JoyBop

WOW!! Thats amazing! I think the proof is in the pudding! Im not sure what more the titres are going to prove though given the fact that you already found the positive strep infection. High titres certainly won't hurt, and might prove hes not a carrier, however he already had at least one negative swab in the recent past. I suppose if he responds well to abx that will be the defining factor. I wish our doc would give us IV IG just like that!

How does your doc rule out PANDAS given the host of other symptoms and correlation with strep infections and improvement with abx? That would be my question. AT least you are getting treatment for the infections. How does your doc feel about prophalactic abx to prevent future strep infections?

All rising titres would prove is that your child has strep. It's not a PANDAS test, but it can support the diagnosis based on the clinical presentation. Especially if you missed the infection on the swab. Heres how it helped for us to have positive swab and titres: My son flipped out one day and we couldnt figure out what was going on. We bounced around from psychologist to psychologist and nothing really helped. He got so bad that he ended up completely out of control and suicidal. Thats when we ended up at the psychiatrists office who sent us out for a strep infection. BINGO! It was strep and confirmed her suspicion of PANDAS. The abx helped tremendously which further confirmed the theory. But even if we didnt have a positive test, we would have been trialed on abx and that would have been the clue. So you see, it's not that cut and dry, but it sure helps to serve as a clue. I hope you are documenting the rise and fall of symptoms and getting copies of the positive strep tests for future reference. IF your child had TS I highly doubt that abx would be helpful. That would serve as your clue.

I am right there with you. My son is in 3rd grade and barely functioning in school, although he is somehow able to hold his emotional issues, OCD and anxiety together in school, he is unable to do his work and just wanders around the classroom at the most inappropriate times. I get very little support from the school at all but I am about to change all of that. So we are in the same place. Here's what I know (think). They've had this for a long time. Because of that it may be more chronic than other cases. I have read what Dr. Swedo has written and she says that there does not seem to be permanent damage to their brains and they will get better. They will get better if we stay diligent and treat them the best way we can. That means identifying the triggers the best way we can, avoiding them when possible, and getting the support and services they need in school so they can forge on. For some kids that means staying home and getting tutored (for those either too at risk for germs or too incapacitated to leave the house) How does the school deal with his tics? Is he aware that he is doing it? Is it causing him emotional damage?

IT sounds like you are doing all of the right things. It certainly looks like PANDAS to me, he has all of the features, it waxes and wanes, and you can identify the triggers. SOme have serious rage and personality changes, and some have severe tics. Some just have moderate symptoms, you really cant compare one child to another. It sounds also like you have done some other really great things to help your childs immune system and you are way ahead of the game. Two of my kids had asymptomatic strep infections. I dont think I have an explanation, other than the fact that they have a "misguided immune system" as Dr. Swedo so eloquently put it. At the PANDAS conference last weekend one of the doctors spoke about how kids with PANDAS tolerate long term abx without any problems. No one knows why, but she said that they dont get c-diff. (Im sure "some" do but overall she commented on how infrequently they have a bad gut reaction compared with the general population.) I would recommend Dr. Bocks book. He spoke about the gut-brain connection and covers in his book many ways to support the immune system and specifically addresses yeast. But it sounds like you already have a good footing in that area. Unfortunately, our kids with chronic PANDAS do experience flares that come, some linger, and go. If you can identify the triggers you are ahead of the game. I know for myself its most frustrating when I cant figure it out. Like, why are BOTH of my kids RAGING right now? Im pulling my hair out!

Forgive me if I missed some other posts, but what other symptoms does your child have? For how long? Bloodwork can be helpful but there can also be some grey areas as well. In an ideal situation you get your blood work done and then redo it a couple of weeks later. The ASO/anti Dnase should rise/fall at certain times. Ideally you want to see that the ASO rises and then falls and the Dnase will rise 6 weeks or more after an infection. A strep carrier would not show these changes because the strep bacteria happily cohabitate and the child would not produce antibodies. With that said, not all children make these antibodies at all. My child had an asymptomatic infection and tested positive on the swab. His ASO was 4 times the normal and has yet to fall to normal levels, (its been almost a full year) but the anti Dnase has never changed at all and is in normal range. The important thing is that you have proof of the infection with the swab. If you read what the NIH says, it does say that you have to use the titres in a relative way (Watching for that rise/fall)as some kids titres will remain high for a year or more and doesn't mean there is an active infection. Good for you that you have a positive strep test! I agree that Amox is not a great choice for this situation. My daughter was on it for three months with no improvement and the strep remained. 3 weeks on Keflex and there was a world of change. Every child responds differently and that choice is between you and your doctor, but Im just sharing our experience. Its great that your doc is open to reading what is available about PANDAS. Hopefully he/she will trial your child on a stronger abx. My personal rule of thumb is treat until the symptoms are gone at very least. My two children remain on full dose KEflex BID and will until they are much older. IT took a while to get to the right doctors. It sounds like you are just at the beginning of your journey. Dont give up and keep your eye out for other symptoms such as anxiety, OCD, sleep disturbances and rages.

I have been told that a strep carrier will have a positive swab but not have an increase in ASO or anti D nase titres. Have you had the blood work done?

Wishing you all the best. Im so sorry for all of your frustration. Im very inspired by your determination to get help. Don't give up! We have had the same thing happen with a neurologist that we told was very PANDAS savvy. We found out when we arrived at the hospital that the doctor our doctor had spoken to and arranged for us to see didnt even have clinic hours that day. I wasn't disastrous but it wasnt the right one either. But at the time it was all I had and was better than nothing. Sorry about Dr. T. What about Dr. L? She is on the East Coast, even though she's not right next door.

Im trying to understand this situation. Who were you originally scheduled to see when you made the travel arrangements? Also, you say you rented a loft as opposed to a hotel room, so you are planning on staying a while? You are flying out Monday morning and no one is in the office. So your choices are to A)Take your chances and go meet with this Dr. or B)Decide not to go, loose out on your travel plans and be out $$ and treatment. If it were me, I would take my chances and go through with the appointment with the hopes that something positive would come out of the situation. If you cant get your money back on travel I would at least give it a try. A creative plan C would be to contact Dr. T. (who seems to be everyone's savior) and see if he would take you at the last minute. His office is not far from NY if you could rent a car. ITs maybe a 45 minute drive from NYU. That way it wouldn't be a total loss. He has been known to get people in at the last minute and return those initial emails lightening fast. Or, take the appointment with Dr. Chong AND get in to see Dr. T if he could accommodate you. This is really a tough situation and I feel for you. But if it were me, I would go and make the best of it. What do you have to loose? You have most likely already paid for the travel plans.

There are studies proving that Amox is no longer effective in many people. Does someone have the study handy? I know my ID doc told me that many people now make an enzyme that counteracts the Amox and that is why it may work in a petri dish but not in the body. There are also many known resistant strains to Amox. IF you could come up with the studies perhaps your doc would be willing to trail your child on a different abx and for a longer period of time. Before we realized my DD had PANDAS and an active strep infection (her behaviors were out of control but we chalked it up to toddlerhood) she incidentally had a few ear infections. She was given a 10 days course of Amox but nothing much changed. 10 days later her other ear became infected and she was given a longer course of Azith. Magically, her behavioral symptoms greatly improved, however we credited a psychologist for the miraculous improvement. We realized several months later that both of our kids had PANDAS and have been on abx ever since. But it was hindsight that we realized it was that second round of abx that helped and that the Amox was not effective.

Im not sure about this study, but for the last study travel expenses were covered. Maybe someone who participated could chime in. I would recommend you send an email to the address listed on the webpage and include your phone number. Dr. Swedo's NP should call you back very quickly and interview you and explain all that is involved. If you are not a good candidate for the study they will usually give you some advise as to how to proceed. Dr. Swedo's office is incredibly responsive.

I really feel for you in this situation, given the circumstances. ITs hard enough just to wait for months on end for an appointment locally, but to have this happen when you have so much invested is a big deal. When you say he has always emailed you, who were you referring to? IF its Dr. N, can you get in contact with him and ask? Perhaps he isnt going to be available and didnt want you to have to cancel/loose all of your travel plans. If it were me I would call the receptionist and explain the situation very briefly and ask to speak directly with Dr. N to ask his advise. This is best accomplished if you ask to put in a message to the Dr. and have him give you a return call. If he is very familiar with your case Im sure he wouldn't refer you to someone he felt was not going to be helpful.If that didn't work, I would have your local doc call and speak with this other doc and make sure it was a good fit first. I understand you can't reschedule these plans, but perhaps a plan B would be to ask Dr. N if he could see you the next day or some other time that still fits within your travel. Its very frustrating but I think if you are very patient and reasonable that you might be able to negotiate with them. However, if you go on and on about your situation and get all flustered you are likely not to get anywhere. It's a tough game to play but I wish you good luck! I personally wouldn't want to spend all that time and money on an unknown if you cant change it, but I would weigh if it were at least worth a chance to see if this other doc could help. I would put very little stock into what those reviews online say, but I have to admit, I always look myself. Good luck to you!

Dr. Bock did say that Curcumin is also an anti-oxidant. Im going to try to find a good source of it. Here is a study I pulled off of Pubmed "Abstract Curcumin, a widely used spice and coloring agent in food, has been shown to possess potent antioxidant, antitumor promoting and anti-inflammatory properties in vitro and in vivo. The mechanism(s) of such pleiotropic action by this yellow pigment is unknown; whether induction of distinct antioxidant genes contributes to the beneficial activities mediated by curcumin remains to be investigated. In the present study we examined the effect of curcumin on endothelial heme oxygenase-1 (HO-1 or HSP32), an inducible stress protein that degrades heme to the vasoactive molecule carbon monoxide and the antioxidant biliverdin. Exposure of bovine aortic endothelial cells to curcumin (5-15 microM) resulted in both a concentration- and time-dependent increase in HO-1 mRNA, protein expression and heme oxygenase activity. Hypoxia (18 h) also caused a significant (P < 0.05) increase in heme oxygenase activity which was markedly potentiated by the presence of low concentrations of curcumin (5 microM). Interestingly, prolonged incubation (18 h) with curcumin in normoxic or hypoxic conditions resulted in enhanced cellular resistance to oxidative damage; this cytoprotective effect was considerably attenuated by tin protoporphyrin IX, an inhibitor of heme oxygenase activity. In contrast, exposure of cells to curcumin for a period of time insufficient to up-regulate HO-1 (1.5 h) did not prevent oxidant-mediated injury. These data indicate that curcumin is a potent inducer of HO-1 in vascular endothelial cells and that increased heme oxygenase activity is an important component in curcumin-mediated cytoprotection against oxidative stress."

Pow Pow, thanks for making me laugh! They did reference the study that showed the frequency in families for rheumatic fever. I dug one up here... http://circ.ahajournals.org/content/10/5/699.full.pdf

That was a great alternative and doesnt look as though you were giving in to his specific demand. The music might be a great distraction. Can you upload music to it, or is it an old fashioned radio? So sorry that this has been so difficult. An additional 10 hours is just horrible. Does he see a psychiatrist that might be able to help somehow? That's where I usually go when things get that difficult.

Just when you think it's safe to use auto-correct on your iphone! No, church is not the answer. I went back and edited it to say Curumin is a good alternative. I believe he said it is an antioxident as well as an anti-inflammatory.

I too heard that it was "coming". On a different note I wanted to share some very practical tips I got out of the conference. -each child should have their own tooth paste and their brushes and paste should be stored separately. We bought little plastic pencil boxes and gave each kid their own set if brushes and paste that we will store separately and run through the dishwasher periodically. I never thought of the strep being transmitted from paste to brush! -Peggy Chapman mentioned that a flare can be brought in by a simple cold or virus, even if the child doesn't seem to contract it. Another cause of flares are loose teeth or teeth coming in. Any source of inflammation in the body can set off a flare. She said not to panic. These types if flares general last only 8 days and they will return to their baseline soon. That gave me great perspective! -Many of the doctors stated they have seen good results from tonsillectomy. Correct me if I'm wrong, but I believe it was Dr. Latimer that said she likes to see them get a dose of IV steroids prior to surgery as the post surgical inflammation can set off a flare. -the head of the MGH CBT program gave guidelines on CBT for PANDAS. Do not start CBT or practice ERP during a flare. Instead work on relaxation techniques and crisis management. When a child is well enough resume treatments. Even after remission its a good idea to continue to meet with your therapist for "check in" sessions once a month so kids retain their skills and will have more resources in case they flare again. -Dr Swedo reminded all of us not to "chase titres" because they can remain elevated for a year or more post infection. She also started out the conference by reviewing her criteria for PANDAS and urged us to look elsewhere if we did not remember the day and hour that our child changed. Dr. T respectfully disagreed later in the conference, but can appreciate why they need to set such specific criteria until the hypothesis are proven. -Dr. Bock gave his talk about the gut/brain connection. He made us all repeat after him, "leaky gut, leaky brain." He said curcumin is a great alternative to ibuprofen because long term use of it can cause the gut to become impermeable. He also said we should check for and treat yeast. Kids that are on long term antibiotics are especially at risk for yeast. -several doctors discussed briefly the importance of vitamin D. The range they like to see our PANDAS kids is between 50 and 70. The low end of normal is around 30 but this is too low. -Peggy Chapman reviewed how to handle a melt down. It work!! Check her slide show for details. She also gave advice on how to explain PANDAS to children. -Dr. Swedo said that it can take an entire year for the full benefits of IV IG. Dr. Walter said that you are considered a "responder" if you experience a dramatic improvement of symptoms within the first few months. Improvement is measured using Y-bocs (Yale brown OCD test) Dr. Walter would not give a second treatment if there the patient didn't respond the first time. Her represented studies showed the the the second IV IG showed less dramatic improvement than the first. Dr. Swedo said the plasmapheresis is only available at very few locations in the country and is therefore reserved for the most life threatening cases. It is a safer and more effective treatment than IV IG. Correct me if in wrong but I heard her say that plasmapheresis is an instant cure. Please feel free to add advice and info that you found particularly helpful.

I had a wonderful experience with a very PANDAS friendly ENT at Mass General. However, he's a pediatric physician and I'm not sure it will be if help to you. If you would like the info please pm me.

I will have to call my insurance company. Interesting that it could be covered. I thought it was a supplement but if its an rx that's a while different ball game. Thanks for the input! For those of you who are on it, do you also take ibuprofen? Can you take them together?

I just wanted to say that after attending the PANDAS conference it made me realize just how dedicated these physicians are to us. They have stuck their necks and reputations out on the line to take care of our kids when many others have turned their noses up to our symptoms and diagnosis or just refused to listen. The fact that these doctors are still taking new patients at all is a huge blessing. Many doctors that have full practices simply turn new patients away, so I would have to agree that a doctor such as this one is definitely worth the wait. I can also say that working in a busy doctors office is extremely stressful and they do take a lot of abuse. It's a tough job to say the least. But the bottom line is we have to stick together and stand behind these doctors if we expect them to continue to make the sacrifices of their own time and reputation to help us. I totally understand the hassles of doctors offices, not only do I visit them way to frequently, but I work in one as well. I have gripes many times also and can validate your need to vent. But please, for the sake of the few doctors that we have working with us, please don't include the names of the docs. It's just not fair.

Thanks for sharing the great news!!! It sounds like you did amazing work and really helped you child get to where he is today.

Just curious, how log do you treat with duflucan and for how long?

Thanks for the input. DS is in Zoloft and is at the highest dose he can tolerate so thanks for mentioning that. I will ask tomorrow at our psych appointment.

I didn't notice anyone leaving. The place was still packed for the Lyme presenters. Although there were some people that only attended Saturday it was still a full house.

Im interested in trying Curcumin for my child after hearing what Dr. Bock had to say about it. IT is a great anti-inflammatory and doesnt do any damage to the gut as Ibuprofin can. Does anyone have a good brand that is reliable and have you had seen any benefit?