JoyBop

Yes I did call. There was some miscommunication somehow. Of I don't hear from them in the morning my PCP will call it in. We saw a very PANDAS friendly ENT dr. We are scheduled for a sleep study I'm July and hope she somehow qualifies for sleep apnea so we can have those huge tonsils removed.

Im caught off guard! DS tested positive for Mycoplasma. I don't even know what the lab reference is yet but maybe someone could help. Myco IGG was greater than .91 (Doesnt sound too specific to me!) IGM was 205. The office said they wanted her on 5 days on/5 days off of Zithro and that they would call in a months supply. I went to pick it up and it was only a 5 day supply. Am I really supposed to go to the pharmacy every 10 days to pay a $20 copay? Also, they prescribed 4.5 mls per day. This is very different than the normal dose I see my kids get, but of course, there is nothing about PANDAS that is normal. Can anyone chime in and give me some clues about the blood labs, as well as how zithro works and how often I should expect to have to pay copays/refills? Thanks so much.

How funny. I am having the opposite situation. High ASO and low DNASE.

Could someone please shed some light? DS had ASO of 449 May 3. We didn't do the DNase at that time. After 6 weeks of abx his ASO is 442. (Normal is less than 150). The DNASE falls well within the normal limits. What does this mean? I'm so confused.

Thanks for those suggestions. We do have a trader joes near us. I will check that out. Thanks so much!

Yes he can swallow pills odor or after flavor (ie fishy burps) would be a big problem due to sensory issues. What is the dosage your kiddos take? Thanks so much!

Does anyone use an omega 3? Does it help? Do you recommend any specific brand? I have an almost 8 year old weighing 70 lbs. Thanks!

Just what I needed! Thanks die sharing!

OMG yes!! Prozac was a nightmare for us. We only made it 5 weeks in 10 mg. He is 7 and 68 lbs. after the first week I knew I didn't like what was happening to him but I was urged to stick it our as it can take a while for the med to build up in the system. He was completely agitated and hyperactive and acted very strangely all around. It was actually scary! At the four week mark his panic attacks (which had subsided) started coming back. He then started expressing that he wanted to die and wanting to hurt himself. I wanted him off! Our PCP who is amazing but never treated PANDAS before wanted to double his dose bc she has seen this before and thought we needed to increase it. My gut screamed no and I found a psychiatrist who took him off. I have been told by many docs now that are treating him who have said that Prozac is far too activating and it was a bad choice for our kid. We waited a few weeks and are now trying him on intunive. I can tell you that the aggitation is gone but sadly the ADHD is here to stay. He does have spontaneous fits of rage constantly as well. In at my wits ends as we speak. But to answer your question Prozac definitely made all of the symptoms worse. Be sure to wean off slowly if you choose to. They can go through withdrawal even though it takes several weeks to be rid from the body. We were considering Zoloft as its less activating and better for OCD and anxiety. Intuniv is supposed to help with adhd and rage. So far nothing yech has changed but its only been two weeks on 1 mg. we double it tomorrow. It has taken the edge off of his hyperactivity but he is till not able to function in school. I hope that helps.

The DNase test shows if there was an infection in the past whereas the ASO is more current and within several weeks if an infection. If the DNase was elevated it is proof that there has been a strep infection but if the aso was normal it was most likely a past infection.

4nikki, when you apply for insurance you have to give permission for them to audit all if your medical records. So yes, you do need to authorize. This is not a reason not to get the info but rather a conversation to stimulate thought about the surrounding issues at hand. I find it all very interesting.

Just so you are all aware, anything in your medical record is subject to review by many future prospects. If I do choose to get this type of testing done, I might share the results with my PCP but I will not allow them to make a copy it scan it into my child's records. Insurance companies (life, disability and long term healthcare) can indeed discriminate at this time if you have an "increased chance of" developing a particular illness. I'm not saying the information is not helpful or that the risks don't outweigh the benefits. We are pioneers if a new day and age and it will be interesting to see how this all unfolds. In the meantime, I know I will proceed with caution.

Mayzoo, I copied this from the document The law does not cover life insurance, disability insurance and long-term care insurance. These are big deals as our kiddos grow up, get married, and become responsible for their own families someday. Obama has made it illegal for health insurance companies to discriminate against any preexisting conditions or genetic factors, but we have had that law here in MA for a long time. Google invested many millions into 23andme and may in fact own a good percentage of the company. Any information downloaded onto a computer is at risk for hacking. All I'm getting at is that this is a slippery slope and there are so many unknown factors. I think its very clever to use alternative addresses,ect to try protect their identities. We are considering having this testing done, I am still weighing the surrounding concerns before we do.

For those of you that have had the 23andme, what kind of privacy or security does it come with? I did some reading and saw that the woman who owns the company is married to a founder if Google. It doesn't need to be ordered by a doctor and therefore HIPPA laws may not apply...maybe they do? I'm curious. Does google now own the information? It is downloaded into a computer. Does anyone know about the security of this information? I was considering doing this test on my family but am hesitant about any future insurance company having access to any health risks my children might appear to have. It may not seem like a big deal to some, but in my experience it can be a big deal. I do like the idea not having the genetic information as part if ones personal medical record which can follow you forever and any life or health insurer can summon at any time with your permission. (Of course you can choose not to share but you will not get the policy either)

I apologize in advance if i am getting sny details wring as i was unable to read tge font you posted in. Im going by others responses. One of the issues that will affect your child later in life that no one thinks if is that if bipolar is listed on your child's medical record they may never be eligible for life insurance. Most doctors will give a psychiatric NOS code for as long as possible to avoid these problems. Besides hat, she is rather young for the definitive diagnosis. I would go to a PANDAS specialist for sure, but if you are truly questioning the bipolar dx I would go to a child psychiatrist. This is not a dx that a PCP should be wielding around in such a young child just bc he can't come up with something better. I was concerned my son had this as well as there are several traits if PANDAA that can certainly appear to be bipolar. Have you tried filling out a screening for PANS , OCD and also bipolar? I will post links. http://www.stlocd.org/handouts/YBOC-Symptom-Checklist.pdf http://www.jbrf.org/the-child-bipolar-questionnaire-for-families-use/ And the PANS is in a sticky. These are good places to start and compare. My kid did test positive for bipolar when flared but not when in remission. We have never had full remission but you get the picture.

One of the issues that will affect your child later in life that no one thinks if is that if bipolar is listed on your child's medical record they may never be eligible for life insurance. Most doctors will give a psychiatric NOS code for as long as possible to avoid these problems. Besides hat, she is rather young for the definitive diagnosis. I would go to a PANDAS specialist for sure, but if you are truly questioning the bipolar dx I would go to a child psychiatrist. This is not a dx that a PCP should be wielding around in such a young child just bc he can't come up with something better. I was concerned my son had this as well as there are several traits if PANDAA that can certainly appear to be bipolar. Have you tried filling out a screening for PANS , OCD and also bipolar? I will post links. http://www.stlocd.org/handouts/YBOC-Symptom-Checklist.pdf http://www.jbrf.org/the-child-bipolar-questionnaire-for-families-use/ And the PANS is in a sticky. These are good places to start and compare. My kid did test positive for bipolar when flared but not when in remission. We have never had full remission but you get the picture.

Thanks so much for taking the tone to look those up. I have some reading to do!

Honestly it doesn't sound like PANDAS to me but like I said it might just be too early. Every kid is different and every case is unique. I would imagine that if the tics were caused by the strep that they would have continued and the strep would still be present. My son had a strep infection back in Dec and was treated with a round if Zith. That's when the panic attacks, severe OCD and personality changes occurred. In May our psychiatrist thought maybe it was PANDAS. we took him for a swab and he was STILL positive. No sore throat or sickness just changes in his behaviors. When he started antibiotics it improved greatly but he still suffers from all sorts of lingering symptoms I think it will be hard to prove one way or another.stbe someone who's kid just has tics and no other symptoms could chime in.

I didn't see if you had your son treated with antibiotics for the strep, did he? I think its a wise idea to repeat the ASO and the DNase as well. I am a believer that for some of these kids, the flares start small and can build up over time before they become really heinous and unavoidable. At least you have noticed and are making connections so early in the game. IF you think about it, many PANDAS kids get flares anytime their immune system is heightened. If your child is allergic to milk, it would certainly create an immunologic response and could certainly be responsible to tics. As far as OCD goes, many kids do hide it for a long time before they begin to verbalize it because they know how irrational and crazy it seems. When it gets really bad, they can't help but act on compulsions and you have to notice it. But again, I think if your child does have PANDAS you have caught it early. The Cunningham panel is very expensive and your child must be in an active flare to test positive. Even at that, it may not be positive. The ultimate test is really, does he get better on abx? And sometimes that means trying multiple abx before you get it right. As for the neurologist, it certainly couldn't hurt to rule out more classic neurologic reasons for your child tics. When this first occurred with my 3 year old, I took her to a neurologist to rule out brain tumors or any other major thing that could have caused her symptoms. If your insurance is going to pay for it, I would go for it. It may not be the winning ticket, but any information you can get may be a useful part of the puzzle. SOme PANDAS kiddos show inflammation of the basal ganglia. On the bright side, it doesnt seem that your child is suffering (at least not obviously) from anxiety oCD. My child had a life threatening reaction to any dairy product, or even a cross contamination of a dairy product. He never tested positive to a blood test, skin test, or patch test. Yet every time he came in contact with dairy it was a 10 day or more hospitalization with paralysed and bleeding intestines. No doctor had ever seen anything like it. It wasn't an "allergy" as it didnt test as such. It certainly wasn't an "intolerance" because he was hospitalized and nearly died from each exposure. My point is, if he is ticcing after dairy, stop the dairy and all traces of it including caesins. Best of luck on your journey!

I am appealing my insurance company's denial to see Dr. T. The denial letter gave me the names of two docs at Boston Children's who "can provide the same or similar services". I wrote a compelling letter explaining that those two physicians have only treated a few PANDAS patients. (That was what I was told by the doctor's assistant) The jist of my appeal is based on the fact that my child is dealing with many lingering symptoms and although he is somewhat better on abx, he is far from well and still dealing with flares. I am looking for a legitimate study to include in my appeal that might exemplify how these kids can suffer for long periods of time or repeatedly. I think one of the problems we face in the medical world is either docs don't believe it exists (or just wont treat until a protocol is in black and white) or that its as simple as treating a strep infection for a short period of time and anyone with an FDA number and a medical license can write an rx for a week of abx. As we all know, its far more complicated than that. Can anyone post any links to any studies are articles that would hold water to show how/why children will suffer chronic and episodic flares for years at a time? I am avoiding blogs and personal stories. I would really appreciate the help.

Wishing your son a successful surgery and speedy recovery, and peace to your family!

There does not seem to be a spell checker in this program Thanks for sharing your experience. I hope we are as lucky as you are. I also have two children infected, both within 6 months of each other. We are only 1 month into treating and have an appt with Dr. T this summer. It seems like there is going to be along road ahead of us. I hope your children continue to enjoy a full remission!

Thanks for posting! Please tell us how old your children were when they got PANDAS and how old were they when they were cured? Are you willing to share the medical regimen that worked for your children and how long you treated? It really is wonderful to hear success stories. SO happy for you.

Yes, good luck with IViG! IS there a polling tool on this site? I suppose if we want to be scientific about this we need a percentage of how many. How funny!

There are no false positive results on a strep culture, but there are false negatives on the rapid. Most labs take a full 48 hours to grow a culture. There are plenty of people who get strep without symptoms. We are swabbing the whole family monthly at this point. Neither of my two PANDAS children had a sore throat or were sick at all and they were both positive. At the time I had a sore throat but was negative. Doc gave me 40 days of AMox anyway (500BID) because she feared they didnt get a good enough swab and I was having symptoms. 3 days is definitely not enough to cure strep! You would know if it was a rapid because you would have had the results just moments later while he was still in the office. You would have to follow up with a phone call 2 days later with a culture.