nojo

I was telling my family over dinner last night about what I had read about the conference, especially the commentary about the mice from this thread. I was so excited about some of this research and the implications. My pandas daughter looked at me and said she can't believe they are torturing mice! Interesting perspective...

Our family has been helped so much by finding this message board. We have seen many of the Doctors in our area and out of our area already on the suggested Dr. list. We have been helped greatly by Dr. L, Dr. B and the Cunningham test. The information on the both the Pandas Network and Pandas Resource network has given us help and hope. Many parents have offered us guidance. There are so many smart, caring resourceful Doctors, researchers and parents that have become involved in this crazy journey. My hope is that they can all come together to figure this out so we can heal our children.

Hi, just wanted to add a bit about my daughter. She is very petite, always has been. We did a series of 7 hd ivig 2 years ago. She did very well until she got sick about a year ago. We restarted ivig this past August. She had not gained any weight since stopping, after the first ivig she gained 5 pounds that month and kept it on! She only weighed 50 lbs, so that is quite the gain for her. She also has CVID. I think that her body was so busy fighting the germs that she could not take the energy to put toward growing. She looks great, and relatives that have not seen her in a few months commented on the difference that they could see. Her igg levels are also in the low 400's.

Thanks for the insight, it is so hard to know the right path. We are in Richmond, Virginia, so I will look for therapists around here. I feel like she is about as good as she is going to get right now, on this path, but I want to make sure it is not just my not wanting to pack up to CT for the whole transfusion. It is hard to know too, if some of these quirky things are just habit now, and that is why therapy would be beneficial. For example, she has real issues about emptying the dishwasher. If her sister puts a cup in the wrong spot it is very upsetting to her. This is so minor compared to where we were, she is getting dressed without complaint, she is eating a ton of food (and trying new things), she is not trapped in the bathroom. She is not raging and in danger of harming herself or others.

Hello All, I haven't posted in awhile, but we are still dealing with PANDAS, and I need treatment advice. Brief history: DD 11 has been dealing with PANDAS for a number of years. She has low igg levels (CVID), tested positive for lyme in addition to PANDAS. We saw Dr. L, she said because of low immune levels immunologist would be a better fit. We currently see Dr. B. Daughter did a series of 7 hd ivig every 8 weeks for a year. We stopped for 10 months since she was doing well. Last February she got sick, and fought it off. This was definitely different than how she would respond in the past. In the past, she would get really sick and end up in the hospital with asthma type issues. We thought we were clear, but a few weeks after she started with the PANDAS flare. In retrospect, she probably had micoplasm. She had been on antibiotics the whole time, ended up doing steroid burst, and ultimately started ivig again this fall. This time she has completed 3 HD ivig. Currently she is doing well. Lyme is not an issue any longer (nor co-infections). I have a phone consult scheduled this week, and want to have my ducks in a row. IVIG has been very good for her. She had not gained a single pound since stopping ivig, and the first month she gained 5 pounds. I do think IVIG gives her body the chance to heal and not constantly fight infections. She does not have tic's, and her rages and rigid inflexibility are better. The OCD is definitely better. Hoarding better, we have been able to clean her room, she will eat food (and lots of it!). The telltale sign of urinary frequency is gone. Is she 100%, no, but I am not sure how much of inflexibility is her strong will and/or habit. I don't want to stop ivig if it is too soon, but I don't want to continue out of fear. She has seemed to plateau. So my questions: Some do only one HD ivig and say healing can happen for up to a year. Others, like us in the past have done a series of several. Is there any evidence either way? Is it just by Doctor? What is the NIH study doing? I am not anti-ivig, I realize for us IVIG is also beneficial for her low IGG levels. She is definitely low (low 400's) with a normal low range being a minimum of 550-600 for her age. She is definitely getting stronger, she has not had a hospitalization in several years, and has not needed a nebulizer treatment in a year. It is invasive and a difficult trip for our whole family to go to Connecticut, so I don't want to just stay the course without having a plan. I want to make sure that I do what is best for her, whether it is the easiest or not. She is not at 100%, but this might be where therapy could help with habits that have become ingrained. Currently we home school so her germ exposure is limited. Thanks for any insight into this difficult illness.

For what it is worth, we saw Dr. L about 2 years ago. My daughter has pandas, and she is one with low igg numbers. When we saw her she told us we should see an immunologist because of the low igg numbers. We asked her about the flu mist since it was being administered in the elementary school to all students. She felt strongly enough to write a note exempting my daughter AND her sister out of school for the WHOLE WEEK. We ended up pulling both children out of school to homeschool because of problems with the school directly contradicting medical advice. I do not know if she made the recommendation to all paitents, or just us. A lot has evolved in the understanding over the last 2 years, so this may be different now also. As for us, homeschooling has been a great choice. We just had our 6th ivig with Dr. B. We are hopefully having our last next month. Since our daughter still has low igg levels I don't know for sure if we will have to do more in the future, but we are hopeful. Good luck, and ask your current doctor their opinion. Let us know the current thinking.

We have used zofran to help with nausea.

Thank you both for the information. I am going to forward it to my husband ( he pores over all the medical articles), this has been bugging us for awhile. I think many never culture a positive rapid test. Our pediatrician started culturing all rapid tests because of the frequency that we had strep. I just got out my records, and we have never cultured positive. We started culturing in September 2009 and I have at least 4 dated examples of positive rapid, negative cultures. In between, she would show that she was clear on both the rapid and culture. Every time we took her for a test she was having symptoms. Her main signs are urinary frequency, OCD, and rages when things are really bad. She did not test positive last summer when she had Scarlett fever (101 temp, rash, peeling palms and soles of feet). FYI she was on antibiotics when she got scarlett fever. I don't know if antibiotics can skew the results (it certainly did not work as prophlaxis, even on the full strength dose)

Hi, that was our family, and no we never got that figured out. I kind of gave up on this issue, and I did consider us positive. The read on I considered my daughter positive is that she would sometimes test negative, so I do not consider her a carrier. We started culturing every positive rapid, and the culture was always negative. Most people do not culture positive rapid tests, so I've wondered if there are more with this problem. Currently, we finished our 3rd ivig, and will be back for number 4 in about 2 weeks. She has not had a positive tests since we started in November, but I am not sure she has had a test. This is a record for us. She is now homeschooled to help keep her away from germs. She does have immune deffiency, and has a tendency to get really sick, so the ivig has really helped. She also was positive for Lyme. What bad luck, we had kept the tick and I remember when she got bitten. I personally think she started with immune deffiency, has the tendency for auto-immune issues from family history, and the constant bombardment of germs at school and then the tick bite, she couldn't fight anything. It is really rare to have a false positive on the rapid, but again, I don't think it was false, or carrier, she did have symptoms every time I took her in, albeit not typical symptoms. One other thought we had was she was not yet a full blown infection at that point, but colonized and so sensitive we could tell. When we first met with Dr. B. He told us that he had not heard of positive rapid/neg culture. That was back in September, and as you all know, we are all still trying to figure this out. What I can say for certain is that we have had this happen numerous times, I would have to look at my notes for the number of times. It was not an isolated fluke. Let me know if you find out more. I have never been able to figure this out, and I think it is important. I will also asked Dr. B again during next ivig. Noelle

Good Luck Stephanie. I first did a blood test, which was positive. I was scheduled for a colonoscopy b/c of my issues. When the blood test was positive, luckily I had asked about the blood work first. For a definitive diagnosis, they had to do an upper endoscopy to biopsy the small intestine. My biopsy was ok, but the doctor said he almost didn't send it out because I looked so bad. The whole gluten issue runs on a scale from intolerance to celiac. Even though the biopsy was ok, he considers me celiac, and thinks he didn't pick a good enough spot to send for the labs since damage can be not uniform. When I looked over your post after reposting, there were a few other things I didn't comment on that I had also. I too was diagnosed with asthma for the first time around 28 or 29. I've never had reflux until the pregnancies, but that has continued and even gotten worse over the last few years (to the point that prevacid was no longer working). This too is significantly better. It might be worth a trial of the gluten free diet for yourself, I could tell very quickly. You do have to be on gluten for accurate test results though. While I am not glad of the diagnosis, I am so relieved to feel better. Hopefully I will be able to be off all meds. I finally feel like me again.

Hi Stephanie. Your story sounds alot like mine. I had terrible pregnancies, I threw up both times until the day of my emergency c-sections. I was hospitalized repeatedly for dehydration from the vomiting. I was put on bedrest in the hospital at 28 weeks with my first pregnancy. I had always been a happy person, and I was crippled by depression. I ended up seeing a counselor to deal with the trauma of the first delivery, my daughter was only 3 pounds 15 oz, and I was too sick to even see her in the NICU for 2 days. I had my second daughter 14 months later, and since her birth almost 8 years ago, I have not been able to get off anti-depressants. My older daughter has PANDAS,an immune deficiency and lyme. She has been hospitalized numerous times for various illnesses. Over the last few years I felt that the stress of a chronically ill child was taking it's toll, but who has time to worry about yourself when there are bigger issues to be dealt with. I finally went to the doctor to deal with the chronic migraines, and IBS. I was treating all of the symptoms, but nothing was helping. It was only over the last 2 years that the bathroom issues became truly unmanageable. I saw an article saying that IBS is often mis-diagnosed Celiac. I didn't think that was my problem, but I had learned about alot of auto-immune problems in our family while trying to figure out how to help my daughter. I requested the test to rule it out, the diet was too hard for me to implement without a reason. I never heard back so I assumed it was negative. Long story short, the results were never sent to my doctor, and I was positive. I started the diet, and within 3 days I was changed. The biggest difference was that the brain fog was gone. My husband looked in my eyes and commented that they were clear even he could see a marked difference.. My outgoing, optimistic personality is back. Slowly, I am coming off all of the medications starting with the anti-seizure for migraine. My next step is to get off the anti-depressants slowly since I've been on them so long. I would urge you to consider a Celiac test. Most of my symptoms for years were more neurological, brain fog, depression, vision changes, migraine... the typical bathroom issue didn't appear until more recently. As you know auto-immune issues tend to run in families. I truly did the test only because of the magazine article, and because of the auto-immune issues in our family (although no one else has tested positive for Celiac in my family.) I feel like I have been underwater for the last few years, and the water is gone. Also for Celiac, you need the genes, and you need gluten, but you need a trigger. For me, I am certain the trigger was the pregnancies. I was very sick when pregnant, and I have never been the same since. I think of all the times I tried to eat crackers with the nausea, and probably was making things even worse. Good Luck. I don't usually share this much about myself, but when I read your post it really stood out to me. I saw alot of my own issues in it, I hope this is helpful to you. Noelle

Thanks for the replies so far. We are struggling so much right now. We just tried to eat dinner, she won't eat, won't drink, are keeps running to the bathroom. Needless to say, the stress of the company that is arriving tonight for the holiday in addition to the ramping up is not making for nice night at all.

I need some advice. We just did our first IVIG almost 3 weeks ago. My daughter is on full strength antibiotics since the beginning of September (zithromax). She has cvid and is also positive foe Lyme (whew!). Since we have been home, she has definitely had a sawtooth pattern recovery , but I can see improvements. In the last few days the urinary frequency has shot through the roof. She is leaving the bathroom, and then turning around to go back in. She knows there is nothing left to pee, and is getting so frustrated, but she has the urge. I know there is a physical component, it is not just the OCD. I think someone has strep,but not necessarily her. She and her sister were both negative, but I am probably going to go again. My questions: What else can we do? Should I call Dr. B to add more antibiotics to the mix? If she is just "the canary" but doesn't have strep what can help her feel more comfortable? It was the lead story on the news how rampant strep is in our area, could it be she is just reacting to all the strep in the area? She is homeschooled so she is not around other children much. Could this be part of the sawtooth recovery? She is uncomfortable and crying because she knows logically she doesn't have to go, but she can't fight the urge. Help.

All of this crazy autoimmune stuff with dd led me to be diagnosed with celiac 6 weeks ago. I went to a GI doctor because I thought the stress of a chronically I'll child was getting to me. I had read about celiac how it is often mis-diagnosed as IBS. I asked for the test to rule it out since the diet is so hard, and I was positive. Both children have tested negative, but the difference in my body has been tremendous. I could see a big difference in only 3 days. I am still healing, but the daily headaches, bathroom problems, and crazy brain fog are gone. I'm getting off anti- depressants.

My daughter is immune deficient. Low IGG levels, Failed subclass 1 and 2. Failed Pneumo titers, were revaxed, made a response to the revax. She scored 174 on Cunningham, just found out her other parts were normal except for anti-tubulin was 3x normal. Does anyone know what that means? We saw Dr. L. last year, got our diagnosis, but later in fall also got bitten by a tick. Currently, I think she is positive also for lyme. I think we started as a clear pandas case, but she gets everything she is ever exposed to. I think because her immune system is so poor, she doesn't really have a fighting chance. She was positive on Labcorp for a band very specific only to lyme (I don't have it in front of me maybe 23). We saw Dr. B last month because we can't keep ignoring the growing immune issues, she is always sick. He ordered more tests and the igenex. We go back Monday to look further at her immune system to get more results. I think the igenex tests will confirm Lyme. From my limited experience reading about how to interpret the results, igm 41 and 83-93 indeterminate. Igg 30, and 39 single +; 41 +++. I think 39 is the critical band here. It is my understanding that we just happen to have an immune deficiency and pandas (and now Lyme) it is not necessarily related. Am I correct? I think we are going to be diagnosed with cvid for the ivig, and that will help with both conditions. For those with immune issues, has it helped with the getting sick? My daughter is now homeschooled because she was getting too sick at school. How do they do the ivig dosage since it is higher for pandas and lower for cvid? That is our story in a nutshell.