JoyBop

DS age 4 has been doing amazing the past month or so since starting Zithromax. I was starting to feel like we were out if the woods until BAM!! School called. She had 102 fever and says her throat is too sore to swallow. Bringing her to the dr on a few hours. The most frustrating part is that our pharmacy screwed up her Zith. I picked up her last few bottles and they premixed it. I'm supposed to reconstitute it myself as needed. I didn't have time to bring it back bc we were headed out if town. Im panicked that I have been giving her ineffective medication as it has a short shelf life. The other issue us that I've waited 3 months to get in to the infectious disease pandas specialist which is tomorrow. I'm a little freaked that I might have to let the office know she's sick and I might not be able to expose her to their patients. My PCP told me not to make the call bc she is on abx and therefore shouldn't be contagious. I feel so panicked and stressed!!

Thanks for posting!! This is fabulous. I am going for sure.

We have been exploring the same options ourselves. My daughters tonsils are enormous and pitted but that doesn't qualify her by insurance to have a T&A. Our Ent ordered a sleep study to see if she had apnea. If I had said I witnessed her breathing stopped at night he would have proceeded with the procedure but I couldn't lie and really don't want the operation if there isn't a just cause. Insurance won't pay to remove enlarged tonsils unless it caused obstructed sleep apnea. Every insurance co is different but many insist that there be 5-7 positive strep cultures in a year, or sleep apnea. With that said, if an ENT opted to do the surgery electively for the sake of trying to prevent strep in a PANDAS pt then you could always pay out if pocket. Again, my DS tonsils are so large they are pushing up against each other and the ENT commented on how huge they were. But he and I both know that that alone isn't grounds for a T&A. These are all tough issues to navigate for sure.

Thanks for taking the time to post all if that. Now I am finally beginning to understand the value in genetic testing. We hadnt considered it yet but now I am thinking about it as we are realizing the importance in all these factors. We started DS on 1000 ius of vitamin d and he hasn't had any ill effects. He also started Zoloft about 10 days before and he told me last night he feels so happy he just can't help but smile big. It brought tears to my eyes! Who knows, maybe the d is contributing

I live in MA so I can't be of much help other than to suggest that a PPO is much better than an HMO. While PPOs can be more expensive you can see pretty much any doctor that is will accept your insurance, and in many cases get reimbursed even when they don't. ( this is conditional and based on the plans rules and is sometimes only a partial payment). With an HMO you are very limited as your PCP must refer you to a specialist that is within a limited network. It is very difficult to get approval for out of network although some have had success depending on the plan. New health care laws force insurers to provide primary and preventative care and not just catastrophic coverage. The deal with deductibles is that you can have a higher deductible in exchange for a much lower monthly rate. It's a bit of a gamble for families like ours bc we are almost certain that we will be heavily utilizing health care. You win if you have a high deductible, low monthly rates, and a healthy family that manages not to see the doctor a lot. We have a situation in our office where we went with a higher deductible plan but to offset the staffs expenses our office agreed to pay the first half of the deductible for each employee through an HRA account. That way the office still manages to save a bundle while helping defray the high risk of the larger deductible. What is a large deductible? That answer varies greatly. I was talking with a friend lately who was complaining about his deductible. I asked how much it was and he told me $500 per family. I howled!!! Our deductible is $2000 per family member with $4000 per family max and $8000 out of pocket costs which include rx copays and office copays. The office will pay the first $1000 which certainly helps but it comes out of our own pockets since we own the business. Health care for our staff is the most expensive overhead expense. But I know some people have a much higher deductible than ours so its all relative My advice is to go with a PPO with a deductible that the staff can handle. If not look into HRA accounts to see if your company can share in the risk to help bring down the cost for everyone. As it works out for us, even if every employee hit the first half if their deductible we would still be saving $20k on premiums. If no one used any deductible we would be saving up to $14k more than the plan with a lower deductible. It's a numbers game for the business but as far as getting the most out if your insurance plan you want the plan that allows you to see whatever doctor you want (within reason) and a plan that is happily accepted by many. (In other words a company that pays well and timely). The other thing to look into is your insurance plans prescription formulary. These are posted online in their manuals and can be googled. Some of the better payers such as blue cross blue shield are very generous with drs and letting you see who you want, but make getting name brand drugs impossible. They make drs fill out a mountain of paperwork and require that you try at least two lower tier drugs first for many conditions. Other plans have the opposite approach. We have an HMO bc we can't afford the PPO. For the most part we get to see who we like but pandas drs are not included so we loose. They are however very generous with their formulary and we get name brand drugs with out a hassle. We have Harvard pilgrim and they do not support the pandas diagnosis at all and will refuse to let me see out of network providers and won't pay for IVIG. I have been fighting appeals for months now! Their third party drs send me letters stating the literature does not support the treatments we are requesting. I have also been told by the higher ups if I had a PPO I'd be in a different boat, but we can't afford to pay the additio al $8ok it would cost the group. It's cheaper for me to cough up the cash myself. Sorry to ramble, hope that's helpful.

It might show up but that technique is not used clinically which is why you are not finding it anywhere online. In other words, if you asked if the image showed enlarged tonsils they might comment one way or another but it won't get you much more than a consult to an ENT or other doc of if it looks problematic. Any one can clearly see if to ails are enlarged by looking directly in the throat though. I hope that is helpful.

It sounds like you have a great plan in place. I hope he finds reeling soon.

I'm so sorry this has been so difficult. It is possible that the Prozac was that effective at dealing with your child's anxiety and OCD and all of it flooding back can be just unbearable. I understand the dilemma however, you want to get a baseline to see if the treatments are effective and therefore know if you don't need to continue with the ssri. But in this case, it seems like he still needs it and you will have to keep plugging away with your doctors until you are able to deal with the ongoing infections. Anything that helps your child feel better and your family function better is worthwhile so long as it is helping and not hurting. I too feel awful at times that my child is now on 9 pills a day. I have toyed with the fact that this is an auto immune disorder and I shouldn't be giving him intunive and Zoloft. But the fact is, the meds are helping him tremendously and we know he won't be on them forever, just until we can get this under control. My advise would be to discuss with your dr the possibility of continuing with the treatment and then pursuing other infections you might be missing somehow. Has he been checked for myco? Our pandas dr considers any titers over 150 to be a possible trigger for pandas symptoms even though its far from a positive result. My dd has done tremendously better since we treated her for it. Out PCP would never have figured that one out!

It sounds like she is in a wonderful place! So glad she is having such a successful and exciting time at camp! It gives us all hope.

Sure. There is a lot written but here is a comprehensive document. http://autoimmunityresearch.org/preprints/WaterhouseAnnals2009Preprint.pdf Here is amother article https://chronicillnessrecovery.org/index.php?option=com_content&view=article&id=175 My kids that have PANDAS also had horrible HI problems that were severe and never fell into any diagnostic criteria except for something autoimmune. They both outgrew it and were both managed well by removing foods that caused inflammation. When I saw inflammation, I mean they caused intestinal bleeding and paralysis of their intestines requiring hospitalizations. There were never any signs of "allergy" ex no blood tests were positive and no eosinophils found in intestinal tract. Dd outgrew at age 3 and got pandas soon after. DS outgrew at 5 and got pandas within the year.

We had dh's vitamin D tested and it was deficient. I'm wondering if anyone here has made a connection. I have been suspicious of the intracellular bacteria theory for years due to my kids other autoimmune issues and this really raises the flags. If that theory is true then supplementing him with vitamin D may make things worse. Does anyone have any experience/suggestions? We have chosen to supplement him with 1000 ius a day for the time being but not sure which direction is right. Perhaps its time to pursue and immunologist? Anyone know of any good ones in MA?

It seems to me that many pandas kids react to others who have strep even though they may not have it. One role of continued abx is to prevent future infections. I would imagine that when others have active infections around us that that would be the perfect time for prevention if not treatment of symptoms. I haven't been doing this long enough yet to advise and we are still on daily doses, but I would think a months worth of abx would be a good idea, and them try to slowly wean to see if your child remains stable. If not, continue. I'm sure every child is different. My two kiddos still have high pos titres 7 months after infection so its hard to tell where one started and another ended. Do you have a dr that would prescribe?

http://en.m.wikipedia.org/wiki/CDKL5

Personally if I had no desire to see that Dr again I wouldn't pay the $300 for the consult. Any dr can interpret the labs for you and I'm pretty sure a lot of knowledgable people on this forum could help as well. The question is, are you done with Dr t? Or do you want to get the results and find out what Direction Dr t wants to run with given those results and then make your decision? Again, you are not obligated to do the phone consult and the labs legally belong to you.

That is interesting that many wait for the child to be 80% better. That is exactly where my DS is. He can function fairly well but is ridden with OCD and anxiety. He's able to hold it together but on the inside he is still a mess. I was wanting IVIG when things were really bad but now that he is at 80% I feel like maybe we should leave things alone. I'm so grateful to this forum and heating all of your journeys.

Our doc said that although that strain of strep is non pathogenic he advised us against using any probiotic that has it because our son has had horrible intestinal problems and leaky gut in the past. He is also restricted from any dairy products for the same train and does much better without it. When he was younger his intestine bled from dairy so this is a no brained for us. But most people with a healthy gut will not have a problem with it.

No I didn't feel offended at all, but thanks for your consideration. I hope I didn't offend you either. Online communication is difficult bc tone can be misinterpreted. Back to the OPs original question, 6 weeks should clear them of any medication left in the system. So you have a ways to go before you know what your baseline will look like.

Sorry...posted twice by mistake. 😀

Lauren, most people on this forum do understand that symptoms they mention are caused by an autoimmune response, not the strep or other possible infection itself. Most of of us don't feel the need to have to reiterate or explain this when everyttime they want to briefly refer to a symptom. I thought it would be I interesting to add that our neurologist explained that the rage and othe mood issues are also common as people recover from brain injuries and severe encephalitis. So in fact it could be part of the healing process which I find fascinating.

Thank goodness !!! Glad that worked out and good luck at school!

We haven't tried steroids yet. I suppose that would be our next bet. We have been reluctant bc he was on them quite a bit when he was younger. We will have to consider that next.

Please share with me how symptomatic or functional your child was when you made the decision to pursue IVIG. I know there are expenses and risks and I am trying to wrap my head around this. We are seeing a pandas ID doc in Aug and I want to get a grip on wether this is something I want to pursue. I don't believe my I insurance co will pay for it and dont even know of this doc prescribes it but I wanted to get a heads up from all of you on when you pursued IVIG.

You would have to call your insurance company. Who knows? You might get it covered based on medical necessity particularly I'd a dr write a letter for you. My guess is that without a big stink they wouldn't want to pay for a mom emergent private company so if you try that route, be sure to get it pre authorized. If you can prove your child will not receive life sustaining treatments due to inability to function and go to appointments you may get coverage. Whenever I ask for such things that I know would not normally be covered I usually through in a limit such as we are only requesting so many rides within a certain period of time and after that we will absorb the cost. But save that bargaining power for your second appeal if you have to go that far. I also wonder if an ambulance would be more traumatic than a car ride. How about getting a d d player or letting him play a computer in the car or some other enticement?

Maybe I can help shed some light on the discrepancy between what the insurance co and the doctors office is telling you. I work in a private doctors office so I have a lot of insight. Privates are free to accept patients for any insurance plan they wish and can change at any time. The office will contract with the company for a set fee schedule for a certain period of time. Often this is accomplished through large groups of physicians, but that is more than you need to know. In any case, a private practice will usually limit the number of patients they accept newly into the practice if their insurance doesn't pay very well. That doesn't mean they will kick out their existing patients with that plan but they can not afford to have greater than a certain percentage on those plans. Also, the office may choose to completely eliminate working with that company even though there may still be a contract iin place. The contract simply guarantees a fee schedule and terms of payment to the physician but in no way is the practice obligated to see their patients. I can tell you Cigna is a very poor payer in the state of MA but I have no idea how it compares to CT. In any case, always go by what the office tells you and not the insurance co in regards to what they accept. There are other times you listen to what your insurance tells you but this is not one of those times. Ill give you a working example. Tufts is a big insurance plan where we live. The fee schedule is awful, they take way too long to pay, and do all kinds of obnoxious things to take monies back up to three years later. (Such as sending a form to patients a year later asking if a visit was related to an accident or workers comp. when the patient doesn't respond bc they don't understand or think the form was ridiculous, they take the money back from the doc. We have to bill the parients and they get made, ect) So we get fed up and refuse to take any new Tufts patients but we don't dump the patients that we have that have On it. One day we might decide to forget it all together and ask those tufts members to either switch plans or find a new doc. Hospitals and other clinics that accept federal funds do not have this freedom. I know that was a long story but hopefully I can help shed some light on how some of these things work. To answer your other question there are pandas savvy doctors that come in all different specialities and are scattered around the country. Maybe someone from your area could chime in a tell you who is good that might be in your area and accept your insurance.

Here's a good place to start. http://thyroid.about.com/od/gettestedanddiagnosed/a/testdiagnose.htm The only thing an endo did for me was an ultra sound right in the office exam room. They will look for a goiter and nodules ect. Th one thing I can tell you is that the generic form of synthroid never worked for me. Synthroid is the only thing that works. It's a very unstable med with a very shirt shelf life. It's been documented very thoroughly that the generic tablets deliver a very inconsistent dosage where as synthroid is very consistent. It's a very easy disorder to manage with just a little fine tuning in the beginning. And that is coming from someone with severe disease. Most people I know are on .05 mcg or .25. I'm on 350, they don't even manufacture a dose that high so I have to take a couple different prescriptions to make up my dose. You do have to be careful not to take with antacids or dairy products I take mine at bedtime where it won't bind with anything else making it ineffective. I would do all the tests initially but once things are under control you o my need to keep an eye on tsh free t3 and 4. Keep in mind that your chide normal might be slightly outside the expected normal range. So e docs won't treat this minor differentiation without symptoms. Please let me know of you find a connection. With the PANDAS. Is be fascinated!