Dara

Hi Everyone, Yes, it's the phantom member Dara again. Hope everyone is doing well. I just wanted to update everyone on our appointment this past Tuesday, May 10th at the Pfeiffer Outreach Clinic in Annapolis, MD. It was a great experience!!!! My thanks must go out to Claire. Thank you so much for telling me about Pfeiffer. I really feel like it was the right place for us. I only wish I had known about it a year ago when Karl's tics first appeared. The clinic was set up in the same hotel that we stayed overnight in (which was great). Our appointment started promptly at 10:15am. The nurses were so sweet and the doctor (Dr. Allen Lewis) had wonderful bedside manners. In a nutshell, the appointment lasted 2 1/2 hours and consisted of taking blood, hair and urine samples. From these samples, a full bloodwork up will be done, along with a heavy metal test, the IgE RAST, the IGg, assay of creatineine, kryptopyrrole, and some others. The doctor seemed to think that Karl's tics are a result of a mineral metabolism disorder in addition to high yeast and bacteria in the gut and food allergies. This is what our current environmental MD told us. Dr. Lewis changed Karl's supplement program slightly and asked that we stick to the current diet. The test results will be back in 4 to 6 weeks. In the meantime, we have an appointment with a new DAN doctor the Saturday of Memorial Day weekend. I'm interested in what he'll have to say. Karl's tics have been very good during these last two months. Not gone, although, we just noticed a couple of days ago that the humming tic has pretty much gone away. He still has some facial stuff, coughing, sniffing and forward head tilting, but they haven't been severe like back in February and March. Last weekend I noticed Karl shaking his head back and forth when his bike helmet was on. Of course I'm thinking that it's the beginning of a 'head shaking tic'. I've been watching for him to do it again, but havn't seen it since. I'm always on the lookout for new tics. We're praying that the diet, and supplements are working and that maybe his yeast/bacteria is down. As a side note, we're still a NO TV family. I can't believe it, but since the trial we started in February our two boys still don't watch any TV. That's one of the best things we've ever done. Take care all. Dara

Hi Everyone, I've been out of the picture for awhile and have missed corresponding with you all. I'm so inconsisent. I go weeks where I write and read everyday and then weeks where I don't write at all. I do try to read often, but for me time is such an issue. During the day I'm so busy with both of my boys, that I hardly ever have time to get on the computer. I usually save the computer for the evening, but by that time I'm physically and mentally exhausted. Update. Karl's tics have been very managable over the last couple of weeks. As most of you remember, February and March were horrible. The head nodding, coughing, nose scrunching, humming, and lip sucking were at their worst. I was in quite a state to say the least. They seemed to ease up a bit during these last couple of weeks. The head nodding and lip sucking have pretty much gone away (though I do notice them once in a while). The humming is still there, but it doesn't seem as bad as it was (maybe I'm just more used to it now). I've seen some eye rolling once in a while, but all in all we're pretty good. I think god knows I need a break from all of this once in awhile. As all of you have mentioned, I think allergies definately have a direct correlation to Karl's tics. He currently takes sublingual drops for the inhalent allergies, but I wonder how much they help. My husband (also named Karl) has terrible allergies this time of year. We've also been dealing with colds on and off. Karl's mood was so bad yesterday, that I thought for sure he was coming down with something. My younger son Graham (3 1/2) has had a runny nose and a fever on and off since Sunday. Karl seemed to be in a better mood today, so maybe he was just tired and not adjusted to the time change. As I stated in a previous post, we're heading to the Pfeiffer outreach clinic in Annapolis, MD May 10th (thanks to information that Claire sent me) and will be seeing a new DAN doctor on May 28th. Once we've done these final two things, I think I'll feel like we've covered all of our bases. I'll keep everyone posted on these two visits. As for TV. I feel so proud to say that there is still NO TV watching in our house. I don't know how long we've gone without it? The boys still think all of our TV's are broken and they don't even ask for them. I was never was able to determine if the TV was a trigger for Karl's tics. Even so, I don't mind if they watch it at friends houses, it just won't be on in mine. Having no TV has been great for my boys. They play together all the time and now love to help me out in the kitchen. After almost losing it a month ago (my mind that is), I started seeing a psychologist to help with my stress and anxiety. I feel so much better since I've been going (4 weeks). He's given me some great information on depression vs. anxiety and has given me some good tools to help deal with stress. Finally after dealing with our situation for a year, I've come to a conclusion: I have the MOST fantastic son (tics or no tics)! For so many months, I've been worrying, thinking, and watching his every move. I've spent more time looking in the rear view mirror than you can imagine. I've spent time over eating and time starving myself. I've spent time arguing with my husband and being resentful. Looking back over the last couple of months I've felt nothing but fear and despair. I thought at one point, I had a permanant frown on my face. I feel bad for the time I've lost with my son and family, but I know that I was only acting and feeling this way because I was scared and didn't know how to deal with our situation. Today, I feel so much more confident. I'm trying to stop feeling sorry for my son and instead look at all the great things he does and can do. Today, his pre-school class put on a puppet show. I had a lot of anxiety thinking that he was going to be up in front of all the parents and they'd notice his tics. Yes, he did get up in front of all the parents, in fact he had a small part where he read a portion of the script. Low and behold, he did great!!!! Yes he ticced a bit, but he didn't care and neither did I. I was so proud of him. I said to my husband tonight that I feel like we've accomplished so much over the last year and we're still on a journey. Of course I still get that 'sick' feeling when I see a new tic or when one of the old ones come back, but not to the degree that I had. Having all of you to talk to has been the most important part of my journey. Thank-you so much. Hugs to all. Dara

Claire, I don't understand what's wrong with my mailbox???? Karl, my husband is coming back from Florida today, so I'll have him take a look at it. Sorry about that. Anyway, I just received the Health History form from Pfeiffer yesterday. I'm going to fill it out tonight and mail it back tomorrow. As I said, I'm really excited to go. I think you're right about the yeast finally dying off. Considering that Karl's been on Nystatin for almost four months, maybe his flair up was a result of the yeast dying off and maybe now things are leveling off. I've been so much more relaxed during this last week knowing that his tics haven't been as bad. I'll definately ask Pfeiffer about the MT promotion therapy. Thanks a bunch. Dara.

Hi Kim, I'm so sorry I never responded to your post. It's been so hectic around here for the last week and Karl's tics had been terrible for the last five weeks. During this past week, Kar'ls tics have gradually gotten better. Thank-god. As far as the comprehensive stool test and the organic acid profile, I've decided to hold off on both. You asked why was I doing them. During times of insanity and desperation I try to do everything at once even when it doesn't make sense. After dealing with Karl's tics for almost a year, and dealing with many ups and downs I think I've finally seen the light. My new motto is to slow down and take one day at a time. It seems that whenever Karl's tics get really bad, I get that helpless feeling and then I try to implement everything at once. Instead of doing the stool and urine tests (again), we've decided to take Karl to the Pfeiffer Outreach Clinic in Maryland during the second week of May. Claire has told me so many good things about this clinic, we couldn't pass it up. At our visit they're going to perform an array of tests, so for now we'll wait on the Great Plains Lab tests. I'm not one to tell you about the yeast die off period. This yeast thing is still all very new to me. Claire seems to be an expert in it. She's been so helpful to me. I'm really sorry to hear about your 12 year olds head shaking tic. Lord knows we've seen just about every tic imaginable during this last year. Currently Karl has humming, coughing, sniffing and head nodding. Seems drastic but in actuality, it's quite managable right now. Karl has also had a cold/allergies during these last couple of weeks. I'm sure his flair up is directly related to those things plus some other things going on. Love to hear from you. Dara

Claire, I don't think my mailbox is full. I only had 14 messages and I moved 6 of them to another folder. Can you try again??? I'm stumped that it said my mailbox was full???? Dara.

Karen, Wow...what a coincidence that we're both from NJ. Why don't you write to me at my email address, dara.pfeil@comcast.net. Who knows, you might live in my town..ha, ha. Since we've been going through this since last April, I'd be happy to share with you the doctors that we've seen and the things that we've done for our son. We could even have a phone conversation (which would probably be easier) since I don't always have time to write lengthy emails. This forum is so great and bouncing ideas off of other families is the only way to learn. Looking forward to hearing from you. Dara

Hi Kmtatt, My son Karl is also 5 years old and began ticcing last April 2004. It's been quite a journey for us. The folks on this website are fabulous and you will realize that you are not alone. Like your son, my son tested positive to many foods - cane sugar, dairy, eggs and oranges to name a few. He also tested positive to grasses, oak trees and sycamore trees (we live in NJ and we have those two types of trees everywhere). I feel as you do about our doctor. He's very well known, has seen our son twice since November (our last couple of visits were with his partner who doesn't know anything about anything). Unfortunatly our doctor is also always too busy and he doesn't know our son. I can't call him on the phone when Karl's having bad tics and say 'What should I do'. He's an environmental MD but doesn't specifically treat tic conditions. Anyway, our son also tested positive for yeast/fungu and Clostridia species including C. difficlile. Our doctor put him on Nystatin (two weeks on and one week off) and Culturelle. Karl's been on it since November. His tics have been really bad for the last couple of weeks, so it could be as a result of the yeast dying off. Keep in touch. Dara

Hi Susan, My son Karl sweats terribly during the first couple of hours of sleep. He then tends to cool down a bit and his body temperature seems more normal. He's 5 years old. His 3 1/2 year old brother Graham (who does not have tics) doesn't sweat like that. I never correlated it to his disorder. Jennifer - What are phenols found in???? Thanks Dara

Hi Marina, Did you ever think our lives could be such a rollercoaster??? Ha, ha. Tonight I finally think I realize that I have to calm down and not be so hysterical about our situation. But as a mom, you know how hard that is. I just want to 'fix' Karl so bad and find it frustrating that I can't. In talking to the other moms, I think our son has three distinct issues that need resolving. Those being yeast/bacteria, elevated cadmium levels (toxic metal) and possibly pyroluria. I did the pyroluria test two weeks ago but the results aren't necessary correct, since I was giving Karl increased amounts of B6 and Zinc a couple of days before the test which can throw off the test results. Karl scored a 15. I believe a 20 means that the person should be treated. Anyway, I'm doing another test on monday. We also have an appointment with a new DAN doctor on May 28th, who I hope will find the piece of the puzzle that our current Environmental MD hasn't. Our current EM isn't overly concerned about Karl's high yeast counts or the elevated metals. They did put him on Nystatin for the yeast, Culturelle for the bacteria and zinc for the elevated cadmium, but she doesn't understand the possible correlation between any of this and tic disorders. I swear I know more that she does. Just like you and the doctor you saw at the hospital. I'm really hoping that this new DAN doctor will look at all of Karl's test results and come up with a plan. His tics have been so bad the last couple of months - coughing, sniffing, lip sucking and head nodding, not to mention the vocal tic, which is contant. We were in a doctors office yesterday for my other son, which was kind of on the quiet side and all I could hear was Karl's humming and sniffing. It almost sounds like he's saying 'um' 'um'. It's so involuntary. It makes me SO nervous and anxious to hear it. I'm praying that this is one tic that will hopefully go away as fast as it came. Finally, I think I might have asked you this before, but what's an osteopath? Is that a chiropractor? I've actually been thinking of taking him to one, especially since I noticed one of his shoulders are lower than the other. I'm just hesitant, because that means dragging him to another professional. He's been to so many doctors over the last year and has had so many things done to him. I'm trying to limit where he goes unless it's really necessary. Please keep in touch. Hugs. Dara

Hi Alison, It's so good to hear from you again. I often think about you and your son. I'm so glad that he's doing well. As you can see from my posts, I'm a mad woman these days. Absolutly focused on helping my son Karl. I just love talking to all of you. I don't know what I'd do without you. I'll keep in touch. Dara

Ronna, As I mentioned to Marie and Cheri, you all have been so wonderful to me in answering my questions and giving support. DEVASTATION hits the nail right on the head. My gosh, I never thought I could be laughing one minute and crying the next. Congratulations on your baby to be. I didn't realize you were going to have a baby. Do you only have Kurt? or are there others in between? I laughed about you're husband looking at the back of your head. Same here. In fact Karl, my husband doesn't see me much anymore. I'm always on the computer trying to find answers. I think I'm going to sign myself up for some yoga classes. I really need to get a life. I do try to run a couple of times a week and I eat really healthy. It's my mind that's not healthy. I'm still going to talk to the psychologist tomorrow night. Thanks so much for being there. Much Love, Dara

Cheri, I ABSOLUTLY do not think you're being insensitive to my feelings. If anything, you and the others have been so awesome. I wish I could have you all over my house for a glass of wine and a chat. It's funny how you can feel like you've known someone forever and never met them before. Thank god for you guys. Our son Karl has been having tics for almost a year now. It's not like it's new to us, but for some reason these last couple of weeks have been unusually hard. Maybe it's my state of mind. As I mentioned to another parent. I really started downhill when Karl started the humming tic. It's been three weeks since that one started. I was able to handle the others, not well but the grieving went away after awhile. This one though seems so permanent and of course noticable. The other frustration that I have with all of this is that TS doesn't run in our families. I keep asking why???? Although we don't have TS, we do have depression, alcoholism, anxiety, learning disabilities, ADD and OCD. None of these have been diagnosed by a professional, except the anxiety which my brother-in-law has been dealing with for years and ADD which my niece has. The good news is that my son definately has some issues that I think might be a factor in the tics (yeast/bacteria, elevated cadmium (heavy metal) and possible pyroluria). All three of these can be fixed. It's just a matter of how and when. Currently our EM doesn't seem all that concerned about any of these nor does he understand the correlation of these things and tic disorders. I'm hoping our new DAN doctor, who we're seeing on May 28th can shed some light on these things. Thanks so much. Big Hugs... Dara

Marie, Your words of encouragement are so awesome. I ask god everyday to give me the strength to handle this situation and to look after Karl. I've been doing as you say in regards to getting down at his eye level. I'm constantly kissing and hugging him. Time will heal. Thanks so much for your words. As a side note, I recently aquired a juicer. Low and behold, my boys love the carrot, spinach combination and I add a pear to it. What other vegetable besides spinach do you recommend? Dara.

Kim, I think you might be referring to 'MPV'. I don't know what it is. It looks like the range is from 7.5 - 11.5. Karl's score was 8.6. As far as the organic acid profile test, go to www.greatplainslaboratory.com. They have every test that you need, but I don't know if you need a doctors prescription for it. I doubt it. I just ordered a comprehensive stool test to test for yeast in my son's stool. Claire told me about it. Keep in touch. Dara

Hi Marie, Thanks for the encouraging words. I agree with what you say about trying not to be anxious around Karl. It's just that my feelings are getting in the way and it's very hard to pretend that nothings wrong when in fact something is very wrong. I just want to know that my beautiful little boy will be ok. Last week Karl brought home a little book that he and his teachers put together. In it was a picture of one of his boy dolls. Under the picture, Karl had the teacher write, 'My baby steals sugar from the kitchen'. I was so heartbroken. As you know, Karl tested positive to cane sugar, so he's not supposed to eat any, not even honey. I think deep down in side I'm very angry that this has happened to him. I'm trying and doing all that I can do at this point. Thanks for listening. Dara