norcalmom

I just got the go ahead from DH to attend this. I'm planning on going down on WEds night. Would love to connect with any other parents there! Going to make sure its still open for registration and get hotel/plane res right now!

Thanks for all the replies. YES - the 2nd advil works pretty well! I just am afraid of so much Advil. Some recent days I've done 2-3 advils and only one does of Azith. Frankly, not sure the azith does anything anymore - but my son says he can tell if he doesn't take it and feels off. I want to switch to Doxy (we did this for a while last year when we started to consider Lyme) but he had really bad reaction to the sun. He plays baseball, so can't avoid the sun. I'm waiting for December and rainy season to start to do a longer period of Doxy. When we did this before, he started to tic, just for a couple days, and it looked like he might be "herxing" from something. ITs was weird - he was not exacerbating. I want to have Dr Mcghee measure his MycoP titers to see if there has been any movement in his (IGG super high, no IgM last time...disagreement among experts as to what that means, but Doxy is antiB. of choice for that one) Ifran - I've been tested two or three time with various blood tests for thyroid dysfunction (one time by a cardiologist because I have weird arrythmia), but the tests are negative. I did not know it could cause sleep issues. I'll keep an eye on it, but I think this round of sleeplessness is caused by pure worry. I've started ot learn to go back to sleep now. My son has now established a fairly standard pattern of coming into our room every night (where we now have a mattress topper, comforter and pillow on the floor for him). We've told him he can come in if he doesn't wake us up, and he's quite, but I still hear him (I should od like my husband, who started to sleep with earplugs when we had infants!!) And since my son can't stand stand to hear me make noise with my throat or mouth - we now have HIM sleep with earplugs in our room when he comes in so that he can better resist the urge to tell me to stop (thereby waking me up!) I've not tried NAC - but I've had a bottle of it in the cabinet for months! EAMOM - I tried to PM you about a week ago when I read on a post that you went in for you 3rd IVIG (your mailbox was full), and used Dr McGhee .Sorry to hear she is exacerbating again. Her pitands and low iron, and her pattern of slowly increasing baseline over time, are just like ours. I hope your IVIG went well, and she is on her way back. I hope to see a post from you to that effect in a few weeks/months! Nice to have Dr McG here isn't it?

I wonder if they are doing any sleep studies with the kids in the pandas trial. Anyone know? The waking in the middle of the night is killing me - because he can go back to sleep, but I can't! I just start worrying aboutt he lack of sleep, what is waking him, and how lack of sleep can make you crazy without having pandas, as well as effects his immune system - and I'm afraid he'll catch something.

Hi everyone, Its been awhile since I've posted, but I do check in and read a bunch every week or so. I'm just trying to spend less time on here. DS had second IVIG last April. He, aside from horrible side effects of days of migraines and nausea, did well. Not as improved as the first IVIG but he wasn't as bad off as the first time either. Unfortunately since a little before school started we are seeing some backsliding. Not just a few days. I'd say its been about a month now. He's got some very minor tics that have come up - a head shake that is only in the morning, or when he's very tired. And the "eating thing" is pretty much the same. He's maybe slightly less obsessed with it than before IVIG, but not much improvement in that area. We may have to do some intensive therapy to work on that one, but I really can't see doing that until I know his immune issues aren't going to bring it all back as soon as he gets the sniffles. HIs attention and school stuff seem good, he isn't as irritable, but the one thing that is sort of a new thing for him is separation anxiety related sleep issues. His bedroom is down the end of the hall, next to DH office (and DH is usually in there til all hours unless he is travellng for work - which is often) The issue is his minor separtion anxiety makes him feel too far away to sleep if his Dad isn't in the office next to him. And even when he is, DS lays there worrying about when dad will leave that room to go to sleep. He's always had some sleep issues with exacerbations - but I wouldn't say he's in an exacerbation. We are giving 1-2mg of melatonin at night, and in addition I've set up a mat on our floor that he can move to during the night. He wakes up and comes into our room almost every night between 4 and 6am for past 2 weeks. Anyone else had this sort of symptom curve, or a child that just has "minor" sleep issues - although a few nights with little sleep is not really minor. He certainly isn't getting more than 7-8 hours a night. He falls asleep at 11:00-11:30, and is up for the day at 7:00, and is probably up for an hour during the night. Today he got up at 5:30 - woke us all and no one could fall back. I'm not sure how much is the true insomnia, and how much is separation anxiety causing the insomnia. I thinks it could be a little of both. Its a bad combination! SO thats our update - it could be better, it could be worse. Making appoint with immunologist today, just to check in maybe check some blood work and update his on DS. I'll let you know if he has an insights!

HI Mary, I was hoping not seeing any posts from you meant that things we good. Sorry to hear he regressed, but I'm happy you were able to get him in for IVIG so quickly and get it covered. I DO believe that it works that fast. Our first HD IVIG I saw a minor tic (I'm not even sure he was aware of) disappear the first day. He also wanted to go cloths shopping (we were stuck near some mall near Dr K's office) and buy two shirts - and he though he looked good in them - this after being hyper critical of how he looked for about 3 months prior. For us, the healing came in waves - so not a steady line of improvement, and indeed sometimes I would think he was regressing, only to see him better than ever a day or two later. Hang in there. And thanks for the updates. We are doing OK (but not great) since HD IVIG #2. Not as big of a difference as the first time, although DS wasn't as bad off as he was at first. He has return of some symptoms in past month since school started (I am making separate post on that) , but there are not as bad as before. Debating net step. Thinking of you! Keep up the Advil if you are on that - for at least a couple days - and do not hesitate to give him steroids immediately if the advil isn't enough. My son has horrible reactions to IVIG. MIgraines and nausea for 7 - 10 days. I hope your son fairs better. For us it starts the night of the second infusion, to two nights after. Its weird. but being ahead of the pain curve helps.

Graph 2 - this is before treatment. Never went back to fully "normal" but got better and better, then caught a cold - back to exacerbation. It just saw toothed from there. Sometimes very obvious link to illness, but once or twice no - illness, perhaps he was exposed to someone else and that stimulated his immune system enough to exacerbate.t. "sudden" probably took about 4 weeks to fully realize, not 24 hours. The NEXT exacerbation - it took about 2 days or all of the symptoms to appear at maximum levels. I think what we had was approx 2-3 months prior to the "initial exacerbation" was a case of untreated strep. And I think in retrospect, he may have had some "minor" exacerbations -in years prior to that. The "sudden onset" was different however - he had so many symptoms at the same time, and tics started then and obvious OCD. Prior to that he only had some odd fears, bedwetting - he would go a year dry and then wet for two months straight - and "ADD-like " behavior. Mild anxiety. Honestly wasn't tracking things, so don't know if the stuff happened at the same time - it was subtle. The sudden onset was times 10, and add in 10 more symptoms. He is has had 2 ivigs, and is seemingly stable, but still has one OCD issue, and some very minor other symptoms. He has not been ill - not even a sniffle - since ivig #2 (early April ), so that may account for a lot of it. Knock on wood he stays healthy.

I'm really interested in all the recent posts on glutamate. I've been doing a little researching for foods or supplements that can help process excess glutamate. Has anyone tried curcumun supplements? NAC is another supplement I'm thinking about adding. I remember some posts a while back - it is used with OCD and specifically Triccholmania (sp?? - hair pulling). The Desylum is interesting, but I'm hesitate to add a medicine long term (on top of antibiotics) so I'm seeking more natural diet supplements to use long term. DS is 10 weeks post ivig #2 - and doing well. Not as marked improvement as ivig #1, but then again, he wasn't as bad off as he was when we did the first one. I think it is also very helpful that he has not had any illnesses - probably due to the time of year we did it this time. He still has some issues, unclear how much will clear on their own, and how much is learned behavior for having these thought patterns for so long. But over all trending up. I've been away from the board for a while, but saw all this info on glutamte and became intrigued.

my only thought is to take some video for yourself, in case you need to show/prove "tics" if you are seeking treatment like IVIG, or to show a doctor in the future. Some of my son's tics were what you describe - almost normal behavior - and some were obviously tics. Sometimes one turns into the other. they also try to disguise tics in normal movements. Its kinda funny with baseball. My son is a few years older than yours so its probably more noticeable in our age group, but if there is a group that is riddled with odd movements, ritualistic behaviors, and tics, it is baseball players! They almost all have these little things they need to do before they hit, or pitch or get set in the field, so they feel "just right". I hope it subsides soon - they are annoying, and can be bothersome if extreme, and for us seem to "hang on" longer than other symptoms after an exacerbation.

our doc said it can cause a little hyperness/insomnia and recommended giving in the morning.

doxycycline

Is see it is used in Parkinson's disease. Keep us updated - it may be something all pandas kids could used. Do you know what tests test adrenal sympathetic branch activity?

Interesting. How they measure sympathetic adrenal activity (wondering if panda-anorexia have this too - actually wondering if all pandas kids have it and perhaps anorexia is just a manifestation of pandas...) My child doesn't have anoerxia - but as Dr K pointed out - many of these kids have food related issues - and he put my child in that category even thought the food/swallowing issues are with me swallowing - not DS. Do you know anything about the drug they used in the study? Thanks for posting!

We are dealing with same thing at the moment. I've not read your whole thread so forgive me if this is redunant but I've a couple things I am working with my doctor to get a note- 1) if your child had ivig - the ivig provides protection for up to 12 months after (might buy you some time if you are in that window) 2) if your child is on antibiotics - antibiotics are first line of defense for whooping cough (pretty sure thats all they are really interested in), so you child is more protected from acquiring and spreading the disease (?) 3) you can get your child's titers tested to see if she is making antibodies already. We did this for tetanus a while ago...and he made plenty of those so he doesn't need a booster. If your child had the 5 regular vaccines at 2mos, 6mos, 9mos, 18mos and 5 years - chances are very likely she will already make the antibodies. Id ont wnat to stick my son (fear of needles) and I'm not getting the vaccine anyway, so we didn't didn't do this. But, it can be tested. ..and if she shows she has protection - there is absolutely no need to administer the booster. The new requirment in CA is booster every 7 years...but the old requirement was 10 years. (again - probability that she is making the antibodies is likely).

Thanks for posting this ..there is just soooo much information. I watched Dr C's - very relevant to all pandas parents. Its hard to tell which of the other presentation are worth watching for pandas related stuff....I started to watch the one on neuroinflamation, but my attention is waning..maybe later tonight I'll look at that one and let you know.

we've been sticking with a higher dose of azith. two reasons - anti-inflamatory properties of azith, and broader spectrum (DS is pitand - and we know he had mycoplasma) if your child reacts to infections other than strep, may want to consider broader spectrum.

might wanna do both arms - in case they can't get a vein in the numb one - we had this happen - nightmare trying to let him use the arm that was not numb!!

no - not yet. a few people see a little something right away, but most see something 5-8 weeks out...some even longer. DS has had 2 hd ivigs. First one, we saw what I thought might be mood improvement right way. And he had minor throat clearing tic that disappearred with in a day or two. BUT the reasons we went there - OCD and tic- like looking into the sun, didn't improve until 4/5weeks...and the OCD never fully disappearred. he had focus issues that went away, and we didn't know how bad they had been until they came back with a bad cold and he came home from school saying he couldn't focus on anything, and that he felt all "pandas-y"...he had first ivig over the summer. He had 2nd ivig about 4 and half weeks ago. I didn't see any improvement until last week. And, its hard to measure day by day, you have to look at one or two week blocks as a whole because he tends to go up an down more abruptly than prior to ivig. Our big improvement was that he finally stopped looking into the sun - just a few days ago. I hope I'm not jinxing it by writing this - he has a baseball game in a couple hours so I get to sit and watch if what he has been reporting to me is true or not (and the sun will be setting into his eyes...so it he is still doing it, we will be sure to see how bad it is) Its up and down though...good days start to outweigh bad ones...at some point! hang in there!!

Just wondering if anyone out there has gotten the dtap booster - its a combo for tetanus and pertussis - did your child react to it? I'm pretty sure I won't have my son get it, but checking in with all of you to see what history of this is. The booster would be given when they are 10 - 12 . Thanks for letting me know your experience with it!

no diabetes either side...but DS did test at borderline glucose levels first time around - I think 105? with 100 being the beginning of the middle range number...and then 95 the next time, so he was in the normal range the second time, but high normal. DS is pitand.

YES - this happens to my son. The first time we did the steroids...two big does spaced a couple days apart as needed after the infusion. Migraine started several hours after the end of day two...vomiting started 3 day after that with return of migraine. Lasted for about 7-8 hours. With recent IVIG, I didn't want to use the steroids. I had to the first night post ivig, his head was splitting, but of course he started vomitting within minutes. I think he got about a half dose, and it did take the edge off his headache, but the vomitting continued for several hours. I added some advil when vomitting quieted. I spoke with doctor who said OK to give higher does of advil (prescription dose - he is 120lbs)..which I did for the next day every 5 hours or so...and I set my alarm to get up in middle of night to give him one or two advil as well for a 2-3 days. 6 days after IVIG - I let him sleep a long time with no advil, maybe he went 11 hours, because of the timing of last does before bed and because I thought he didn't need it anymore...and he woke with a migraine and the vomiting again. It was short lived (2 or 3 times) and after that I did one more middle of the night thing... All told I'd say he had some form of headache for 8 days after IVIG. OH - I had him take benedryl as well. I was not as religious about it as the advil, but I did think it helped for some reason. through in a few charcoal capsules after the vomitting as well. With the advil, I think you have to get it in them before the pain gets bad (and then you can lower the dose of it) . and keep it up for a couple days longer than you think you need to - at least bedtime. I preferred the Advil to steroids. More work, but to me to give them something that shuts down their immune system right after you went to great lengths to bolster it, seems counterintuitive. I didn't know anything about steroids the first time, just that I should give it if DS got a headache that an advil couldn't handle. I'm sorry you are going through this- its so hard to see them in pain and miserable from something you've told them will help them.

Soemone above (blessedwife I think?) says that Swedo followed up after 8 years and many pandas kids had out grown it, and could manage with minimal medication. I think it is important to note she followed up with children in her study - those children were treated with IVIG, antibiotics, or PEX . So, those children didn't just outgrow it - they were treated - weather they may have outgrown it without treatment is anyone's guess.

Hi Bornxmom, I feel the same way about my son sometimes...I had the discussion with him just last night. It like he has no awareness that I am about to loose it and punish him...and that the same thing happened two days ago. Even though he's be warned, threatened, counted down, and yelled at. I was describing it to my firend while dog walking a couple hours ago - and she said - you should have him rate you. Say "DS...where am I at - am I a 3 - slightly annoyed - or a 9 - about to blow a gasket and ground you?" I haven't tried it yet - but I'm going to because its like he is not AWARE during those times, I'd like to see if he could learn to tune into to signals that something bad is about to happen if he doesn't change his behavior. I've been letting him slide too much because I know he can't help his behavior, he doens't have the tools get himself under control. But, I need to do something to make him more accountable. Hard to tell where the "soft" parenting stops and the pandas begins. I'm thinking of reverting back to something we did prior to pandas that seemed to work well. When DS was misbehaving alot we "Put him on Privileges". We took away all the things that we considered privileges. TV, video games, computer time, play dates. ...And he had the opportunity to earn those back with good behavior. WE were trying incent specific behavior (and I think this works best with specific targeted stuff - a short list) so for example, eating his dinner without complaint and clearing his plate. (he was in first grade...and would pout and complain and refuse to eat often, making meals difficult for the whole family)...so if he was polite and behaved himself he would get 30 minutes of a privilege. Typically he would "go on privileges" for two weeks. I think we started by using tickets..each tick was for 15 minutes, and we had 3 ways he could earn them. A thumbs up from his teacher (who I had to check in with every day) got him 2 or 3 tickets. Meal times - one ticket - homework- when I asked- without complaint, another ticket. After 2 weeks, the good behavior became the norm -for a while anyway! It works well with getting them to do something. I don't know how it would work with getting them to stop doing something...which is now more of our issue. I think your son is older? I would think an older kids 10-16) could handle a longer list. Let me know if you try it an how it works for you! The first few days are hard...but like I said ...it worked for several weeks/months for DS so the payoff was worth it.

My son has low ferritin as well, but not nearly as low as your DD. I don't supplement however. He eats an iron rich diet. DS's other CBC levels are all in the normal range, it is only his ferritin that is low - and its still in the "normal range" but just barely. I think with kids that who can be going through growth spurts and hormonal changes, these levels can change alot. At one point I was convinced DS had celiacs because he had low ferritin, very low zinc and lowish magnesium....had gastoenterologist check him for celiacs and retest those levels, about a month after the original testing, and they were all solidly mid-normal (except ferritin, which stayed borderline low). I know he eats an iron rich diet, it seems that his issue isn't getting iron, it is in absorbing iron. So, sometimes I give him some multi vitamins with iron in it, and he's added a cereal that has iron in it too. But, I know for myself, I am borderline anemic, and I need to take 1-2 iron pills (once per month..the same 2 day every month...and it helps ALOT, mood and sleep/fatigue especially)! So, your daughter must feel pretty bad...does she have fatigue? Did your doc test for any other minerals? Zinc, cooper, and vit A...all those levels can effect iron levels. And, celiacs can effect all the mineral/vitamin absorbtion...and with all the stuff our kids take that is tough on their gut, perhaps some damage there could be causing issues. Does she drink a lot of milk? That can inhibit absorption and even cause "milk anemia" (I think thats what its called)..you probably already know this - but for anyone reading the thread, you should have your iron rich food with Vit C foods, and have your calcium (milk / cheese / yogurt) at another time. How are her other CBC numbers? Here is a pretty good chart that describes different diseases and what the CBC show related to them. http://www.labtestsonline.org/understanding/analytes/ferritin/test.html Going GF and MF for a while might help. We did this with DS for a month before pandas dx's. But, I know you DD has food issues, so stressors in that area are probably tricky. I do think that the GF diet helped my son a little. On the par of giving fishoil. I think it suppossed to be anti-inflamatory. But what ever it was, it seemed to help a little. We were more "wheat free" that month than true GF. I didn't go crazy with it, and he got a big reward at the end of the month. But he also lost some weight in doing it..so, a drastic change might not be for you. the biggest benefit of doing it for a month was it made ME more aware of how much gluten he was getting. I learned over the month how to make some changes that I pretty much stick to now. We found different, more healthful, things that he likes. It was worth doing for that alone. (it stunk at the time!)

my son would wet a day or two before starting an exacerbation. It would continue during the exacerbation, but somewhat inconsistently. then, it would resolve. After his first ivig - he wet his bed for three weeks straight, every night, but he was not in exacerbation. He was getting better and better during that time. He was not in exacerbation heading into ivig either. Since then, he's had a couple nights jsut before getting sick, and once when when switched meds, where he did this - just a few days each time. I now see it more as a "change" is happening. Could be good sign (meds working, or ivig working), or bad sign (about to get sick). PS - to Nancy - I think red velvet cake was originally made with beet juice. ..so, DS can have his favorite cake and eat it too!! I'm sure you can google the recipe.

...I can't seem to find what Dr K recommends for post ivig...buffered vitamin C ...trytophan rich diet...fish oil...what else was there? Any of you been there lately and know the list by heart (cuz yoour counting out pill everymoring?!) Thanks!