nola
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Posts posted by nola
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Hi everyone,
Thank you so much for the replies and encouraging messages. I definitely need encouragement right now because our son's tics are increasing yet again. He's rolling his eyes so much that he's making himself dizzy! It's so scary. He's also making this squeaking noise (sounds almost like a duck) and gasping (like he's hyperventilating). All scary. So, I tried to get a new referral to Dr. Herbert Schrier (head of psychiatry)at Children's Hospital in Oakland. It was once again turned down because it's under mental health. Why is that? Anyway, has anyone heard of him?
I really appreciated all the doctor suggestions. I think we'll try Dr. Steven Harris in Redwood City. I'm a little afraid to find out how much this will cost but we'll do our best to get through. It's so frustrating and stressful that all of this is out-of-pocket.
Are most of you doing long-term antibiotics? Or small bursts? Which is better? What are the side-effects of long-term use?
Lastly, (I don't know if there's an answer but I just want to ask) what is the prognosis for kids with PANDAS? I read that many kids get better in their teens. Is this true? Will it ever get better?
Thank you again, everyone!
Nola
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Hello,
I wrote a post a few weeks ago about my 8yo son. I appreciate all of the replies that I received and I think I now need to explore PANDAS. He was diagnosed with TS in October 2010. His vocal tics were the worst I've ever seen them. I was so scared for him. Although I barely know anything about PANDAS, it was always at the back of my mind. Now that I'm ready to take on this new challenge, I would love some advice on what I should do first. Our ped referred us to a psychiatrist who specializes in PANDAS. Unfortunately, our referral was refused. Since it looks like we'll have to pay out-of-pocket, I'd love some recommendations on PANDAS doctors in the Bay Area. We live in Oakland, Ca.
My question is...if you looked back on your road to help your child, what do you wish you had done first? I've read a few things about antibiotics. This sounds like the first step. I'm reading several opinions on whether a child should be on low doses for a long period of time or high for a shorter period. I'd love to hear any thoughts on that? My child is allergic to amoxocillin. Will this impact any future remedies. Also, are there any other tests we should explore to get a stronger confirmation on whether or not my son has PANDAS. So far, all we've got is a blood test showing his titer levels or ASO levels are high (not sure if I wrote that correctly).
Is their a natural approach to helping my child besides antibiotics? What if we don't do anything? Will it get worse? What is the prognosis for kids with PANDAS?
Sorry again for all my questions. My anxiety level always goes up when I'm writing these posts and all my fears start pouring out. I really appreciate any help.
Thank you,
Nola
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Thank you so much for the replies. In truth, I've been scared to read the posts. I thought I was starting to get a handle on the TS diagnosis and now I'm not sure what I'm dealing with. I don't know where to begin. As confusing as TS was to figure out, I think PANDAS has me stumped. We were referred to a psychiatrist who specializes in PANDAS but our referral was denied. What do I do now?
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Hi,
Just wrote a new post about our experience with the Kirkman multi so I won't get into it right now. I just wanted to know if anyone would like our Kirkman (flavored) multivitamin. The company accidentally mailed the flavored rather than the non-flavored brand. My son hated it so we used it only twice. Anyway, it's just sitting in the cupboard and I'm happy to gift it to someone who might actually use it.
Best,
Nola
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The ASO and Anti Dnase just mean that your son has made antibodies to toxins that are excreted by strepA. Has he had a positive rapid or culture for strep recently? Some kids are completely asymptomatic w/ strep, so you may not have known when he had it. If your supplements have improved your son's health or condition then they certainly are not worthless. Many people on this board treat PANDAS with supplements and/or prescription meds.
PANDAS is an auto-immune disorder, triggered by strep. There is not a diagnostic test for PANDAS. The diagnosis is usually made when a temporal association is established between strep infections and symptoms (OCD/tics, et al.), and the symptoms improve with the use of abx and anti-inflamatories.
There are, however, other things and other infections that can cause tics. Just my opinion, but I believe TS is just a neurological manifestation of an underlying condition- be it infection, injury, or other environmental triggers. If you can identify the underlying cause, (maybe PANDAS), it can help you treat more effectively.
There is some very good info on the "helpful Threads" thread pinned at the top of the forum. Might I suggest, for starters:
http://www.latitudes.org/forums/index.php?showtopic=3756&st=0#entry29305
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Hi,
My 8 year old son was diagnosed with Tourette's syndrome last October. Since then, we've gone through a rollercoaster of trials and tribulations. I just posted something on the TS forum and thought I'd copy it here. I'd love the advice from all of the PANDAS' experts.
Here's the post:
Hi everyone,
Now that school has started it's been difficult for me to visit the site. Of course, I seem to be pulled toward it when my son's tics start escalating. In the summer, with the help of the many informative and supportive souls on this site (thank you!), I decided to try a new multi. We started using the new Kirkman multi. I thought I'd write about my observations. But, please stay tuned...I have another important question regarding PANDAS. Please bare with me. Here goes...
My 8 year old son's tics have been getting progressively worse. By the beginning of this summer, my son was doing head turns, eye rolls, lip-popping and smacking (with spit), throat clearing, and intense blinking. I'm pretty sure there were more tics that I have forgotten. In November, we stopped homeopathy because we thought his tics got worse. They were actually intensely scary at the time. We were also doing cranial therapy, which we've stopped during the last few months. In mid-July, his tics were very bad. We started acupuncture and Kirkman supplements at around the same time. We continued to use Natural Calm at night. So, to summarize, we now only use Kirkman, Natural Calm and occasional acupuncture. Oh, this week he is also getting the HERBST appliance. Ugh.
Within two weeks of taking the multi, his tics seemed to be getting better. His lip popping was less noticeable. He just had some pretty bad blinking. By the end of summer, his tics seemed to be only noticeable to us. Our friends barely noticed a thing and commented on how he seemed to improve. He did, however, have some intense separation axiety. He would cry when I would go out at night with friends or would worry every time I left the house. All in all, I felt like for about two months, I could start breathing again. Could it be a coincidence that the new multi helped reduce his tics?
I wanted to wait to post anything until school started so I could see if stress would bring on more tics. It's been about 3 weeks of school. This weekend, his tics seem a little worse. I'm hearing more lip smacking, seeing some head turns, he still does eye rolls. He's getting a bit annoyed with the whole thing.
One question I have is what do I do next? Should I be supplementing with something else? I noticed a post from Chris mentioning GS (not sure what that is). Is that something I should give him, too? What are my next steps?
Okay, here's the big question (or concern). The pediatrician just called and said that my son's blood work tested positive for antibodies and elevated anti-stretolycine O (please forgive the spelling) She said something about the antibody for Anti-DNASE B. I'm sure I'm butchering all the spellings. What is all this? Does this mean he has PANDAS? If so, are all of the things I've been doing worthless?? If he has PANDAS, would anything I do even help him? What's the difference between TS and PANDAS? Is PANDAS more treatable? With antibiotics?
I really apologize for all of the questions. This just threw me for a loop. I don't know what to do now.
I appreciate any help and advice I can get. Thank you.
Nola
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Hi everyone,
Now that school has started it's been difficult for me to visit the site. Of course, I seem to be pulled toward it when my son's tics start escalating. In the summer, with the help of the many informative and supportive souls on this site (thank you!), I decided to try a new multi. We started using the new Kirkman multi. I thought I'd write about my observations. But, please stay tuned...I have another important question regarding PANDAS. Please bare with me. Here goes...
My 8 year old son's tics have been getting progressively worse. By the beginning of this summer, my son was doing head turns, eye rolls, lip-popping and smacking (with spit), throat clearing, and intense blinking. I'm pretty sure there were more tics that I have forgotten. In November, we stopped homeopathy because we thought his tics got worse. They were actually intensely scary at the time. We were also doing cranial therapy, which we've stopped during the last few months. In mid-July, his tics were very bad. We started acupuncture and Kirkman supplements at around the same time. We continued to use Natural Calm at night. So, to summarize, we now only use Kirkman, Natural Calm and occasional acupuncture. Oh, this week he is also getting the HERBST appliance. Ugh.
Within two weeks of taking the multi, his tics seemed to be getting better. His lip popping was less noticeable. He just had some pretty bad blinking. By the end of summer, his tics seemed to be only noticeable to us. Our friends barely noticed a thing and commented on how he seemed to improve. He did, however, have some intense separation axiety. He would cry when I would go out at night with friends or would worry every time I left the house. All in all, I felt like for about two months, I could start breathing again. Could it be a coincidence that the new multi helped reduce his tics?
I wanted to wait to post anything until school started so I could see if stress would bring on more tics. It's been about 3 weeks of school. This weekend, his tics seem a little worse. I'm hearing more lip smacking, seeing some head turns, he still does eye rolls. He's getting a bit annoyed with the whole thing.
One question I have is what do I do next? Should I be supplementing with something else? I noticed a post from Chris mentioning GS (not sure what that is). Is that something I should give him, too? What are my next steps?
Okay, here's the big question (or concern). The pediatrician just called and said that my son's blood work tested positive for antibodies and elevated anti-stretolycine O (please forgive the spelling) She said something about the antibody for Anti-DNASE B. I'm sure I'm butchering all the spellings. What is all this? Does this mean he has PANDAS? If so, are all of the things I've been doing worthless?? If he has PANDAS, would anything I do even help him? What's the difference between TS and PANDAS? Is PANDAS more treatable? With antibiotics?
I really apologize for all of the questions. This just threw me for a loop. I don't know what to do now.
I should probably start posting on the PANDAS site but it's hard to leave my support system here on the TS forum.
What do I do now??
Thanks,
Nola
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Hello,
My 8 year old has had tics since 3 and has been diagnosed with TS. We have a 6 year old daughter. What are the chances that she will have TS?? I feel like I am constantly staring at her. Any repetitive movement makes me fear TS. It looks like she is doing a neck thing. It's freaking me out!!! What is the percentage that she could have it too? So worried.
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Thanks for your recommendations. I just read your post about your daughter. I'm so sorry it's been difficult. I also wish I could take the illness for my son. Your daughter is lucky to have a parent who never gives up.
Thinking of you.
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Thanks for your recommendations. I just read your post about your daughter. I'm so sorry it's been difficult. I also wish I could take the illness for my son. Your daughter is lucky to have a parent who never gives up.
Thinking of you.
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Hi everyone,
I finally received my copy of Sheila Rogers' book and here I am at midnight motivated to get started. I think I really need professional help.
I think I'd like to start with an environmental allergist and a naturopath. Does anyone live in the Bay Area? I live in Oakland, California and would love any recommendations in the area or surrounding. Are any of these things covered by insurance? I'm sure they aren't. Thanks everyone!
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Thanks everyone!
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So happy to hear that you are seeing positive results. I'm thinking of starting this vitamin as well for my son. I checked on Amazon and there were a few different types: Kirkman Spectrum Complete II Powder-Trial Size, Spectrum-Complete Powder 454gm for $190, and Spectrum-Complete Powder-Hypo 454gm for $190. Mythree, can you tell me exactly which one you get? I'm just worried about getting the wrong one. =? Does it specifically say for children because I didn't notice that on the site? Where do you all order it from? Thanks so much.
Nola
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Thanks again, Chemar. I feel like I've been on the site constantly during the last few days. I always seem to make my way back here when it gets bad.
We did try L-carnitine a while back but our homeopath urged us to stop using it. Something about it being a diet supplement for wrestlers?? Not sure if it impacted my 45 pound 8 year old. Maybe I should try it again. How much would you recommend?
I searched "tourettes meds and side effects" last night while ds sat in his epsom salt bath. It freaked me out!
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Just wondering...which meds are better for vocal tics? My son has minor physical tics. He mostly has intense throat clearings, grunting, and lip popping sounds.
Still going taking the natural route. Just purchased Sheila Roger's book and hope to get more insights.
Thanks everyone.
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Hhmmm, just looked up the ingredients for Progressive and it states that a non-medicinal ingredient is lemon. I really want to try this but now I'm not sure. What do you all think? Should I start with Kirkman? Does it contain any citrus ingredients? For those who use this brand, can you tell me where to find it?
Megan, can't seem to find Progressive on Amazon. Any ideas?
Thanks so much everyone. It really helps to vent on this forum.
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Hi Megan,
I've been off the forum for awhile but I'm finding more time for it now that we're on summer vacation. Your story has really encouraged and motivated me to get back on track. I was trying just about everything (homeopathy, cranial therapy, vits, supplements, and gf and dairy free diet). I got scared because I saw a huge increase and stopped the homeopathy. We are sticking with cranial therapy twice a month and started acupuncture. Not sure about the acupuncture but I'd thought I'd give it a try. My son had a blood test done by WestLab Corp (has anyone heard of them) and he is apparently sensitive to all his favorite foods (eggs, dairy, glute/wheat, citrus, soy, etc etc). It sounds like your multi might be a good place to start for us. We tried Animal Parade which seemed free of all those things but didn't see results.
I feel that this has been our worst year yet. He can't even get through a meal and ends up spitting out his food from such intense tics (throat clearing, lip popping sounds with some spitting). It doesn't seem to wax and wane at all. It's just constantly there without rest. Is this a common experience?? Why is it that he no longer gets breaks? He just seems to keep adding more tics.
Ugh, I'm ordering the Progressive multi right now. I'm in the U.S. I hope to find them on Amazon.
Wishing all of you my best. Megan, your story is giving me hope.
Nola
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Hi,
Just thought I'd include my experience. This sounds like my son. His tics are the most intense when he eats. It's hard to get through a meal. He has actually spat food out of his mouth because of the "bad" feeling. Brushing his teeth is also difficult because he feels like there is something in his throat. He does try to "get it out" and it just looks like he is going to throw up. I guess it's a tic??
Nola
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Hi everyone,
Thank you so much for your advice and suggestions. My son had a pretty good 2 weeks. Before that, his tics were quite severe. His tics seem to be increasing again this week. So...I started the fish oil this evening. I used only 1/2 teaspoon. I was told to eventually increase to 1 teaspoon.
Please bare with me as I ask questions about the fish oil. =) For those whose kids are sensitive to fish oil, when did you see increased tics or a reaction? If I see increased tics, should I stop immediately or keep at it for awhile? How long should I give it before I give up and try something else (like flax oil)? Once the kids were off the fish oil, did the tics get better?
For those whose kids had success on fish oil, when did you start seeing positive effects?
My son had such a good week last week. I'm wondering if I should have given him the fish oil last week so I could get a clearer picture on it's effects. I just wanted him to have a rest from it all. His tics are currently increasing and I'm worried I won't be able to figure out if it's the fish oil or just the nature of the tics. Ugh! This is all such a big puzzle.
Nola
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Hi Ladyd,
I think we met on my other post.
These threads were very helpful to read. I hope that you continue to see improvements. It's heartening to read positive stories. Do y'all happen to follow a diet or food program? I'm so new to this and I don't know what to look out for. I thought I'd stop giving my son milk but didn't stop cheeses or yogurts. He was also on goat's milk. What would be another alternative to milk? I worry about the diet because my son is a skinny 45 pound 8 year old. He needs lots of calories. How do I do that while sticking to the strict diet? Do I also cut out all sugars? Geez, how do I do that?
Ladyd, I'd like to agree that our kids are quite courageous. My son goes to school ticcing as loudly as ever but still comes home a happy guy. If only I could follow in his example.
Nola
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Thanks you for all your advice and encouragement. I feels so disheartened tonight. My son's tics were so bad last week. Then, it looked like he was getting better on Sunday and Monday. This morning, it was so bad. This evening was horrible. I just don't know what happened. I can't figure out the triggers. Maybe I'm not being totally diligent on the diet. He had milk with cereal today. Could it be that? His throat clearning and grunting is so bad that his throat hurts. He says it's like he tastes blood. I don't know what to do.
Should I wait until he gets better to try the fish oil? "FixIt", you mentioned that the Nordic brand was a good one. I'll give it a try. I'm so afraid to do so though. I feel that this is the worst he's ever been. Can it get worse? "Mythree" how much L-carnitine do you suggest? We were only doing one capsule in the morning. I'm not sure how much I can give. Our new homeopath said I shouldn't use it because it's a dietary supplement. I stopped using our multi because I thought maybe it wasn't a good one. It's called Animal Parade. Is that a good one? Any suggestions? We also stopped probiotics because I read on the forum that it could trigger tics, as well. Still doing Natural Calm and Epson baths. Stopped doing vaccination clearing and changed homeopaths. Our new homeopath gave us Zinc Iodocum and Nettles (for antihistamin to mix with honey). I really don't know what I'm doing.
I'm afraid that my son isn't getting the right vitamins and nutrients. I'll try to stop all dairy but how does he get his calcium? Can anyone recommend a good cookbook or food program that I can follow? Patty, thank you for your suggestion about NAET. I really don't know what that is. I'll do some research.
Is it normal for the tics to be sooo severe? My son hasn't had a break since August. He used to have weeks of tics and then a period of calm. Why is it so bad all of the sudden?
My son has been such a trooper. Many of his friends are asking him questions. He mentioned this evening that some are getting a bit annoyed. I wish I could shelter him.
Thank you everyone.
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Hi Ladyd,
I just had this same thought today! Why are my son's tics lasting so long? Why are they so severe all of the sudden? Why isn't he getting more of a break in between? Gosh, I'm not really sure what to say but I wanted you to know that you're not alone. It makes me feel good that I'm not alone. Hoping that this does getter better as they get older. Ugh! My son's only 8!
Nola
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Hi,
I've always thought that we should stick to natural methods to tackle my son's tics but now I'm having my doubts. His tics are so severe. I'd love to hear from those who have tried medication. What were the side effects? Were the side effects permanent? Did they help? Did it change your child? Sorry for all of the questions. I just don't know what the right path is right now.
Thanks,
Nola
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Hello everyone,
I've been trying to stay away from the internet for awhile. I've been driving myself a bit bonkers. My son's tics are so severe right now. As I type this, I am listening to him grunt and clear his throat constantly. It happens from the minute he wakes until he falls asleep. Sometimes he does it in his sleep. It is so bad that his voice is hoarse and he can't get a sentence out without the tics interrupting him at least 2-3 times. I'm feeling so helpless. I think we are ready to try the fish oil. Our homeopath recommended the NOrdic Naturals DHA jr. (strawberry flavor). I'm hoping this is a good one. Was it BigAl that mentioned Vit D could possibly cause increased tics? Hoping this works. We are starting out with 1/2 teaspoons a day and slowly increasing to 1 teaspoon. So far, we are continuing with Natural Calm and L-carnitine. Any other suggestions?
I need something to work. Kids are starting to ask him questions. I can hear his tics through 2 closed doors and downstairs. Is it supposed to be this bad? I need advice on how I can support him and prepare him to deal with questions and strange looks. I am worried that his schoolmates will begin complaining that they can't concentrate on work. I am worried that his teacher will complain that he can't teach. What do I do? My son doesn't want me to talk to his class. He thinks it's embarrassing. How do you deal with this? Will it always be this bad? Does it get better with age?
I always appreciate everyone's feedback.
Trying to keep myself afloat,
Nola
I think I'd like to start with an environmental allergist and a naturopath. Does anyone live in the Bay Area? I live in Oakland, California and would love any recommendations in the area or surrounding. Are any of these things covered by insurance? I'm sure they aren't.
First Steps and Bay Area Doc referral
in PANS / PANDAS (Lyme included)
Posted
Sorry. Another question...Why do many of you go to LLMDs? Dr. Harris is an LLMD. Why not just go to a PANDAS doctor? Or are there so few of them out there?
Thanks.