writergal

We've been on three different antifungals, and probiotic (Florastor)- what are you taking for a prebiotic? We are not doing very well in getting rid of the silly, yeasty behavior- as well as the unfocused, ADHD type behavior. I'm seriously considering starting GPAS diet int first week in January.....really tired of all the special diet stuff and would like to heal our DS and his gut once and for all.

The TICS started about 3 days before school, becoming more noticeable the day before school started. We took away his DSI for the last 48 hours and the TIC's are actually not as pronounced - I think we're on to something here. We told him that we believe the DSI was causing the TIC - it wasn't met with a standing ovation, but amazingly he understands and accepts that he can't play video games for a long time (if ever) but will be allowed to take pictures with the DSI and practice recording videos. Since he loves to play with this feature it actually went pretty well.

Our son is currently on treatment ABX- has been for a few months. Every time we start to take him off he gets sick and then he starts having mental issues. We took him off his meds for 2 days for blood work the beginning of May and he starting Tic's vocally this was made much worse by our general ped putting him on Straterra. It made him crazy! We ended up having to place him in a locked facility for 6 days - so to have him so much better and to start seeing TIC's, and changing into facial TIC's has me worried. We don't want to go back to where we were a few months ago. Our Dr. has him on a 10 day on 20 day off program of Motrin- and had started an anti parasite drug this past week that he started on Saturday. So he's almost ready to go back on the Motrin - and might be on it immediately after I talk to our Dr. The only thing that was different was the Motrin and the new DSI....but now that I think about it, he's been playing more video games lately, so this very well could be what is causing the issue. He's going to be off the DSI the rest of the week during school, as well as TV. We started only allowing TV on Friday and Saturday nights during the school year as we saw a degradation in behavior when watching TV. We'll be monitoring what is happening. Thanks so much for your thoughts on what could be causing the facial TIC's. If we determine it's the DSI- then it's going into hibernation. We won't be very popular, but that's ok! Julie

Our son started facial TIC's two days ago. At first we weren't sure if that was what we were seeing, but today it was definite. Our son will suddenly start winking one or both eyes and tells us that he can't help it. I've been racking my brain to think if he's been exposed to any sick people, or what could possibly be going on, as well as what we can do to stop the latest TIC (usually his TICS are verbal). But the more I think about it, the more I think it could be a result of being on a high dose of Motrin 3 times a day for the previous 10 days. The TICS didn’t start until about day 8 which has me wondering if the Motrin caused a flare in symptoms. And our Dr. wants us to do a 10 day on 10 day off with the Motrin- so he’s off now, and the latest TIC has not stopped. Another thought, is, could a DS system – playing video games cause a facial TIC? Our son got a new DSI system a few weeks ago and it’s been a battle to limit time on the new unit ever since. Our doctor was out on Friday and I’m not sure how helpful she will be. I’ll be putting in a phone call to Dr. T (NJ) as well. Our son had an IVIG in December and we're currently taking steps to see how frequently we can give him his IVIG's as our doctor believes he is a candidate for once a month IVIG treatments. Help! Does anyone have any ideas for what we can be doing until we’re able to get in touch with our doctors? For now, he’s off Motrin, and I’ve taken the DSI unit away for the next 24 hours to see if that will help at all. And we continue to be diligent with regard to his diet restrictions. Thank you in advance! It's been so sad to watch him slide back down-hill. Right now it's feeling like this is never going to end. Julie

We've used CST for several years now and have experienced some good results. CST has helped to CALM our son down and help keep him more in balance. There was a time a few years ago when we were going to our CST therapist 1-2 times a week to help stabilize our son. Now we go every few months, more for a quick tune-up.

Our son is 9. His favorite grandmother is coming tomorrow at noon - she'll be here for a few days, I think we are all counting the hours! No- we haven't tried risperdal. Sounds like we may have to consider it.

Our son started flairing about 3-4 weeks ago and has really hit a bad place. He had a light case of the H1N1 virus in late March. He started coughing after being sick to his stomach and missing two days of school. He was only sick to his stomach twice, and then went into a slight sore throat and coughing. I took him to the Dr. to check for possible strep as he'd just switched ABX and I had some concerns when he started coughing and complaining of a sore throat. Our ped and I were actually doing the happy dance as a positive H1N1 virus meant that his December IVIG was working pretty well- as he'd had a fairly light case of the flu..... and was also around me when I went through a fairly rough case of strep throat that took two strong ABX to clear. Now fast forward. Last week I took him to a ped neurologist in MI that recommended we put him on Abilify....unfortunately that came with the bad news that it would cost $600 to fill the prescription. I phoned Dr. T and he recommended a steroid burst- another tappered one as we had huge success previously and we started yesterday. On Monday, I took our son to a doctor to run some blood and urine tests that will tell us more about his food allergies and amino acids, etc. He screeched at the top of his lungs off and on for about 45 minutes on the drive to the doctors. Tuesday he started cycling through telling me, my dh and two daughters that he was going to kill us. He is currently on Augmentin, Clonidine, and started Strattera two days ago, as well as some supplements through our homeopathic MD that have been slowly detoxing him. The only thing new that is going on is a sudden growth spurt- dr. said we may need to up the Clonidine, but were waiting to see if Strattera does anything. Strattera has some potential unpleasant side-effects, all behavior type stuff we'd started dealing with about a week before giving him Strattera- that actually have gotten much worse in the past 72 hours. ( I'm closely monitoring the Strattera, and it does not seem to have made him worse, he's just kind of staying in a bad place- however this am was better than last night). Right now we're hoping that the steroid burst will work as well as it did in October and we'll get our son back. Hearing your child tell you repeatedly, "I'm going to kill you" and then say I can't hold it, I can't help it is really tough. My Dh will be sleeping in our son's room to help our son feel safe- he's also afraid of being alone, afraid there are monsters in the closet, etc. and in the last 2 weeks he's had some urinary accidents- something that we've not experienced until just recently - and to help hm stay calm and in his own room. I'm hoping we are on the right track with the steroid burst, Dr. T thinks we need to seriously be looking at another IVIG- but since we are still paying off the one in December not sure when that will happen. So anyone have any thoughts, ideas for us? We don't want to put him in a psychiatric hospital either, as we know that any meds he's been given in the past he's been sensitive to- and are concerned they may try to overload him with medication. So one thought we have is my Dh may have to take him to a hotel to ensure that our daughters and I are safe. The extent of his violence is throwing things and recently getting made when his sister was teasing him and hitting her, thereby bending her glasses. Usually he melts down, throws himself on the floor and screams at the top of his lungs. Last night when he went to bed he had red ears, red cheeks (however, he started slapping his face and making himself red about 2 days ago as well) and huge black pupils. We had to give him his antibiotics at night and couldn't give him activated charcoal, but will be sure we are doing so today. I've got calls into our doctors for ideas- but any thoughts, ideas of what has worked for other kids when they are in this phase would be quite helpful. School also ramps him up- he was home schooled for health reasons this past year and just went back to school on Feb. 1st- and hates going to school. We don't want to reward him (he's also brilliant) and have him think that if he starts with the death threats, etc. he won't have to go to school- but have concerns that school is making him worse and are thinking we may need to keep him home for a few days. So that's all of it- any thoughts privately or on this forum would greatly be appreciated. Thank you in advance! Julie

We're pretty new in our healing journey as well. I recently read Saving Sammy and it gave me great hope. If you haven't read it, please read it, it will help you!

Our son just had the H1 flu- funny we- the ped and I were actually gloriously happy that it was the flu. He had a mild case she almost didn't test but did just for giggles- so glad she did. When he started coughing and complaining of a sore throat it got me concerned. We've definitely been seeing some flares. I've been going crazy with bleach on every surface as well- don't want the rest of us to get this awful flu.

Great ideas. thank you!

It's always a good question, was PANDAS, PANS caused by vaccinations? Our son was adopted from Russia. We signed papers when adopting him (via Homeland Security) stating that we would vaccinate our child. We vaccinated him and it wasn't until many years later when doing genetic testing that our DAN doctor advised that our son had a genetic mutation that made it difficult for him to process toxins. He advised that our son is a child that NEVER should've been vaccinated. And he was vaccinated in Russia and in the US. Doctors since then have advised us that our child was poisoned not once but twice, in Russia and in the US, and we were advised to NOT vaccinate him in the future. Deciding to vaccinate is always a parent's choice. But I would seriously question the advisability of vaccinating a child that is already showing autoimmune signs. Why would you consider putting live viruses in their already compromised systems? We found out that our son had PANDAS this past July, after years of trying a myriad of therapies, and thinking that our son was somehow on the ASD, even though he really didn't fit. Dr. T has been a lifeline and advised us that our son has likely had PANDAS since the age of 2-2.5. So as we all have regrets and think of things we would do differently. I would've researched PANDAS and had more knowledge 3 years ago when I first started getting inklings that we may have a PANDAS issue. I would've found Dr. T much sooner......but that is all in the land of make believe do overs......right here and now, my job is to continue to advocate for my child as best as I can and to stop beating myself up for not doing things sooner. My son is healing, getting better and I'm very grateful that this extremely helpful board is here.

I'd love to hear if there is anyone on the forum that has used this supplement and if they've had any success with Anatabloc. Our son is on a mixture of homeopathic supplements and his antibiotics and if we can remove some of the supplements it would be awesome - we just want to be sure it's the right thing to do. However- the doctor that phoned me about this supplement is using it on her own family and since she is the amazing doctor that helped us get a diagnosis of PANDAS I tend to listen carefully to anything she tells me.And she checked with a pediatric infectious disease doctor that works with PANDAS kids and kids on the ASD that no one else has been able to help. So hoping DR. T gets back with me fairly quickly- and just barely holding myself back from ordering it until I hear from him.

Exactly what I'm thinking. If we can find something to reduce the inflammation with fewer side effects that is a natural prednisone- wow- sounds great. I'm hoping that Dr. T gets back to me pretty quickly with positive news to go forward.

Our of our doctors phoned me this weekend to tell me that she and the infectious disease doctor on her team did not recommend using Natrexzone (sp) as it blocks the receptor sites and in case of need for surgery, etc. our son would be in horrific pain as they could not give him anything for pain. She was very excited to tell me about a natural product that is 4x stronger than Celebrex and helps reduce inflammation. Has anyone heard our used Anatabloc? She advised that it has no side effects and is basically natural prednisone. I have an e-mail into Dr. T (NJ) to get his opinion- but meanwhile am very curious to see if anyone is aware of this product ad have you used it on your PANDAS kid to reduce the inflammation? Thanks in advance! Julie

thenmama thank you so much for a copy of your letter! Very nice explanation. I've even thought of calling the parents individually as the school has been such a pain- but the thought of making 25 phone calls has not put me in a good mood. And your letter is perfect! Explains it nicely without being a germ-a-phob or having people think that their child can some how "catch" PANDAS.

Thanks for your post. You are blessed to have a wonderful husband that loves you and wants to pour into you and your marriage- and smart to realize that you NEED to take time for yourself. Two months ago, I was meeting with my son's pediatrician and she kindly told me "I like you, and I have to tell you. You look like ######. You need to take better care of yourself- cause if you go down the whole family goes down." She continued by telling me that my son didn't get this way overnight and he wasn't going to get better overnight - and I needed to better pace myself. And she was right. I'm now taking time for a monthly massage and getting caught up on all "my" medical appointments. And I'm also scheduling more "friend appointments". I've found that the last few years have really isolated me from friends, and I really miss them!

Our son has just started back to school, 1/2 days at first after being out and homeschooled for a year due to his PANDAS. We asked the school to put a letter out to his classroom asking that the school (and then us) be notified in case any of the children have strep. Before we could give them a letter they sent this out: it was on page two of the teachers three page monthly report to families. If your child has any strep-related illness, please be sure to inform the office and e-mail me as well. So, HELP- does anyone have a compelling letter that they've sent out, or they know of that explains the urgency of letting the teacher and school know if your child has PANDAS? Thank you in advance! Our thought is to put the letter on bright pink paper and print off for the teacher to send home with all the students. Julie

My husband and I were both found to be carriers and our son's infectious disease pediatrician put us on antibiotics for 2 weeks. The next step is to go get a culture- which we still need to do.

Thanks for the idea to give him Motrim in the morning before school. It would be awesome if this would help. We've also talked to the school about scheduling an AVE session with our unit in the middle of the day to help calm him as well.

No we haven't done any CBT. I think this is next on the list. And I agree - I believe that this is compulsive- the sudden "need" to slap his rear and make loud noises. His last compulsion was to tell everyone multiple times a day that he was going to kill them and poke their eyes out...fortunately he cycled through that one. I understand that the school wants to have some type of plan in place, but their current process is not taking into account that we are dealing with a compulsion and we need to handle it that way. And yes, I'm concerned that putting a plan in place will further harm his already fragile self esteem. I'm wondering if he can just have a card, or something that he gives to the para that indicates he's having a problem and then he can leave the classroom and go to the bathroom and go through his compulsion.

We've been home schooling our son for the last year and he is returning to school on Feb. 1st. Today I met with part of his IEP team and gave them a print out on PANDAS and explained the various symptoms that are son is currently exhibiting. One of his symptoms is to slap his rear and make a funny high pitched noise several times a day. It's highly irritating, and unfortunately something that happens when he is anxious and agitated. The school asked if we had any ideas on how they could talk with him, help him to be more socially appropriate. Obviously we'd love to see this happen. Formerly they had him on a point system, and we're trying to explain to them that he has brain inflammation.......does anyone have any ideas? Have you tried anything that has helped to minimize the unpleasant "behaviors", but not set your child up for failure? I'm getting some blood work back on another of my children and going over the test results with Dr. T tomorrow, and will be asking him for ideas as well. I would really appreciate any thoughts or ideas on how to help our son. Our son is 9, in third grade and he thinks it's funny to slap his but and make funny noises. Basically he is extremely obstinate and will not listen. If he wants to do something he does it. We've talked to him numerous times about various behaviors, etc. and it just doesn't matter. If he wants to do something, he does it. Will ask him, is it appropriate to....ie, run outside without your shoes on in the snow? Is it appropriate to walk in the snowbank with your tennis shoes? Today I had some success. Instead of getting upset, I had him look at me, and reminded him that there was snow outside, we were getting out of the car and he did not have his boots on. He can only walk in the snowbank when he has boots on. Did he have his boots on? No. Was it ok to walk in the snowbank without boots?? NO.....and he actually listened. Thanks! Julie

Be careful with homeopathy. We had a horrible experience with our board certified MD that was "learning" homeopathy. She gave our son a supplement that his body could not handle and he literally went CRAZY for about 2.5 weeks. We almost had to put him in a psych ward- it was horrific! Thus said, if your child is sensitive to medicines, etc., and you decide to go forward, make sure that you proceed very slowly. For example, our son is very sensitive and a normal dose of 6 drops he will begin with 1 drop and then wait 5 days before we increase it to the next drop. Also, we do not start with multiple medications/supplements. We slowly add them, one at a time. Also- as an FYI- if you are considering the study hold off on the steroid burst or use of steroids as this will preclude you from the study. We are currently doing a prophylactic dose of abx, completed a steroid burst about 3 weeks ago and our son has his first IVIG this Friday.....and we are working with a homeopathic doctor in another state currently that we do trust- so he is still on a few different supplements that are helping him to detox. In the course of searching for what was wrong with our son we completed a series of blood work with an infectious disease pediatrician. The pediatrician found that our son's white blood cell count was low- causing him to have mild neutropenia. This was a huge blessing- as this diagnosis covers the IVIG. It might be something you want to check on to see if there are other co-factors going on that would pay for the IVIG.

We did the blood draw and I'll PM you the name of our doctor. Also- I've meant to do this and haven't gotten around to it- there is an allergist, Dr. Doris Rapp that has had a lot of success with allergy testing. She actually will test the child with something under their tongue and then have the antigen available to bring the child back. I've seen videos of kids absolutely FREAK out within moments of ingesting a substance they are allergic to. My mother is a nurse and she is like your doctor- insisting that we need to only do the skin testing. I think there is a place for both, but have also been told by those more knowledgeable than myself that skin testing can also cause false issues. I think what Dr. Rapp does makes a lot of sense- and there are allergists trained in her protocol that are likely close to where you live.

Thank you so much! Our doctor is going to give him a steroid in the IV 30 minutes before starting and then after the IVIG is completed. I've been driving the doctor crazy with questions as I've not been pleased with some of his answers. I'm being polite- but I'm sure he will be very glad to have the procedure finished and me out of his way. Thank you so much for the tips- we will make sure that our son is drinking a lot of water before, during and after. Our son tends to get more hyper with benadryl- did anyone else have a child that has this same experience? And I will also make sure that I have the plan more solidly in place prior to the IVIG- meaning if he is having a problem I don't want to wait for the doctor to phone me back. I will ask for and have prescriptions in hand in case of severe headache or vomiting. It takes forever for our doctor to get back via e-mail, and I'm not too fond of having to go to ER because the doctor won't get back with me. Thank you so much for the great tips. I'll make sure we implement them. Julie

Have you tried allergy testing? Corn is one of the top allergies for children, so it definitely would make sense if your child's behavior was getting worse after ingesting corn products. We have two children that are sensitive to corn and a host of other items. I do not buy items with corn syrup in for our kids- and believe me that can be difficult! Fortunately we've been doing this for a while and their dessert of choice is typically fruit.