JoyBop

I wish I knew someone in your area but I don't. How far are you from northern nj? Dr. T is there and would be worth your journey but is $$. We were considering him if we couldn't get in to see the experts in Boston but luckily I have managed to get in and have it covered by Insurance. Its not easy to navigate but keep up the fight until you get there. How us your current ped with the diagnosis? Has your child responded well to abx?

Thanks T Anna! I hope the progress is continuing for you son as well! It has been quite a summer!

Perhaps you should be open to finding a pandas doc in Philly and work with an open minded ped in your area. I'm sure there are good options in Philly or northern NJ. you may have to travel several hours like many if us do. Some PANDAS docs will give you an rx for up to a whole year.

Wish us luck! My 4 year old dd is getting her tonsils out thrs by a pandas savvy Ent. We did a sleep study and I was positive it was going to be norm but would never turn down an opportunity to get help of any kind. She had a great night sleep and was fairly quiet but low dnc behold she had moderate to severe obstructive sleep apnea. I'm hopeful that it wi help with some overall behavioral issues now that we know she isn't getting good quality sleep. Also hoping to help with strep issues if course. Any tips on getting through those first few miserable days post op?

I am in MA and have seen many docs in Boston. You can pm me if you would like but we see all pediatricians and I'm not sure they would see a 24 year old adult. I agree that going to the PANDAS conference is a must. Regarding the PANDAS clinic they are opening up... It is very hard to get into. You must see one of their psychiatrists to get in, but either they are not taking new patients OR you have to get your primary care from MGH in order to get to see one. I am making my way through the system but it hasn't been easy.

Most insurance company's will cover an EKG on a healthy child if billed with the code for prolonged use of medication. It's v58.69. Two if my kids had them for Zithromax. Without proper coding it would not be covered. I agree that one would be helpful for athletes.

Thanks fantastic!!! Thanks for sharing your great news!!! Have you checked out the bed setting store? They have all sorts of devices and often times insurance will pay for it. Also ask your child's dr bc sometimes you can get an rx for some is of the items. I know a few kids that had great success with an alarm that goes off when the kids start to pee. There is an electrode that Sences when they get set and they are able to same up and to I their own in a shirt period of time.

Thank you so much for posting this blog. I am going to read this book, its exactly what I needed. I think it can give us all great hope that we can and will beat this and that what we are doing will make a difference. Sometimes just understanding what our childrens lives are like can give us the strength we need too carry on. Sometimes as a mom we get so fed up, tired, exhausted, drained from this fight that we loose sight of the end result we are striving for. Independent, strong and healthy adults. They will get there and this author is proof.

I'm so sorry to hear a our tour co workers husband. How awful!! And yes, that does put things into proper perspective. I can remember DS being hospitalized for 10 days with all kinds of tubes in his body not knowing if or when his intestines would ever work again and feeling so sorry for myself. Then I met my neighbors in the room next door who had a son in his 30s who lives there bc he has always been so sick. The parent were in their 60s and had a child who would never be well or walk or talk and I knew right then how much easier I had it. Sometimes a little perspective goes a long way. Our kids WILL get better!! All of them!! I also Know how exhausting it is to start over. You will be energized when you see that this team knows what they are doing and actually help your child. Good luck!!!

Just pm'ed you the info

Often times the rapid will be negative but the culture will be positive. The culture catches what the rapid can miss and is more accurate. I am told there are not usually false positives on the rapids. That is why the doc will usually wait for the result of the rapid and if it is neg will take another culture to send out. Quite often a child will not test positive while on antibiotics just be a use the strep bacteria is in hiding deep within the tissue. This would however be a false negative. Only the titres that have risen significantly and other bloodwork would be indicative of a new infection. In some ways you are lucky you were able to confirm with the rapid. In still waiting to hear if my daughters culture is positive but our ID dr wants to treat for if il even if its negative for the reasons I just mentioned.

A dear friend if mine has a 13 year old that is on topomax for migraines and it has literally saved her life with no side edfects whatsoever. Every person is different and one could have all, some or none of the side effects. I wouldn't not try a drug that could potentially relieve a lot of suffering because of what you've heard other experience. Of course, I would listen and take more and watch for adverse side effects but not be deterred based on others experience if that was what our doctor recommended. With that said, I personally would not add a new drug before the EEG. It might also be interesting to perform another EEG after taking the med for a while to see if it did improve things. I guess the question I have is why are you doing the EEG and what would result from an a normal test? If I would be denied services or procedures from a normal test I would definitely hold off on tryi g a new med firsst. Here is a link from topomax website. It does appear to alter some of what goes on in the brain so again, I would be hesitant to start before the EEG. http://www.topamax.com/how-topamax-may-help--how-works.html

No I do t believe it is possible to show an infection. You should ask the dr to document if be sees unusual or enlarged finding especially in the tonsils. Then request the doctors office notes from that visit. That way you have the documentation to pursue other specialists if that is an obstacle at this point. Otherwise a white blood cell count might help support an infection one way or another. If you are certain there is an infection you could go back to your Ent or better yet, find a new one since you disagree with this one.

Have a wonderful time, you both deserve it. As for computer games, have you tried to put limits/conditions on it? My kid wants to be an addict but now he can only use iPod for 30 minutes at a time and only after 30 min if outdoor activity. I also had to go through his games. I had no idea that some of the apps work like crack dealers. I found out there were "online pets" that need to be fed every five hours or they die, and other games that encourage obsessions and anxieties forcing them to check in very frequently. I am horrified at the tactics the creators of these apps and games are using to gain usage. I'm sure you are already on some way to monitor. You could also set the tuner and tell him he can't talk to himself for 3 minutes at a time in exchange for a certain amount if screen time. Then slowly increase the increments until he has it under control.

My kiddo is on intunive and Zoloft. Both low doses and no longer has the racing thoughts. OCD and anxiety is still there but not debilitating. I can't believe now much better he is. Can't say it would work for everyone but we are so eased with his progress.

Great response Dedee! Thanks for putting that out there. My drs wanted ekgs on both my kiddos for long term use of abx and intunive. Our PCP did the test and it was perfectly normal. The psychiatrist looked at the result and it looked as though there was an abnormality but I fact it was perfectly normal for a child, not an adult. I would agree that a ped cardiologist is the way to

I would also inquire a out doubling the dose if you don't consider switching to Augmentin. We are treating dd for strep and she was on Zithromax. We are doing 10 days of Keflex at 500mg twice a day and then taking it down to 250 mg twice a day long term. She is 4 and weighs 40 lbs. I am in the same boat and know how upsetting and frustrating it is. Did you get a positive culture or rapid?

I just registered!!

My guess is that you would not treat anyone with high dnase bc it is indicative of a past infection. I learned from an infectious disease doc today that titres can stay elevated for a year or more. But I second pr40 to ask your child dr for a plan for the whole family regarding keeping strep out of your home.

Thanks so much Dedee. I am just blown away by the wonderful doctor I met with today. He was compassionate and took the time to not only listen but explain so many things. I am beyond thrilled! The most important thing I learned from him is that we shouldn't be chasing the titres. He said the ASO can be elevated for a while year or two and is not an indicator so long as the numbers fall, however slowly. He recommended we check every 4 months unless we have a significant reason to look, such as fever sore throat, ect. But not to check blood just to follow the titres. I think we were expending a lot of energy wondering why the titres are still positive after all these months on abx. We are switching up their antibiotics. we are going to treat DS for an active infection on Keflex for 500mg BID for 10 days and then keep her on 250 BID for long term. (She's 4 and 42 lbs) DS is going to remain on Keflex 500mg BID. We will see how they do. He also referred DS for an immunology consult that I am excited about. This dr does administer IVIG if its appropriate. I couldn't be happier with how this appointment went. It gives me great comfort to know we finally have a PANDAS specialist that understands and cares.

What did your dr recommend? I think it depends not only on safety but on your kid as well. Assuming its safe to be exposed to other kids, are you comfortable sending him to camp or would you be more comfortable monitoring him for a while to make sure he is not having any complications or side effects. Or is he the type of kid who does better being preoccupied and would do better I. A structures camp environment? Do you feel the camp would be able to handle any physical or emotional disturbances your kiddo might endure? I know our camp would and I would feel comfortable and he would be better off running around and swimming, but others would t tolerate it well at all. My advice is to ask your doc and then Discuss it with your child to see if that is what would make him happiest. Wishing him all the best!

I'm so glad you found this place. I'm fairly new myself here dealing with two kids that have PANDAS. We now realize DS age 8 has had it since 2010 and Dd since last June although both were finally diagnosed this May when things became very debilitating. It sounds like you are really taking the bull by its horns and getting to the great PANDAS specialists. It takes some of us years to get that far. I realize you have been dealing with this for years as well, thank goodness you are on the right path now to getting your child help. To answer your question from my own point of view you asked how do you know if a treatment is effective or its just the symptoms waxing and waning. While its true that eventually And supposedly they will outgrow this when they hit puberty, some do not, as you will find young adults and even some older adults on this forum that are suffering. All we can do is try our best to pursue the infections that are causing our children's suffering. To do nothing would be unthinkable. I can tell you from personal experience that when you find the right treatment things can get better fast, even though they might not stay that way forever. When you try the wrong thing they certainly take a turn for the worse and you will know that also. Then there are those times they seem to take a turn out of the blue and we all scratch our heads. It's just par for the course. There are many things that can be helpful in combination. We are doing CBT with our older child, treating with abx, supplements as needed, Motrin, Zoloft and intunive. The last two don't treat the underlying condition but sure make life more bearable for our whole family, especially our son. DS is too going for many of those supports but she is in OT which helps her a lot. Trust your mom instincts and keep up the great job.

Dcmom you asked if we have a PANDAS doc. Well not yet, really. She has seen a PANDAS Ent but he only treats Ent problems but he did refer us to the ID dr we are seeing tomorrow. It can be very anticlimactic so I dare not get excited til I see how it goes tomorrow. I have waited so long and had so many opportunities fail. Fingers crossed!!

Well I did not call the office and I will be hitting the road at 530 am to make my appointment. Both kids are double booked at 9. The rapid was negative. It will be a few days before the culture comes back. The PCP said the reason her throat looks so bad is that there is a broken blood vessel on her tonsils which are so swollen. I have no idea why, but we will repeat her blood work again soon. Last month her ASO was still well over the positive range. I will let you know what happens.....she is definitely very sick.

How stressful! I wonder if a 24 hour monitor might be in order. I would ask about that particularly if here are any abnormalities on the EKG. The monitors can be worn at home but you do have to go in to have them put on and taken off. I'm sure a visit to a cardiologist might be in order. Hugs'nn