Stephanie2

Both my 5 and 2 year old boys have PANDAS, very straight-forward cases. My 2 year old developed eye tics when he was 18 months old and the neurologist checked for strep and we found it in the stool analysis! Anyway, his PANDAS episodes appear to be getting worse (well he's 2 so everything gets worse!) and he is having a hard time fighting his current impetigo infection which has been going on for months now. He is on his 3rd high-dose antibiotic. He seems fine when on antibiotics, but when he goes off his impetigo comes back along with his pandas symptoms. Would any of these docs even be willing to do IVIG on a 2 year old? I'm not quite ready right now, but I can't do this all over again. My 5 year old has put me through the wringer over the years and I just want to get both of these kids under control so that we can live a normal life!! Thanks, Stephanie

We also use Custom Probiotics, very reputable. Seems expensive when you buy it but a bottle will last forever. I give my son 200 billion cfu's but I am working both kids up to 400 billion (half am and half pm). I have heard that they need to be 1 to 2 hours away from antibiotics. I always aim for 2 hours. I give his second dose of probiotics right before bed (gives a chance for the probiotics to colonize the gut all night long)... SFmom, who advised you to give a trillion cfu's? I have never heard of going that high. If it helps I'd love to try it b/c our gut issues are almost as bad as pandas issues. Stephanie

I give my 5 year old 1.5 tsp (I really could give 2 tsp., but he does fine on lower dose) and I give my 2 year old (about 29 lbs.) 1 tsp. Dye-free ibuprofen (Target has a generic dye-free that is much less expensive, we go through it like crazy around here). Well, regarding your 3 year old's strange behaviors, I hate to say it but it sounded like you were describing my 5 year old when he was 3. Also, my 2 year old has pandas. I had been suspecting it for awhile after the local neurologist said that he may have strep-induced tics (he didn't even know that my older son had pandas!). It was definitley confirmed when in Feb. both of my boys started having worsening of tics at the same time and then they both became extremely emotional, etc. I gave my 2 year old ibuprofen during a very long rage/tantrum (b/c I wouldn't let him play with the microwave). About 20 minutes later he stopped the screaming and went about his day with a smile! Anyway, within a couple days I started an antibiotic and voila the bad behavior melted away! Oh, and yes my kids start acting very silly (like very inappropriately silly) when they have yeast... Best of luck! Let us know what you find out! Stephanie

I would definitely have something on hand like Adivan/valium. Which office will you be seeing? Are you going to an office which has alot of experience with autism? We see Creation's Own in Melbourne (Bradstreet, Rossignol, Smith). They were fully prepared for my 5 year old (took 4 of us to hold him down for IVIG insertion). They said they have experience with big kids (like 6 foot teenage boys who try to tear up the office, etc...). Best of luck! Stephanie

I have a few follow-up questions for you: Do you think gluten causes tics? My son has been on GFCF diet for a year and lately I have been slacking a little here and there with the gluten (like allowing TRACES of gluten). Sometimes I wonder if there is an opiate thing going on and exacerbating his tics (and not to mention I have lately allowed soy into his diet). Still 99% free of additives/preservatives though). I have been thinking about trying Claritin and now that I read this from you I will. Last year when I had him evaluated by a psychologist, his current tic was eye blinking. On the first day of the eval, lots of eye blinking. On the second, I gave him claritin (due to hives) right before the eval and no eye blinking!! Ya know what she wrote in the report? That her take on the eye blinking is that it was due to allergies (in other words, his eyes were itchy and that's why he was blinking). She specifically stated that he took claritin on the second day and no blinking! How weird! She refused to give him a Tourette's dx b/c of this! Regarding CoQ10 and Carnitine. I have used both in my son, but before I knew he had pandas. I may try this again. Do you know why these help tics? Stephanie

Well, being a regular parent would be a dream! My first son started with pandas at 18 months, and so did my second son. Also, my second son had early signs of autism (which are now gone, except for the speech delay). So I have no idea what it is like to be a normal parent and I am going through a real time of anger. I am angry at anyone who crosses my path (especially the mom groups at the park who look at me when my son starts doing something crazy and pandas-like!). I am so filled with jealousy and I can't even imagine what it is like to just go to T-ball, karate, ballet and school functions and not go to a doctor's office every single week! Any activity I have tried to get my child involved in has always backfired (too emotional, too scared, to unfocused, you name it. and then school plays? forget it, the kid stands on the stage and cries his eyes out!). That really does look like a fairy-tale life to me! Ok, enough of the pity party...back to reality! I have also seen/heard the high-pitched scream! I hate it! We had IVIG done 8 days ago (for my oldest, ds5) and I am sitting here trying to remember if he was doing that pre-IVIG. I think that he was. Maybe it is an allergy thing, who the heck knows. Then again, I am wondering if it is due to yeast from the constant antibiotics. I will report back after 6 weeks and let you know if I regret IVIG. I will tell you this, I already regret that I only did 1 mg/kg and if we repeat it will definitely be 1.5 mg/kg. As far as DS2, I am on the fence regarding IVIG. He has some mild motor tics and minor irritability but I often wonder, who the heck gets the chance to catch it this early!? Maybe I should drop a bomb on his pandas now before it gets out of hand (which by the way, it IS out of hand when not on antibiotics. he is currently on low-dose azith). But insurance does not cover either of my boys and we only have so much money to throw at IVIG. I mean should I save it for my 5 year old who is debillitated by this? Hard to say (then again, not so expensive for my 2 year old who is still less than 30 lbs!). So much to consider, sometimes I get so tired of the research and constant decisions!! Would give anything for a week in Hawaii alone with my husband with a drink in my hand and my toes in the sand!!!!!!!!!! Stephanie

I got your PM but thought I would address your questions here so that others may benefit. You are definitely in good hands with Scott, however he generally does 1 mg/kg for IVIG which we did last week. I am going to ask him to do 1.5 mg/kg if we need another treatment. I spoke to a woman on the phone who's daughter did 2 mg/kg with him 5 weeks ago, so I know he is open to it. My son has trouble sleeping as well and Scott said that melatonin is great for sleep. I know from experience that it stops the tics long enough for him to fall asleep. He is 45 lbs. and I give between .5 mg and 1 mg, depending on the day. It knocks him out within 20-30 minutes! I give him drops that he keeps under the tongue for a few seconds and then he swallows. Yes, the tics could be yeast. Scott tested my son's urine which showed high yeast and bacteria. We are currently treating both, but so hard to get on top of with the constant influx of antibiotics! Scott uses diflucan and nystatin for yeast and vancomycin for bacteria. For pandas/strep, he likes zithromax once a week based on weight. I like this too because you have to give probiotics 1-2 hours away from the antibiotics, so it is less complicated on the days that he doesn't take azith. I give my son Taurine, I don't think it makes yeast worse (at least not for us) Regarding Bentonite clay, I have never used but I assume it is like activated charcoal in that it absorbs the byproducts of yeast?? If you use this you may need to give it 2 hours away from any supplements and meds. Regarding probiotics. Scott will tell you that the strep in the probiotics does not worsen pandas. I do not agree. I frequent the autism/dan boards and all the moms SWEAR that the strep probiotics cause issues. In my case, my son went nuts on it and developed a new tic that went away 3 days after I stopped it. I am giving my boys very high doses of probiotics. There is a company called Custom Probiotics (scott recommended) that sells a powder so you can increase it slowly as you wish. I am now up to 200 billion cfu's a day for my 5 year old. I am working toward 400 bill (half in am, half in pm, away from antibiotics of course). The higher the better when you are on chronic antibiotics. About Augmentin, well my son was given this by our local allergist when his throat cultured positive for staph. It made him nuts (as all antibiotics do) but it completely took away his appetite. Soctt said that augmentin tends to increase ammonia which takes away the appetitie. I don't think he is opposed to augmentin but I don't think he favors it, either. I know he likes zith or pen vk. Best of luck! Let us know how the consult goes! There will be tons of labs and some supplements to buy but it is so worth it. I have both boys with him and they are improving all the time (they have other issues outside of pandas). Regarding last week's ivig, I don't know what to think yet. I ended up doubling his tenex a few days later so it may be masking whatever is happening. I do know that my son's tics have stayed the same (possibly worsened) and his depression/separation anxiety is worse. So I guess we are dealing with some of the "worse before better" stuff, but again yeast and bacteria are bad and we are treating that right now. The picture is anything but clear. Time will tell and like I said, next dose will be higher. Stephanie

My son used to be up late due to his tics until we started Melatonin! It works like a charm, better than Tenex to put him to sleep. I give him drops, about .75 mg, about 20-30 minutes before bed (he is 5 yo, about 50 lbs.). He goes right to bed without an arguement and goes right to sleep. My husband and I wonder how we survived the nights before melatonin! Best of luck! Stephanie

Just want to get some feedback from other post-IVIG parents. My 5 year old received his first IVIG tx last Thursday (1 gram/kg). I didn't notice anything different until Sunday night at Easter dinner with my family. He was becoming quite psychotic and it was a real eye-opener for my family b/c they hear my stories but they never witness it! They were all trying to help me (my husband is out of town), taking him for walks, etc... Then, yesterday I picked up my boys from school and while I was driving on a major highway during rush hour traffic he started beating up the baby! I mean full out slapping his leg, pinching his arm, throwing things at him! My poor 2 year old (who is non-verbal) just sat there crying his eyes out. Then my 5 year old just hit him more b/c he can't handle the crying! I kept SCREAMING at him to stop and my 2 yo thought I was screaming at him! He was so traumatized! I finally got off the highway and pulled into a parking lot and picked up the baby (who had a bloody nose) and my 5 year old followed me around in the parking lot hitting the baby and hitting me! He was completely gone! People were staring, a lady came to help and I just told her help was on the way. My MIL came to get the baby and took him back to her house. It was just awful! I mean my son has "beat" adults before but never a child! So my question is this: do you think this is a reaction from the IVIG or do you think it is a yeast/bacteria problem from all the antibiotics/steroids he has been on recently? I mean he has a history of acting this way with high-dose antibiotics which cause yeast/bacteria. Then when we treat the yeast/bacteria, things improve greatly. But I am wondering if I am missing something here. Maybe it is a combination of both problems: yeast/bacteria and IVIG side-effects. I know I am preaching to the choir here but this is such a trial for our family. My husband is out of town until June and I keep having to send the baby to my MIL to live b/c it is impossible to keep the kids together (that is why my 2 year old is in full-time day care, my 5 year old can't handle school and he also can't handle the baby!). Even when my 5 yo is not being aggressive, he is CONSTANTLY pinching, poking, screaming in the baby's face. I think it has to do with his tics b/c he does not do this on the days that he doesn't have tics (which lately is rare). Any advice on any of this would be great! Stephanie

I have a couple experiences with this. First, when I was in college I had a choking episode where I kept choking on saliva or just my own throat! When I went to the ER they said it was called "globus palidus", a form of anxiety (I guess like a panic attack). So maybe in your daughter's case it is related to anxiety. Also, both of my boys have PANDAS, but my 2 year old also has Chiari Malformation which makes it hard for him to swallow sometimes. We are fortunate, as some kids with Chiari end up needing a feeding tube and then surgery. Chiari is very rare, so I am guessing it has more to do with anxiety. Does it go away with ibuprofen? Best of luck! Stephanie

Chemar, you bring up a good point, I think I have heard not to give Vit. D for that reason. It makes sense that to boost the immune system then maybe you are boosting the autoimmune process as well. I also don't like the idea of steroids b/c of the immunosuppressive aspect. Also, I have heard that echinacea is not good in general b/c it stimulates the immune system too much (or something like that). My son is under the care of a DAN doctor so they do things a little differently b/c most of their patients have more going on than just PANDAS. My son went into the DAN protocol with terrible immune issues: chronic ear infections (despite tubes), sinus infections, lung infections, asthma, severe croup and allergies. He does not have ANY of those problems anymore so for us I have no choice but to keep his immune system in top shape. However, it does seem that his PANDAS has advanced in the past year, so who knows. Maybe it would have gotten worse anyway. After all, he got 2 active strep infections in the past year that really did him in. Either way I think we were headed for IVIG, and who knows maybe my son will be a rapid responder to IVIG b/c his immune system is so good? I know he responds well to antibiotics (problem is he can't tolerate high doses of antibiotics, hence the IVIG...). Can you tell me more about where you heard that you should not enhance the immune system and why? I am interested in this (and trust me I have thought about stopping all of his supplements to let his immune system bottom out so that we could get low numbers on the immunology workup and then get IVIG coverage, but my husband and I decided that was too scary cuz you never know what he will be exposed to at that time). Stephanie A question...my son has Crohn's Disease, which is also an autoimmune class of illness, like PANDAS is we have been advised never to knowingly "boost" his immune system, and were also cautioned to stay away from drastic immuno supressive treatments...... and rather to aim for his immune system to be modulated or "balanced" have you been advised to boost the immune system for PANDAS?

I spent many months avoiding mainstream medicine and going holistic for PANDAS. The problem is that my son's condition is so darn advanced and he has so much inflammation that we really need to drop a bomb on PANDAS at this point (which is why I finally did IVIG a few days ago). That is not to say that the natural treatments didn't help. And once I get everything under control I will probably try to maintain with naturals. Here is what I have tried: Oil of Oregano (I find this to be a real powerhouse for strep and viruses), Olive Leaf Extract (very popular PANDAS remedy among the autism communtiy), Fish Oil, Curcumin and Reishi and many other things to just boost the immune system overall (vitamin A, Larix, Sambucus, Zinc, Vit. C). I have to say that I really did notice a difference when I tried Olive Leaf Extract 3 times a day, and then I added Reishi b/c of all of it's autoimmune benefits, and immune modulating and anti inflammatory benefits (not to mention it has direct action against strep). With Reishi I notice that my son seems happier on the days that he takes it and not so happy on the days he does not take it. Almost as beneficial as ibuprofen in that regard, to reduce inflammation. I try not to use Ibuprofen too often, but it really is a lifesaver some days! If you do a google search on the benefits of Reishi, you will be amazed. I did a lot of research on a good Reishi product and this is the company I order it from (Nuskin/pharmanix). It needs to be a standardized extract. As far as antifungals, there are so many. I really like Diflucan when we are in a real bind, but I also see noticeable effects from Oil of Oregano and Caprylic Acid. I, personally, take caprylic acid when I feel a vaginal yeast infection coming on and it takes it away within 24 hours. Stephanie

As for Kindergarten, I don't know what state you live in, but here in Florida you can use either a medical exemption (not sure how you acquire this and what the requirements are) or a religious exemption. I probably could have pursued a medical exemption as my son came up positive for an egg allergy on an IgG food allergy panel, but I just found it just as easy to go to the local health department and get the religious waiver for both of my boys. They did not ask any questions and so far at preschool they have not asked any questions. There are many parents nowadays who are not vaccinating so it is not as "stigmatizing" as it may have once been. Not to mention, my kids' preschool knows that both of my kids have multiple health problems and I told them that they both regressed after vaccines. How can anyone argue with that, ya know? Whatever you decide, good luck with your decisions! So hard when these little lives are in our hands! I always wonder what they would decide for themselves if they were little adults. Will they one day look at me and say, "thanks mom" or will they say "mom, you were crazy to subject me to all that stuff"! I know my 5 year old has not had a typical childhood and is constantly at the docs/therapists office. I just hope one day he will understand, and just be healthy and happy... Stephanie

I haven't heard of this before, so I thought I would post my "post-IVIG" experience for anyone who is interested. Scott Smith, PA with Bradstreet's office (Scott do you read these, can you tell I am a big fan?!) is the ordering practitioner of IVIG for my son. His approach is to start the child on a Medrol Pack (methylprednisolone) as soon as he begins to develop the headache/nausea. He told me to fill the RX and have it at home so that I can start it within minutes of any symptoms. Sure enough at 6 am (about 36 hours post-tx) my son woke up with full-throttle headache, nausea, fever. He was crying so hard and just felt terrible! I immediately started the Medrol Pack (2 pills) and told him to go back to sleep. He kept telling me that he wanted to throw up and I told him to lay down and don't get up and don't let yourself throw up (didn't want him to throw up the steroid). Luckily he fell back to sleep and woke up 2 hours later completely cured! No fever, headache, nausea. He went about the rest of his day like nothing happened! Oh, I was also instructed to start a Motrin protocol immediately after the IVIG: Motrin every 4-6 hours for 72 hours. Not sure why, maybe to stop the inflammation and increase in pandas behaviors that follow IVIG? Anyway, just wanted to share... Stephanie

Update, my son woke this morning (at about 36 hours after IVIG) with a splitting headache and a fever and nausea. Lots of crying. So I started him on a Medrol Pack (methylprednisolone) which tapers over 6 days. Within 2 hours he was completely back to himself. Does anyone else's doc use this approach for the side effects? I may start a new thread on this. Stephanie

Peglem, I hear stories like yours a lot on the internet and I just go back to my thought that you/they were simply with the wrong doc, or maybe you were in it at the wrong time (what years were you pursuing this?). I don't know how sensitive you are to all this so I will tread lightly here, but in my experience I have witnessed nothing but success. Here is a little more of my story: First, my oldest is a borderline kid, not in the category of what you describe your daughter to be. However, my youngest was definitely headed for the classic autism with little/no speech, playing in the corner by himself, etc. And then there is my friend's 5 year old who I witnessed make quite a transformation (mild-moderate PDD-NOS, with mild speech delay, hypotonia, etc.). With all of them there was a remarkable improvement. I started out with Andrew Levinson, MD in Miami who I credit for pulling my oldest out of auditory processing disorder and a mild-moderate stuttering problem. I also give him credit for turning around my 2 year old overnight (he was 14 months at the time). He did tons of labs on both kids and I have to tell you their protocol (outside of pandas, of course) is dramatically different as their labs were quite different. The reason I left his practice is b/c he did not: 1. detect pandas in either of my children, 2. know how to treat pandas when I detected it myself, and 3. he completely missed my youngest son's digestive disorder/inability to absorb nutrients, and 4. he does not have a child with developmental issues and I did not feel that he really "got it", ya know? Even with all that said, the man had some serious strengths and a good track record (he speaks at many of the DAN conferences and has patients from around the world). I ended up switching to Scott Smith with the Bradstreet group in Melbourne. They have much experience with PANDAS (scott has two pandas boys himself), each practitioner in the practice has one or two autistic children of their own, and many of their staff have kids with autism. I watched my friend's son (who also sees Scott) turn around dramatically so I knew that they had to know what they were doing. They did more lab work for each of my boys and found some holes in each of their protocols. And I would like to add here that my friend's son has a very different protocol than each of my kids as well. This approach is very much not cookie cutter and I do not get the idea at all that they are following trends with our kids. I get the feeling that you were doing this when the DAN protocol was not quite as advanced as it is now. Yes, I have heard that in the past it was all about chelation (no one has pushed chelation on any of our kids) and mercury poisoning, and the GFCF diet, etc. I think that the protocol has just advanced so dramatically in the past few years. In Scott's words, they recover 50% of the kids who start the protocol before age 5. I also want to add that I would never be able to treat pandas without Scott's help, even if I ever decide to deviate and go to Dr. K for the higher dose IVIG. Many of the autistic kids have a very hard time tolerating antibiotics because it causes yeast/bacteria in their guts that causes other behavioral issues. This could not be any truer than with my boys. With my oldest son, each time we start a new antibiotic he becomes etremely violent/aggressive and we know it is due to yeast/bacteria b/c of some lab work that was done. When Scott treats the yeast (Diflucan, high dose probiotics) and bacteria (vancomycin, high dose probiotics) it goes away and he has a better time tolerating the low dose zithro. Without this back-up support, antibiotics would not be an option for him. And then there is my 2 year old, each time he takes an antibiotic he gets a rash/eczema, bloated belly/gas, and starts waking up and giggling. These are all signs of yeast. When I give him Diflucan it all goes away. Anyway, overall my guess is that your DAN doctor was quite inexperienced, especially since he did not understand your daughters "behaviors". I would never be able to go back to a practitioner who does not have autism at home b/c there is no way they can get it or understand the desperation that we parents feel when we call up and need an antibiotic or diflucan STAT! And not to mention, Scott knows everything there is to possibly know about PANDAS, he is on the medical advisory board with Dr. B for the new website, pandasresourcenetwork.com, he knows Dr. K's protocol, he rubs elbows with Sue Swedo frequently, he knows Lauren Johnson. He is just really on the ball with PANDAS and autism. Anyway, I will stop being a pain, it's just that I hate that there are so many parents out there who have had bad experiences and it is so different from my experience with DAN. I just have to think it is the practitioners... Sincerely, Stephanie Weeks

BTW, I'm not sure where you stand on vaccines, but please do your research. If your boys are not that bad, maybe you can nip pandas in the bud. My 5 year old went into a terrible exacerbation when I had his 4 year polio vaccine. I didn't even do the other 2 shots that were scheduled. I was spacing my kids shots out at that point. We are STILL in that exacerbation 14 months later, hence the start of IVIG. Maybe if I had not subjected him to that last shot, things wouldn't have progressed to this. Honestly, I think before that shot he had PANDAS, but after he now has PITAND, which means he reacts to EVERYTHING! Like the doctor said, that shot put his immune system into complete turmoil. Just a thought, since your youngest is 3 and you still have some vaccines ahead of you. Stephanie

First, have you tried any supplements to help enhance their immune systems? We see a DAN doctor and my 5 year old's immune system is much better now (he used to get sinus, chest, ear infections with every cold, he used to have asthma, allergies). He still has PANDAS, though. My 2 year old is better, too, but we have not done as much with the DAN protocol with him yet, so I expect to see even further improvements in him too. Also, I wanted to say that my 5 year old had his first IVIG yesterday. It took 6 months for my husband and I to come around to this decision. Now that it is over with, I am wondering what I was so worried about (although, I guess the hard part could be ahead of me b/c I have not seen the side effects quite yet). It was really no big deal and I am glad I did it. However, it did take some very hard times with 2 pandas boys to push me to do it. I literally hit a brick wall and I decided that I couldnt' take much more... Best of luck with your decision! Stephanie

Sounds like your son is older than mine, but my 5 year old also told me one night after a very violent rage, "I just want to be a normal boy". I almost died! Also, one night he was laying in bed and told me that maybe he would be better off in heaven b/c he always gets sick on earth. It's so awful for a 5 year old to have these thoughts and I can't imagine having an older child who could actually ACT on a thought like that! Hang in there. I think in my IVIG post you said that he is doing better? Stephanie

Hi Peglem, After reading your post I was wondering if you have ever gone down the road of DAN with Allie? I don't really know your history, except that she has autism and pandas, so I am sorry if this has been discussed already. I don't mean to be a nosy mom, but there is so much that can be done for kids with autism beyond treating their pandas. I have both of my kids with a DAN doctor (Scott Smith, PA who is with the Bradstreet group in Melbourne, FL). The DAN approach is what lead us to the dx of pandas in both of my boys. Without it I would still be spinning my wheels with two very wild boys on my hands (2 and 5 yo). Anyway, I would say we started losing my youngest by the age of 4 months and by 12 months the pediatrician and I were really scared. I got him into the DAN protocol immediately ( and DC'd vaccines of course) and he turned around very rapidly (something to be said for early intervention here). One year later he has NO signs of autism but is still speech delayed and has pandas, but is doing ok on antibiotics. As for my 5 yo, he was always a borderline kid with signs of autism. I think PANDAS is what pushes him on and off the spectrum. We have yet to get control of his pandas, but we just started IVIG, so I am hopeful. He used to have quite an auditory processing problem with stuttering and that is 100% gone due to Methyl B12 shots that I give him every 1-3 nights. So, we still have a ways to go with my kids, but we have seen very steady gains with this protocol. Anyway, when I was at our DAN office yesterday for my son's first IVIG tx, I asked Scott (who also has two pandas/autistic boys, one of which is fully recovered from autism)if they had many older kids/adults in the practice and he said they have quite a few. He told me that the most astounding day of his life was when he treated a 32 year old man with "secretin" and as soon as the first treatment was done he looked at his mom and said "thanks, mom". He said those were his very first words ever and they were spoken as clear as day! I'm sure you have heard/considered this many times in your journey, but couldn't help putting in my 2 cents! Stephanie

Our doctor puts some benedryl into the IV when a kid is really losing it. We did not need it, but it gave me some relief knowing that they could do something. Maybe you should pack some liquid benedryl to help her calm down if she becomes anxious. Also, I was in full panic mode a couple days ago trying ot figure out how I was going to get my 5 year old to his first IVIG treatment which was 2 hours away from our house. I was imagining the worst, him jumping out of the car, going nuts trying to pull out the IV line, etc. I had to go by myself b/c my husband is out of town for 5 months. To my surprise the day went much more smoothly than I had anticipated. I went to Target the day before and bought him some new videos, games,, toys, etc. The only rough patch was getting the IV in. He went nuts, as expected, and it took 4 of us to hold him down. It was very emotional for me. But after that it was a breeze. Best of luck! Stephanie

Well, it took 4 people to hold my son down for the IV insertion, but after that it went smoothly (we had the mobile backpack which was nice). So far there have been an increase in tics and some separation anxiety, but overall so far so good. No vomitting, headache, ect. We are about 30 hours post-dose right now. Does anyone have any feedback regarding the dose my son received? 1 gr/kilo over one day (4 hours) Thanks, Stephanie

I just have a few questions and could use some encouragement!! My husband is out of town for 5 months so I am doing this myself with my 5 year old tomorrow (2 year old has PANDAS as well, hasn't needed IVIG yet). I have never been so scared! I was wondering what everyone's opinion is on the dosage of 1 gram per kilo given in one day? I haven't done much research regarding dosage. We are having this done at Dr. Bradstreet's office (Scott Smith, PA). Also, I know I am asking everyone to predict the future here, but is there any correlation between age and how long it takes for IVIG to work? My son is young but he has had PANDAS since he was 20 months old and it has become rather severe in the past year (we have just come to this diagnosis in the past 6 months). I mean, sneezing girl got results in 2 days but she only had pandas for a few months. I am guessing that our results may take some time? In the meantime my son is receiving Tenex and ibuprofen as needed, anything else I can give if things really get bad? We have a special situation in that he has become intolerant of antibiotics b/c he keeps getting very bad yeast/bacteria which is causing some serious rage and aggression, worse than pandas. So he can only really tolerate a prophylactic dose of antibiotics which really cuts short our tx options. Anyway, he has some aggression right now b/c of yeast/bacteria, so I am pretty scared of what IVIG is going to throw into the mix for the next few weeks. Not to mention my 2 year old has been fighting staph for 4 months! I really have my hands full!! Anyway, any info/encouragement/advice would be great. By the time I read this we will have already been done with the treatment... Sincerely, Stephanie

we are getting our first IVIG tomorrow and we will be doing a prophylactic dose of zithromax, unless he shows any signs of a flare, then we will go up in dose for a few days. We have to go low b/c my son gets bad bacteria/yeast problems with high-dose antibiotics, despite probiotics, diflucan, etc. Which is why we have had to go to IVIG in the first place! Stephanie

I agree with the yeast, but also bacteria could cause bad behavior. When the antibiotics kill the good bacteria, yeast and bad bacteria take it's place. In our case we got both after high dose antibiotics. We had lab work done, so I know this for sure. Also, when we did vancomycin and diflucan to kill yeast/bacteria, things improved. You need to have a doc who can help u tell the difference, who knows how to test for it and who knows how to treat it. Here is our doc: www.icdrc.org Stephanie Weeks