Missmom

Has it been confirmed that united will no longer cover ivig after November? On what basis? We have united and although not considering ivig at the moment, it was comforting knowing that it was an option if necessary..... Not so comforted now.

I agree with most of these posts. At the very least a trial of abx. and ibeuprofin should always be tried. If after a month there is no improvement then look for other pieces of the puzzle but knowing what I know now I would not just accept a Tourette's dx. No way, no how.....

I know...... we have a new clinic in our area and I went there requesting a simple liver function test on my son because of all the abx he has been taking. Just a simple lab-bloodwork, right. Anyway, before they would see my son they wanted all records from our neuro. As to why he is taking so many meds.. I got really frustrated and left there. I did not see the reason to have to divulge my sons entire health history just to get a simple lab test done. I left there and went to a local urgent care and they did it no questions asked. I thought it would be good to give this new clinic some business, but not if they are going to ask for all of that info up front... Won't go there again... I am so tired of feeling like I have to justify all of this. I think you should be able to shop around for someone you feel comfortable with before sharing all of your personal info. Good luck at rothman.

Yeah, I know..... I think some types of abx actually make tics worse for some kids. I can't speak for cipro because we have never tried that one and all kids are different but I would suggest calling your doc. and switching to a different abx. Try going back to something that has worked in the past.

Have you thought about trying baking soda. When I was a kid my mom would sometimes make me brush with baking soda because she felt it cleaned better than most toothpastes. I personally never liked it but it did clean well.

Since the tics did not start immediately with the video games, you said he has had it for several weeks, I would also look into strep or other illness, exposure. For some kids, tics are the first symptom to appear. Ask him if he has had a sore throat at all, and consider starting some abx. I know it feels never ending. I am always afraid to say when we have a good day, week, etc... Hang in there.

Regarding her care, I know you really put all of your faith and trust in her pedi. who has been with you every step of the way, but maybe this is just the change you need right now. This may be your opportunity to have a different perspective on the entire situation. After reading some of your posts since I have joined this board, I can tell you definitely know more than most medical professionals out there. Maybe you should ask around for references on a great new doctor, who is willing to listen to you, and consult with your pedi. and maybe you can uncover stones that maybe you have not thought of yet..... It may take you "interviewing" several doctors out there and doing a lot of "teaching" them about pandas, etc.... But it sounds like you are up for the task. Also, in the end you are educating these doctors and hopefully spreading more awareness for many other children and parents who have no clue why these children are changing overnight. Together you all will be able to make this transition, although change is always very scary. As for your personal situation, you are strong and caring and you deserve to be happy. Just take one step at a time, one day at a time and you will get through all of this. Allie needs you more than anything and just keep yourself strong so you can be there for her. It will all work out for the best. My thoughts and prayers are with you. You have helped a lot of people out here in cyber-world through all of your posts and advice, and for that good work I know you will be rewarded in the end. God bless you.

I have also talked to my son about this as a side effect of strep throat or other infections. He knows we are doing everything we can to make it go away. He has been in " remission" several times and knows it can go away, it has just been a lot harder to get rid of this time. We also talk about what his symptoms are every day, and I make notes. I tell him to call me from school if he notices anything different or strange happening. I think it is best to talk honestly with kids and it sounds like your child is old enough to understand the basics. Don't give up and just assume that this will be a lifelong illness. We are all fighting this and because of so many of the moms here who are brave enough to try all of these controversial treatments we will figure it all out.

Good luck, and I am sure you will get answers to some of your questions. I know how desperate you feel. We have all been there otherwise we would not spend hours on the Internet looking for answers. This forum is wonderful, with lots of parents who are here to try help each other. It would help you to also have a local family doc. or pedi. on board to help you when you can't get to dr. L. You could check out some of the lists of treating doctors by state if you feel like you might need local help. Also remember to keep copies of everything, labs, medications, etc.... Glad you had support to help you and your hubby get through his illness as well. Good luck.

Thanks for posting the link, I should have thought of that.

Hi there, A friend of ours has been taking this for a couple of years and has seen a great improvement in his graves (spelling?) disease.... And just a dramatic improvement in overall health, so much so that he has decided to become a rep. And sell it. Also, my brother and his wife have been taking it and have bragged about the benefits. I watched a sixty minutes video which discussed several autoimmune diseases and the drastic improvements that many have experienced while on Protandum. Just curious if any of you have tried this or discussed it with your doctors. I would not want to try this on my ds unless others have had any success. I definitely would not want to send his immune system into some sort of crazy overdrive... Our friend did say it is safe for children to take though. I tried searching this forum and no results were found. Thanks

Ha,ha,ha..... I know the feeling, I just seem to wonder which side of the bed my ds will wake up on each day. His tics have been pretty bad this past week but attitude has been excellent.... Just don't understand, he has OFFERED to mop my floors, vacuumed the carpets, sweep inside and out, clean my windows, and cook several meals himself...... Who is this boy? Then he goes on to tell my husband. " dad, mom really does work hard". WOW! If only those darn tics would stop it would be perfection......

That is such a tough decision. My kids were fully vaxed on regular schedule before pandas, but I just got an exemption for my pandas son on his seventh grade Tdap booster. The process to get that exemption for us was brutal. We live in Mississippi which is one of only two states that don't allow any personal or religious exemptions, only medical exemptions. We got the dr. to agree to the exemption but still had to get it approved by a state health representative. Then the state lost our exemption..... Luckily I had made copies of the letter from our dr. to resubmit to the state.... Ugggg. I was able to finally pick it up the week before school. The govt. just needs to back out of our medical decisions and leave those decisions up to parents and our doctors. I was highly perturbed when i thought about the fact that one govt. official had the authority to decide if my child would be allowed to enter school. Anyway, If you do decide against some of the vaccines be very thankful if you live in a state where you can file either a personal or religious exemption for school. Don't let anyone bully you into getting the vaccinations. Follow your gut.

Also in this cycle right now and calling my doctor today to try and get more abx. Just finished three weeks of augmentin and now day five after putting him back on prophylactic dose everything is coming back. Sore throat, tics, headache, etc..... So frustrated, just want to cry! Why can't my baby get well.... I know you all know what I am going through. I hate giving him all these meds all the time. Should I ask for an increased dose? Or a different abx? Or just longer term of what we are doing? What do the pandas experts usually do in this situation? So many questions and the doctor has not called me back yet.

My son also had this happen when he was 14 months old. His pediatrician also gave me some excuse about "dead cells" showing up and creating a positive response on the rapid. He said the strep was cured and sent us home. Since my son is my first child and I did not know any better I just went on home and did not think about it again. In hindsight this is probably the event that led to his pandas. So frusterating......

Dear junkyard jean, Just wondering how you and other moms treat these exposure flairs.... Do you immediately increase the abx. or do you just give it a few days to calm down again.... This is what I struggle with. My doctor has my son on prophylactic abx. but I can increase the doseage as necessary to treat if symptoms get bad enough. Because his symptoms are always there to some degree, I never know if it is the "right" time to increase the dose. In your experience do the flairs typically resolve on their own, assuming your kiddo is not infected. Just curious....

One of the major pandas experts (I can't remember which one, I think either dr.t or dr. K) said that he believes most Tourette's cases result from either untreated or under-treated pandas. So with your history it is very likely you could have had pandas as a kid. Please be aware that a lot of doctors still don't take this very seriously so even thouugh you need to go in and request these tests be done, they won't always agree to do the tests. Also, many times when they do agree to run the tests they don't know how to interpret all of the results, so always get copies of everything. This way you can do some research yourself and also you can show these to other doctors. You will eventually find one who will listen to you. If you feel in your heart that there is more going on than basic childhood tics or Tourette's then go with your gut. My son also presents with mainly tics and with each exasperation they have gotten worse. This last strep infection also brought along with it the major hyperactivity, fidgetyness, moodiness, and urinary frequency. Pandas is so difficult to figure out because so many of these children present with different symptoms. If you really dig deep on this forum you can find lots of helpful information. You can also go to the helpful threads.

I know this is awful right now with the new school year approaching. Just FYI. Amox does nothing for my son and has never worked real well for any infection for him. I don't know why it took you so long to get registered for this forum, but glad you can finally get some answers. I can't offer much in the way of doctors in your area, but I know others will chime in on that. We found a good doctor on the list of treating doctors located on the pandas resource network. They list them by state so maybe you could find someone within driving distance to you. From what I understand the top five specialists have about a four month wait list so you would probably want to find someone close to home in the meantime. I really understand your frustration. Our pedi also wanted to say that I was crazy and that my sons tics must just be transient tics related to stress. I of course knew better. A child does not go from totally normal one day to non-stop ticcing overnight. He gave me a list of all the "good" psychs in our area. When the bloodwork finally all came back five days later positive for strep I was like-Duhhhhhh. Anyway good luck and I hope you get the answers you are looking for. This forum is wonderful and helps keep me sane. The moms here have a wealth of knowledge and are willing to help.

How did they test for yeast? Was it a simple urine test? Thanks

My son always had little bumps mainly on upper arms and legs. I was told it was allergy related. They have seemed to get better as he has gotten older. I think you are on the right track.

You can check out the list on this site or pandas resource network of treating doctors and find one close to you. Sounds like you need a new team of doctors. All it takes is one doctor to order a t&a for you. If you wish to go that route then keep trying until you find a dr. willing to help.

Hi pandakid11, I plan on trying to keep my ds12 on some type of abx until at least puberty maybe longer depending on if my dr. will continue to rx my son abx after puberty. He is taking 500 mg keflex once daily for prophylactic and then we bump up to augmentin. 2x daily for flair-ups. My question to some of the more experienced moms on this board is how do we know when boys hit puberty. With girls it is pretty easy they start menstrating. With boys I think it takes longer but should it be when their voice changes, or what. My son is 12 now and he is developing but it is still hard to know. I think most boys are pretty private about what is going on with their bodies especially in front of mom, at least my son is. He gets embarrassed and will not talk to me about any of it. So any advice on this would be appreciated. I asked my hubby and he does not really remember when he hit puberty, so he is no help. As far as outgrowing pandas, our neuro seems to believe many children will improve greatly after puberty, maybe not cured but much improved, and I have also heard of other doctors mentioning this.

Ok, so went to the urologist today and everything checked out totally normal.... They did an ultrasound on the kidneys, checked urine for bacteria and yeast etc.... This was an older doctor been practicing for a very long time and he was flummoxed... At least I know that his kidneys appear normal now and will just have to start focusing more on the detox stuff...

My son does the exact same thing all the time except he says "sorry" all the time.... If I say "please close the door". He says sorry, if he asks me a question and I answer it he says "sorry". I keep telling him you don't have to be sorry for asking a question... When others hear him say this so much they probably think I get mad at him all of the time.... Like he has the meanest parents ever... We have never spanked or yelled or hardly ever even raise our voices so for him to always be "sorry" is frusterating. He is also one to need constant reassurance about things so this all must be OCD related. He has never been in therapy, so I am probably not handling this as OCD, and I am giving him the reassurance he needs to get him past whatever the issue is. I don't know if I should be doing anything differently. It is especially hard when like your son people think it is such a nice gesture.... You don't want to discourage him from being nice and polite. I don't have any of the answers for you as to how to handle this, just want to say I also think it must be the OCD. With all of the other more major symptoms of pandas, I usually just let this one pass.

Definitely could be pans, or untreated strep. Does the child show any signs of OCD or any of the other symptoms. Her mother needs to dig deeper. Always curious when tics start suddenly.