Suzan

OMG, I'm so upset. I had an appt with the immunologist on 11/23 that I have been desperately waiting for. Our psych appt was postponed until 11/30 because the therapist had the flu. I called the immunologist office to see if this was OK that the psych appt occured after 11/23 or should I find another place for the evaluation. The nurse called today to say that the immunologist has indicated we should wait and not come until our end of January 2010 appt. The last time I spoke on the phone with the immunologist, she told me January was too far away, that I should come in on 11/23 after she finishes her PANDAS research so we can talk about what she is going to do, that she was talking with the "experts". Then I get this call with the nurse telling me that the notes say there is no indication that there is anything wrong immunologically. How can they keep telling me that? And we have not met since all her tests were completed. Last time I saw her she was talking IVIG and now I can't even get in to see her. So I told the nurse all this, that I needed her to go back to the doc to tell her that I didn't understand why she was changing her plan. The nurse refused! She just kept saying the doc's notes were perfectly clear, that I also asked the nurse to tell the doc that I was going to bump her zith back up to every day. That things here were getting worse not better, to be sure the doc knew that. This nurse was not going to give my message. I finally said "Well I guess this conversation is over" and we both hung up. we would do allergy shots and the new allergy medication and that there is nothing wrong with her immunity. I want to scream! I left another message asking nicely to have the doctor call me but it's Friday and I'm sure I won't hear anything until next week Plus, I have to pick an insurance at work that has no out of network benefits. I think I'm going ot be sick. Susan

My 7 yr old has had three EEG's, two 1 hr and one 48 hr video EEG. This is because she has had seizures like absent seizures since at least 3 years old. When she was 4 we realized what they were and started trying to find a way to medicate her. The medicine didn't work so that's when she got the 48 hr VEEG. Finally they got the meds right and I didn't see any more seizures. She was having 100's of them a day but I only saw the longer ones, 10-15 a day. Then she went gluten free and after 6 months, she had a normal EEG and she is now off medication. I assume her seizure activity is unrelated to PANDAS except for the fact that Celiac and PANDAS may be co-morbid conditions. We don't know if she has celiac but it's a good possibility. Susan

This diagnosis would get daily antibiotics which would be good. Does it allow for IVIG or PEX? Susan

Hi, I wanted to give you my hugs and support. I know all too well the way you are feeling. My patience and strength seem very low right now. Please hang in there. It's got to get better. susan

Well, she did have the flu (confirmed) in March of this year where she got a fever of 103 at least. No peeling or swollen glands or body rash. Throughout her life, she has had fevers and tons of rashes. She used to get a rash every time she was sick it seemed. Nothing as drastic as the picture in the link but she would get fine red rashes on her torso. She has never had any peeling skin. Right now she has some very itchy pimple bumps on her legs (front of her thighs and back of her knee). I think they look like DH associated with Celiac. I have been looking up impetigo today but they never get the yellow crust. They become a huge pimple and then pop open and turn into a purple mark. She was covered in these last year (around the time that she had undiagnosed strep but was also still on gluten. They went away after going gluten free). Needless to say we are very worried about this right now. Regarding her appendix, they said it showed early signs of inflamation that would be consistent with appendicitis. I hope to have more info after our appt on the 23rd. I'll ask for all of her test results. Susan

We had that - she could not answer a simple question such as "how are you" - there is not black & white answer, so anything could be a lie. And she litterally could NOT lie. She seemed really shy or unresponsive. It turned out that one of the many types of OCD that she had is called Scrupulosity. It is quite common, and in older kids is usually seen in compulsive praying. For Meg, it manifested more in an inability to lie for fear of consequences that were not logical (such as my leaving her altogether - we joke about it now, like I'll say "well, can I go to Hawaii, or are you sending me somewhere really cold?") She also could not answer simple questions like "what do you want to eat" for fear that whatever she choose would be a bad option & make her sick. And she had rituals in her head, if she did something bad, that she would say "sorry, God" a certain number of times & if interrupted had to repeat. This all made her seem very spacy and disconnected. She also confessed all kinds of things - some real, some that she "might have done". She could not answer a direct question about cheating, for example, and would be completely distracted during a test for fear that she would accidentially cheat by seeing another child's paper. She literally built walls around her desk using books & lunchboxes while taking a spelling test. Wow, I really need to talk to you guys more about specific examples of OCD and how it can manifest. I think I really do not understand what my dd is going through at all. I just know things like this are going on but I don't know how to find out about it. Today she was biting on her tongue with it sticking out of her mouth and making a "nuh, nuh, nuh" sound. She says she does that at school when she is not feeling right and says she feels better when she does it but I don't know why she isn't feeling right. I can totally see her building a wall around her paper or not being able to answer a question for complicated reasons unknown. She's big into confessing and there must be something going on that she can't verbalize where if she thinks she's gotten me mad, the best thing to do is to stand totally still. If I move at all or make any facial expressions, she freaks out but I don't know what is going on in her head. Susan

Poster name: Suzan (Susan) Location: Charlotte, NC Last Updated 11-12-09 Childs year of birth/present age/gender: DD8 - 2001, Age 8, Female DD7 - 2002, Age 7, Female Brief history of symptoms/when they started DD8 - First documented Strep infection around 16 months old. Soon after, manic, inappropriate laughter while pulling out hair, sticking fingers down her throat, gagging herself with food. Hysterical fear of flies, separation anxiety. Sensory issues, temper tantrums, poor sleeper DD7 - First documented Strep infection around age 12 months old. Symptoms started as she grew...Very poor sleeper, silent temper tantrums, very strong willed and stubborn, slow to eat solid food and very picky, slow hair and teeth growth. Early obsessions with snow globes and other heavy things, lots of lining up and organizing. Always wanted to be held. Separation anxiety Any previous diagnosis, i.e. autism, asbergers, pdd - DD8 - Sensory Processing Disorder, gluten intolerance/possible celiac DD7 - Sensory Processing Disorder, mitocondrial markers, gluten intolerance/possible celiac, low muscle tone, epilepsy PANDAS symptoms; and order of prominence, (OCD?, tics?, etc.) DD8 - OCD - I don't fully understand how OCD affects her right now but as I'm learning, I think this is the primary issue Separation anxiety Sensory issues (clothes don't feel right, socks, shoes, underwear, pants, you name it) Raging, facial grimacing, self injury Roving pain Perfectionism non-verbal at times DD7 - Food hoarding Food restriction, loss of taste senses Age regression (acting like a baby, sucking her thumb, not talking or talking like a baby, wanting to be held, putting her feet on you or in your face) Sensory Issues (no water in face or on head, don't want hands messy, no grass touching feet, etc.) OCD (probably all of the above is related to OCD) Separation anxiety Results of any testing done: i.e. Aso & dnase, strep results (always positive? always negative swab, but Positive culture?, immunology results, etc. DD8 - Positive rapid strep throat and vaginal Elevated ASO / DNASE (slightly elevated. I'll update numbers and all test results when I get them later this month) Failed most Strep Pneumo serotypes Low normal IgA IgG and Subclasses normal Camk number (if done) - 134% Anti-neuronal Antibiody Titers (180 min) Anti-Lysoganglioside - 620 Anti-D1 - 4000 Anti-D2 - 8000 Anti-Tublin - 2000 DD7 - Recurring Vaginal Strep A positive cultures (rapid and culture when both tested) Normal ASO/DNASE titers Low normal IgA Camk number (if done) - 118% Anti-neuronal Antibiody Titers (180 min) Anti-Lysoganglioside - 320 Anti-D1 - 4000 Anti-D2 - 8000 Anti-Tublin - 2000 Antibiotic use history: Both girls have lots of antibiotics starting very young for strep, ear, sinus and chest infections. Started zithromax for PANDAS in July 2009. DD8 - Rapid improvement on antibiotics but they are not working long term. DD7 - Very successful with antibiotics. She is about 95% now. Doctor and what protocol they suggested: Dan! Doc treated based on Dr. Cunningham's test results. 250 mg zithromax daily for 6 weeks and then taper off as much as possible. Other doctors that were helpful and why: Pediatric Neurologist (first suggested PANDAS based on recurring vaginal strep infections but he does not treat). New Immunologist is interested in PANDAS and is researching and working with us. I'll update later on this. Steroid trials, IVIG, PEX and detailed experience: None Additional therapies sought: OT for sensory processing disorder, chiropractic Supplements used: DD8 - Attend and Extress by Vaxa, probiotics, L-Theanine, Kirkman's Spectrum Complete DD7 - Probiotics, Caprylic Acid (for yeast), Kirkman's Spectrum Complete, Omega 3, 6. 9, (weaning off - taurine, biotin, zinc, alpha keto glutaric acid) Meds used: DD8 - 200 mg ibuprofen 2x a day, benadryl, zyrtec, zithromax DD8 - Zyrtec, zithromax Other: DD8 - Tonsils and adenoids out age 5, ear tubes age 3, appendix out age 8. Became very OCD after nitrous oxide for a tooth filling. Emotional, angry and unreasonable after general anestesia, DD7 - Ear Tubes age 2, Hemangioma birthmark on forehead and back. Laser surgeries from 4 months old, steriod foir 1 month at 3 months old, generalized seizures (absent, no convulsing), assumed "cured" by going gluten free

She has been seen for RF but at that time they did not have any tests done. She has had a CBC done when she got her appendix out and her immunologist just had it done too (but I don't know the results). The CBC shows blood cell count right? I was freaked about rheumatic fever in September when she couldn't walk and ended up getting her appenxid out. Susan

My dd gets roving pain and has trouble with her legs, feet and ankles and no one can every figure out what is wrong. Sometimes it's her back but so far (knock on wood) it's never been her neck. We see a chiropractor too and find that it is helpful. Susan

Man that makes me mad. My girls both had positive cultures when they were younger than 2. Ugh!! So, some weird things my kids did in retrospect I'm sure was PANDAS Pulled hair and laughed Stuck fingers down her throat and laughed Shoved food in mouth frantically until gagging Hoarded food Silent temper tantrums Intense fears of bugs Separation anxiety I think it's tough with little kids since they can be so different and they do such weird things normally anyway. But since you have one, I would pay close attention for sure. Sounds to me like it could be a possibility. susan

http://www.holistichelp.net/neurotransmitters.html I recently found out that my neurotransmitters are depleted and I've started taking supplements for it. I was searching tonight for some information on it and I came across this link that had a very interesting symptoms list. Has anyone had their pandas child's neurotransmitters tested? I did a search on lattitudes and found a reference to elevated but not low neurotransmitters. You'd think with all the tests we've done this would have been some of them but I just can't remember. Susan

Thanks Kim! Pretty amazing stuff. Luckily her B12 was normal. I'll bring it up with our Dan! though just in case. Our therapist appt tomorrow has been cancelled due to the therapist has H1N1. So now it's not until the end of the month. Susan

Our neurologist also tested magnesium, HHV6 and other herpes titers, biotin, biotinaise (sp?), B12. So far everything is coming back normal except the HHV6 was elevated. This indicates she's had the virus. Some kids don't process it and end up with neurological symptoms and there are some docs who think a round of antivirals may help. My dd is having increasing OCD behaviors as well. HUGS! Susan

Thanks for checking up on us. I have had her B12 levels tested but I don't think folate. We do see a Dan! doc but he is on the other side of town and very busy from the flu right now that we have not been to see him for a while. For the NAC, do you take that as a supplement if you have to take nitrous oxide? What does the folate tell you and what might low (or high) levels indicate? I had the dentist fill with the white filling since the other contains mercury. Even though it's in a baby tooth and will fall out in a few years, I figured it would be better to not mess with it. I hope you won't tell me that's worse than the silver! She is doing OK as far as being able to function and have some fun although while I've been typing this she let out a blood curtling scream and cry that I thought maybe she had cut her finger off or something but it was because she had ripped a tiny corner of the picture she was painting. She spent part of the day either clinging to me or running from bugs that aren't there because she saw a yellow jacket (one of her 3 biggest fears). I wrote that we were seeing the therapist this weekend but I really meant this upcoming week. Susan

Before we started antibiotics and my dd8 had undiagnosed strep, she had colorful polka dots in her field of vision and also flashes of light. She said it was bad enough that she could not see well. Since she has started on antibotics, although she is still not well, she has not complained of the visual stuff. Susan

Are you using collodial or ionic silver? We have started using it too but are in the early stages. We have both, but I am using the collodial to try to get rid of anything we feel we are coming down with and the ionic for daily doses. I noticed when I was using the collodial every day, I was having what I think was die off symptoms. I think it's great stuff but I have yet to know how it may help my PANDAS girls. Susan

I understand about being on the fence. I was just wondering about my decision not to vaccinate last night. But I agree (and I'm glad to hear Dr. K gave this advice to one), I think it is too dangerous for our kids. Although I agree, I still wonder and hope that is the right decision. My youngest got h1n1 already. It was a very mild case so we were lucky. Now I hear you may be able to get it again?! I don't know if that's true or not. Susan

Hello again, I have been out of town and thought I would check in to let you know that my dd8 managed to be OK while I was gone. She had one episode that the person taking care of her was able to manage. When we got home, her episodes are strong but we are managing OK aside from one wacked out insane tantrum (on my part, I completely lost it). She is aware of how she has been feeling and acting and she's asking for a therapy swing and heavy pressure so I feel like her awareness of how she is feeling is a good sign. I have been lying on top of her for heavy pressure which is really helping and we will look into a swing this weekend. We see a psychologist for a psych evaluation this weekend, meet with the school to plan her 504 Plan on the 18th and then we see our immunologist on the 23rd. She says she has a plan for us but I have no idea what that is at this point. So we are just hanging in there until then. Susan

Both my girls have been very sensory throughout their lives. My younger dd very much so about her head, no water, hair brushing, etc. DD8 went through periods where you could not touch her at all. We went through 2 years of OT before we learned about pandas, that helped a lot. DD8 has no trouble with hair brushing now but she is selective about who touches her. DD7 still has a sensitive head but can tolerate it and has learned coping skills as far as water in her face. Susan

I like this format better than the table. We could each just fill out as much as we can and then edit as we go (we could add at top a line titled "last update"). If they could all be under the same heading, then it would be easy to look up someone's history. The table would be good too, but it would be hard to put all that info on a grid and someone would have to spend precious time maintaining it. I'm going to go ahead and start a thread with it... Let's call it Health History or something like that. I actually have to do this to send along with our Cunningham samples (still waiting for the kit!) Isabel I think this is great for submitting the data, very easy.... I also think a chart is necessary so you don't have to scroll through everyone to look for a trend. I LOVE data and I love to look for comparisons. Susan

Momtocole, I am so very sorry and I know how you are feeling. I am glad to say that my dd is doing better than she was on Friday. I was very scared on Friday because of the OCD that was being displayed. But that is calmed down a lot. However, she is very emotional and controlling and can't speak without whining. I have hopes that this will continue to calm down as the days go by. Before the dental work I won't say she was doing super well anyway but it did reallyl ramp up afterwards. I think it was the gas for her that did it and as it's working it's way out, she's doing better. One thing I have noticed is that her leg pain has come back after the dental work. She has had problems with roving pain and episodes of not being able to walk. I am hoping that this is not going to cause a recurrance of that. Hang in there, I hope it will calm down for you guys.... Susan Oh PS... My dd has lots of canker sore problems. I know when she will be starting up an episode by when she gets a canker sore.

I'm in! I don't see my name there so I can get you what data we have so far. I won't have time until next weekend since I will be out of town. Susan

Char, I am thinking of you. It is so scary to see our children go through this. I hope it goes by quickly and does not get worse. I was having the same thoughts yesterday as my daughter was worse than ever. Hang in there... Susan

So, what should we do? Is there a way we can get organized to help change this? I'm feeling overwhelmed with it all. I feel like I can't make a difference but I know I can somehow.

Thanks everyone.... We made it through the party and everything was OK. DD8 had her moments but she managed to hold it together. She's sleeping now. I do hope we will see her quiet down over the weekend. Seeing her like this today made me realize I am not equiped to handle her if she (or her sister) gets really bad. I know we've had some bad times and things are hard now but today gave me a glimpse of how it could get. I'm all alone here with them and I have no help. I don't know what I would do without you all. Susan