thereishope

Some docs still say it is okay to constantly test + for strep if you don't have symptoms. That is isn't true, esp for PANDAS kids. I bet it's the same with staph and PANDAS.

I am currently putting things together to distribute locally to docs, psychiatrist, and psychologists. My goal was ths month and I am hoping I can keep that. I contacted my brother in law who is a surgeon to proof my intro letter. I want it written in a way that will catch attention but not hurt the ego of doctors. I have also contacted the school district about educating their counselors and psychologist and teachers. Waiting for a response. As for fb, there are some PANDAS groups on there but none as active as this. If interested, I can send you links to view. I also try to post on my personal wall info as it comes up. I also try to occassionally visit some OCD forums and scan for posts about children and post about PANDAS to them. If you ever do come across "stories" regarding PANDAS, I try to comment and always add the clause... For more info please visit www.pandasnetwork.org PANADS Network does have a link to this forum.

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Dr Rutter. That's him name. But, let me add, he would not continue proph abs post t and a. But I still got 2-3 months out of him.

nevergiveup, Would you recommend Dr K since he is only about 4 1/2 hours away? MMWG, I'm live in Cinci too. Anderson Township to more exact. I agree there really isn't good docs here for PANDAS. Many docs here refuse to give prophylactic abs. You will probably have to travel. My son is also an ex-patient of Gilbert. Sooner or later you will probably be refered to him. I strongly am against it. I did come across a DAN in Cinci that said she would treat my son with abs, but they don't take insurance and she said it's a few months to see her. But she did personally return my call when I asked qyestions about her knowledge of PANDAS. As for Cinci Children's Hopsital. Gilbert also claimed to have asked Geller if amox would kill strep or if there's a failure rate. Geller said that amox would definitely kill the strep! Anyone who reads this forum knows that is wrong. I just can't really trust that hospital. My son also saw an ENT there for his t and a. he said he had PANDAS patients before. I can look up the name, if interested. It's too early for me to remember it. Anyway, he was very nice, gave prophylactic abs upon request until t and a surgery and performed the t and a.

So, you' know for sure he doesn't have an infection in the sinuses? You've ruled out strep throat? There are other areas it can hide out in..... Forgive me, but what antibiotic was he on and for how long? Would you say he he has plateaued in PANDAS symptoms or you see a lot of backsliding now that he finished the abs? I'm not sure where that is in KY. I'm in Cincinnati, OH. I didn't grow up here so I'm not really familiar with the whole area.

His tics are basically gone?! I'm so happy for you. Have you called the ped yet? If you can get him to the office while the tics are gone so she can see for herself. How can she even deny the connection? You are finally getting your answers. I'm so happy for you! I wouldn't be surprised if she wants him off abs to see if they come back. If that happens just outright say to her that if he goes off the abs, the inflammation will return and you rather his brain not be damaged any more than it is. Sometimes those cut and dry sentences can make a difference.

Is it Cefdinir? if so, that antibiotic is being used in a current study and will be used again in a future one. That leads me to think that the antibiotic may be a good one. But I have nothing to back that up right now. As for t and a...that's one of breaks I got. A good recovery. I hope he feels btter soon. If the strep test comes back negative, it may be the possible infection in the throat from surgery causing the increase in PANDAS symptoms. Do call the ENT soon.

I'm sorry you're having a tough time. Didn't your son have the staph infection in the sinuses? Who gave the Omnicef script, the ENT? I don't now what the standard med is for staph. If it was the ENT, I'd call them and say the Omicef isn't working and you need something else. You say you saw improvement at first then he's been backsliding for days now?

I fixed my computer problem. Here's the thread... http://www.latitudes.org/forums/index.php?...ic=5220&hl= I should add my son's motor skills didn't appear to be affected either.

My son never had tics. Buster once did a thread on this and many responded whether they had tics, OCD, both. I'm having problems with my computer and pulling up old threads. You can go to Buster's profile, pull up his topics and if you scan through them you will see it.

I think the label says 150 for that weight, but the doctor said they dose conservatively on the bottle and 200 mg was fine.

Welcome. Some PANDAS kids do develop fine motor skills problems during an exacerbation. Often it is described as a deterioration in handwriting, but since your so was at the age of hand writing yet, one can see how things like drawing, cutiing, etc would be affected. You say he had an infection prior to t and a surgery but no symptoms. A good number of PANDAS kids are asymptomatic when it come sto strep. No classic symptoms. I have found out my 2 non PANDAS kids are also asymptomatic in addition to my PANDAS son. I agree that it seems like Zith may be the antibiotic to go back to. My son has never been on it and I am not familiar with successful dosing. There are others who can guide you and give suggestions. As for other treatments...there are some kids that go onto IVIG and PEX. Some do a streoid burst in hopes of relieving symptoms, but I need to add the clause for others that if your child has tics you should know that some TS patients have adverse effects from steroids. Also, if your child can take Ibuprofen (Advil, Motrin) some find that eases symptoms. It's like a band aid. It doesn't solve the problem, but may give some relief. It may also be a good idea to see an immunologist and get a workup done. Some PANDAS kids are immune deficient. As for a timeline, antibiotics and time are the most important things. Even if you find the right antibiotic for your child it can still take weeks or months to see them returning fully to themself. Ideally, a PANDAS child would stay on a prophylatic antibiotic to try to prevent future strep infection. I would also say get all family members tested for strep. If rapid comes back neg, get it cultured. Kids and adults. Also do simple things like chnage toothbrushes and cups in the bathroom. Fianlly, I also give my child Omega 3's and a vitamin with DHA to aid teh brain in recovery and to keep it "strong" in the venet he shold get sick again. Oh, one more thing, if on long term abs, a probiotic is a good idea. It will help keep the yeast in gut in check. Here are some good topics you can read for more info.... Fact sheet http://www.latitudes.org/forums/index.php?showtopic=6265 FAQ http://www.latitudes.org/forums/index.php?showtopic=6266

How much does your 6 year old weigh? My son is 44 pounds and can take 200 mg per dose according to the dr. I woldn't take that every 6 hours long term, but I would think every 6 hours for a week or so along with food should be okay. After that, maybe try once a day.

My son is only 6. His big PANDAS excaerbations occurred last year while in preschool at age 5. I realize how "lucky" i was that he was only in preschool and wasn't a big deal if he missed school. There were days he just couldn't go. I know you guys know what I mean. We did always try to make it to school and actually,for him, he seemed to do better in the class environment. he wouldn't really participate but he was calm. He only had one big meltdown at the preschool. It was bad, but compared to what we experienced at home, one is good. My son is in kindergarten now. He is doing better. He goes there fine and comes home happy. I make it known at the school that he has PANDAS and I am trying to get PANDAS more known throughout the district. My son has an IEP for speech and PANDAS is cited in health history along with an explanation. He does not have it cited as "OHI" for reasons that aggravate me.

The amount of times I have given him Ibuprofen thorughout the days varies. Sometimes I can get away with only giving it to him once a day and it helps the entire day. There are other times I have given it to him every 6 hours. It depends how bad his symptoms are. When I had to give it to him every 6 hours, it would take 1/2 hour to kick in and begin wearing off at the 5 hour mark. I could tell what time it was based on his behavior. Even though he is doing well now and doesn't take Ibuprofen, if he seems to be having a irritable morning, I'll give him a dose before school "just in case". Granted everyone can have bad morning and it doesn't mean it's always PANDAS for him, but if I can give him something that might help, I will. Maybe I do it for my own peace of mind too. As for when to stop, well, pick a day when you don't have to be anywhere and stop. That's the only way you'll see if he still needs it. Finally if it doesn't work now it may still work at a different point in recovery. when I tried with my son during one of his exacerbations, it didn't work. He was also very bad off so there was probably a lot of inflammation. But when I use it now with viral triggers, it works. So if Ibuprofen doesn't work once, it's worth revisiting later.

Are there any symptoms for it or would it be asymptomatic for PANDAS kids? Asking because my son is asymptomatic for strep.

Mycroplasma is getting more publicity on this fourm lately. My son has never been tested. But Bat-Sheva Myllys did recently bring it back to our attention a couple weeks ago. It was the trigger for her daughter. http://www.latitudes.org/forums/index.php?showtopic=6467

During recovery, when my son was put in what he considered a stressful situation, we would have a setback. However, I made my own "3 day rule". If the setback was bad enough and lasted more than 3 days, we would go back to the dr for another test. Realistically, even though one sees improvement, it won't always be clear sailing. There are going to many bumps in the road to recovery. It is important to trust your parental instinct. A lot of time it has the answer. I should add if my son had one of his signature PANDAS meltdowns after those had passed, I would not wait 3 days. I would run to the doctor.

I completely forgot to mention that strep can occur in more places than just the throat. One can have strep in the sinuses, in the gut, peri anal strep, strep on the skin, and vaginal strep. So, discuss with your doctor about looking for hidden strep in your child.

Welcome. When did she finish her script of amoxicillan? Have you seen any improvement at all? I'll let you know right off the at that the majority of PANDAS kids need more than amoxicillan. Some do get better on it, but it seem sto be more of a rarity. Often something like Zithromax or higher dose Augmentin is needed. An article that is often posted that cites the failure rate of amoxicillan and strep is.. http://www.entrepreneur.com/tradejournals/.../169459644.html Also, often PANDAS kids need more than the 10 script that a lot of docs give. A month trial is usually what is needed. Let me add, that recovery does take time. The quicker you erradicate all the strep, recovery can begin. Your child will not be back to 100% themself by the end of a script, but hopefully you will see significant improvement. In reference to retesting for strep. It has been said on here that you should get retested for strep 2 weeks after fiishing abs. The ped won't tell yout his. You need to just call and say you want a strep test. If you see dramatic backsliding in symptoms, take her sooner. Have all family members tested. All 3 of my kids are asymptomatic. No classic symptoms. As for the immediate relative with OCD, tell them what you have learned and tell them to get their children tested for strep as well. If you need to scare them into get their kids tested, so be it. If they have strep, your child can recontact it and you may hold the key to their own recovery. You have probably seen such things as PANADS fact sheet and FAQ on here. They really are amust to read. Also, a great website is www.pandasnetwork.org

In reference to acne and abs. EAMom did post once that Zithromax is great for acne and it is cited to have less side effcets than the traditional tetracycline dermatologists give. I can probably find the article if you want. Zith is a great choice for PANDAS. Anyway, I cannot take tetracycline. I took it for acne and had bad side effects. So, if you decide to go the dermatologist route, it may be benficial to add that he is sensitive to tetracycline. Say that he gets migraines and his vision began to blur. Ask for Zithromax. If you want to ensure that the Zith scipt is a possibilty, call teh offcies ahead of time, tell them about the tetracylcline problem and confirm they will give Zith for the acne problem. Calling around can save you time and money. I would still try to get the meds for an infection while doing the dermatologist route. For acne, they will probably give a lower dose than they would for something like hidden strep.

There is research going on that is the closest things we have to a diagnostic test. You can contact a Dr Cuningham and have a blood sample sent to her, she'll run tests and get back to levels that indicate whethe or not he has probable PANDAS. But, fyi, she did lose her funding and last I heard she will still run teh test but it cost $400. There are a few PANDAS experts out there. Dr K is in IL. Dr T is in NJ. Dr Latimer is in MD. Those are ones who will look beyond the numbers and see the full picture that is your child. They can diagnose, provide treatment,e tc. Are you able/willing to travel? As for the psychological testing, that is up to you. Many psychologists still don't fully understand PANDAS and some I called never heard of it. They may end up labelling him with other disorders, when in fact those problems can all be the result of PANDAS. Honestly, the psych eval can be put on the back burner for now and concentrate on antibiotics and gettting things under control befroe they spiral more.

Others will chime in about the dosing. I know the 250 twice week isn't enough though. Do get everyone in the house tested. you can have strep w/o symptoms. That's the case for all 3 of my kid. if I did have the mentality to "rule it out" when my PANDAS son was +, I would have never know they had strep as well. Get the adults tested too. If he can take Ibuprofen, give him that and see if it helps with his PANDAS symptoms. Some see some relief with it.

Welcome. I agree if he did not have athroat swab, to get that done. If the rapid is negative, make sure it is cultured. In reference to the blood test, on the PANDAS fact sheet it states... http://www.latitudes.org/forums/index.php?showtopic=6265 "A throat culture for Group A Beta-Hemolytic streptococcus (GABHS) at time of exacerbation onset is recommended to diagnose a pharyngeal streptococcal infection [swedo2004]. If the culture is negative, a blood test may be able to test for streptococcal exotoxins. A common blood test is Anti-Streptolycin O. While this test can confirm a previous strep infection, it cannot exclude a prior infection or a diagnosis of PANDAS. This test is affected by many factors and in one study over 46% of children did not have a rising ASO titer despite having colonized strep [shet2003]. " Also, there are some kids that do mhave the more intrusive thoughts asscoiated with OCD. Not all OCD is excessive hand washing and fear of dirt and germs. if interested, here is anothe link to a list of OCD symptoms many here on teh forum have witnessed. Confessing is one of them... http://www.latitudes.org/forums/index.php?...ic=6153&hl= Where do you live? Perhaps we cannot suggest a doctor to you. Finally, has he had odd behaviors before, spefically coinciding with the fevers? Would you say this is his first "episode"?