Suzan

That shows that he falls into the PANDAS range. My dd8 was 143. BIG HUGS!! Susan

Hi! We went to an immunologist who was no help at all and not interested in PANDAS, never heard of it. He did our allergy testing where I found out dd was allergic to a bunch of stuff. Then we switched to another immunologist who I heard through this board was interested in it and wanted to help. We see her now and it's great. She took blood looking for underlying immune issues which could contribute to the problems and maybe find a way to pay for IVIG. No luck for us so far but we'll keep hanging in there. We will be getting allergy shots to try to control the allergies. So, I think it depends on the immunologist you find. If you don't like the first one, keep on looking. I think it is very beneficial to get a complete immune workup and allergy testing. Susan

You reminded me of a conversation I had with my Mom a couple of months ago when I told her maybe I was just crazy, that there was nothing wrong with my dd and that I was just a bad parent and she was just a rotten kid. But then things got worse around here and I was reminded I was doing my best (hopefully). I think it's normal to question when these symptoms are so strange and I think it adds to making it hard to get recognized by the medical and general population. I have had different times where I was embarrassed by my kids but that was mostly before I knew about PANDAS. I saw a women I had not seen for a while and she said she used to think my younger dd was close to autistic but now she seemed totally "normal". I think I was ignoring a lot of what others might think, maybe self protection or something. Anyway, I'm just rambling.... my younger dd talks like a baby when she's in an episode. Sometimes she can turn it off and sometimes she can't. Susan

Oh dear! I am sorry! I hope the new meds knock it out fast. I am glad they changed the meds and gave the shots too. I hope they both improve quickly. I am sorry you (and they) are going through all this. Susan

Hi there... dd is now on 500 mgs a day. Before this she was on 250 mg daily (although our immunologist had me playing around with 250 every other day and that didn't work so I increased it to 250 daily and then finally 500 daily). She weighs 70 lbs. We saw the immunologist yesterday and have her support to stay on 500 mg for 2 more weeks and then go to alternating days of 500 mg/250 mg. She seemed to feel better about that dose for longer term. Susan

Deep breaths! It's going to be OK, I promise. You are right, allergy testing would not show an intolerance. I am allergic to wheat but my dd's showed no allergy to it and none of us can eat wheat. If you want more info, please PM me. I don't want to overwhelm you and I know there are probably others who know more than I do but we are a gluten free family for the past year and thriving on it. Take it slow and see how it goes. My younger dd was (is?) a picky eater. She actually started eating more food variations when we cut out wheat. Susan

I am thankful.... That I had no idea what I was getting into so I was not scared out of ever having kids by myself. That I had the courage to follow my instincts and keep searching and find out what was wrong with my kids. That I have become a better parent through the struggles we go through instead of a worse one. For just a bunch of other stuff, my job, my house, my dog, my Mom, this forum, that I'm feeling better....

I highly recommend this book if you are interested in learning more about gluten intolerance. Most doc's aren't on board with this yet but I am so glad our Dan! doc understood the test results. Going gluten free really helped us but I know it's not an easy pill to swallow at first. Also, my oldest dd has neurological issues (anger and poor behavor) with gluten while my younger has gut issues. The list is really long of possible side effects from gluten. http://www.amazon.com/Healthier-Without-Wh...e/dp/0976853795 If you don't have the typical gut issues though, I can see where it would be tough for your dh to want to jump on board. Susan

http://www.celiac.com/gluten-free/index.ph...nfreeforum.com/ This is a great forum for Celiac and a lot of informed parents and other people who have gone through these tests. If you post there, post the test results and the lab ranges. The main thing that I learned is that if you have a positive IgG (meaning above range), this means there is an intolerance to gluten, even if the entire celiac panel shows that there is not celiac. It is very common, especially in children, to get false negative test results. Both my girls are gluten intolerant with a positive IgG antigladian test. Also, if the IgA is low, this can mess up the test. Both my dd's have IgA results on the lower end. I hope that helps a little. Susan

I think remembering is important and I sincerely hope that this reminder will help you through any hard times (non PANDAS related) in the future. You can get through this, you can get through anything. I think it's great to see the positives of how we have changed and how we are different parents because of it. That artist sounds great if he captured the eyes so accurately! HUGS! Susan

Excellent update! I am glad to hear it since we leave in 18 days to see Dr. T! I am glad you are feeling hopeful and have a direction to go in. Please keep us posted! Susan

Judy, I don't have any codes but I wanted to give you a big hug. Don't they know you can stop the paper and mail while on vacation? Especially the mail, it's so easy. My neighbors never stop their mail and always ask me to do it. I keep saying... "you know, it's so easy to stop your mail online....." LOL, it's one of my pet peeves! My heart goes out to you and your family and all you are dealing with right now. Please keep us posted on what you learn from your immunologist. Susan

Angela, I forgot to respond yesterday.... I guess, I don't have enough antibiotics to cover this dose for long so I'd need to get a doc to agree to it and also, maybe I am thinking since this is double the normal dose, it would not be good for her (gut and candida, etc.) but really, I don't know what I"m talking about. If it continues to work, I want to find someone who will do it. I guess I also think it's going to stop working eventually.... Susan

Hi Judy, I am in North Carolina. There has been some talk about a strong strep strain here too since we have a growing population of pandas kids. I think my dd's hhv6 titer was 1:90. If so, does that mean that it's in between equivocal and positive? I hope I get a copy of the report tomorrow. I am glad your son is showing signs of improvement too. I was trying to decide today how much improved dd is in 5 days. I'd say she's at 90% at least. Maybe even 95%. Since she has had pandas for so long, I don't even know what 100% means. Susan

Kathy, I don't remember any reaction to this vaccine but I was not looking for those connections at that time. There was nothing overly obvious that sticks out in my mind. We did do blood work to find this out, our Ped. Neurologist thought it might be a problem for her. He also tested 2 other herpes titers which were both normal. We started the Valtrex tonight. I will report if I note anything worthwhile. Susan

Susan, My son also has elevated HHV6 titers... I can't find the number right now. Do you mind sharing what your daughter's numbers are? Isabel Isabel, I never saw the results, I hope to see them on Monday. I feel like the result was 1:80 was normal and my dd was 1:90 but don't rely on that. I could be way off (normal 1:40?? see, I can't remember!). I will let you know when I find out. I just ran across this when trying to find the lab ranges. I found it very interesting! And I want to know if A and B variants were tested. I imagine not. http://vipdx.com/hhv6/ Human Herpesvirus Type 6 A number of recent publications have demonstrated a statistical association between persistent infection with Human Herpesvirus Type VI (HHV-6) and a number of chronic immune diseases (e.g., multiple sclerosis, B-cell lymphoma). Since persistent viral infection can cause over-induction of the interferon inducible enzymes – one of the biochemical hallmarks in CFS patients- detection of HHV-6 infection may be important as a biological marker of active autoimmune disease. There are two distinct subtypes of HHV-6: A and B variants. Type A is associated with more severe disease while Type B occurs within the general population often without associated morbidity. While HHV-6-B roseola infections are easily detected, HHV-6-A detection is more difficult. The “A” variant can remain active in brain tissue, often with no trace in the serum. One reason that it is difficult to detect HHV-6 is that since over 95% of us have been exposed to HHV-6-B in the past and since HHV-6 remains latent in cells, tests must be done serum (the clear liquid portion of the blood) to differentiate active from latent infection. In most viral infections, large numbers of virions spill into the plasma when the virus is replicating but this is not the case with HHV-6 because it is spread largely cell-to-cell or directly through the cells’ walls. This means that very little of it ends up in the serum so PCR tests must be extremely sensitive to persistent HHV-6 infections, once the acute phase is over. The “A” variant is 13% different in genome from the “B” variant and is more aggressive and lytic to the cells it infects.

peglem, I imagine you have looked at this already, but I thought I would pass it along... "Some people with low serum IgA have a clinical course very similar to people with Common Variable Immunodeficiency." http://www.immunedisease.com/patients-and-...deficiency.html

She is 8 yrs old and is 70 lbs and pretty tall (4 feet 10 inches maybe) - Edit: She can't be that tall, maybe 4ft 7") She was on 250 mg daily and we saw an initial improvement the first 6 weeks but then as we started weaning her down, things went down hill and never got back to what it was even after going back on 250 mg daily and was getting worse. I double her dose to 500 mg daily and I noticed a change in less than 24 hours. We are starting the Valtrex today. This is a medication they use to get rid of herpes, it's an antiviral and I think it's used to clear all kinds of viruses. My dd has elevated HHV6 titers and she gets a lot of canker sores. Our neurologist and Dan! doc thinks that if we can clear this virus (and any others that may be stuck and not being processed correctly like what happens to our kids with strep) that she may have an improvement. Our doc's both agree that HHV6 virus especially can cause neurological issues including OCD. Our Dan! doc was pretty excited about this possibility and we have a 6 month prescription. We are to do it for a month and note any improvements and try to cut back on the antibiotics then (but this was all before I found the improvement from doubling the zith). Susan

I can say with confidence that the increased zithromax did drastically improve my dd. She's been on it for 4 days and she has been a different girl. She has had glimpses into her dark behavor in the evenings and surrounding some of her trigger tasks (taking pills and sharing) and she cries that she doesn't want it to come back. I don't think I can keep her on this dose for long. We see our immunologist on Monday and I will discuss it with her. She does not know I increased it yet. DD is voluntarily washing the dishes right now and asked "Have I been having a good attitude today?" She's doing it to try to get her own phone but I know she's doing it becuase she feels better. 4 days ago, she would not have been able to do it, even for a phone because she would not want to put her hand down close to the drain through the dish water. Yesterday she caught a bug and set it free outside and she asked to take a shower last night. She has been refusing showers for several weeks now. Susan

LOL, oh dear! Seeing the humor in it is essential! I can just see the police out there and the scene you describe. I remember laying on top of my dd with my knee in her back so she would not run out in the street as I frantically looked for my car keys all the while she was screaming at the top of her lungs in front of the peditricians office. I was worried about social services then too! Susan

We have had lifetime problems with sleep and are in a really good spot right now. I use melatonin every night to help calm anxiety and go to sleep. The extended release might help with not waking up, have you tried that? I co-slept with my kids for years to help them go back to sleep when they woke up. We used sensory heavy pressure which helped (heavy weighted blankets, etc.). Supplements that help calm, epsom salt baths before going to bed and magnesium supplements or oils. Her sleep also got much better after tonsils and adenoids were removed and we are on a gluten free diet as well. She wet the bed until she was 7 too and once we got that under control, the sleep was better. I think the gluten free diet helped our sleep issues too. We did not have the terrors that you describe but we did have anxiety and fear and inability to get back to sleep. HUGS! susan

Early onset (prior to the age of 2) - If you feel comfortable, will you let me know when your child's first strep infection was and whether you believe PANDAS started at that time? What were the symptoms that make you think this could have been the first episode? I will be seeing Dr. T next month. I would like to bring some of this information to him since I believe our case started so young (first strep at approx 12 months and 16 months with subsequent strange behavior). I know there are some others out there like us. Thanks! Susan

We are coming up from North Carolina. I think he is starting to have people come from all over! We plan on taking the train and just trying to make a mini vacation out of it. Susan

I am so happy for you! I know all too well how much these good days mean and how much hope they offer. I hope you continue to see improvement. I just made an appt with Dr. T and we will be going the first week in December. It's a long trip for us but I am looking forward to it. Now that I am seeing dd respond to the zithromax, I want to be sure we are doing the right thing and Dr. T may be able to help me with my local docs once he sees the girls as patients. The ups and downs are hard, especially after getting a glimpse of how good things could be. But I know you will hang in there and continue to get her well. Susan

DD8 is rarely cold and never wants to wear a jacket. DD7 always feels hot, like she has a fever but she doesn't and she can get hot, sweaty hands and feet too. She's always pushing off the blankets and taking off her clothes because she is so hot. susan