monarchcat

Reading the thread about omega 3 recommendations made me want to pass along a site that I have really come to like a lot. I do a lot of online ordering (The UPS guy is also known as "my boyfriend" LOL). I try to keep our products as natural as possible (SLS free, paraben free, etc) and those can be harder to find so I order almost everything from a few different places. One site that I currently LOVE is iherb.com. The prices are really good and shipping costs are low (sometimes free shipping). What I can't get there I find at drugstore.com, which has decent prices but not as low as iherb. Another site, vitacost, was recommended to me, but they are terrible... super low prices, but horrible service, delays in shipping, packaging, etc. iherb will bubble wrap individual items, and there are a bunch of free samples you can choose on the site as well to be included with your order. I just thought I'd pass that info along since many of us use lots of vitamins/supplements in our families. They also have other things as well... soap, shampoos, etc. That sounded like a total spam post for iherb, but I promise it's not! LOL!

This was recommended by our nutritionist and my son likes it: http://www.iherb.com/Barlean-s-Omega-Swirl...54-g/13411?at=0 He takes 3 tsp a day which gives him a little over a gram of omega 3s (combined dha and epa). I think for therapeutic doses one gram per day is really the minimum you want.

Wow, GREAT job!! What a great idea, and a great site. Nice work!

Well, our case is not exactly what you are looking for, but I think it still demonstrates that CamK score and level of symptoms are not necessarily correlated. I had my ds(8) tested in August, when I suspected PANDAS. At the time I deliberated doing the test because I didn't think he was in an exacerbation, although there were some tics and some minor behavior/mood issues. His score was 193, which is at the top of the PANDAS range and lower end of the SC range (3 out of 4 anti-neuronal anitbodies were high as well). So there WERE symptoms, but nothing that would indicate to me that he would have such a high score. Even in an exacerbation his symptoms are much more mild than others on this board. I believe it has to do with the integrity of the blood brain barrier. The antibodies might be circulating in the blood but not reach the basal ganglia if the BBB is intact. There are probably other factors, as well, that they just don't know yet! On the flip side, we had him re-tested after a 30 day course of steroids and 2 months of antibiotics. His score at that time was 136, but his tics were worse than ever and we were seeing flare-ups in mood/irritability, but he was sick around that time... so the BBB could have been breached allowing the antibodies to do more damage. At least that's how I understand it.... Oh, also it seems as though PANDAS kids who present more with tics have a higher CamK, which would make sense because the higher you go, you get into the SC range, which is primarily a movement disorder. I think PANDAS kids with more OCD plot more toward the middle, unless I am mistaken. So, again, not necessarily an indication of symptom severity at all.

My son developed an itchy, acne-like (tiny whiteheads) rash on his chest and belly in his fourth week of a 30 day steroid treatment (he was on abx, too) Dr. said it was either viral or folliculitis. Dr. told us to wash with antibacterial soap for a few days and it did go away. I had read that there is a type of folliculitis that is more common during antibiotics and steroids. At the time, I believe I read that it was more common on the face, but can't remember for sure.

Right, abx have not had an effect on the tics. No improvement in tics on steroids, and first vocal started a month after finishing steroids. Basic history in a nut shell: Behavioral changes starting after 5th birthday: anger, anxiety, irritability. Tics started at age 6 with eye blink (but more gradual, not sudden-onset). Tics would wax and wane and change over the next year-sometimes tic-free. Did not have strep that we knew about. About a year ago (age 7) he started very sudden, severe, head/neck thrust tic after being tic-free for months. Diagnosed with strep at the same time. A few months after that he had strep again and developed separation anxiety and irrational/obsessive fears. This waned over about 2 weeks following abs for strep. ASO Titers were low (<20) 5 weeks after strep. CamK in August before any treatment was 193 (3 out of 4 anti-neuronal antibody levels above normal), CamK following a month of steroids was 136, and anti-neuronal antibodies in high-normal range.

I would say they started getting worse before the pred started, but definitely continued to get worse during and after the pred. It seems as though it's definitely possible that there is another underlying cause for the tics. He did show some IgG food sensitivities, so maybe those are now causing problems (though I don't think they were always the main cause since he would be tic-free in the past on the same diet). I will definitely check out the TS board for some more info. Thanks!

DS has been on a month of Augmentin (regular Augmentin for 3 weeks, and now Augmentin XR for a week), prior to that he was on Azithromycin for several months and did a 30 day course of steroids. He presents with mostly tics, mood issues, irritability, some ocd-tendencies (nothing major). Through this whole process we have seen improvements in mood, behavior, irritability, irrationality, etc. It's been somewhat saw-toothed, but the overall trend has been good. EXCEPT, the tics are worse than ever, including his first-ever vocal tic (sort of a soft snorting). He used to have the tics come and go, usually one at a time, and there would be periods (weeks to months) where he would be tic-free. He now has multiple tics that are not waning. Has anybody who has a child with tics seen this kind of reaction? I want to believe the abs are working on the PANDAS as his mood/behavior is much improved (and his CAM K II score was down to 136 (from 193) after the pred), but the tics are relentless. What could be going on? If I look at the timeline, the tics have been getting worse ever since we started treating for PANDAS in the early fall. Could the antibiotics cause this, even as it's helping the other symptoms?

Supposedly there is a strain(s) in the northeast that are resistant to azith. In our own experience (we are in MA) we started on azith and did not see the improvement we hoped for and have switched to Augmentin (regular aug for the last three weeks and as of yesterday Augmentin XR). We *think* we are seeing much more progress on the Augmentin. It could be, however, that we just didn't do a high enough dose of the azith. We did 250mg/day and that simply might not have been enough. There are some who have said that they didn't see real improvement until taking 500mg/day of azith. For now, though, I think we are happy with the Augmentin just in case we are dealing with an azith-resistant strain.

Interesting to note, as well, that Augmentin XR should be with food, but not high-fat food as that can decrease the absorption of the clav., which as we know is much less in the XR form.

Well, we have two numbers but they aren't exactly baseline and exacerbation. The first was NOT in a real exacerbation, but there were mood issues and moderate ticcing. His score was 193. The second was right at the end of a 30 day course of prednisone (and after 2 months of azithromycin) and that was 136. Shortly thereafter he was very symptomatic again, so I'm not sure how much the actual number corresponds with severity of symptoms. At 193 he was a much milder case than some present on here. But, I believe the higher numbers (193 is at the high end of the PANDAS range and low end of SC range) sometimes correlate with movement issues (tics) and he does present with many tics.

Hmm... I may have spoken too soon! I checked our insurance (stupid of me not to check in the beginning and just take the ped's word that ins wouldn't cover XR) and it seems that it will be covered at a rate of $41/month or $100/3 months (mail-away). Sounds like a bargain deal to me! My ped just wrote a script for 3 months worth of XR with 3 refills on it. *happy dance* Now I feel like an idiot for not checking into it originally.

I would say DS(8) is chronic. Behavior turned right after 5th birthday, but nothing that would indicate a medical problem at the time. Tics started at age 6. First confirmed strep infection at age 7 (explosive onset of tics with that infection after being tic-free for several months). I would say that over the years he's waxed and waned but never really gotten back to baseline except for a few brief times. We didn't realize it was PANDAS until last year and didn't begin treatment w/ abx until last Aug/september. He has done azith 250mg/day (for about 2 months) with some improvement then regressed, 30 days of prednisone after which we thought we saw some brief improvement in behavior/mood but then he regressed, and now are about 3 weeks in to a course of augmentin 2000mg/day. I think we are seeing more gradual, sustained improvement now. At least we hope so. There is definitely no "quick fix" for him, though, but my hope is that "slow and steady wins the race."

I'm still trying to figure out the whole generic augmentin vs. XR thing. I am not comfortable with ds being on 2000mg/day of augementin, thus getting 500mg of clav. I would like to go to the XR, but I understand there is a snowball's chance in heck of getting it covered by insurance (and it's really expensive). So my question is, for those using it, or have used it in the past, was it covered? Did you pay out of pocket? How much was it? My pharmacist said at his dose it would be $300/month. I looked online and came up with $250, but still too expensive really. Not sure how we would swing that.

Luckily we don't deal with irrational fears on a a regular basis, but the one incident was last year following a strep infection. He suddenly had an intense fear of "the big crunch", which is the opposite of the big bang. The theory is that when the universe ends it will contract in on itself again. So he was petrified of the universe contracting in and time moving backward and dead people coming alive again, getting out of their coffins and moving backward through their lives. He clung to me and cried for days. Luckily it was only bad for a few days (and really, not even "bad" relative to others experiences here), then it seemed to wane and he was ok again.

I had a consultation with Kelly Dorfman (nutritionist) a few months ago and she recommended I have an IgG food antibody test done. We did a test from metametrix lab whereby I pricked DS's finger and filled in four circles with blood drops. That was sent back and they then test for 30 foods. His results came back showing a "mild +1 and +2" reaction to corn, wheat, tuna and turkey; a "moderate +3 and +4" reaction to pork; and a "severe +5" reaction to egg (whole), milk and peanut He has never shown any overt allergies or reactions to foods before but I wouldn't be surprised if there were underlying issues feeding the tics, etc. Since starting antibiotics a few months ago we have gained ground with behavior and mood (sawtooth, but improvement nonetheless) but the tics are worse than ever. Has anyone had these tests done? What did you do with the results? I don't know how to pull him off eggs and milk. He only eats pancakes and pizza! As for pork, he LOVES bacon and we have been eating more of it in the last month or so because he begs me to make it every weekend. He's soooo picky and he's been through so much that I like to make him happy when I can.... We never used to even have it in the house except for special breakfasts a couple times a year. He likes peanuts and peanut butter, but could easily do without it so that one is less of a problem. I have a followup with Kelly in a couple weeks, but am just interested in hearing about others' experiences with this kind of test....

I stopped by CVS to ask about the clav. ratio in regular augmentin vs. XR and didn't get any real answers. The pharmacist is a twit. He said the only concern with the level of clav would be eventual resistance and maybe an increased risk of diarrhea and that I would not find anything written about a safe upper limit doseage of clav. He looked it up and said that it would cost $300/month for the XR (which would almost certainly not be covered by insurance). My feeling is that if there IS an unsafe dose of clav in the regular augmentin then insurance would have to cover the XR, but of course that would be in a perfect world. Which this is not. LOL

My son (8, around 95lbs) is on 1000mg of augmentin twice a day (so 2000mg/day total). He takes two 500mg tablets in the morning and again at night. Our ped's office said that most likely insurance wouldn't cover the XR version so that is why they prescribed the regular version. I think we are seeing results (it's been 2-3 weeks now) but he is starting to get some intestinal trouble. I am thinking that when this Rx runs out I will ask for XR and just pay out of pocket if insurance won't pay for it. I also wonder about the amox-clav ratio in the regular since I've seen that mentioned here. I think I will go back and re-read that to be sure his current dose is safe. Has anyone had trouble with insurance covering the XR?

It does not make my son's tics go away, but it may relieve a small amount of the frequency and intensity. It does (usually, but not always) have a positive impact on his irritability and mood.

Dr. Fuhlbrigge is a rheumatologist. I know there are a couple of people here who have liked him and he's treated their PANDAS kids. He lists PANDAS as one of his specialties on the children's hospital web site. I *think* I remember reading something that he doesn't usually like the idea of prophylactic antibiotics, but I can't be sure. I had a phone consultation with Dr. Latimer originally, but like others here, I can't get in touch with her now. I need a local doctor that can understand this and treat it. I thought about making the drive to see Dr. Trifiletti, but wanted to try Boston first since that's closest. I'll look for the article that mentioned the resistant strains of strep. I know others have mentioned it here, as well, so maybe someone else will chime in. I had such high hopes for the azith, and perhaps it was just that the dose was too low. We just started the augmentin so we'll try that for a month and then maybe go back to the azith at a higher dose if needed, I guess. --> QUOTE(Amy B @ Dec 18 2009, 01:52 AM) 49192[/snapback] Is Dr.fulbrigge a neurologist at Childrens ? I was thinking about trying to make an appointment with a new doctor. I just don't want to go the route of a neurologist again. We had been seeing one at CHildrens. He was not good. I am curious to know the name of the neurologist Beth Maloney had seen at Childrens that was not helpful. I f I recall she did not name him in the book. We live in Mass also. My Ds is 7 and things are getting worse again and not better. Mood swings and explosiveness as well as motor and some facial tics. I am going to ask for augmentin from the ped. tomorrow. Can I ask where the information from Swedo on strains in the north east might be found. I just want to have all the answers for the ped. She is not a firm believer of Pandas. And when I bring Ds in he just doesn't look too bad. He presents well in the office but to live with it so crazy as you all know too well.

I know.. I am so conflicted about this. He absolutely has PANDAS, I think I have no question about that. His first CamK score put him in the range of the SC kids and he certainly fits the other criteria as well. However, the steroids did nothing to reduce the tics, and now, 6 weeks after stopping the steroids we have his first ever vocal. This concerns me greatly. I have seen differences in behavior, mood, etc with the antibiotics, but the tics seem to be more constant and worse than ever since we started treating for PANDAS. I also think I see chorea in amongst the tics as well, though, which I don't believe would be there with TS? IF there is any chance of Tourette Syndrome (and not saying there is in your child's case, just commenting.....) then steroids can dramatically increase tics. I know the steroid burst is a really beneficial treatment in PANDAS so please, before anyone misunderstands what I am saying again, I am NOT suggesting it shouldnt be used for PANDAS kids.... I would just be remiss if I didnt keep reminding anyone who may have a child who also has TS, that steroids can dramatically trigger tics

We did a one month course of steroids prescribed by Dr. Latimer. By the second week my son was incredibly short tempered and cranky, etc. There was a different feel to it, though, which made me think it was from the steroids and not PANDAS. He also ate like a truck driver the whole month. About a week after ending the steroids we started seeing a positive response... happy, calm, friendly, sweet, etc. That lasted a couple weeks and then we started back with the ups and downs and PANDAS symptoms again. I'm not exactly sorry that we did the steroids, but I don't know think they have any long term effect. However, his CamK score was down to 132 right after the steroids ended (from 193 before any treatment in August) and his antineuronal antibody levels came down, too. His tics never went away, though, and are now worse than ever, including his first-ever vocal tic. I would imagine his CamK score is back up now, based on behaviors.

I had a phone consult with Kelly Dorfman and she also recommended 2000 I.U.s a day of D3 for ds (8) and adults as well. DS can swallow pills but I bought this for my 3 year old daughter (giving her about 1200 IUs/day) http://www.iherb.com/Carlson-Labs-Baby-Ddr...1-ml/13932?at=0 400 ius in a single drop. No artificial flavors/colors, etc.

I feel your pain! My son presents with tics and mood issues. I was just saying the other day that as much as you don't want your child to be sick with ANYTHING, at least with other illnesses you can see more the ways in which they are sick. My son has an illness that basically just turns him into a cranky little jerk (LOL.. said with love, of course). It's so hard not to completely lose my cool with him much of the time. How do you NOT discipline a kid who is incredibly fresh and mouthy and rude? Even when you know that when he's not all "PANDASy" he is an absolute sweetheart? When you are in that moment, it is almost too much to handle. The irrationality and the constant arguing are so exhausting. My son HATES to wear a coat, hat and gloves to school. Much of the time I'll let him wear a sweatshirt if the temp isn't too cold, but sometimes I have to force the issue (like today, when it was 5 degrees and super windy). He thinks that he looks ridiculous and "so stupid" in a coat, hat and gloves. This is New England in the winter. You look pretty darn silly if you AREN'T wearing those things, but he just can't see that. It has to be some form of OCD for him. So, in answer to your question, I have no idea how to handle the behaviors constructively, but if you find out, let me know! LOL

He's about 95 lbs