faith
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how are things going now, michael? has your boy responded to steroids or anything new? any improvements at all?
Faith
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This interests me. I was positive for strep B, but delivered C-section, so not sure if they give antibiotics for that, I assumed they did during delivery. I don't recall why, but I think we've had this discussion before somewhere on the ts side about strep B, don't recall if it was in relation to PANDAS tho.
Faith
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friends,.....
I don't really know exactly the posts that are being talked about here, altho I did see the one by Dr. T. last evening, and at the time it did kind of confuse me. Now that I've read the above, I think I understand better... However, for those that were feeling it was a strange move by the moderators here, I'd like to just point out that I've been on these forums for some years now, and I can absolutely attest to many other posts having been removed due to the soliciting nature of them (or spam, and we've even had some x-rated
), so this isn't the first. We've had posts from some folks offering their services here, and those type posts have always been frowned upon and have been questioned and/or deleted. So while some here may feel that Dr. T. was unfairly deleted, you have to bear in mind that the moderators do not know him personally as some here do, and so their actions are just in keeping with the rules of the forum and are really just for the best interest of the members. Think about it, anyone can pose as a doctor here, and no one would be the wiser. We know who he is, but they do not. So I think we have to be grateful that there is some protection from caring people like Sheila Rogers and Chemar. As I mention, I've been here for some years now and they have been absolutely wonderful. They don't run this forum for profit, and Chemar volunteers her time to look after the forum as well as give valuable input for those seeking help for their children. She is the parent of a child who had similar problems as our kids, and for those who are not familiar with her story, I don't think she would mind if I pointed out that her son, altho an adult now who is doing very well, had very severe TS as a child, and so she is very familiar with the pains and obstacles we face with our own children..... Look at the information that is here at your fingertips on this forum. Its not just about PANDAS, but there are other topics here as well. This is a give and take, I have learned so much by communicating with the members of this forum, as well as being priveleged to come to know a few on a more personal level, and so I hope that the friends here won't abandon it just because of a few posts that came under the gun. We know he means well, and I don't feel that it was anything personal, but I guess sticking to the rules has to go for everyone, not just a few. I don't believe this was in any way a slam against PANDAS or the info we wish to obtain.I believe Chemar has stated that Dr. T.'s input here is still welcome, but he is a member of the forum just as are the rest of us, and if he made a mistake in a posting, I hope that it will just be taken in stride, just the same as if one of us had (and we probably all have at one point or another)....(well, some of us..
) ... Listen, I for one have no problem with difference of opinion, if that's what gets people talking and thinking, then I'm all for it. To this end, I hope we can put aside our 'passion' for PANDAS per se, to the point where it causes a halt in communication, and continue 'talking' and exchanging help, ideas, support, etc. I value this forum and value each and everyone here as a contributor. As was stated, no one here has all the answers (not even the PANDAS doctors) so that's where we all need each other.. some of us have a couple of answers, some of us have the other couple, and some of us are still searching..
..........so please don't abandon each other.thanks for listening.
Sincerely,
Faith
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thanks CP....
he's doing well enough (re tonsilectomy)......
a little soreness in the mornings, but we have the pain med for that, altho I don't like giving him a narcotic. Did you give that to your son after his tonsil removal? (hycet)....? would anyone think coedine/tylenol combo would be bad for tics in the long run?.....yea, those are still there........
......but I'm hopeful that this will help his other issues, re sleeping/breathing and eating better. I can see he is not snoring now while sleeping, and actually think he's breathng thru his nose now, frm what I've seen so far anyway. ..I'd like to compare notes......
Faith
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dut,
just a suggestion....have you had your little one's tonsils looked at? sometimes large tonsils can cause difficulty breathing and apnea at night and that disturbs sleep. he is still a baby, so if he's waking up alot, does he cry or just call you? a baby may have discomfort of waking up alot and not be able to just roll back over and go to sleep. just a thought. we recently had our childs tonsils out as he had large tonsils and we could see that it was causing some heavy breathing at night. I can't say if he woke up alot, but I'm sure he didn't have a complete deep sleep as he was always tired in the morning. but my son is 10, so if their sleep is disturbed, they just go back to sleep. maybe check it out, and monitor his sleep for a few nights.
Faith
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yummy, he's darling! from your photo here, he looks like you from the nose down...
Great to hear that update on him, and so glad you're enjoying him and he is a healthy boy. they sure keep you busy, huh?....... you're doin great mama!
luv,
Faith
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earnestfamily7,
oh dear, I wish I could help in some way. I don't recall exactly if your child is on abx or meds at this time. but is there any way that something else could come into play here, like food allergies or sensitivities. Could you recall what occured in the time right before she had this tantrum? She doesn't behave that way all the time, correct? do you recall the foods she ate that morning or the night before? you never know, she may be reacting to something that puts her in this type mood. Have you ever looked at the book "Is This Your Child" by Doris Rapp? Its about child behavior and how food allergies or sensitivities can cause erratic behavior in children. Its really a good read, you could probably find it at your library. .... I recall your post recently where you say she was hardly eating anything after the tonsilectomy and her behavior was pretty pleasant. maybe take that as a clue and look a little more into diet. have you ever tried the Feingold diet? Pandas or not, there may be other things going on as well. Did you say you started fish oil? If she took it, perhaps it didn't have a good effect? I know when I gave it to my son, he ticced more, and many of us feel that fish oil increases tics, altho we don't know exactly why.
so sorry you had this experience. good luck, I hope things settle down.
blessings
Faith
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I'm sure its okay to take for a week....but I just wanted to relay something our ENT mentioned about advil, motrin, ... we were instructed not to use advil or motrin in the two weeks before my son's tonsilectomy (which we had today), as it thins the blood. so I guess this was for surgery purposes, I guess having something to do with bleeding. And this week, I can give him tylenol, he said, but not advil, for the same reason.
I'm just wondering if this is something to take into consideration for the regular use of advil (ibuprofen)???
Faith
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I just wanted to update here.
my son had the T&A done today......he did pretty well and is home resting now. THe doc did say his adenoids seemed kind of big as well. Even tho we do not really seem to get strep here an this wans't the reason we were doing it, this doctor was aware of my concerns re PANDAS and so I asked if he could look more at the tonsils when they were removed and possibly culture to see if anything was found. He said he would, and did tell me when he came of OR that they were big and he said "when I sliced them open", and then made kind of a face, I didn't exactly know what he meant. i asked if they were all crypty and infected looking and he said no, it didn't have any pus or anything, but he I think took some tissue from the middle and sent it to culture. I think that's what I understood. really this is just out of curiousity, and I know many here are interested in a finding like that, so I'll let you know. He gave us 2 weeks of amoxycillin. he said he didn't want to give augmentin because it causes stomach issues. (I had planned on giving a week of augmentin prior to the surgery and gave him about 3 days worht, and the fourth morning he woke up nauseated and vomiting several times. I am not sure if it was a virus, but I went back and forth wondering if it was the augmentin. he didn't want to eat that day at all and anything he drank, he threw up. so I didn't give him any more of the augmentin. he was better after a day and a half and was okay for surgery today. So I'm fine with the amoxy.
Hopefully, this will help his sleeping and eating issues somewhat, and we talked a little about attention here as well. One thing I can say is that it definitely so far did not do anything for his attitude, as he heard me speaking to my brother on the phone telling him he didn't want to eat anything, and my son screamed at the top of his lungs
"I AM EATING!!".............. I think he was upset because he heard me tell the doctor five minutes before that, that he was fine, and that he didn't want to eat, and that I was starting to hearing some vocals already. he really doesn't like me mentioning that......so, so far as of right now, he is well enough and his vocal tic is still there.
Thanks so much to everyone for the help and advice on this issue.
Faith
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Carolyn
I was just thinking about you, I know your little one will be one soon. How is he doing? And you?
sorry, don't know any gluten free recipies. but Caryn might be along.
Faith
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Dut
you might want to post this on the ts/tics side of the board, I kinow several have tried GABA over there.
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Sorry, I have a dumb question here... are we talking just unplugging the cordless and wirelss stuff, is that enough. If you have wireless computer, is the EMF only a problem when it is in use? do you have to turn the computer completely off? is that enough or is the wireless all around us anyway?
thanks
Faith
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bev,
I don't recall how long your son has had tics, but I am glad that your doctor told you that. just because a child has a tic or two doesn't necessarily mean it will be tourettes. For ts to be considered, the criteria is motor and vocal tic occuring for more than a period of one year without at least three months of being tic free. the tics do not have to occur simultaneously, or constantly, just be present for at least a year.
As far as the changes you've made, and them having a beneficial effect, is wonderful. I don't think it matters wether it is tourettes or a transient tics, for tics are tics, one way or the other. I think it is wise to look into the environmental causes for tics and behavioral problems first, as it can help a great deal as you are seeing now. Look at as many factors as you can, and note what seems to help and what doesn't.
Thanks for posting this and what you have tried. it actually reminds me tht I have fallen way off the wagon, altho I had to because my son is currently underweight for his age. but I think I can tighten up on some things again and may try an overhaul soon, as I can attest tht things were probably more than a bit better when we were on a more regimented diet and supplements. Mly advice, if something is working, stick with it.
Faith
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This is what I read "For young children - to take to school - for his peers to read or have read to them by a teacher."from TSA
He told them that a lot of doctors are studying to find out what causes Tourette Syndrome. They do know already that it always starts at a very young age. It is much more common among boys than girls. It usually doesn't go away as the child gets older, but there is medicine that can help most of the people who have Tourette Syndrome
How can I give this to my little boy to encourage him? I wish it is not true.
lele,
I don't think that is true. the part about it not usually going away as the child gets older, I think tht just means when they are a 'child", but I have heard several doctors tell me it gets better as they get older as in teen years. But I know there is no way to predict the future. I understand what you mean tho. I havn't said much to my son in his younger years, I think you will know when the time is to talk about it. Of course my son knew he had some habits, but we didn't call them tics until recently. you can take it one step at at time, just talking about the individual tic, and explain tht its like a habit, and it will probably go away after a while. when things get where it is bothers him enough to need more explaining, then you can take it from there. baby steps. only you can be the judge of how mature your child is and how much he will understand or relate to. And I absolutely understand about not talking in front of him with the doctors, I always went in to talk first, I didn't want my son to worry that something was wrong with him, and also didn't want the 'power of suggestion' to come into play, like if he wasn't doing a particular tic, but I had to tell the doctor that he did this or that in the past, if he heard me, then he might be reminded of it and do it. He is almost 11 now and he knows now tht he has tics and ocd and we are working to help them get better. Take it one step at a time, you don't have to tell or talk about everything all at once.
Faith
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double.
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What is it that this guy actually says re PANDAS? totaly bunk? or just very strict parameters? is this written somewhere? just curious, I may have read it but don't recall. And who exactly is he?
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mama,
really kind of interesting. does your child have any other issues, or just the behavior?
I actually think I'm going to give this a try,...(lol, I can just see my husband's reaction now.....
...)Faith
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simplygina,
have you found any reaction to the augmentin in the way of stomach or nausea? just wondering as I started this a couple of days ago and my son was naseous this morning and threw up a few times, no fever.
thanks
Faith
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Doug,
if you have these increases with the strep infections, then I would not have any qualms about going ahead with the IVIG. You may some ups and downs of symptoms and stress, but I'm sure it will be alright, I'm sure they have a way to deal with the little ones. But interesting about how the symptoms have remitted to 90% in between the strep. I would go with the doctors recs and not worry too much here. perhaps calling the doctor and expressing your worries will help. Good luck.
Faith
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Okay, I am totaly confused last Thursday and Friday our daughter was so OCD she was insane, one terrible intrusive thought after another, and today she is almost back to normal. We are 2nd guessing ourselves on the IVIG, but were still going through it. I do believe this time it was brought on by stress. The last two were from a fever and infection. I hope we are making the right decision, I hate to put her through so much stress and have it not work. If she doesn't have PANDAS, I have no idea what she has. Dr. K said it couldn't be anything but PANDAS based on her symptoms and a collilation with a infection. Well enough of my gabbing. Take Care, Doug
Doug,
I know how you feel, sometimes when things are going bad, we are up for anything to help our kids. and when things are good, we don't want to mess with it. I can't give any advice here, because I have not had these treatments for my child, so don't think it would be fair for me to advise.
One thing that stands out for me here, tho, and I feel I have to point this out, and I'm not directing this totally at you Doug, but for all of us, ...sometimes these symptoms, wether it be PANDAS, tics, OCD, etc.....I think some, mostly who are new to seeing these type symptoms, may be under the impression that if a child has some symtom,that it is going to be that way forever. That is not always the case, and I've seen this many times, being a frequent poster on the TS board. Symptoms do wax and wane even without intervention, or jcan be helped with natural intervention, could be diet, could be alleviation of stress, whatever......I guess what I want to point out is that if Doug's child had had the IVIG treatment let's say Saturday,and as he reports she is so much better today, then you would have been convinced it was the IVIG that made her better, and everyone here could come to that conclusion. so we cant' always attribute 100% to the intervention, wether it be abx, steroidal, IVIG, .. so good to be optimistic, but realistic as well.
How long has your daughter had ocd issues?
Faith
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Hi Tracey!
wow, really great on the long stretch of time with no tics. I know you are saying you relaxed a bit on supplements and diet? I think when things are going good, we tend to relax on that for obvious reasons, but remember the bucket theory? It is quite possibel that the things you were doing WERE having a good effect, not just for the moment, but had some lasting effects as some things normalized, but after some months of easing up, your boy's immune system may have started to feel the effects. You may have been doing some real good and without the continued momentum, the stomach issues may have contributed to a backslide.
What were you doing with supplements? weren't you the one who had good success eliminating high salicylates? if so, has your son's diet changed in that respect, maybe having more things that you don't realize may be affecting him?
could you remind us what he was on before? If you've forgotten, I think you hve listed it here before, we could search it out or you can and copy it here.
Don't despair over a little backslide, it got better before and it will again.
Regards
Faith
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(((lele)))
how are you feeling? sorry things are not going too well. I know the feeling. but you'll keep looking for ways to minimize this. Have you seen any new doctors or neurologists? what kind of advice to those docs give?
Lele, I forgot, where do you live again?
Faith
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Happy Birthday mom2, and best wishes........thanks for your insight....
Faith
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simplygina,
wow, I find that interesting that your friends have kids with tics/ocd as well. When I look around the water cooler at school, I have noticed a few ticcers myself, altho, it always seems less obvious than my son's, probably because my son's is mainly vocal.
But as far as doctors knowing about strep, I think it is out there, altho it may deptend on where you live. I know here in NY, I have had experience of our ocd therpist inquiring in our initial visit if my son ever gets strep infections, so he was definitely screening for that. My peds also know about it, so as I said, it may just take a little while for it to kind of spread.
Are you trying out antibiotics because of recent strep?
Faith
), so this isn't the first. We've had posts from some folks offering their services here, and those type posts have always been frowned upon and have been questioned and/or deleted. So while some here may feel that Dr. T. was unfairly deleted, you have to bear in mind that the moderators do not know him personally as some here do, and so their actions are just in keeping with the rules of the forum and are really just for the best interest of the members. Think about it, anyone can pose as a doctor here, and no one would be the wiser. We know who he is, but they do not. So I think we have to be grateful that there is some protection from caring people like Sheila Rogers and Chemar. As I mention, I've been here for some years now and they have been absolutely wonderful. They don't run this forum for profit, and Chemar volunteers her time to look after the forum as well as give valuable input for those seeking help for their children. She is the parent of a child who had similar problems as our kids, and for those who are not familiar with her story, I don't think she would mind if I pointed out that her son, altho an adult now who is doing very well, had very severe TS as a child, and so she is very familiar with the pains and obstacles we face with our own children..... Look at the information that is here at your fingertips on this forum. Its not just about PANDAS, but there are other topics here as well. This is a give and take, I have learned so much by communicating with the members of this forum, as well as being priveleged to come to know a few on a more personal level, and so I hope that the friends here won't abandon it just because of a few posts that came under the gun. We know he means well, and I don't feel that it was anything personal, but I guess sticking to the rules has to go for everyone, not just a few. I don't believe this was in any way a slam against PANDAS or the info we wish to obtain.
) ... Listen, I for one have no problem with difference of opinion, if that's what gets people talking and thinking, then I'm all for it. 
..........so please don't abandon each other.
Faith
in Tourette Syndrome and Tics
Posted
cp, don't laugh. but did you notice any change in his voice at all? I am imagining my son's voice is slightly higher? maybe it will be until he heals completely? could be my imagination, but not sure. what say you?
Faith