JoyBop

I have has hashimotos since I was a teen. I currently take 350 Mcgs of synthroid. I have founds endos to be pointless and my PCP has always done a much netter job of managing my very complicated case. I would imagine pediatricians wouldn't have that same expertise as children often don't get thyroid problems. Do you see a family doc or ped? Just FYI the disease can cause a huge variety if symptoms, as any autoimmune disease can. When I was a kid I got terrible hives all over my body to the point of angiodema and needing hospitalization. As I aged I now only get brain dysfunction. I will not be able to find my car in a parking lot, not know where I am or where I was going (almost like mini amnesia moments) and not rembering where my kids are. My first symptom is always verbal processing. Ex. If I wanted to ask someone to open the door I might say close the window, or simply not be able to find the words to say at all. It's very easy to manage thyroid problems once they are identified. You have to do bloodwork every 6 weeks until optimal dosage of thyroid replacement is made. The worst my tab ever was was in the high 60s and I was hospitalized post pardum. I'm not sure there is a PANDAS link there or not but please let me know if you discover one. The thyroid antibody test can be ordered by any doc.

I was curious what the contents of what the OP has been using. 5 teeny scoops of a custom blend? I had been giving my kids thera biotic chewable a by Claire labs but the kids hated how they tasted. Too bad bc I spent $80 ion 2 bottles. I'm switching to Floraster caplets for my 8yo and chewable culturelle for my 4 yo. In most concerned about cdiff as both my kids have had intestinal problems in past

It's amazing that you caught on so quickly. It took many of us months or years so you are well ahead if the game. My advice would be to get the dr on board with the connection between tics and the infection and see if they would be willing to keep you on abx until the symptoms are down and titres are down. If this is PANDAS you may find that these infections don't just go away as expected with children with normal healthy immune systems. If you dr isn't on board you may seek out a PANDAS friendly doctor to proceed It's a wise idea to keep a daily journal so you can track and follow changes and developments. Often its in hindsight that we make connections but if its all documented well you have a lot more creditability with physicians as well. I keep a log on nothing my kids on a gmail doc. I have 3 doctors that log on often to keep up on their progress. Good luck!

Thanks for all that! We had the study and it was overall a great experience. I was impressed. There were only two rooms. They do one adult and one child per night. The tech was AMAZING with my child. She actually had fun and didn't want to leave in the morning. The only hard part was the mouth/nose piece. The tech tried at various time to put it on her during sleep but it didn't go well. She only had it on for a total of 2 hours. Im hopeful that was enough info bc its unlikely I will want to do that again. I didn't get more than 10 min if sleep bc I had to stay in her bed with her. The tech came in about every 10-20 min to fix something that came undone and if she startled and I wasn't there she would wake up screaming. The tech asked me to stay with her which I was happy to do. The adult that was there came an hour after us and left earlier so we never even saw them. There was only one bathroom to share and no shower but it was not a problem. Now we have to wait an entire month for results. She didn't snore much and I'm doubtful she has apnea, but I am curious to see if there were any findings.

I am thinking that you have two problems here, one that you can't get in touch with your practitioner. Communication is key. Did he/ she explain the plan and why they were discontinuing abx or until "what" happens? I understand that some drs don't want to keep kids on perpetual abx if they are symptom free but one would hope it was a decision that was discussed and a backup plan would be in place. I agree making a big change like that before the start Of school is scary and risky. I would recommend you continue to try to get I. Touch with your dr. If they don't respond I myself would be considering a change in PCP.

Just curious, how many positive cultures in a year? Our dr says 5-7 in a year or chronic tonsillitis is grounds for removal. My kids have chronically high titres but don't swab positive on abx. What are the reasons for doing the T&A? The way we look at anything medical is by asking do the benefits outweigh the risks. I'm speaking from my own experience when I say we decided not to do the surgery unless it was truly indicated. I know there are risks and I didn't want to go into that lightly. It comes down to trust in your dr. Have you discussed abx prior to and during the procedure? I've heard mixed results Re the effectiveness of avoiding future strep infections from a T&A. Both my older kids have has strep infections. FYI, they don't have tonsils or PANDAS. Keep in mind that this is an immune disorder, not a tonsil issue. So while removing the tonsils may decrease the frequency of infection, it may not help the immune system rid itself if the bacteria or prevent future infections. That's why I will only do the surgery if my kid meets today's full criteria for the operation. Some docs will do it without, but I choose a more specific route. You have to follow your gut on this one. You will gain reassurance from your doc and his plan of before, during and after abx for optimal safety. Best of luck!!

What is NAC?

Let me get this straight...you have in writing that they precertified the first 6 treatments within one year time frame. Your child received 3 of them and you got the bill? Did it go to your deductible? Did you get the entire bill, or was is heavily discounted at the insurance co contracted rate? (This is a giveaway if it went to deductible or is a "non covered" service). What was the diagnosis code used on the precert? I'm just wondering if something went wrong there. I do medical billing and handle these types of cases and appeals all the time so perhaps I can help. Feel free to pm me.

It takes up to 5 weeks to get the last of it out of his system. When did the symptoms pick up? Just after you discontinued? Or were they getting progressively worse as you tapered down. I can't give advice but it sounds to me like the Prozac was helping. Have you made any other changes? My DS was on 10 mg for 5 weeks but it was disastrous for him. He became highly agitated and suicudal. We stopped cold turkey and I would say he was significantly better In One week and returned to his baseline in three weeks even though I know it was in his system for longer. He didn't seem to have any withdrawal other than strange feelings in his head (shrinking) and slight dizziness. He just started Zoloft yesterday, hoping that will work better for him. What does your doc say ? Are you considering putting him back on? Have you tried Motrin twice a day? My child experienced exactly what you are describing when we stopped Motrin. 3 days was all I could handle and we gave it again and he is much more stable.

Can you tell us more about the dosage? How many strains and how many units?

Is there any strong indication for the surgery? Usually insurance won't pay for the surgery without meeting certain criteria such as many strep infections per year or sleep apnea. My dd has enormous tonsils but that isn't enough reason to take them out. We just returned home from a sleep study to determine if she does have obstructive apnea. I am doubting it, but like you, I don't want to put my dd through a surgery if it isn't completely warranted. Our pandas knowledgable ENT has done t&as on many PANDAS patients with mixed results. You can still get strep without tonsils although it "may" lessen the frequency. I can totally appreciate your apprehension. That is exactly the reason I just endured a sleepless night in a hospital hours from home. I figure if there is real data and concern for a good reason to do the surgery I will go through with it and take it as it comes knowing I made the best decision. But I was not willing to do the surgery on a whim that it might help her situation, even though it sounds tempting. With that said, two other children of mine had the surgery for severe apnea and it went very well so I have had good experience and results. My oldests recovery was very difficult due to the size of his tonsils. Healing took weeks not days like my second child. He went into surgery with a neck as wide as his face and came out with a pencil neck. The doctor had never seen such large tonsils that tendrilled down someone's throat. My second child was back to his old self in a matter of days.

Sorry I meant dd is the one getting tested tonight. She is only on Zithromax.

Thanks for all of your input. My DS is on intunive and will fall asleep if there is a lull in his day or he is in the car. It doesn't affect his sleep otherwise. DS is the one getting the testing tonight. I almost think its a waste bc I don't think she has apnea. But I have a great pandas saavy Ent who would live to have grounds to remove her extra large and scarred tonsils. I am going through with the study bc even though the surgery sounds appealing I don't want to put my daughter through anything that isn't medically warranted. She does mouth breath and snore but I've never seen her stop breathing. Two of my older kids did have horrible apnea and it was a no brainer. They never had sleep studies done. Luckily I have already maxed out my high deductible so we should be covered for the sleep study. It's at Mass Eye and Ear in Boston and they only do one child a night. Thanks for suggesting that I bring food! I wouldn't have thought of that.

I commend everyone for dealing with this hot and emotional topic so well. This is exactly why so many of us do come here for support and learning. I just wanted to throw in the fact that the doctor - patient relationship is a very individual and unique thing. What works for one or many may not work for everyone for many different reasons. Also, our children's conditions are all unique and we can not generalize others based on our own experiences. We are all on our own journey to seek the best treatment we can for our children. Also, medicine is as much an art as it is a science, particularly when dealing with such unknown and little documented disorder. No one doctor has all the answers and it may take some of us a couple dozen doctors before we find the right one for us. T Anna, I'm glad you have other avenues lined up for your Ds. And sorry again that this just wasnt the right one for you.

I just reread the instructions. It said two piece non silky pjs. We check in at 7:30 pm and get tossed out at 6am so I don't think there will be much time for boredom. What things would you suggest we bring or not bring based on your experiences? Any tips or suggestions?

For those of you that have BTDT what is your advice for going to a sleep study with a 4 yr old girl? She was very freaked out by an EKG but we finally got through that. Should she wear a nightgown? Two piece pajamas? Or does she have to wear hospital Jammie's? I usually play music for her at night. Will that interfere? I bought a bunch of small toys to bribe her with but not sure if they will be too stimulating Any advice would be much appreciated.

There's a PANDAS radio episode featuring Verh Maloney. I Bellevue it was the very first show. In any case, she must have said a hundred times to wean a child slowly off to see if they can tolerate it. I've not gone that route yet but when I do I will heed her advice. I know she's not a doc but I value her opinion. Hope that helps.

t Anna I am so sorry you went through that awful experience with your son. There is a solitary no excuse for the attitude. A doctor can respectfully give his opinion and supporting observation and we can take it or leave it depending on the outcome, but that was totally uncalled for ! I hope you do write a letter and kindly ask theat they respect children that are struggling and suffering from day to day. I am outraged!!! Best of luck with the PEX treatment and hospitalization. Don't give up!!

I saw a question in this Convo about beta blockers. My DS is on Intuniv which is a blood pressure med. it takes the edge off his rage and calmed his intense motoric hyperactivity. When combined with Motrin twice a day it is very effective. Only half effective without Motrin.

I don't think that anyone is debating what type of disorder PANDAS is at all. We are all fully aware that its an autoimmune disorder that can affect many aspects of an individuals health, but in particular, the brain. The point is that the doctors that have clinical interest in PANDAS span the board of specialties and you can't tell a person which doctor is right for them depending on their symptoms and the residency training a doctor received. We are seeing the following specialists that claim to have an interest in PANDAS patients; family practice, neurologist, psychologist, and infectious disease and we are just at the beginning if our battle. Don't give up and leave no stone unturned until you find the right one for your child, regardless if their specialty.

I think one of the things that is so interesting and perplexing about all of our children with PANDAS is that they are being tested for illnesses they are not necessarily presenting symptoms for. On one hand, we realize that there really is a weakness in the immune system that allows some if these sneaky pests in, but on the other hand, most healthy kids aren't tested for these things so we really have no idea what is normal. Bottom line is, there is no normal, its trial and error until we find what works for each kid. Case in point, my kids strep titres hadn't changed a bit after 8 weeks of abx. No dnase present either. It doesn't seen normal and he still isn't right so we keep treating. But we don't really have any data for comparison bc no one ever has their titres rechecked, especially if they don't have symptoms so it leaves us wondering...is this ok? Thankfully you have a dr that is discovering these things and working on it with you. Sorry I don't hVe any info, but I can totally relate the the dilemma.

I can totally identify with all the self defeating thoughts and rage and OCD getting in the way. But my child is only 7 and still looks to us for support. I can only imagine how hard this is for your teen and your family. I guess my take home point is that when they are irrational and defensive, reasoning doesn't work. You somehow managed getting him to the doctors beautifully last time. This might be harder as he will actually have to go in this time. If it were me I would be discussing a plan with the psychiatrist and admitting doctors for support and a plan. Have you ever tried a medication to take the edge off the rage? I know it's a last resort here, but you might consider it in order to get him into the hospital for treatment. Are they able to do PEX at home like IVIG infusions? Even that might be challenging. It would be awfully hard to get him to stay in the hospital against his will so I can see how difficult this can be. Do you work with a psych that can work with your do drs and hospital with a plan of action ? Even if you do manage to get him in the building how can you sustain him once in? I know our psych would be working on desensitization strategies now. Best of luck and hang in there!!!

Lauren, I'm glad you are getting such great results. However, I disagree with the comment you made about only seeing a neuro for neurological issues. PANDAS is a brain issue and there are many neuros who do specialize in PANDAS or treat pts with it who do not present with neurological presentations. My DS is seeing a neuro and he does not have any tics and presents with no neurological symptoms. Likewise we see a psych regularly for psych issues. She's the one who diagnosed PANDAS but she does not prescribe abx. There are some psychs who excel at treating with abx for this disorder. The point is, you can't put a specialist into a box and decide what or how they would treat based on title. We have to keep fighting until we each find that special doctor who can and will treat the whole child. Not just one small aspect of what this disorder presents. If I may throw in my two cents, I would keep searching if a doctor was that hesitant to see my child. If he were interested in the pandas case he would be scheduling your child as soon as possible. My point is we have to respect each doctors interests. Sounds like this one might now be the right one if you have to fight so hard to get in.

Well that's a different story! If it us bruised then you know its am injury. I have seen bruising last as long as 3-4 weeks but usually by that time it looks far worse than it is. Glad it's doing better!!!

Yes I totally agree that temps will fluctuate throughout the day. Also 100 is barely co side red a fever but give. The circumstances we can not be too careful. The question I would be asking is does your child feel sick? Or is he being active and going on with his normal routine, whatever that might be. Activity can increase the temp as well as am is t temperature. But if he is having active symptoms of fever or illness the. I would be more concerned than just a fluctuation in temperature. Some kids do run higher or lower than norm so your child's baseline has to be taken into consideration as well as his normal body cycles.