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faith

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  1. I am Ellen's Son. I made additions to my PANDAS website

    in PANS / PANDAS (Lyme included)

    Posted

    Ellen's kid... ^_^

    I am quite impressed with what you've set up here. my son is almost 11, altho he doesn't really know the word PANDAS just yet, but he knows he has the symptoms of OCD, and he is working on that with a therapist right now. I really was thinking it would be great if he could correspond with other kids who have ocd, so he knows he is not the only one, but I'm not sure if he would be comfortable right now. Will you have any type discussion on that site for kids to talk to each other, just curious? He is still a little private about his issues, and so I would like to feel him out if he'd like to participate in something like that. If you have any suggestions for me on how to bring this up with him, I sure could use it! thanks so much.... great job!

     

    sincerely,

    Faith

  2. cessation of symptoms when ill

    in PANS / PANDAS (Lyme included)

    Posted

    We are new to the road to PANDAS and not 100% sure that my son has PANDAS but our experience with fevers and tics subsiding has been that if my son gets any kind of a fever, the tics totally subside. Our neurologist said that it is because when my son is sick and not eating, his brain is having the same reaction as with the ketogenic diet which helps with tics or seizures. I'm not sure if I buy that explanation. As soon as the fever drops, and regular diet resumes, the tics come back in full force. Could it be diet or the virus he's fighting? I don't think I'm smart enough to figure that one out. Although my "mother's instinct" tells me it has more to do with the fever and the virus than it does with the diet. I go back to my son's first ever fever at 15 months when it caused a febrile seizure. I think that's when the seed was planted. We noticed the tics at age 2 1/2 after another very high fever.

     

    i recall people mentioning they observed a cessation of symptoms while their child was ill some time ago. if you have observed this, could you tell me about it? i'm thinking it was mainly with tics, but that may be incorrect.

     

    I often wonder what exactly is going on when my son is sick (and to clarify, I am talking fever/virus, not a cold or sore throat or general malaise).... and yes, we've wondered if it could be that the child is not eating, and therefore, his food triggers are not present, but I am inclined to feel its not as simple as that, because it happens too suddenly...(i.e. not feeling well, fever sets in, child kind of collapses in bed, lethargic, etc.)..don't know, but I wouldn't think not having certain foods for a day would cease symptoms of tics, altho it may not be one particular food group, but something with the digestive system, .... really don't know, but something to think about.

     

    but what I really wanted to put here was that recently on another thread, (titeled, "So what could be going on here?") .. (.which is a pretty good read for anyone who is interested, its a discussion on how viral (things other than strep) may play a role here)......

     

    here is an excerpt from that post where I mention that I asked the doc about this (cessation of tics during fever/virus)....not sure if I totally understand it or even believe, it... :P , but this was what he said... I should have talked more about it and clarified it, but we were kind of there for something else and in the middle of taking some repeat blood tests, so you know how it goes.......

     

    .So yesterday, his fever subsided, altho he still felt some hurting when he swallowed. By evening he was feeling better altho still somewhat tired and droopy, we spent some time returning items after the doctor, so that wiped him out (and me!).....oh yea, and the doctor told me he made a mental note that the vocal was quiet. I told him this was usual for him when he's ill, but then they return. I asked what he thought and his reply was 'because his nerve endings are not being stimulated".......i really didn't get that, but just said, 'oh'.....we could figure out that later.

     

    I can't say that really speaks to me, I don't really quite get it, but that's what he said.. ^_^ ..... Could it be just as simple as they are too weak to do much of anything, and expend any energy to eat, tic, etc?

  3. cessation of symptoms when ill

    in PANS / PANDAS (Lyme included)

    Posted

    My son usually gets a virus once or twice a year, lethargic, fever, maybe some vomiting......I pretty much always noticed his tics seem to cease, but only during this 24 hour bug, his vocal will be quiet, but eventually they start again when he's better. we have discussed this a bit on the ts board alot, many of us note tics seem to subside. (but then there are others who feel their kids get worse). I am not really talking "PANDA" symptoms, just noting on tics. (of course if they're just lying in bed feeling weak, any other symptoms are not going to be noted since the opportunity isn't really there.). .

  7. elevated manganese?

    in Tourette Syndrome and Tics

    Posted

    thank you Cheri, all those manganese rich, and oh what a surprise, he basically eats none of them,... :wacko: (he's the underweight guy, remember?)

     

    trq, wht is bilrubin indicative of? does your dd show any focus/attention problems?

     

    Now the doc didn't get back to me today yet, so I couldn't clarify anything. I am not sure I understood correctly about the liver toxicity. don't know if he said it showed hi liver enzymes or that it could due to the hi manganese. I guess I'm not clear on if these are one issue or two different. I will clarify this and let you know.

     

     

    hi all, just wanted to get back to this subject and update as I said I would,....

     

    it looks like the liver function (AST) was one point above the range, so the doctor was not concerned. I also showed these results to our DAN doc and he said it was nothing.....'garbage',,....ha,ha,.... :lol:

    So basically, the liver stuff is okay. sorry, I did mention I wasn't quite sure what the doc was referrring to on the phone.

     

    Re the manganese:

    we had the manganese level repeated, as the doc wanted to make sure it was not any lab error. the second one came back also high, but the lab claimed the doc did it wrong and didn't put it in a certain kind of tube, so we did it yet again. this last time, the lab never got to it and the blood wasn't fit to test. So instead of pricking him again, we were referred to a neurologist. The neurologist didn't think it was crazy high, but high nevertheless. We had an MRI to rule out anything, and all was normal. Apparently I think they wanted to see if there was evidence of manganese deposts, but it was all normal.

     

    In the meantime, our DAN doc did some other bloodtests for lyme and some immuno workups, and included the manganese in it. This test came back in the normal range. All other tests were normal as well..........

     

    thank you for your attention.......... :) ............ :P

  9. Update on Nicholas

    in Tourette Syndrome and Tics

    Posted

    abbe,

    Can I just ask if you think your son has ever had the mycoplasma p.? did he ever have any pneumo as a child?

     

    I have recently had the bloodwork looking for the mycoplasma and it was negative. Our DAN doc has stated thesame that antibiotics cannot get at intracellular level, I asked.

     

     

    Faith

  14. looks like i am leaving the club...

    in PANS / PANDAS (Lyme included)

    Posted

    quote]laurenjohnsonsmom[quote

    Maybe she's just overworked and overwhelmed and us losing focus and good judgement. Unfortunatley it's the children who suffer...she (dr. Latimer) is going through some rough personal issues NOT that i'm making excuses.

     

     

    :huh: ...Are you sure you're talking about Dr. L. here? ... :) ..not sure its cool to state something like that. Isn't your child a patient of hers? I am pretty sure Dr. L. is VERY dedicated to helping these children.......that's something we should all stay focused on.

  15. 4 weeks post T & A surgery

    in PANS / PANDAS (Lyme included)

    Posted

    thanks Joanne,

    we are scheduled for T&A next week, basically for the same reasons as you, my son has the large tonsils with breathing apnea. we don't seem to get positive strep cultures either. we do have tics tho.

     

    may I ask if your child is light in weight? we are kind of hoping getting rid of the largish tonsils may help him eat, sleep and thrive better, he is underweight for his age.

     

    thanks

    Faith

  16. looks like i am leaving the club...

    in PANS / PANDAS (Lyme included)

    Posted

    QUOTE(ajcire @ Feb 4 2010, 07:13 AM)

    When you talk about lyme and the antibiotics and symptoms getting worse.... do you mean for a long time or even just a few days? When my ds was put on azith this last time when he didn't really have many symptoms going on he had several days that I think he started to show them... but the dr. said that it was not unusual for that to happen for a few days.. it shouldn't have lasted more than that but a few days didn't concern him. It did get better but I would say it was almost a week that I was questioning what was going on. It wasn't awful..... and I wasn't even positive if I was right that it worse.

     

     

    doesn't say anything about what the 'reason' is tho., that's just anecdotal. they don't know what or why it seemed to get worse for a few days, not everyone has that experience.. I have had this same reaction with the azith. and I have stopped it tho. (remember my son is one with no evidence of recent strep or high titers).....so I have to wonder if it IS because of the reasons CharlotteMOM is stating........i

  17. Noise sensitivity

    in PANS / PANDAS (Lyme included)

    Posted

    My husband often covers his ears when I am next to him speaking...I used to think is was because I was too loud]

     

    :huh: ...... because I get this alot too, dare I admit it. When I'm trying to get my point across about my son and what he did (or didn't do), I start to go up in octave, and my husband likes to put his hand out sort of indicating for me to lower my octave, you know, like a maestro does.......he did that the other day when I was cooking and I said "I got a KNIFE in my hand you know!" ........ :)

  18. Noise sensitivity

    in PANS / PANDAS (Lyme included)

    Posted

    , I will have to say peglam that mens voices, deep voices do bother him as well

     

    Lotafaith :wacko:

    That reminded me that I could not sing to my daughters for years. They could not stand the "noise" and I'm not THAT bad of a singer :lol: Still to this day my dd6 will often tell me to stop if I try to sing.

     

    Susan

     

     

    well I AM a bad singer, don't know if this PANDAS related, but my son gets very irritated and shows us and tells us to be quiet when me or my husband attempt to hum or sing. And I distinctly recall when I would sing Rock-a-by-baby to him when he was a baby, he would pout...... :)

  19. my immuno compromised son

    in PANS / PANDAS (Lyme included)

    Posted

    Hi Michael,

    I can ditto my son not really getting sick much and when he does it passes quickly, and he also seems to cease ticcing for the short duration of fever/virus, think we've discussed before. As far as immuno, we just had some immuno testing done with our immunologist/DAN doc and it looks like there are no deficiencies. I don't know if he did all the stuff you did, I hve to have someone interpret, but the doc said everything was normal, no deficiencies, subclass 4 was actually designated as 'high'.... :wacko:

     

    what was your question again?....... :)

     

    glad little guy is home. why are you getting tonsils out? we too, for apnea in two weeks.

     

    -Faith

  21. phone call with Neurologist in PA this morning

    in Tourette Syndrome and Tics

    Posted

    Fixit,

    I totally relate to what you are going thru at the moment. you may know a little of my path here, but my son is going on 11, and yes, I think I can say this past year has been probably the 'worst' of times, as we have vocal sounds that can be the prominent tic at times. we've never done meds either, but I am taking things one day at a time and setting up my ducks just in case I decide its time.

     

    I can say that we've heard the same as the others, that often, the tics start to decline in late adolescence. I know, yay, but for us that feels a long time away. but good to know it is certainly possible and that we are not hearing that this is often a permanent thing, no?

     

    maybe what I can say to make you feel better is what you quoted about the kids tht seem to fare well, social, no other prominent issues, close to family, I think that is definitely correct. I worry everyday when my son walks thru the door after school and feel scared to death that this will be the day he tells me something not so good happened at school. but he walks in seemingly happy, "hi mom", and its just another day, praise the Lord. he is pretty social, and altho I think he has other issues, they seem to go under the radar with the other kids, for these days, everybody's got something. he's a typical boy, fun loving, cute, pain in the AZZ! :blink:

     

    I've subjected him to alot of bloodwork and doctors visits lately, and we have had to start ocd therapy as well. but he's at the age where he is understanding that he has these issues, he doesn't like it, and I see times where the cracks start to show, but he bounces back. he is at an age where I want him to give him ways to cope with this and also know what the deal is and tht it may not be this way forever. a tender age for sure. Other kids have other problems for alot of other reasons, and they don't have tics.

     

    don't know if I'm helping here, but basically, I guess what I'm saying is that things are not great here, but they are not outrageously bad either. Things have never been as bad as I once feared. If you have and are getting thru this particular time, chances are things will never be worse than they are right now. that's what I try to look at, saying to myself, well, we've gotten thru these past years, and we'll get thru the rest, and if its never as bad as it is right now, than that can only be a good thing. I want it to be better, for his sake, I don't want him to endure any loss of self esteem and lose hope for himself. he feels the challenges, but he generally a happy fun loving kid, has friends, has a family who loves him, does relatively well enough in school, he's a good looking boy, .... he'll be okay, whatever we have to do. Its probably hardest for us as parents, but we'll do it. You will do it. You can and you will. You're doing all the right things. Try to look at the positives and enjoy those things, your son is way more than his tics.................and each time I tell someone else that, I remind myself of the same.

     

    blessings,

    Faith

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