Priscilla

another thought, are you currently on abx? I am reading "The yeast connection" only few pages in, but it is already raising some suspicions for me about yeast contributions to PANDAS symptoms. I know dd has had issues with yeast, and I truly feel it is contributing to some PANDAS behaviors, sugars would surely exacerbate symptoms if yeast was contributing.. Overgrowth shows up in many forms. Maybe worth a looksie.

sorry I really don't have advice, but this is interesting to me because I noticed dd vocal tic last night and I haven't heard it for several weeks, Halloween candy is probably the culprit. So hard, trying to keep her in balance, I don't want her eating the candy, but I don't want to completely deprive her of that childhood joy either, she has already had to miss out childhood in so many ways because of PANDAS- Well, like my gut told me yesterday, gotta sneak the rest of the Halloween candy into the trash!!! She's gonna be pissed:(

I agree, that is why we have done 4, 4 weeks apart each, at 2gm/kg- and its working! Not even on abx anymore!

I also believe the infection clears, but the antibodies remain (which is the glitch) I also strongly believe that a very early strep infection made this glitch, but any infection "can" trigger it (not necessarily will) I feel that the strep antibodies were let loose even without a strep infection. I think it was H1N1 that caused our most recent/severe episode, but she did have increased antibodies. NO SIGNS of strep at all, and she had her tonsils removed years ago. I feel like the glitch is that the immune system gets taxed, pull out all ammunition (even strep antibodies) if it is having trouble fighting something. Then I feel these antibodies go crazy looking for something that is not there, therefore attacking the wrong places. My dd had NO signs of illness for months before the EXTREME symptoms started. Now in retrospect, there was a gradual downhill for about 3 months, then BAM, very severe within a week. IVIG has been VERY helpful for us. I tend to say she is not 100% because she has some lingering mild OCD/Tics, but in other areas her personality has improved SO MUCH that it would succeed what I WOULD HAVE considered baseline. So it is very hard to give a percentage taking that into consideration. I may have to say 110% improvement personality, and 90% for OCD/ Tics.

Thanks Wendy, right back at ya sister!

So glad to hear you are doing well too!!! Hope it continues!

Forgive me, this may be a little long. I have hesitated to post for the fear of what many of you would understand-regression. I think it is time to share now though. My dd 8 is doing well, not 100%, but then, what is really 100%. All I know is, she is doing very well. We have just completed an aggressive course of IVIG. Dosed at 2gm/kg, started July 31, given every 4 weeks, for 4 doses. We just had our last one last saturday. I have also done what many would considered crazy, but I stopped abx and EVERYTHING on Oct 2. I gave OLE for the 1st few days, then noticed an increase in tics, so I stopped everything. I am just giving her a whole food vitamin. I did this because I had a high suspicion that yeast/fungal issues were impeding progress. Some of the behaviors I read about yeast I thought may have been getting confused with PANDAS (anger, inability to focus...) So here we are, a month off of everything, I prepared myself for a detox period, a few times I thought about restarting abx, but something bigger than me, deep in my gut, told me to wait another day, then another, just take it one day at time (I pray for guidance daily). So now, rage is what I can say pretty much gone (she still has little moments, but they may just be 8 year old moments), OCD is much milder, but she is much more aware of it, and taking steps to tackle fears 1 at time. She is SO AFFECTIONATE, haven't seen this since she was 3! This is the best part!! So much more cooperative. I am also amazed at how well she seems to be able to express herself. She is saying things that not only make me chuckle, but the maturity of the content just blows me away! The only lingering thing is some tics, pretty mild, and really only present when she is trying to relax (mostly while watching TV) and the tics don't really seem to bother her. I am so greatful to God for our progress, and of course I fear regression. I just want to share my reasons for stopping all treatments: 1- like I said, I have a suspicion that the yeast impedes progress, overgrowth of yeast will also tax her immune system 2- I really have a hard time with abx for very long term. dd was already on isoniazide for a yr following + TB test, they can really wreak havoc on the gut, which I also feels throws off the immune system 3- I believe that God created our bodies, with an incredible capacity to heal, especially children, it works continously to maintain homeostasis, adding anything that the body needs to identify, sort out,and process takes time away from rebalancing. This I believe also includes "natural medicines" many of which are also manufactured by pharmaceutical companies. I liken this to receiving many vaccines at once, the body needs to process all of these, and mount different immune response for each, very taxing on the system. I believe it is the same with too many meds/supplements.... 4- My other fear with long term abx is what will I do when she needs them for something else, and they do not work? So I wanted to have that reserve and be off of them whenever I can. 5- Most importantly PRAYER AND FAITH and the good LORD are working here. I can't say enough about how strongly I feels GOD is healing, and molding our entire family for his plans. I really need to stress that I am NOT GIVING MEDICAL ADVICE, I just want to share what it working for us. Many may have very strong opinions on what I am doing, but like I said, it is working for us, so I just want to share and give hope. I pray for all of you. I will continue to update- Dec will be scary, that is the month she always gets sick.

My dd has issues with writing out the work for her math problems. She can do the calculations, it is just frustrating for her to write it out. She gets them right most of the time. It is hard to explain to her teacher why writing out the work is hard for her, and I think she sometimes thinks I am just giving her the answers. She is really doing the work! It is just too frustrating to get her to write it out. I saw something in a post not long ago about the spacial functioning (or some other area) that makes this difficult for PANDAS kids. Anyone know where I can get some info on this to present to her teacher???

I believe my dd has had PANDAS since about 1 yr old (now 8). There were several times over the years when I looked up Autism to see if it fit because of things she was doing. Never quite fit, but I do think alot of Autism Diagnosis could actually be infection/virus/autoimmune related.

It will be great for you to be there! Maybe you could even call ahead of time to let them know- they may be interested in a testimony from a PANDAS parent. Be prepared if the topic is trying to disprove PANDAS as well.

sorry my spelling sucks, at work, gotta go

Oh Emerson, I am so sorry you are down. For what its worth, you spend alot of your older years wondering why you did all the thing you did as a teen, so maybe you are sparing yourself some regret. You are amazing. I can see things that my dd 8 says that show her wisdome beyond her years, I think that PANDAS makes children tap into other areas of their brain, so embrace your gift. Creativity flows through all of your writings, this is true of my dd. She is SO CREATIVE and IMAGINITVE. Maybe the right brain compensates here, I don't know, but I am encouraging her to embrace it as a gift, and I encourage you to do the same. Have you ever thought about being a writer?? Are you artistic?? Many artistic teens feel different from the mainstream. Maybe you would make better friends in a creative community. You have literary talent, really, go for it. I can only see a small picture of you, but I can't help visualizing you as Selena Gomez. My dd would be in awe of a girl like you. Don't be too hard on yourself, God has chosen you for something that others can't fill, that is why you are different. PM me anytime if you need to chat.

I wish I could too

I didn't have anything like that with dd, but I was reading a book on Cranial Sacral Therapy which may give you some link here. Can't remember the name of it, I was reading in naturopaths office, but It discussed restrictions of cranial bones disrupting the flow of cerebral spinal fluid, which can become symptomatic. It even discussed relief of autism for some patients with Cranial Sacral Therapy. I know that the medical field is starting to open up to this therapy. The last hospital I worked at even offered it at the wellness center. Maybe worth looking into.

I thought this was interesting- I have just been mulling over my dd's medical records. She was sick within a month of every vax visit. FACT: Of all the vaccines which have been routinely used by children in the past century, the brain damaging effects of the pertussis (whooping cough) portion of DPT vaccine is among the most well documented in the scientific literature. Created in 1912, the crude pertussis vaccine basically consisted of B. pertussis bacteria killed with heat, preserved with formaldehyde, and injected into children. In the early 1940's, aluminum was added as an adjuvant and later the mercury preservative, thimerosal, was added when pertussis was combined with diphtheria and tetanus vaccines to create DPT. Pertussis vaccine was never studied in large clinical trials before being given to children in the first half of the 20th century or after it was combined into DPT and recommended for mass use by the American Academy of Pediatrics in 1947. The pertussis vaccine's ability to kill was first signaled in 1933 when T. Madsen reported two babies died within minutes of vaccination. In 1947, Matthew Brody gave detailed descriptions of two cases involving brain damage and death after pertussis vaccination. But, it was the 1948 published case study by Byers and Moll that gave the strongest warning that children were suffering brain inflammation within 72 hours of pertussis vaccination and being left with various kinds of brain damage. Forty years later, the prospective UCLA/FDA study published in Pediatrics in 1981 comparing DT and DPT vaccines would find that 1 in 875 DPT shots is followed by either a convulsion or collapse shock episode within 48 hours of vaccination. Biological mechanisms for pertussis vaccine induced brain damage center on pertussis toxin (PT), one of the most lethal toxins in nature. Pertussis toxin is a known neurotoxin, a reliable inducer of brain inflammation and brain damage, which is why it is used in lab animals to deliberately induce EAE (experimental autoimmune encephalomyelitis). Pertussis toxin is implicated in brain inflammation caused by pertussis (whooping cough) complications as well as pertussis vaccine complications. Unfortunately, pertussis toxin is also thought to be responsible for stimulating immunity which is why it remains in DPT, DTaP and Tdap vaccines.. Other ingredients in DPT vaccine, which have been associated with neuroimmune dysfunction and may interact synergistically with pertussis toxin to cause shock, brain damage or death are: endotoxin, aluminum, and mercury. After decades of reports in the medical literature that the pertussis portion of DPT vaccine was causing brain damage in some children, the large, case controlled National Childhood Encephalopathy Study was conducted in Britain and published in 1981. It confirmed a statistically significant association between pertussis vaccine or pertussis-containing vaccines (DPT) and acute brain inflammation leading to permanent brain damage. An NCES reanalysis 10 years later re-confirmed the finding. In 1994, the Institute of Medicine, National Academy of Sciences, published a report validating the conclusions of NCES, stating that " "the balance of evidence is consistent with a causal relation between DPT and the forms of chronic nervous system dysfunction in the NCES in those children who experience a serious acute neurological illness within 7 days after receiving DPT vaccine."

have you checked the PANDAS board? It is always good to rule out medical conditions first. My dd would have certainly fell under a tourettes diagnosis, but antibiotics clear her symptoms. She isn't 100% but has improved to about 85-90%. Try to get as much info as possible. I am sorry for what you are going thru, and unfortunately, we parents are left to sort thru everthing without much support from many doctors. We know our children best, go with your gut. I do have to say that I think Olive leaf extract has had a negative effect on my dd tics, so be careful, even with homeopathic/ natural meds.

Kind of like you I was initially worried about Tourettes because I have 2 cousins diagnosed with OCD and tourettes (1 has grown out of it ????) But my dd 8 had on and off tics for years, that is actually what she named them, not really motor like, and maybe could be confused with OCD. Then when she had a sudden severe decline in April 2010, she had panic attacks, severe ocd, and by the end of the week pretty severe motor tics of all extremities. I actually thought tourettes, but came across PANDAS and had to rule it out. I am sure many Dr's would have been happy to give us a tourettes diagnosis. But strep antibodies were high and tics resolved with abx. I thought they were gone, I havent' seen them for a while,and we have done IVIGx 3. I did try Olive leaf extract for a few days last week and she now has an increase in tics, ocd holding, not gone, but manageable. I am certain it is PANDAS/PITAND and not tourettes now. I also think it is suspicious my cousin grew out of pretty severe tourettes, I think he may have had PANDAS as well, but he was diagnosed early 90's. May be worth looking into about your brother as well.

awesome

We had VERY SERIOUS RAGE issues. My dh and I were covered in scratches and bruises for about 2 mos. She bit me, punched me, kicked me all day long.My dd 8 broke the glass off of our entertainment center, and kicked a hole in her bedroom door.I can not describe it any other way than it looked like possesion. We live in a townhome so I had to tell several of our neighbors what was happening, they were hearing it all the time. I know what you mean when you feel guilty, I could not always stay patient with that. I had to sit on her, restrain her, push her away when she tried to attack me, hold the door to her room. Anyway, I have to say IVIG is helping immensely, we have done 3 so far, and have 1 left next week. During those darkest months, my dh and I loved to listen to a song that just reminded us of who our little girl really was. Sorry I don't have a link, but you can probably google it, it would actually make me smile through all of the horror. It is called "patient with me" by a band called Wilco. Hope it helps. Alot of us know what you are going through, I am so happy to be seeing my real child again, I am not crying as often, but I still do, and I think it is mostly tears of greatfulness and fear. She is not 100%, but any improvement is huge when you are living the darkest days. My prayers go out to you.

So glad to see this, I was starting to think I was a little crazy because in so many ways this has changed me fo the better. As a parent, as a person. I was just telling my friends this weekend about how I wanted to never go back to the parent I was before all this. I dont' take my dd for granted at all now. I enjoy EVERY pleasant moment with her. I am so much more patient, and all this has actually brought my dh and I closer (there is no time or energy for us to argue:) I have actually seen great strides in my dd trying to express herself over the last couple weeks, it is amazing. I am much more sympathetic to moms with children acting out, I just have the problem of thinking everyone has PANDAS Anyway, in some wierd way I do believe it is a gift. Growing comes from suffering. I do have to say, this new found patience probably wouldn't have withstood that woman and that may have gotten ugly. Good thing you did what you did, you are a better person for it.

No more vaccines for my family!

I have been told that the ivig would help fight the mycoplasma.

We have had 3 ivigs done this way. Very comfortable for us, we have a great nurse (he is actually a neurosurgery PA) VERY INTELLIGENT, and makes me feel very safe. I think your nurse could make or break the experience for you. We have done it monthly for the last 3 months. Our nurse specializes in ivig treatments, he has told us many of his patients take the infusion to work with them. I like it at home because my dd 8 is more comfortable. We always do it on a Sat night and make it an "ivig party" we have her best friend over (she has even spent the night with her 2 of the 3) we have pizza, some desert, and play make me laugh while dd is getting iv put in. It helps distract her from the pain. My dd actually looks forward to her infusions now! Our nurse comes around 9 pm, and we have most of the infusion while dd sleeps, very convenient. The first infusion is the scariest, just need to watch VERY CLOSELY for reactions. I have read on here that changing the type of ivig may cause reactions too, so I would make sure that stays consistent if you are having multiple infusions. Hope that helps, PM me if you have any more ???

Interesting! I am a firm believer that our food supply is taking its toll on our children. I read a great book from my naturopath called "Back to Basics" (sorry don't have author on hand). Just talks about how current generations are starting to see/feel the effects of changes made to our food supply in the 40's and 50's The connection with many of our illnesses (including autoimmune!) This seems a bit of a paradox with the GFCF diet too (limiting food selections). I tried it with dd, didn't really notice much of a difference, except increased grocery bills (about 6x), and increased stress for her and I to plan meals. We have always been healthy eaters, so we have just gone back to our normal diet, whole grains, organics and such.

wow, I think we are twins. I am just the same, didn't do much testing before ivig (didn't really know exactly what to test for) and I have the cunninghams test sitting in my closet. We have done 3 ivig though, and we are seeing alot of improvements though. So my gut is to wait and see as long as we are moving in this direction. I have thought about lyme testing, even though lyme doesn't make much sense (unless it came from me) but I really worry about the accuracy of the testing, I don't want to start assaulting her system with more meds if I can't even really rely on the test results. Mycoplasma may make more sense for us, but the ivig will help. Although I am now freaking about lyme because I actually got BIT BY A TICK last week!! I lived on east coast my whole childhood and played with ticks daily, and never really had a bite like this. Well, anyway, just want to let you know I am with you. Did you only do 1 ivig? I think that we are seeing the progress we are because of doing pretty aggressive treatment (2gm/kg every 4 wks times 4) I feel like I need to give it a chance, it is for healing, not masking symptoms. We still have some moodiness, and residual OCD, all motor tics gone, but the vocal comes and goes. Our biggest problem has been the word "back" Try going without saying that for a day. I feel like I am starting to get bothered by it when others say it because I am so paranoid about it. She still gets uncomfortable when she hears it, but she doesn't try to kill me over it anymore, which is huge progress. We definitely see a 3 steps forward, 2 steps back type of pattern, but I am so happy to see my dd's personality that I haven't seen in years! I wish you the best, it would be good to get tests for peace of mind, but you may need additional ivig if you only had 1 (seems alot of kids do). Best to you