faith
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Posts posted by faith
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Yes, very good question ajcire......
Does it seem that those with the elevated mycoplasma might be more of a mixed bag of symptoms and more toward the severe, at least in the way of behavior. I'm thinking that if it was strep PLUS the mycoplasma, then maybe that's two punches and so makes it worse?
memon, interesting what you said, .. momaine (Angela) mentioned on another thread that her child doesn't hve the high strep titers tho. I was trying to see if those with mycoplasma didn't neccesarily have strep titers or even much strep as a connection.
Anyone else have the mycoplasma and could weigh in symptoms' severity?
Faith
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Hi all,
I am thinking ahead for my DD as she goes off to college in the fall and I decided to save $$$ by making my own foam hand soap for her to take. I'm trying to keep her from running to the drug store spending her $.
I got to thinking this may help some of you all with OCD children who wash their hands a lot. I don't know if you go through a lot of soap.
Recipe is:
1 cup distiled water
3 Tbs liquid castile soap
1 tsp glycerin
drops of essential oil (peppermint was nice)
You need a foam pump to fill, so I would suggest to buy one from the store use it up and then refill with this recipe.
Good luck,
CP
You make your own soap? that is SOOOO wierd....................
lol, j/k........ love you CP!!!........ -
inbox full......
...psychotherapy available.........inquire within.............
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I've read that having your tonsils out can improve pandas! Will it help them to sleep!
After twenty years of not routinely performing tonsillectomies, doctors began to find that children with chronically infected tonsils had some recurring problems. The tonsils' impact on breathing was especially interesting. Some studies looked at how children who snored were often classed as having behavioral problems in school or considered ADHD. When tonsils were removed, these children generally slept better and many of them behaved better in school and were clearly not ADHD.
These studies suggested that by not performing tonsillectomies, doctors were actually doing a disservice to some children, who truly would benefit from the procedure. Tonsillectomies have become a more acceptable procedure, especially for those children with chronically enlarged tonsils. In most cases, removal of tonsils benefit the health of children instead of making them more susceptible to illness.
This suggests that some children really don’t need tonsils, and that they are perhaps a “leftover” evolutionary enhancement that is not practical to modern day. Children with tonsillectomies generally have fewer instead of more illnesses. Chronic tonsil infection (tonsillitis) might actually weaken the body, making children predisposed to getting more illnesses.
For other people with tonsils, they may not pose any problem. If tonsils don’t get infected frequently, they may perhaps provide a little immunity boost in fighting off illnesses. This is actually not proven, since many other areas of the body also create lymphocytes to fight infection. From years of studying tonsils, most doctors conclude that they may be beneficial to some and detrimental to others. Therefore, we may not all need tonsils.
MOM2PANDAS who stole your tonsils- send them here
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oh sorry Angela, I meant the strep titers...... you meant THEY were normal range?
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elizabeth, welcom,
Chemar has given you good advice, and it seems your son's symtoms have been mild till now? I think the first thing I would try is a dairy free diet for a couple of weeks. just my feeling that milk and dairy creates mucious which could contribute to the vocals. I actually read that in the book "Is This Your Child" by Doris Rapp, its a book about allergies and food sensitivities being found to be the cause of some kids' neuro symtoms, such as ADHD (sort of on the idea of the Feingold Diet).... It mentioned that a child had a 'mmm' sound and when they took out dairy, it went away. that always stuck with me and I can tell you that when I tried it several years back, it did help, altho over time, we did have vocal problems again despite trying to be dairy free. So what I'm saying is that its worth a try. I'd be interested to see if it had a beneficial effect. One never really knows what could help.
Also, could I ask if your son had any recent shots? flu shot of any kind? any vaccines?
Thanks
Faith
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I guess I could try using alot of rice with some good toppings. its not really bread tht he eats, he won't eat sandwhiches, and lately can't stand the site of white bread as there is a kid at his lunchtable who squashes it into a ball and it grosses him out! but I don't think the gluten free works unless you go all the way. not sure if I could do it.
hates eggplant?
Welsh people! btw, I think fresh pineapple juice is supposed to be anti-inflammatory, I recall actually juicing that a few years back for tht reason for myself, as I was actually looking at inflammation as a possible reason for having difficulty conceiving for a while. hey, I guess it worked!
Faith
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kcdc,
may I ask the same question of you? is strep a major component of your childs PANDAS? and was the mycoplasma level in addition to that, or just a possible explanation of your child's symtpoms?
momaine, you mean normal range in titers, right?
thanks
Faith
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I'm glad to see some of this info re anti-inflammatory diet being put out on this side of the board. PANDAS or not, I do think it can be beneficial to look at some of the things in the American diet that can cause or add to our kids neuro problems. Nightshades could be one, i.e. tomatoes, potatoes, eggplant, peppers....And I totally beleive in the dreaded 'corn' as being a major culprit in our diets, we've discussed that lots over the years. I feel like I have had some success on corn free for a time in alleviating certain tics, altho not absolute, however my son is son thin it is just impossible to restrict any foods from him right now. I wish I could, but he looks almost anorexic at this point. I know some have said that going gluten free actually helps people to gain weight over time once their systems adjust, but since carbs are mostly what my son eats, i don't really know how to pull that off, if he lost any weight, it would be bad.
-Faith
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Alex, lol.....
nomez and momaine,
I think you are both looking at and treating the mycoplasma right now, correct? is this what the Biaxin is for? could you refresh me and tell me if your kids are ones who do or don't have strep as definite problem (titers or recurrent positive swab/cultures?).. in other words, is finding the mycoplasma'in addition' to the strep connection? or maybe another peice to the puzzle.... ?
thanks
Faith
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aarrgh,
may I ask how long you think your daughter has been dealing with these symtoms? has it been since childhood or was this sudden at this age? has she had any recent vaccines this past year?
If you live too far to travel, you may be able to make some headway with another type docotr in your area who at least knows about PANDAS like a DAN! doctor or immunologist. If they are in agreement that your daughter is PANDAS, they may be able to continue the abx for you. maybe call around to some DAN docs or even Infectious Disease docs and ask over the phone if they are familiar with PANDAS.
good luck to you,
Faith
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cp,
I'm sure it will be hardest in the beginning, tell him they will be separating the boys from the men...
think "Officer and a Gentlemen".......maybe watch it together soon....
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They treat with abx only when he seems to get or be exposed to strep, not just when symptoms pop up. He has also remained on 'I think' strattera.
edit: ...
just to clarify, it does seem to me that this boy is cured at least in the way that he is leaps and bounds away from what his original symtoms were.
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Hi Hope,
I had to reply because I could have wrote this post, it sounds like we have the same symptoms and because together, we sound like that sitcom "Hope and Faith", lol (yea, I'm the ditzy one..
... ) My son's sounds are something like "ohyesoh" or "ah"........ And I hear you about Church, he came with me a few weeks ago and I felt so bad for making him come, he was so uncomfortable, I can't do that when he's waxing. sometimes it wanes and he can keep control, but its hard when you do hear them.I think what you're trying re the ALCAT, you may find something there, but its trial and error. my guy is skinny too, same age, but weighs much less than yours, so I have had a hard time keeping up with food restrictions and just can't do presently, he is too thin. But try what you can, either take all the sensitivities out and if he does well, you can add one back at a time and see if he has any reaction, or you can slowly remove one group at a time for a couple weeks and see how that goes.
some here have tried the carnitine, however I felt tht when I did a while back, it 'seemed' to increase the vocals. it could hve been my imagination, but I always get nervous when I see that, so I didn't continue. since your son's vocals are not too much, it migh tbe easier go gauge. maybe the others will let you know of their experience.
oh, and could I ask, since you say he's almost 11, has he had the Tdap booster yet that they are supposed to get at this age?
good luck
Faith
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bnnbs, hello....
I don't know too much, but could you clarify,..do you mean your son started having a rough patch since starting the prednisone? maybe it is that? or is the pred over? how do you think he did while on it, what did you observe? I don't have experience with it, but I think things can go either way with that.....how old is your son? and is the 2000 mgs. augmentin or augmentin XR? ..... sorry for all the questions, but this might help some here give you a better idea of what might be going on).....
thanks
Faith
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I am going to say 'no', I don't think so. there has to be a good reason I would think, mainly because it is quite expensive. You could push for one if you think there is good reason, but I don't think it is a matter of routine.
of course, I could be wrong...
but that's my feeling.-Faith
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jewels,
we are pretty much all italian here, however I am pretty sure my father's mother (so my grandmother, whom I've never met) is either from England herself or her parents were. that's all I know. my dad is deceased, so can't answer to wher exactly, but I always remember him saying he was 1/4 english.
Faith
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Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus or Mycoplasma?
PANDASM sounds a little X-rated. Might catch on a little TOO well.
Pediatric Autoimmune Neuropsychiatric Disorders associated with EBV, Mycoplasma, and other Infectious agents but most Commonly Strep
PANDEMICS never will catch on but probably the most descriptive
You are starting to worry me, Dr. T................. ... -
Just another bit of advice, any time your child has any bloodwork or other test, always ask for a copy of the results so you have it in case you need to consult with someone else.
I have a nice file of my son's health records from his ped too......only problem is nobody can read the handwriting.....
Faith
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Dedee,
I was trying to recall your older postings, did your son have IVIG? I can't remember. It's wonderful to hear that your son is doing so well and hopefully recovering from this.
Linda
I don't believe so, Linda. just abx.
Faith
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tracyree,
was the prior usage of azith everyday, or still twice a week? did the amoxy clear the infection? just curious.
I am one who felt our symptom of vocal tics were increased with azith (250 mg. per day everyday) so I did not continue, as it was pretty obvious. However, that said, I am not completely sure if it was that it was a reaction or one of those 'gets worse before it gets better things"? .... it can't be that it just didn't help, because the symptoms, altho still present, went down after discontinuing the azith and not being on anything. we don't really have rages as a symptom, I go more by tics and ocd. I might add, we were not doing this to treat strep specifically.
Faith
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Shannon,
Do you mean IGE or is this IGG, I think IGE are true allergies and the IGG would be sensitivities or intolerance, not traditional real allergic reaction?
I don't have any advice on the allergy treatment or shots, but I think you are right on about considering allergies or sensitivities as an adjunctive way to manage immune overlaod. that is the exact premise of maintain a healthy immune system, and the body's reactions to foods or allergens can definitely weaken the immune system. How it all plays into PANDAS exactly, I don't know, but the 'symptoms' can get better simply because the immune system is not being further taxed or weakened by anything that puts stress on it such as allergens, etc. So I guess I'm saying that I'm glad you have made this connection, because sometimes I feel that the focus on PANDAS is sometimes fought with tunnel vision, and antiboitics are not the only thing that can help the body heal, there are other things that cause stress on the system and figuring out these triggers can help manage symptoms too.
Faith
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Fixit,
As I've mentioned I did not wind up doing the steroid burst, but we were prescribed a 30 day, so my concerns were a little different. Also, this was a few months ago that I was considering this, but in case you haven't searched the board, here is the thread where I pretty much had the same concerns as you, so you can read some of the replies. sorry to confuse you more, but maybe it will help your decision.
http://www.latitudes.org/forums/index.php?...ic=5851&hl=
good luck
Faith
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CP,
your son will do great, and you have my prayers, I just got back from Church....
Will he be able to balance this with schoolwork? wow, I guess that will be alot of studying.....
blessings
Faith
lol, j/k........ 
love you CP!!!........
) My son's sounds are something like "ohyesoh" or "ah"........ And I hear you about Church, he came with me a few weeks ago and I felt so bad for making him come, he was so uncomfortable, I can't do that when he's waxing. sometimes it wanes and he can keep control, but its hard when you do hear them.
webinar
in PANS / PANDAS (Lyme included)
Posted
what a bummer.....
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I mean the webinar, that was kind of depressing.