, the basal ganglia are part of the connections that allow the brain to keep the bladder quiet while filling. In PD the malfunction in this part of the circuit results in a bladder that contracts prematurely at low amounts of urine, much lower than 1,000 cc. This condition of unstable or irritable bladder is known as detrusor hyperreflexia, named for the muscle that contracts the bladder wall. Such premature contractions are not strong enough to directly cause the bladder to empty but create enough signaling to the brain to create a sense of a strong urge to void. Enter the symptom of urinary urgency, a sensation that a normal person may only feel if she or he had not emptied the bladder after many hours. The patient rushes to the bathroom only to empty a very small amount of urine. Since the process repeats itself over and over the visits to the bathroom become numerous both during the daytime - urinary frequency - and at night - nocturia. Urinary urgency can become so strong that if the PD patient - already burdened by slowness of movement - fails to reach a bathroom on time, she or he suffers an 'accident', something we call urge incontinence. All of these symptoms represent a abnormality in bladder filling and urologists also know them as irritative symptoms. http://www.pspinformation.com/disease/parkinsons/bladderproblems.shtml

I thought I should post this for families who are considering T&A or may be for the future. The guidelines have changed and were just posted in this journal. It seems to me that it may be harder to get a T&A for your child. I am NOT liking these new recommendations at all. http://oto.sagepub.com/content/144/1_suppl/S1.full What I thought was interesting, and not in the best interest of children with PANDAS, is a few of the changes such as needing more infections to do a T&A. Also they are recommending not giving any perioperative antibiotics. This link is an article that talks about these new guidelines that just came out this week. http://www.post-gazette.com/pg/11006/1115870-114.stm#ixzz1AfLmBBbK "Under the new guidelines, children who are candidates for surgery for recurrent throat infections should have at least seven documented infections in one year, five infections in each of two consecutive years or three infections in each of three consecutive years. Moreover, to be diagnosed with a bona fide throat infection, the child should have a temperature of 100.9 degrees Fahrenheit, a white covering over the tonsils, enlarged lymph nodes in the neck or a positive test for a strep throat." Colleen

I just feel that there is so much to learn by studying us parents who had/have PANDAS/PITANDS. My PANDAS began around 5 or so. I mainly had tics and anxiety- do not remember any OCD. When I was 6 I went through a period of anorexia- I refused to eat anything for over a week, but someone began eating again. My theory is that during that time of refusing to eat, I must have had an ear infection or strep, was treated with antibiotics, and the symptoms subsided. I clearly remember having an increase in tics that had seemed to go away for a while (Don't remember how long) when I was in 8th grade (age 13) and part of 9th grade. For me, it seemed to "go away" by age 15 except for minor tics when i am sick and probably also when I am stressed. I wrack my brain trying to rtemember in case it would help my kids, but I did not even know I had it until 9 years ago. I also had multiple pneumonias, ear infections, strep, mono. My sister has3 kids- 2 are definitely PANDAS and possibly the third child also. My brother has 2 children who get strep a lot and at a very early age, but so far they don't seem to have PANDAS (ages 3 and 8). My mom had scarlet fever as a child and rheumatic fever as a young adult (18 or 19). I want PANDAS researchers to research me, to research any parent who had PANDAS b/c I think there could be so much learned from us. I tried to get my old medical records from my pediatrician and they had already been destroyed. I will offer myself up for any testing if anyone knows of any genetic studies going on or any physician interested in looking into parent's histories. Colleen That is very interesting that Dr. K thinks it is passed by mother. My husband is ADHD (NEVER diagnosed or treated...) so I was not 100% sure if it all came from my side. I guess we both could have had PANDAS, with his symptoms primarily being ADHD symptoms.

Whoops. Meant to hit review, but hit send instead. I was trying to make a poll of how many parents of children with PANDAS also believe they may have had or still have PANDAS. Not sure what happened with the poll- guess I need to figure out how to do it correctly. I didi not realize until I was 31 years old that PANDAS is what I suffered with from age 5 or 6 until the age of 14-16. TIA. Colleen

My 4 children have PANDAS. It was not until my oldest child was diagnosed with PANDAS in 2001 that I realized I had PANDAS as a child. I still deal with some issues (minor tics when I am sick)and some minor anxiety. I am wondering how many of us parents had/have PANDAS. IMO, it has to be a large number. Colleen

But is she on the zithromax also to prevent her from getting strep, b/c if so, that dose may be too low for that also. Coilleen

That dose is way too low for strep! For a 45# child, they should be given 250mg/day to treat strep. She is getting less than half of that dose. Is the presciption for 5 days or for longer? Colleen

The optimal dose for zithromax to treat strep is 12mg/kg/day (dose for other infections like ear infections may be lower). SO, for 115# child, that would be 627mg/day. Physicians are really not giving enough zithromax for their patients with strep. The "standard" dose given is a measly Z-pack, which for a child may mean only 250mg/day or less for only 5 days. For adults, the "standard" dose is only 500mg the first day and 250mg for the next 4 days. This is not enough for strep treatment and I do not understand why this is happening. The zithromax insert that comes with the mediciation clearly states 12mg/kg/day for strep. Determining how much zithromax to give as a prpophylactic dose (after you have been giving a treatment dose for a sufficient lenght of time) varies. My kids have been on a little over two years of zithromax 250mg/day. When they have a big flareup, I increase it to 500mg. I would feel comfortable putting my daughter (she is 14 and weighs about 125) on 500mg of zithromax for at least a month, if not more. You can be extra careful and do liver functions if yo want o rif that wouyld help persuade your physician. Another option is staying at the 600 every other day and adding another antibiotic, but if it were me, I would increase the zith to 500mg/day for a month. Colleen

Yes, you can take Zithromax and Augmentin at the same time. My daughter is taking both right now. She also took both in the past when she got an ear infection while on Zithromax- we added Augmentin. Colleen

Thanks for the replies. I am still a little nervous about the week at 80mg, but I want her to get as much out of this as possible. I am considering giving her 60,40, 20, and 10. I just wanted to hear that someone had given that large of a dose to their child. When researching prednisone doses in general, it seemed like 60mg/day was the upper limit. I guess if she had a bad reaction to 80mg today, I could switch it to 60mg tomorrow. It was prescribed by Dr. T and I do trust that he would not give her that dose if it were not needed. What to do... Colleen

I am going to start my 14 year old daughter tomorrow on a month long steroid (prednisone) taper. She weighs 130 lb. The dose prescribed is week #1 80mg/day week #2 60mg/day week #3 40mg/day week #4 20mg/day I have read on here that a lot of people begin with the dose of 60 mg/day for the first week and I am wondering if 80mg is too high of a dose. TIA! Colleen

Nice to see yo here too, or not, too. My kids are doing sorta OK with flareups here and there. The boys are mostly adhd type symptoms and irrtitability with occasional minor tics also. It is my oldest (14 year old daughter)who has the ocd/anxiety/tics/fear symptoms who is in a flareup now. My oldest 3 have been on 2 years of daily zithromax 250mg and doing much better than 2 years ago. The 3 oldest had T & A, and the youngest will most likely oinnext year. He is on daily augmentin 250mg BID since May. he was very very sick in May and it all started with strep. Before May, he had strep multiple times. Since daily Augmentin he has been much bettter- still flareups, but bettter than without Augmentin. My 14 year old was not doing well on only daily zithromax and responded to about 40 days of Augmentin xr 1000mg BID (Saving Sammy dose). Two weeks after discontinuing the aug xr but stilll on daily zithromax, she decompensated. Today we put her back on the aug XR 1000mg BID and see what happens. We will most likely wait a week and if not good results, do a month long steroid taper. She had good results this summer when we did a five day steroid burst. On a scale from 1-10 with 10 the worst, she is an 8, which is bad for her. I am just going to give you my unsolicited advise on zithromax. I think perhaps your daugher has an active strep infection now due to only 5 days on zith and only QD augmentin. This has happened with my children. If it were me, I would get her on a daily good dose of zithromax for an extended time- at least 3-4 weeks. It can take that long, at a treatment dose, to get to the strep. If it is intracellular right now, the augmentin will not take care of it. Yo could present it to your physycican that you want to try this based on other PANDAS kid's experiences and also you want to try that before going to any neuroleptics. How much does she weigh? I ask this b/c even though the "standard" dose of zith is 250, that is not always enough depending on their weight. My daughter has responded very well in the past during a flareup when she has been exposed to strep-not sure if she had it but think so, to an increased dose of 750mg of zithromax for a week. Good luck. thinking of you. Colleen