Priscilla

I didn't notice any smell w/ dd ivig, but the sucrose based ivig brands can cause renal failure. If you are not already having her monitored for that, you may want to have her BUN and Creatinine checked since she has had several doses. Is the urine very concentrated? can you measure how much she is going? Even if it is frequent, the volume is very important.

Omnicef was our first abx, worked well but took about 10 days to start seeing results. Lost effectiveness after about 2 mos but I think it was because we were new, experimenting (with the pediatrician) and weaned her down an few times. Augmentin XR is working best for her now (couldn't tolerate zith stomach aches.

we had 4 HD ivig paid for by United Health Care under a PANDAS/Immune diagnosis. Would have been responsible for $2000 out of pocket maximum but pharmacy ate that cost on 1st dose knowing they would be reimbursed at 100% for next 3 doses.

ok, so not to bug you, again I am working this out in my mind trying to process and eliminate- just sharing in case anyone would want to know. Here is what I am thinking (just for us) 1- zith didn't really work for us, couldn't give it much chance because her her stomach too much 2- REELING ME IN- this is what I am wondering about for us- history of pneumonias, studies on alveolar macrophages show phagocytosis and internalization of the strep. Repeated bouts of pneumonia started after a prolonged diagnosis on a strep throat infection as a baby. Strep antibodies were elevated, and Augmentin XR is effective 3- Not using zith so I am crossing this off 4- Possibility of lingering mycoplasma- but strep antibodies elevated with sudden exacerbation-leans me more towards strep 5- Could be possible, but never a problem before 8 yrs old- understandably something has triggered this process, now maybe more sensitive Also we have done ivig with success, even off abx for 2 months. But 2 months after last infusion she had a 2 day fever and cough, then relapsed. That is why we have restarted abx. Immunomodulation should have been achieved with ivig, would ivig help fight an intracellular strep?? Hard to say, but the arrow is pointing towards the possibility of a resistant strep. Thanks for your input, again, I am just thinking out loud, trying to narrow down the list of what could be going on here. The list of causes in the PANDAS/PITAND world seems to be growing, as if dealing with the illness isn't enough. I appreciate your time, don't feel obligated to entertain me, I do appreciate your input though. Hope you have a HAPPY NEW YEAR full of positive change. Thanks for all you do.

just noticed some of the side effects for Lamictal are : difficulty thinking/concentrating, restlessness, mood disturbance, swelling itching irritation of vagina (sorry to be graphic but I remember your post about the neck massager). This is just a short list of a long list of side effects. Did she have all these symptoms before starting these meds?? Like I said, some PANDAS children actually worsen with these types of meds

I will also add (JUST MY OPINION) within the first months of this for us, my daughter was taking over 7 pills am and pm, several supplements, antibiotics and antifungal/yeast. This really bothered me, stressed her, and made it very difficult to know what was helping and what was hurting. It is so easy to get caught up in trying everything- we want so desperately to try anything that may help our children. Then it starts to get overwhelming and very confusing because you can be bombarded by soooo many different supplements. I got to the point that I just stopped EVERYTHING! nothing but a healthy realistic diet and occasional whole food vitamin. We were off of everything for 2 months, then a cold set us back so we started antibiotics again, after 3 weeks, they are helping. I do feel she needs some gut protection while on abx so I have her eat yogurt and yakult culture daily. If I suspect yeast again I will add more probiotic. My point is, at least for us, more meds, more stress on her and her body. Elminating all unecessary meds and slowly adding in what we may NEED has given us a peace of mind. I can honestly say that all the supplementation and severely restricted diet had no real positive effect for us (not that it doesn't for some). I am just letting you know that I feel for how overwhelmed you must be. Try to go with your gut on what you think she needs, you know her best. I do agree that the charcoal may be paradox. If you feel the abx are working some, what are the chances of trying to wean her off some of the other psych meds? If she is PANDAS, those meds can make them worse, or they can have some serious mood side effects (especially on teens). I will keep you in my prayers.

I understand the abx don't remove antibodies, and may help supress infection progression "if" there is still an infection (may be even property of some abx). I guess it just gets complicated when there hasn't been ANY sign of infection for at least 3-4 months, and antibodies are elevated (our case). Of course as you said, we don't know how long it takes for them to fall, but the severe exacerbation of symptoms was not until 3-4 mos post illness, and it was the ASO that was elevated. Then I get stumped on why abx work so well, symptoms resurge when off abx, then they work again. So as speculated, either the antibody production doesn't shut down (even in the absence of infection), or the infection persists, in our case, with No signs or symptoms of infection. Then a child could be doing ok, and exacerbate without a strep illness. Again, either glitch in antibody production, or a low lying chronic infection resurfacing. (So just thinking outloud online) I am wondering if it is an infection, why has it become so hard to erradicate, even after months of abx- has this strep morphed into a "superbug", and enabled itself to hide from abx, then trigger this immune response again and again. I know we don't have all the answers we want (if we did, we wouldn't be here). Just my PANDAS mom mind spinning again. Thanks

another thought, could it be radiating from the ear? history of ear infections? Dental issues? Just curious

not sure about jaw pain, but my dd gets sinus pain, another mom I know- her son gets severe stomach pain. The nurse that transfused said he sees alot with pain in the back of the head. It is strange to me, it makes me wonder if the area of pain may be the area that has chronic infection/issues.

Thanks Buster. I have also noticed some reports of titers rising after abx. I was thinking about how Lyme antibodies can rise after abx due to the changing of the organism (possibly migration???) Got me wondering if an intracellular strain of Strep lurking could cause the same response (increase in titers after abx) Any thoughts??

my dd ocd has nothing to do with contamination (quite the opposite, really tough to get her to wash) so I don't really have any experience with this, but maybe you could replace all the soaps in your house with lotion (just put it in a soap bottle so it looks like liguid soap) not sure if your child would wash more or if it would help with drying. Just a suggestion.

So sorry Emerson, it is very hard to lose someone you care about, especially at a young age, and on top of your other struggles. You are an amazing young woman and time will get you through this struggle too. My prayers are with you and your friends family.

I know what you mean, it is so bizarre. It is like someone hypnotized my dd and said when you hear these words you will freak out. It is so hard to explain to people, they look at me like I am crazy, and I feel crazy when I am saying it.

my dd got HORRIBLE stomach aches from zith, to the point where she refused to take it. I know of at least one other child that can't tolerate it because of stomach aches as well. Even if she doesn't have pain, the irritation of her GI tract may cause a decrease in appetite.

funny you post this, it has reminded me of a liking I took to pacifiers in the 4th grade, not sure why, but I did have one for a little while, then it passed. I wouldn't too fear too much that it will last forever. Does she do it only when others are not around? would she use it in front of her friends?

my dd has complained of chest pain at times, not that severe though. I think I remember reading that one of the tick borne illnesses can cause chest pain. I can't remember if you said you had ruled all that out, although many are saying you really need an ILAD or LLMD to determine whether the tests are really negative. I am reading Cure Unknown, while I don't think lyme is the case for my dd, it is very good knowledge to be armed with. Sorry you are still going through this.

you know I have to add that most of my dd issues, tics, compulsions have centered around her head and spine arching her back, pressing on her mouth, we couldn't touch her head or say head before, all the mouth issues- and the words seem to correlate with her sensitivities. Does your child have other sensitivities, issues in the genital, bottom area that may correlate with sensitvity to these words?? Just curious, I have always thought there is some link with dd.

YES!!!! This is my dd 8 main (and possibly only) remaining issue. Her triggers are "back", "chin" , "jaw", and "yawn". Try going a day without saying the word "back"- IMPOSSIBLE!! This one really sets her off, total rage, attacks me (no matter who says it). Any of these words can send her into a full blown rage, screaming meltdown for upwards of 10-15 minutes. We noticed some serious slipping after a cold in November (we were off abx) had to restart about 3 weeks ago. Her main issue has been these words, she seems to have to do a compulsion when she hears them. I am not sure exactly what it is she has to do, but she will run into the bathroom screaming and press on her mouth, all the while crying in torment (I think she actually hurts herself). Really tough, and very hard to explain when others ask what is wrong with her. Thankfully, we have noticed her response starting to mellow over the last few days. She had some ERP therapy when we took her to a trapeze class the day after Christmas- they must have said "back" 500 times in one hour (back flip, arch your back, any back injuries?, swing back and forth.......) I am so suprised she made it thru that one. Over the last 2 days she seems to just grumble when she hears it, if she hears it too many times in a row it can still set her off. This is very bizarre to me, nice to know someone else understands..

I have heard that some people have pretty drastic, instant results. Like I mentioned in another post, ours took a while. We did notice a change in one of her OCD behaviors the day after the 1st ivig. We got all excited, then all ###### broke loose a week later. I am not telling you this to discourage you, all kids are different, but I do like to let others know so they can prepare themselves if it does happen, and also to give hope if if brings you that far down. For 2 straight months after 1st ivig we felt so hopeless and desperate. That is when I really learned to live one day at a time, I was thankful that we made it at the end of each day, and at the same time scared to start the next. It did get better though. So glad to hear that things have calmed a little, maybe your little (or big) Christmas gift Hope things only get better from here!

I have noticed some of you have had lab results with the CD markers. I am educating myself more about the intracellular strep issue. I am wondering if anyone has had testing for this, who is ordering it, what kind of results. I have noticed some CDmarker results posted. Has anyone had their Dr treat according to those results?? As I read more and more about Lyme and Mycoplasma, it makes sense to me that maybe we have this strep "superantigen" that is hiding like the mycoplasma and lyme. My dd did have elevated titers and distant history of strep. Maybe the right combination of abx geared specifically toward strep (like myco and lyme treatment) could be promising- I wonder how much more research is being done on this, or if we can test samples for the macrophage/neutrophil intracellular strep from blood samples (like the tissue samples on previous study)If anyone has any info on testing for these CD markers please let me know. Thank you.

you may want to know if this is a 1gm/kg dose given over 2 days- ex. if she is 40kg she would get 40 grams total- 20g 1st day, 20g 2nd day. Or are they giving 1g/kg dose each day (40 g 1st day and 40 g 2nd day for a total of 80g). My dd had 2gm/kg (given in 1 day) for 4 total infusions, each 4 weeks apart. It did help alot, to the point that I took her off abx. But she had a cold after thanksgiving and she has now slipped alot. Back on abx, more blood testing monday, and possibly more ivig. Her progress did take a while, MAJOR decline 1 week after 1st ivig (that is when we went to ER), then the good changes started about 7-8 weeks after 1st (which was 3-4 weeks after 2nd infusion). It is a slow, sawtooth process, and here we are again, scratching our way back to what we call wellness (even though still lingering behaviors). So many prayers to you and your daughter, this is so hard on them. I have a rager, and last nite she felt one of the scratches she left on my neck and actually apologized (first time ever!) That meant alot to me, showed me my true girl is still in there somewhere. Keep your hope alive- you BOTH need it!

we ended up in ER after 1st ivig. They wanted to admit her to PSYCH unit, but I said no, I thought it would make her worse. I have also had to tell many of my neighbors about the diagnosis, I live in a townhome, no getting around it. Fortunately I have lived there for 10 years and they know this is not typical, its new, so they have been pretty understanding. I know personally in the past we would get emotional, stressed out, or angry in reaction to the rages and this made them worse and last longer. Now I just kind of go numb, stay near, be totally quiet, and let get through it. Hard when she is trying to beat the ###### out of me, and sometimes I do have to grab her arms and remind her I am in control, but they definitely pass a little quicker that way. I pray for you, you must be in such desparation. I know the ER I went to was pretty shocked, wasn't sure if they believed me, but the nurse actually found discharge instructions in their computer system for PANDAS- she was pretty shocked when she found that. Maybe a higher dose ivig will help. IVIG 2gm/kg did help us, but a cold has now set us back. Hopefully you and your daughter will get relief soon. It is so easy to disconnect from them when they are like that, just remember she is sick- it really helped me to see my dd well for 2 mos, now I KNOW the BEAST is not really HER, but the ILLNESS.

Yes I had both books. The other is "up and down the worry hill" which may be a little more appropriate. The author actually has a good book for you called "what to do if your child has obsessive compulsive disorder" This is the book that lead me to the PANDAS diagnosis, although it is a brief paragraph in the book, the thought that my daughters behaviours could be infection related needed to be ruled out- then elevated titers and response to antibiotics- Thank God I found that book. My dd is 8, she wont' have anything to do with the books. I think ERP is EXACTLY what she needs, but after several months with the therapist, she didn't even mention starting it. My dd has rage issues that come with the OCD, I found the therapists don't like to work ERP with that, so I am going it alone. My dd wont' open up with a therapist anyway. I am thinking about using the worry hill book again when we get to the point of trying to refrain from her compulsion. Right now, our first step is just to TALK about it. My problems with the books were also that my dd has very different OCD. She has compulsions she needs to do to relieve anxiety from hearing certain words (back, chin, jaw, yawn) She has no contamination fears at all, so like you, I am afraid she may pick them up if she reads about them. I also think it is hard for her to relate to that because they are such different fears than hers. Not even sure if hers are even fears, rather just triggers for whatever reason. I also purchased a CD program that may be helpful, I think this is the best thing I gotten so far, my dd actually gave it more of a chance than ANYTHING else because it is kind of fun, she did stop listening but I think we will work towards it again because I do think it can be very helpful. It is called the TURNAROUND Program- turning fears into freedom. You can order it online and there is a moneyback offer if it doesn't work. I thought it was worth keeping. Hope this helps

as odd as it is, this is a relief to know these rage/tantrums are much the same for many of us. The kicking, hitting, scratching, biting, conflicting requests, crying to get away at the same time I can't be out of her sight, dilated pupils, hatred, fearlessness... we have it all. This just confirms there is a syndrome type behavior going on here. I have found that not reacting, just being there, quiet, and waiting for the end when she just says "mommy hold me" while she is crying has helped it pass a bit easier. At first, I reacted more, fearing that this is "who" she had become. Now that I have seen her better (so good she went 2 mos without abx) it is so obvious how sick she is now that she has slipped again. This helps me not to react, but it does make me so sad for her. Help Lord Please....

hallelujah