LindaMW

I have just been thinking about all the awareness that we families are trying to get out there and in support of the Wray family and others, why don't we come up with ideas like the rubber bracelets or things to make this more public. Since it is Breast Cancer Awareness month it got me thinking about the bracelet idea. We could do some kind of black and white theme (Panda colors)or any thing else. Anybody have any ideas? We need to make this more known to the public. The people I have talked to are amazed when I tell them what we have experienced. If this became known to more people maybe these doctors would quit fighting us and telling us this disorder does not exist. The Wray family is a perfect example of the support and information that needs to get out in this world. I am still fighting our own battle with my son and have a great doctor now, but we went down that road of no one understanding and it is horrible. My heart is breaking for the Wray family and I wish there was more we could do. We have the power of each other and we need to use that. Any ideas, please let me know. Linda

Thank you guys for all the support and ideas. I have sent a letter to his teacher and the school nurse already is on our side and understands probably the best. It is the attitude of the principal (sorry wrong spelling before) that does it. No matter what I say or do this man will never understand because he does not want to. He knows I will be taking my son out of that school next year and he just plain doesn't care. I am just worried about the rest of the year and hope my son does not get sick to that degree again. We do have a dr that will help and "gets" Pandas, but there is always the worry. If my son has to miss any school again this year I do not think this principal will work with us. It is a private school so there are also limitations there. Thanks again for all the support. Linda

The principle at my son's school is just so close minded. He just does not get it and really gets impatient with my son when his anxiety or panic flares up. Already today, two weeks back to school, and he calls home with a sore throat. He was in a state of panic and the principle got all impatient with him again. This man has see the worst of the flare ups over the last two years, you would think he would understand somewhat. My frustration is if this was cancer or some other well-known-about illness, people would be understanding and help you through the rough times. But because the main symptoms are psychiatric, everyone clams up and doesn't know what to do or tells you to deal with it. They do not realize that you need understanding more than anything with Pandas. This principle did that to us back in the spring when my son was missing school. He had numerous kids out with concussions and he is telling me I have to get my son back, he was missing too much. Was he telling the families with the concussions the same thing? I don't think so. That's what I mean, not understanding. Sorry to vent and go on about this. I know this is the only place where anyone would understand because they have been down that road. I hope eveyone else is having a good school year and stay healthy as the year goes on. I guess we have to just keep being positive. Linda

That has been my goal for the past few months. I have my son on a multi-vitamin, omega3 fish oil and probiotic. Plus I have totally revamped our diet. Cut out all processed foods and eliminated grains. Our doctor told us grains are very inflammatory. This has not been easy, especially for bread for lunch. I have gone with a gluten free, wheat free bread made from tapioca flour and my kids like it. Also trying to have them eat onions and garlic every day. Plus if possible kale and collard greens. I have found a recipe for buckwheat pancakes they like. Even though the name says it, there is no wheat in it. I have to become very inventive with cooking but it is well worth it if it keeps them healthy. It really is a full time commitment and I know in todays world that is hard. Research as much as you can about immune boosting foods and supplements. There is a lot of information out there in cyber world. If you have any questions this board is the best, great bunch of parents. Linda

It is always a hard decision to make for our children. My son has been in a private school since the beginning, he is entering 4th grade this year. Now all our Pandas trouble started in the middle of 3rd grade. Again this is just our experience, I know it is different for everyone. He ended up missing about two months of school and unfortunately, the school did not have an EEP or were they able to provide a tutor. So again, it is different for every school district, some do provide a tutor at no cost. That may be something you want to ask about. How do they handle if a child is out sick for any reason. In our case we had to pay for the tutor, along with continuing to pay tuition. That was no fun, plus throw in the medical bills on top of it. Now this year he will be returning, but I now have a doctor who is on board the Pandas train and hopefully will help us. Now on the flip side, it is a little easier with anxiety because the classes are smaller and the teachers have a little bit more one on one, that was good for us. Every situation is different but it is always wise to get as much information as possible, you are doing the right thing. I would ask about all their policies for these extreme cases so you can better make a decision. Good luck with the decision you do make and I hope all is well for your family. Linda

Our doctor appointment today mainly was about getting more into the diet and supplements to help reduced the inflammation and improve the overall health. I know lots of you guys have been doing this and have seen changes, which is awesome. My son did a 60 day course of abx which improved the symptoms drastically, but I have noticed in the last three weeks some mild OCD and agitation that we are keeping our eye on. This dr wants us to alter the diet and we have started on Omega 3, probiotics and an immune boosting multivitamin. These are two diets she recommended looking into. I don't know if anyone else has found them useful, but I thought I would share this little bit of info. I will be researching them in the next few days. Linda

Someone just recently mentioned to me they had hyberbaric oxygen treatment due to numerous surgies and the risk of infection. She was just wondering if that would work for our Pandas kids? I did some searches and found it is used in treatment for autism (some cases) but I wonder would it help Pandas too? I have also been referred to a developmental pedi for my sons Pandas treatment and she really seems to understand this better than anyone else I have dealt with. I know she mainly deals with autism but she said she has seen about 6-7 kids with Pandas. The treatment has been antibiotics to tonsillectomies. We have only seen her once but I hope she can help us before school starts and follow through from there. This journey has not been pleasant and I have learned so much about the medical world, good and bad. I want to thank all you parents on this board again for all the help and advise I have read through this battle. Anytime I find something that may be usful I will post it here. I know there have been many posts that I have gained valuable knowledge from. Thank you to everyone again. Linda

we have pushed the pill into a spoonfull of jello or even pudding or yogurt. My son is 9 and it worked for him. Think of some other foods with that kind of texture and that may work. Good luck. Linda

Thanks for all your help and advice everyone. I have been working on improving his diet, with probiotics and yogurt daily, fruits, veggies, dark green leafy salads and protein. Plus he is taking a multivitamin and omega 3 daily. Two of the drs recently told me they don't know if the probiotics are really all they say they are. Why do the want to discourage and say that, when I have read numerous articles about the positive affects of probiotics. We are stil doing them and eating the yogurt, it cannot hurt. I forgot we also have an apoinment with a developmental pedi that the psych recommended coming up. I am going to see where that will lead and see if she will help, if not then I will seek out of state help. Like EmilyK said, it is summer and I want to get this controlled before the stress of a new school year starts. He missed two months of school this past year until he got the abx. I do not want that to happen again. Plus the fear of a new school year and all the germs that come with it. Linda

My husband and I thought the same thing about the psych prescribing abx, why not? That is something we want to talk about with him. Unfortunately our next apt w/him is the end of July. I also said that our next stop was out of state to one of the drs listed that support this, especially since we saw results w/abx. I am still amazed how they just do not see it. What is so hard for the medical world to figure out? They can figure our cancer and all those other horrible illnesess, but they can't understand streph? Meanwhile there is rheumatic fever, st. vitus dance all brought on by streph. Thanks for your replies, Linda

Well it has been 8 months that we have been on this ###### of a roller coaster ride. My son did a 60 day course of abx in March and April and May and was 100% improved but the doctors still are not believing that had anything to do with it. One exception being our psychiatrist who does see the difference and agrees with us. Today we had our regular 10 year check up but we followed up on this with the pedi. This pedi believes in PANDAS but will not give anything to treat it unless there is an active infection. One thing he did tell me and this was the first I heard this, he feels these children already have the tendency to have OCD and that the strep triggers it to become active. From everything I read I have not seen that. If anything I understood it to been the bodies reaction to the strep and OCD was the symptom because that was the part of the brain that was being attact. Am I not understanding something? Has anyone else been told this? Now that it has been about a month since he has been off the abx, I have seen some OCD and aggitation coming back. It has not been too bad, but it is there and my son admitted he has been feeling it too. Again, where do we go with this? The psych feels he does not need to see him because we got our answer with the abx. One thing that I felt was huge in improvement was when my son told me his brain did not feel BLAH anymore. That in its self says so much and the psych agreed. But when I mention it to the pedi they don't seem too impressed. By the way, Pittsburgh sucks when it comes to understanding this. So much for our wonderful city being tops in the medical field. Linda

Thank you for posting, I have never seen the whole episode. Interesting to see the "hand gripping" my son has done that from the very beginning and that is how I know when things are flaring up. Told the doctors, but again, did not seem concerned. I wish I could show this to them also. Thanks, Linda

Thank you for all your help. I will try the phone consults. Like I just said in PM to Hugs2day, we live in Pittsburgh, PA which is known for its exceptional hospitals and people come from out of state to get medical help and I cannot find anyone to help my son with a streph infection, very sad. Someone told me the other day, that if a celebrity's child had this problem, doctors would be all over it and they would be talking about it in the media. This is so true and disgusting. Thanks again, Linda

I just read on another post that maybe Zithromax may work better than Augmentin? I have seen this up and down with symptoms with the Augmentin and it has now been 20 days on them. Does anyone know who I can go to in Pittsburgh? I know I have asked this before, but if there is any doctor out there because the ones I have talked to say they understand PANDAS but will not treat it or go to extremes to treat it. That is what I am afraid that this doctor we are seeing now is gonna say. I know some of you have said you go to NJ, NY, DC but have had to wait months to get appointments. Any advice? Linda

But I am confused soo.......are you saying that you are on the same antibiotic ....each time??? If so, I dont' understand while starting another 10 day course with no break would give you another honeymoon period. In response to your comment above, we started on Keflex in March for 20 days. Around the 10-12 day we saw the biggest improvement, but then he was only on it for another 7-8 days and stopped. That was when we saw all the symptoms come back. About a week later he started on the liquid Augmentin for 40 days, refill every 10 days. That was when I started seeing the up and down changes when we came to the end of the 10 day cycle. The amount is not changing, 5ml twice a day. We still have about 20 more days and I am watching this cycle very carefully so I can explain it to the doctor. I feel I need to have as much information as possible. If I can share anyone else's experiences then maybe this doc will try more. I don't know, this is just so frustrating. Especially when I can see my child coming back, I don't want that to change again. Linda

We having been on antibiotics since the middle of March and the doc plans to continue them until about the third week of May, that will be a total of about two months. Now, we have definitely see a great improvement, but I do not know what the doctor plans when we are done. I have been noticing when the 10 day dose is starting to finish up, around the 7-8 day (he is taking liquid Augmentin) that he starts to get more agitated, and anxious and some of the OCD comes back and not sleeping as well. It is not as bad as before Abx, but there is a change. Then we start a new dose and he is good again. Is this because it is a liquid and may not be as affective during the course? I feel I need to also have a "game plan" for when the Abx are done. The doctor seems to think that since we are out of "season" for most bugs that he should be fine. But my understanding is that the streph or bacteria is already in his system and has been there for all these months that we have seen the changes. Is this correct? Plus what else can I do the help this doc understand that he may need more Abx? I know he will want to do a throat culture, but my son had one right before going on Abx and it was negative. Should I push for an ASO titer test instead? That seems to be more accurate. Even when this all started back in October the throat culture was negative but the ASO Titer was 177. What about the other test, I not sure what that one is called, something B nase? I just feel that this doc is helping to an extent but that I have to present all the information in order for him to continue this treatment. He is the only doc that will prescribe Abx and if he does not then we go back to that horrible place were my son became so anxious and raged and was afraid to go anywhere. And since I have seen my child back for the last few weeks, I do not want to loose him again. Any advice would be greatly appreciated. Thanks, Linda

we definitely noticed a change. My son is in thrid grade and they have to do cursive handwriting and it got so bad he said he did not know how to do it anymore. His printing was horrible. Before all this happened, his handwriting was very nice. He has been on an antibiotic for a month now and his cursive is back and looks good again. Now to me, that is proof that the antibiotics really do something. This was also one of the major factors that led my husband and I to beleive that he has PANDAS. Linda

How did you hear about him? That would not be far to drive. How is your situation been going? Funny thing since your PM about that doctor, which was the one we saw, we ended up calling him again and said all the symptoms returned after the Keflex and he is now trying Augmentin. But the only thing is it does not seem to be working as well. I thought it was stronger than Keflex. I don't know what will happen when this dose is done, so I guess I am looking for any options, Cleveland would not be as far to drive. If your find out anymore please post it. Thanks, Linda

This is so frustrating. I cannot believe they are not looking at this as a true medical problem. My son has missed all of February and March this year because the anxiety and panic was so bad. He is enrolled in a private school so I did not have any of this options available. We have had to pay for a private tutor and continue to pay tuition. I am seriously considering enrolling him in our public school so we have these options that you are referring to. I am shocked that they cannot understand this is real and these children are suffering. Please keep us posted on what happens. The suffering you and your family have been going through is enormous then to have to deal with the school on top of it is terrible. I hope through out this year they discover more and more information and can get the word out there. Linda

I found this video searching any PANDAS info for 2012. It is interesting but yet another thing we have to watch and be aware of. Personally I checked the yogurt we have and did not see it listed but how can I be sure? Just thought I would share. Linda

I am not familiar with the book you are talking about, but my son has numerous food allergies. In our case he is allergic to soybeans, chick peas, green peas and peanuts. Now these are all listed in the catogory of "legumes". You may look into that and see what other beans are listed, I know there were some mentioned. We usualy do not eat any other, that is why I know he is allergic to them. (Plus allergy tests). Hope that helps or maybe someone else can inform you a little better. Linda

That was a truly enlightening video. I wish I could show it to every doctor that I have dealt with in the past 6 months. Especially around 19 minutes in, where she says to listen to the mothers they know their child. Thank you for posting. Linda

This is so unbelievable how all our children have gone through this exact same behavior. We have just come out of one for the past hour. I am so completely exhausted from dealing with this and fighting with doctors. WHY WHY WHY is it so impossible for these doctors to understand this and except this? Linda

MissMom, He was getting 5ml, 3 times a day for 20 days. He is 9 and weighs about 70-75 lbs. My husband and I think, from reading other peoples cases, that it may not have been for long enough or a high enough dosage. The frustration is now we have no help because the doctor basically dismissed the whole thing. Linda

Jag10, Thanks. I didn't use the period between the P and Mom. Linda