Missmom

My heart breaks for you.... I know it is expensive, but is there no way to raise some of the money to help him. Perhaps, community or church fundraising events. It may take longer to get the money but at least it would give your son that hope. Forget fighting with the insurance companies anymore, use your time and energy to find a way to get him help. I know it must seem hopeless to you now, but stay strong, you can do this.

I hear you and although I don't condone self prescribing, I can't say I have not done this myself. Sometimes we do what we have to do to see improvement. You need to get her on abx. ASAP no matter how you have to get it for her. You just can't risk letting it go on any longer. I would get those z-pacs and have those on hand as well. You never know when you may need them. I can't tell you how may times I have wished we had a doctor in the family.

Please post the link if you find it, I would love to read it.

Our ped. Neuro. Prescribed vistaril for anxiety although it is a simple antihistamine. It has been found to have a significant impact on reducing anxiety without the effects of all of the psych.. Drugs. And it is non-addictive. I haven't given it to my son in a while as it is summer and the anxiety has not seemed to be too bad at the moment, but after reading your post maybe I should start giving it again if it could help strengthen the bbb. Vistaril has also been around for quite a long time and is available generically. So it is pretty inexpensive so I always keep some available as needed.

Thank you so much, this was just the kind of info I was looking for. I figured it must have had something to do with an infection, just could not figure out why nothing keeps showing up on his urine analysis.. Just one question, did you have any sort of herx response when you started to detox your kidneys? If so how long did it last? At least I feel a little more educated now and can go and do more research. Thank you for all the great info. The lemon water is easy, the other stuff we will see. My son is 12 so he is pretty cooperative about trying new things if he thinks that they will help him. Since pandas it seems that is all we do is keep trying new things.

Another thing I have noticed is that it only happens when we are home, this makes me believe this is psychological in nature. But the pain is there and it is severe when it happens, like I said my son is doubled over in pain but only for a few mins. I am just not sure what to do. We have not been to a urologist yet, but other doctors have just dismissed this after the urine tests all come back clear. I hate pandas!!!

Could he actually have a strep infection? I know when DS starts having trouble sleeping again, all the other symptoms follow shortly afterwards. When we treat for strep, sleep improves (this could also explain the increase in anxiety.) When you test for strep, do you only do the throat culture, or do you also do ASO? My DS's throat culture is almost always clear (which means he's carrying the strep somewhere else.) But, ASO and AntiDNAseB go up. BTW, 5-HTP has helped us a whole lot. It's one of the very first things that Dr. K. ordered for my children way back when, and whenever we try to eliminate it, symptoms increase (it helps keep tryptophan/seratonin levels up.) Sorry, but just wondering what 5-HTP is? Is it available over the counter or by script only? My ds is also having sleep issues I have started him on augmentin again. Thx.

I will let you know. It is just a very weird symptom because it is not consistent at all. I wish it would go away. The reason we have not been to a specialist yet is because each time I think it has not happened in about a week it starts again. Thanks for responding.

Well, for several months now my son has been complaining about pain in his side immediately after urination. This is a sharp type of pain and usually only lasts a couple of minutes and then he is fine. Sometimes he is doubled over in pain though when this happens. Here is the strange part of all of this. It does not happen every time he urinates it only happens once or twice a week, and also the pain switches sides sometime it is his left side and sometimes it is his right side. I have had his urine checked for UTI several times and it is always clear, no infection. Also I asked his pediatrician about kidney stones but he said with kidney stones the pain would not come and go, it would get progressively worse. The pediatrician said it was probably a spasm. I don't know but it did all seem to start around the time that his last major pandas flair started in feb. or march. He is taking abx. also so that should clear any possible infection. Any suggestions??? I guess I will need to add another dr. to my list and make an appt. with a urologist. Ugggggg

There is the NIMH study, I don't know if they are still taking patients but if you are desperate that might be worth a call. Also another abx study going on with dr. Murphy in Florida. Also be sure to check out a list of drs on this site and also Beth Maloney has a list on her site. We used one of the drs listed on this site although not one of the "top five" as most of them don't accept insurance. It is definitely a roller coaster but things will get better. I also agree with what others have said about going to an urgent care in the meantime. Tell them what you have learned. Sometimes they are more willing to write scripts than pediatricians. Just until you get in to a specialist, these ideas might be helpful. And I second the ibeuprofin suggestion. Good luck.

You will hear this a lot here but one of the easiest things to try right now would be ibeuprofin. You will probably need much more than that but at least it may calm him down some until you figure out with your doctor a better protocol. Also others on this board have tried Pepcid at night as well. Sounds like you will have a long road ahead but until you can get the abx for Lyme and pandas whichever you and your dr. Decide to treat first, that would be an easy place to start.

We use keflex daily as prophylactic. Then switch to augmentin for flairs. The last flair I tried biaxin instead and that seemed to almost make tics worse. I won't try that again. I also think your one year old had an eye blink tic. That was one of the first tics my son had. The abx may have cured the infection that caused the tics but the antibodies continued to attack for the next few weeks before eventually weakening and dying off. That may be why you saw improvement after you finished her abx. Just a thought but I would definitely get her tested as well.

Does anyone have any info on what treatment these girls ultimately received? The article mentions all but one girl is symptom free. I wonder if they used abx., detox, steroids, ????

Egyud, Sorry, did not know that ruby was your daughter, just want to let you know she is great. What a great attitude she has, I am so impressed with her. I just know that when she gets well, and she will get well, she will go on to accomplish greatness. You are an incredible mother to have raised her to be such an inspirational young lady. But going back to the cycles, I hope that you find answers. I don't exactly know how the nine days would fit into a monthly menstrual cycle, but I do know that personally a lot of my own PMS issues resolved once I started taking birth control pills. I always had really bad cramping and moodiness that would start a few days before my cycle and would last until a few days after. Probably a total of 8 or 9 days. Not sure I had any issues during ovulation but that would have probably started 8 or 9 days after that. Not sure but that could be some kind of pattern. Anyway, wishing you all the best and will keep you in my thoughts and prayers. Linda

I have been following a young lady on YouTube that has been twitching constantly now for about four months or so. She has pandas. You can look her up by doing a you tube search on pandas syndrome. Her name is ruby. In her latest video she describes the exact same pattern. I suspect this may be hormone related. Have you tracked this with her cycle at all. I have also wondered about the theory that some children seem to "out grow" PANDAS at puberty. To me that would suggest hormones would play some role in strengthening the bbb. I know it would be controversial to give children hormones but just curious as to whether or not anything has been tried along those lines.

Inside Edition did a short segment on pandas tonight. So happy to see stories like this.

I have found that as each year passes the exposure seems to be less and less at school. Day cares are breeding grounds for germs. Kindergarten was really bad as well, but then each year seems a little better after that. I volunteered quite a lot at school when my children were younger and was totally disgusted mostly in the cafeteria. The children are usually seated really close to each other and often times would sneeze and cough on everything. At that age they have no concept of covering their mouths or anything. By second grade though I saw major improvements. The children have more awareness of cleanliness and are more aware of spacial issues. If that makes any sense, they kind of know more about their own personal space and feel a little more aware of people crossing into their personal space. Also, most second grade classes where I am from use individual desks rather than tables to do their work. Kindergarten and first grade have tables. This would also decrease the spreading of germs. I would go tour the school and see how the second grade classrooms are set up and see how comfortable you feel with the situation. Also, if you do decide to send her into school, you could make sure she wipes her desk down with a wipe every day, and maybe ask her teacher if she could keep her own bottle of sanitizer at her desk. If she wants to go back to school and she feels comfortable with the classroom environment then I know you will have a very difficult decision on your hands. But if you are not comfortable with it then there is always third grade. Good luck.

Others can correct me if I am wrong but I think I remember reading that some have used mucinex with some success.

Well, we live in Mississippi, one of the two states that does not allow the religious or personal phylisophical exemption. They are very strict in this state... I will not vaccinate after this pandas episode.. No way no how! I am so tired of the beaurocrats trying to make the medical decisions for our children. I don't want to homeschool, and my ds 12 would not like it but I would do it in a heartbeat before I would vaccinate right now. I did ask our pediatric neurologist to write the medical exemption for my son and she agreed, but the decision is still ultimately up to one man who is our district health officer. If he declines the exemption for whatever reason this momma will be highly perturbed.... They just will not hear the end from me. I will stop at nothing to get him into school. Let's just hope all goes well and my son can start school in August. Be thankful that most of you can obtain a religious or personal exemption with no questions asked.

I'm very confused by this. White blood cells fight all sorts of infections - bacterial as well as viral. I'm not understanding how a WBC test can tell you whether to prescribe abx. I was confused also, but maybe if it is bacterial the wbc count is much higher. I have never asked what range they use to determine this but obviously they use this method all the time. We all use this particular after hours clinic frequently. Each and every time we go with basic cold/flu symptoms that is all they do. One day I went in for myself and they pricked me and said... Wow..the positive news is yours is bacterial so we can give you abx, but almost every other person they had seen that day with simular symptoms had been viral. I usually leave wishing I knew what the heck me/kiddo had though but don't want to request other labs because those after hours clinics are expensive enough as it is.

My DS is not a patient of Dr.T. But just knowing his good reputation on this board, and in the Pandas world. I am sure he will automatically run a full panel of blood work just to get you started. I am assuming this is your first visit with him since you are coming from abroad, but you might want to bring with you any labs you have from your other doctors. I believe you will be in great hands and it sounds like you are well prepared. Also, I know there was a thread on here a few weeks ago with others who were exchanging lists of tests to run. You may want to read back a few weeks and maybe you will find it. I am not sure the search feature will help because I have not had much luck searching with it. It may just take you a little while to find the thread.

Thanks this was the first time he had these tests run. It was our first real pandas apt. So I don't know what the trend is. My son is doing pretty well for now so I really don't want to do any more strong abx for the moment, but he is still not 100%. Which is where we all want to be. I am constantly second guessing myself. Should I do, or have done more or less of whatever. Just was alarmed by any positive result on anything related to strep at this point. Thank you.

I just got my ds labs back today and everything looked pretty good except his streptozyme screen came back positive. His ASO was negative and anti DNase B was 275. Normal is between 0-375. Strep throat culture came back negative ( although I never trust that they get a good enough swab on the throat). I called the dr. Today but they are out till Friday. Just alarmed by the streptozyme screen. The streptozyme titer was 1:200. And standard range is <1:100. He is taking on daily prophylactic abx. but i don't know if I should start a treatment dose again based on this result. He had just finished a full course of biaxin before these labs were run and I was kind of hoping to give his body a break from all of the full strength abx. I already searched the forum but could not find any info about starting abx because of these a positive streptozyme screen. What would some of you do?

Yes.... Do whatever you can to get abx. Until you can get in to see a specialist who will run all the necessary labwork. We had to wait over three months for our apt. With a ped. Neurologist who knew what labs needed to be done. I did have a pretty good pediatrician though who was willing to give my ds the abx. He needed to get us through. Now I have enough prophylactic abx to last almost a year, and plenty of refills on treatment abx for flairs. At least you won't feel as helpless if you are able to try abx. Wishing you the best.

Well, I kind of agree that the peds are too quick to call everything a virus, but when I go to a local after hours clinic (which is usually where I end up because my kids never get sick during office hours). All they do is a quick finger prick and test the WBC count. This easily tells them if it is viral or bacterial. Then if it is bacterial, they usually prescribe some general abx. And send us in our way. That is almost as frusterating because although you get abx. They never test further to say what it is you have. Could be strep, bronchitis, ear infection, etc..... So then when you see another dr. And they ask what you had or have all you can say is "well all I know is it is bacterial". So anyway I know you can determine if abx. Are needed, but you also kind of want to know what it is you are treating. It is all very frusterating.