faith
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your child is one that gets strep alot I'm guessing? or is it still a mystery if he even has strep? (I ask because I am in the second boat, so curious.)
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not clear on your question. Niacin (niacinimide ) comes in no-flush, there are brands like Carlson. Inositol is a seperate b vit. I don't know much about dosing, but I would just give what the bottle recommends, I would think 50 mgs. for a b vit is an average high enough dose. but I would NOT give that much of the type that is not no-flush, because the reaction of the flush can be quite uncomfortable, so go low on regular niacin.
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Caryn..
thanks so much for thinking of me...how you doin girlie?
I admit, I've never gotten this test, I probably should have a long time ago, altho I've supplemented with the b6 and zinc as a trial. what I don't get is how are you supposed to know how much to give, I don't think they give you that rec with the results, do they?
abbe, did your son have any other symptoms besides tics in the past? ocd/attention, etc? all his issues are good now? but you also do topomax, correct?
thanks
Faith
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I could be wrong, but I thought SFmom mentioned Igg 'shots' in her posts. don't know if this is for now or in the future.for her boy? ...... SF?
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Hello Everyone,
I have not posted in a while. I have been so overwhelmed with my son's behavioral problems. He has been out of school since the end of October. He has been on prednisone for over a month and has improved. However, he is still far from baseline. He still has mild chorea, OCD symptoms, rages, concentration problems,etc...
Anyway, we went back for our second appointment with Dr. Latimer today. She reviewed all of his lab results including Cunningham's test and after seeing him again today she believes he has Sydenham's Chorea. However, she did say she felt it was all in the same spectrum. I am just relieved to finally have an official diagnosis...sort of??
The next step is to remove his Tonsils and Adenoids and then IVIG. He will remain on 10mg of prednisone a day for now and Augmentin 850mg twice per day. Dr. Latimer said he would have to take the antibotics until he is an adult.
Has anyone else been diagnosed with SC instead of PANDAS?
michele,
Did the doctor diagnose your child as SC, or do you mean she said he had some chorea movements upon the examination?
could I ask why the next step is T&A? she also recomended IVIG? is that definite or just a recommendation for maybe in the future?
Faith
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I don't think I see anything white on the tonsils, they just look a little bulgy, not humungous, but you can see them, and maybe some tiny reddish veiny thingies?
Vickie, how old is your son again?
my mother has always maintained that she thought my son was too thin and didn't seem to be growing, she nagged me relentlessly about it. I've brought this up numerous times to docs but can't get anyone to take me seriously, they'd rather see a skinny kid than an overweight one, his bloodwork always looks good (and I've gotten them to give him pretty much yearly bloodwork upon my request). really he never gained more than two pounds a year since he's a toddler. now we're not big or tall here, and I was quite skin and bones as a child, so they just feel its genetics I guess. even as I speak here, he is inside with breakfast in front of him and I have to prompt him every 10 minutes to eat, while he engages in everything else. Yesterday he ate cereal for breakfast, half of a knish for lunch and a few bites of homemade hamburger at dinner. I went off how he's going to get sick and not grow and I convinced him to eat another knish. maybe he had a donut in between. but what kind of appetite is that for an almost 11 year old boy? I don't get him. altho there are times when he acts very interested in food, but that's mainly when he's hungry and we go to his favorite restaraunt, the chinese buffet...
also, I could see he was starting to cough the last day or two and now he's all stuffed up and has a cold. this is because he only will wear a hoodie type jacket when outside, so it was bound to happen with this cold weather here. I can see that his tics are definitely vamping up, I'm seeing some head movements along with the vocal too. so if this is related here, don't know.
I think I'm not going to give him any abx until we get to the ENT on Tuesday, this way he can see him as is. if there is any problem, don't want it to get better and the doc will say he's fine. this is a doc mentioned here on the board, so pretty sure he knows PANDAS, but not sure how liberal or conservative he is with the clinical picture.
and by the way, his laugh for some reason is really annoying me, like its changed somehow. anyone ever see this? its like when he laughs, its a full on really loud exaggerated cackle, he's done this sitting right next to me and damm near deafened me...
thanks so much for all your input.
Faith
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he's 10 1/2 and about 52 lbs., a little guy. since he seems otherwise healthy, I wonder if his low weight gain over the years can be considered a symptom?.....
don't know what it's worth for you . . .
between 18 mths and 4 years, my son gained 10 lbs.
had confirmed strep at 22 months.
in his 4th year, overt pandas symptoms and treatment at 4.5 plus had food igg with over 15 reactions so we took him off all dairy, eggs and most grains. during that year, he's gained about 8 lbs.
so that year, he gained almost as much as the previous 3 when most kids are slowing a bit on weight gain at that age.
the kids that i know that i suspect could have pandas, are on the thin/little side. i think it's got to be related.
smartyjones,
thank you, do you mean you went gluten free for him? I know sometimes kids (or adults) can be celiac and when they eliminate grains, they actually wind up growing and thriving better. do you think that is why he gained weight? what do you attribute it too?
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Hi Faith,
We had an ENT consult back in November and just recently had t&a surgery. If he has been off antibiotics and your appointment is Tuesday, I would not start him on anything before you go - you can always start after. That way, if the ENT wants to do his own culture, you won't end up with a possible false negative. I would be sure to ask the doctor (as well as any doctor that is doing a culture), to check for all strains of strep - not just group A. We had doctors that were testing for group A only, which often came back negative. When we asked to culture all strains we have had many positive cultures.
When we went for the ENT consult, the doctor told us that all three kids had signs of prior infection, but only one of our three children had large tonsils. He would not normally have recommended removal, but he agreed to do whatever the neurologist was recommending, which in our case was to do the surgery on all three. When he actually removed the tonsils, he said they were much larger than they appeared on the exam in his office - most of their tonsil tissue was in the back, which he could not see in his office. In fact, they all had very large tonsils.
I am curious about the chronically swollen glands. Is there any bloodwork that can be ordered to try to figure out what is going on?
Debbie
Debbie,
What were considered 'signs of infection'? did you go to the ENT because of the problems your kids seemed to hve or was it just to kind of see what was what and if there was any recommendation looking at it from the PANDAS angle.? I don't see that my son has any problems with his tonsils, no apnea, no snoring, nothing I can see. only thing I might note is that when he talks he sounds like he might have mucous in the throat, (not nasaly like someone with allergies or sinus trouble), altho he says he doesn't.
I will ask about the different streps and I too wonder about bloodwork in case there is something lingering, like a low grade who knows what?
havn't been tested for Epstein Barr, what type of bloodwork is that considered?
thanks.
Faith
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How swollen are his glands and for how long have they been swollen? What abs have you tried so far and for how long?
When I feel them I can't really tell, so I don't really know what is considered swollen. not big or obvious, no pain. Our new ped noted it on the two visits we just recently had a few weeks ago, and my son did have a sore throat, but we did the swab/culture and it was negative. Dr. Trif also noted it during his examination of him. just said his glands are a little swollen. and I'm pretty sure I've heard that a time or two before at our other pediatrician. I get the impression that they may always be like that, so I'm just wondering if I should investigate further being that he's also been noted as having big tonsils, and I am looking for something to go on re PANDAS, and well, I have nothing else, lol.
abx was augmentin for a month at 500 mg. 2 times/day.
azith was 250 mgs. once a day. (I did about 17 days and came to the conclusion that his vocals were worse off while on it and better while off it.)
he's 10 1/2 and about 52 lbs., a little guy.
since he seems otherwise healthy, I wonder if his low weight gain over the years can be considered a symptom?..... -
I've decided to take my son to an ENT (for what reason, I really don't know,
), but basically I guess to see if they have any input about how my son's tonsils may play into all this. (recall we don't have high titers or recurrent strep, always negative cultures). One thing that docs have noted when examining my son in the past is that he has large tonsils? not giant, and they don't seem to give him any problems, but they are on the big side for a little guy like him. Also, another thing I hve noted is that several docs, upon examination, will say "well his glands are a a little swollen".....this has been several times during the years, but that's as far as it went. sometimes I might hve been there because he had sore throat or thought he may have had strep and wanted the tests, but they were always negative, so I guess the docs just figured it was viral. again, it was nothing major and he didn't have any ongoing symptoms of anything we could see, so ...... he seems healthy on the outside.
my question is this. right now we don't have him on any abx, we did try twice, but I didn't see anything remarkable on a month of augmentin, and the switch to azith seemed to make his vocals increase. they were calmer off the azith, but by no means gone. only thing I'm giving right now is olive leaf, (my own experiment wondering about the viral connection).........I'm tempted to start abx again, and I can switch to another, but should I wait till this ENT visit to do so? if I start him on abx this weekend, and the appt. is Tuesday, would having him on abx skew anything as far as the doc being able to tell if anything is suspect with his tonsils, glands, etc.??
not that abx seem to help his tic or other symptoms, but I was tempted to do my own trial of upping the dose, but wonder if I should wait til after this visit.
advice on this? any thoughts re the big tonsils and chronically slightly swollen glands? anybody have this?
thank you
Faith
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........ cute Dad
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Bat-Sheva,
I really hope this helps your daughter, good luck.
blessings,
Faith
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tatoomom
as posted on the other thread, ..... is this the first time on abx? and is it usual or unusual to see a cessation in tics for a couple days or more? what will your doc do if you report that the tics were better when you finish up with the script? will she give more or longerm?
Faith
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tatoomom,
is that unusual for tics to be gone, I mean, that's not usual for you to see no tics for a bit, so you know iit must be the abx? Is this the first time you've tried any abx?
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OY,
.... yea, I don't like deleting my messages, then I forget what I talked about., got some from 2008, lol.........okay, I'll delete the ones from George Clooney...I'm over him anyway........
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UPDATE
We ended up moving our IVIG up by 3 days. Today we are on day 2 of our 2 day dose. One of our blood tests came back and it shows an elevated number. I believe it was the ASO titer. I'm not positive on which test it was because some are sent out. But at least one number is elevated at least for DD. Our ped said the number isn't necc elevated according to published literature, but for DDs trends, it is at least 20 points higher than it should be.
I am wuite happy to know that there is something scientific to why she had such a bad month. It is so helpful to know that we are not just imagining this or are weak parents.
thanks for giving that update. altho, for dummies like me...
, could you clarify what that means?does this mean you had bloodwork to see what was going on or is that routine in between these ivig's?
so if the ASO titer is up somewhat, does that indicate that her behavioral setbacks may have been due to that and that there may hve been exposure? why would that go up if she is in midst of these treatments? did the ped think that was usual?.....sorry, you may not really know, I'm just curious.
Is she doing better now?
Faithh
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Or, the tests, most of which are presumably antibody tests, might be negative if you're getting the infections but your immune system is not competent to fight them properly - doesn't produce or maintain the expected immune responses.Faith,
This is an integrative MD who is not an immunologist but knows a lot more about immunology than most MD's. His wife apparently is also an MD with quite a bit of immunology knowledge. He did quite a work-up, almost felt like an AIDS panel (to me, in terms of lots of things I've heard of), cytomeglavirus, epstein barr, mycoplasm, herpes, pylori, and so on. Given my health situation, he and I were both surprised how they were all negative.
Michael
mati'smom,
would this be evident to the doctor, re the immune system not competent? or something that would have to be deduced, looked into further? if that were the case, wouldn't one have symptoms of these things, something to show for it? could there be those infections present, but not necessarily have symptoms, however vague?
Faith
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Isabel,
what type doc did these tests? was this part of immuno tests? the doctor didn't think the positive to mycoplama antibody was significant?
did you ever think your child DID have walking pneumonia at any time? I think this is where they are sick with flue or bronchitis or somethng, but it is actually pneumonia and you don't know it yet or it goes undiagnosed as pneumonia. sometimes you get or stay sick until it is dxd. I had that as an adult many year back, and so did my husband, but my point is that eventually it was realized that it was pneumo (walking pneumonia), guess that refers to that your walking around with it and don't know it....
interesting on the asymtomatic question above, Vickie...../
thanks
Faith
(are you just about due for the baby?....
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little guy here too,
..... momto2pandas, are you saying that PID could be the case in for this, especially if PANDAS is suscpected? when you say that primary immune deficiencies are common in PANDAS, does that necessarily mean the child gets sick alot? can anyone clarify that? for those that seem to have the immune deficiencis, does that correlate to frequent illness, or not necessarily.
michael,
what kind of doc did these tests?
thanks
Faith
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Hi Faith
nope he doesnt even get colds etc. No other illnesses either. Overall very healthy, and especially now with both his Crohn's and TS so stable.
He used to always have sensitive tummy stuff even bf the Crohn's onset. Had a lot of ear infections as a little one(not on a lot of antibiotics tho) and got ear tubes aged 2 plus adenoids removed then.
Not much other illness tho...he had chicken pox aged 3. no known strep ever.
not sure what you mean by immune "work ups"?
and yes, I did question whether the immune "boosting" supps and omega 6 could have triggered the Crohn's but was told by the GI specialist it was unlikely.
The naturopath believes Crohn's is triggered by a microbe, likely Mycoplasma, and has a theory about this being the case for most autoimmune disorders. Others feel autoimmunity is genetically inherited. Many theories abound
thanks.
by immuno work up, I mean bloodwork to test to see if he had any immune deficiencies.
was he ever tested for mycoplasma? there's a thread on the PANDAS board from a mother whose daugher got symptoms at 15 years old and they found she was positive for mycoplasma (pneumonia?).
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Hi lele,
happy new year to you. so glad to hear that that you had a nice trip and didn't have to worry so much like before. that is interesting that the tics started again when you came home? was it right away? how long later? could it be the change in the type of food you ate in China and here?
let us know how he does.
regards
Faith
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[quote name='Caryn' date='Jan 12 2010, 09:48 AM' post='51616'
Hello everyone,
Really good to hear the good stories. The past year seems like a lifetime for me but Nicholas is doing wonderfully also. He basically is tic free without being super restrictive on diet or video games. He stays away from dairy, beef and oranges . If a flash bulb goes in his eyes or laser light he has his eye tic instantly. The biggest change in him has been the steady addition of b6,zinc and primrose. If pyroulia can cause tics then his having it could have to do with why he is doing so well. I really try and balance what he can have and do with keeping him happy and healthy. I have always eaten healthy in the house and I don't find it a burden. I wish everyone peace in your journey to figure out your triggers.
all the best
abbe
hi abbe,
glad to hear things are going so well. I havn't talked about pyroluria in a long time, but your post reminded me that I never did to that test. where did you do it with? could you direct me? and then how did you know what to supplement with, and what doses? what doses do you use? Only thing I really give my son is a multi, it has some in there, but not high. did you feel his tics were helped by that? what about any other type symtoms like irritability or attention/focus if there was any?
thanks so much
Faith
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Erythromycyn is kind of an old one, I know I used to get that as a kid. And I do recall at one point I noted that it did not seem to help after a time, so I always told the doc not to give me that one anymore. See how it goes and then ask for a stronger one.
), but basically I guess to see if they have any input about how my son's tonsils may play into all this. (recall we don't have high titers or recurrent strep, always negative cultures). 
.... yea, I don't like deleting my messages, then I forget what I talked about., got some from 2008, lol...
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Has anyone seen this?
in PANS / PANDAS (Lyme included)
Posted
this is wierd in that I just came across this post of you describing this hand movement. Recently I've been all over the net looking for a connection of this type movement and if it is a chorea movement.
now my son doesn't do this now, but I was thinking about it recently because he used to d this when he was about 4, very shortly after his first tics were noticed. this seemed to be one of them. hard to describe, but it is as you said, he would do this now and again, and it seemed when he was in an upset mode. I have one memory of him crying and getting upset over something and his hand was clenched into this clawlike fist, like you say, not quite a fist, but not open like claw, sort of inbetween. my mother asked me why he did this. I knew at the time we were starting to see tics, so I tried to brush it off, I didn't like talking about this to her back then.
so I'm wondering too if anyone else has seen this type of hand movement and if it is considered a chorea movement?
thanks
Faith