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dswm

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  1. I'm feeling totally discouraged. A couple of hours after my last post stating that my son was overall doing better (on Feb 3), he abruptly began severe ticcing again. He has done it pretty much constantly since then. So, we are going on two weeks of mostly non-stop ticcing. His most bothersome tic is a verbal tic. When the verbals began in November, it was a cough. It has morphed now into a mix of a grunt and a mmmm sound. They have begun to run together so fast that it sometimes sounds like he is letting out a loud wail. He has been trying to hold his chin up, but I can tell it's starting to wear on him. His motor tics get worse when the vocals get very bad; it's like a storm in his brain. There are times he can not manage to eat for sake of the vocal tics. Mentally, when they are like this, he finds it difficult to do anything at all. We are doing magnesium, p5p, zinc, multivitamin, flax oil, calcium. Gluten free, casein free.Very limited sugar. Very limited refined foods. Organic. Clean and scrub everything all the time, but using natural cleaners. His regimen is all-consuming in our lives, and it's not working!!! His neurologist mentioned perhaps it is a auto-immune, infection-triggered tic. I was really pleased to find a mainstream type of doctor say that. And then.....this weekend my mother-in-law told me that she had a aunt who blinked non-stop her whole life, and that my husband's cousin always had this weird shoulder-shrug for years, and that my son's cousin had some pretty substantial tics when he was younger. "But nothing like Ben is doing," she said. She means no one had vocals. When she previously said there was nothing like this in our family, it was because she hadn't yet been educated on what tics were. Knowing that TS is thought to be a spectrum disorder, this news rocked me. So, now I'm wondering if this is just genetic. We've noticed that DD12 has a couple of mild tics too. We didn't ever notice them before, but we observed them recently When she had a cold. DS's flare occurred on day 3 of DD's cold. Genetic? Trigger? I can't be sure of either one. Neuro mentioned possibility of a steroid burst trial......if it is an autoimmune trigger this will help. If it's genetic TS, I've heard that can make tics worse. Son cried and had asked to please take medicine to help and give him some relief. He has constant, strong tics morning until bed. He wants medicine. We have already done some medications--Guanfacine didn't work, had an adverse reaction to a low dose of topamax on the second dose, and is now trying a clonidine patch, which isn't really working. The only meds left are the scary ones. We don't know what to do.
  2. I had originally posted on the Tourette forum, but I think I need some information from this group of moms! Please help me to interpret and understand... My son, age 9, developed some eye rolling tics in March 2015. He had 2-3 days of severe eye rolling, then the symptoms decreased rapidly to the point that he only did it a couple of times per day. Everything else was fine. Mid-November 2015, he took one single breath and developed a intense, brutal coughing tic. He coughed severely until Jan 6, when he finally started having pauses in coughing. Over time, the cough morphed to a strong noise that is kind of like a grunt. He also developed severe anxiety to the point that the anxiety became as disabling as the tic. The only things that kept nagging at me were that during the several weeks of bad tics, he looked physically ill. He was pale, with brownish circles under his eyes. He was exhausted (though admittedly, the tics interfered with sleep.) And, over the past year or so, his temperature has consistently run in the low-99's, but now since this onset is routine temp is 99.7-100.1. Things were going well, then he had a recurrance of severe symptoms last week. Interestingly, it occurred two days after his sister was ill with cold-like symptoms. Strep titers were normal in November. His neurologist recently ordered AE and viral panels. He came back on his labs positive for Epstein Barr Nuclear antibody nearly twice the normal range. His epstein barr viral capsid IGG and IGM were both normal. He had tonsils removed at age 3. He was scoped at the onset of the cough before we knew it was a tic, and his adenoids have grown back and are apparently quite large. His sister was ill with a cold recently, and two days in to her illness was when his recurrence of strong tics started. We are changing medications today to help control the tics. The vocal tics are so severe that he has difficulty eating, gets dizzy from altered breathing, can not focus. We have started to homeschool and he can not even keep up with that when he is ticcing like this. It is completely disabling. Last night on the phone, the doctor did not specifically say PANDAS/PANS, but that is what she was getting at. She said she thought he presented like a kid who had an autoimmune type of reaction. She mentioned steroids and IVIG, though she said IVIG was very hard to find a hospital to get it in---from what I know of her she would want a hospital setting. We will give these new medications a try and then I will further discuss the steroid trial at our next office visit (she prefers to do one thing at a time to avoid confounding the results.) I do really like this doctor---not many others will talk to me at 10pm for 45 minutes (for free!) SO--thoughts? Ideas? Natural interventions? Interpretations of the Epstein Barr? I'm not sure what to wrap my head around first.
  3. Just an update, Overall my son is doing better. His vocal tic was constant from November 14-Jan 6 then became episodic with an overall decreasing intensity and decreasing frequency. He's now at a point where he typically spends more time NOT ticcing than he does ticcing. The silence has never been more welcome! He is sleeping better and his color is improved. He simply LOOKS healthier right now. We have tried dairy/casein free...I thought I saw an improvement after the first week of doing it. Added it back for a few days and saw more tics. However, at that time he also had a urological condition that required a minor surgery, so result interpretation was confounded by stress from surgery. After he recovered from the surgery, we tried it again with results that were ambiguous (I thought overall tics were improved, but then he had his worst episode in over a month while we were off casein as well as an increase in more moderate intensity but short-duration tics.) We've stayed off of it regardless---it was hard at first and is easier now---I'd rather just stay off and continue to see how he does. I can't deny that he is overall better in a general sort of way, even though he is still having occasional episodes of moderate vocal tics. I'm not sure if that overall improvement is related to a regular waning cycle or to our dietary modification. We'll stay off of it and see how it impacts the waxing/waning over time. We are about to start gluten free, which I've read can take anywhere from days to weeks to really be able to see results. I've read quite a bit about gluten causing psychological problems as well, and anxiety has become as big as an issue for my son as tics, so I'm eager to see if gluten free helps. We are currently pending results for lyme testing, mycoplasma, a couple other viral panels that I can't recall right now, and an autoimmune encephalitis panel. Pending the results of gluten free trial and the new labs, I may take him to the known PANDAS doctor here in Houston to see about further testing, and perhaps to an environmental doc. I do have an article I will show our regular neurologist at out next appointment regarding PANDAS and late-stage testing recommendations, specifically anti-dopamine receptor antibodies. Those were not included in our last blood work. Our neurologist is a very kind person who really treats my son like a person and not just a case file. She's never spent less than an hour with us at an appointment, never been hurried. When he was having the most trouble with tics, she called or emailed daily to check on him. I have her cell phone and an invitation to use it whenever needed, though I wouldn't ever take advantage of that. It is rare to find a doctor like that, and I really don't want to lose that. It is comforting to me. I can discuss PANS with her openly, though I am not actually sure what side of it she lies on. My approach when asking for testing is "It's a simple blood test, and it can't hurt to check, and he deserves to explore every possibility." The worst of everything, the vocal tics and severe anxiety, started less than three months ago. When I think about it, it feels like forever. However, I think we've come pretty far in that time. Motor tics started nearly a year ago. As it turns out, my son has been having some pretty substantial anxiety for years, though he was adept at concealing it. I think the vocal tics brought him to a breaking point in regard to his anxiety. So that's where we are now. Still figuring things out, but making progress.
  4. Hi, thank you for your replies. I guess I am on this board because I do, in my heart, think there is something else going on. The change was so sudden, so dramatic, I don't believe it is just a regular thing. We don't have any Tourette's in my family or in husband's family, though my older daughter did have a transient vocal tic a few years ago. It was just a throat clearing thing and was so mild and short-lived that I've only identified it as a transient tic in retrospect, given everything that is happening with my son right now. So my big question is---how do I find a doctor that is willing to look more deeply and outside the mainstream? I should say this: I have work experience that involves investigating doctors---there are a lot of them out there who prey on people's fears for financial profit. The one doctor in my area (found by searching this forum) who I've found who does PANDAS does not take insurance, and that can be a red flag. My inclination is to believe it's PANS from the flu. He had been diagnosed with flu two months before the eye tics started and had flumist 11 days before the vocal tics started. How could that even be tested for or proven? He's had the vaccine, so of course there are antibodies in his system. And if that's what it is, how could that even be treated?? And what is the long term prognosis---flu is so prevalent every year, I can't just keep him in a bubble forever worried that someone might breathe on him. My brain freezes up just trying to think of all of this. To answer the questions: -My son was placed on an antibiotic standard course Zithromax at the beginning of this. It did not even slightly lessen the symptoms..if anything, they got worse. He was placed on it because one of the ER doctors did a pertussis test (out of an abundance of caution) and it is standard procedure to give an antibiotic until the test is proven negative. Though it was negative, I continued the full course of antibiotics. -He also took a course of steroids. This was prescribed more as a "let's try this." There was no change even in the slightest with the steroid. -All labs perfectly normal -We are trying GFCF after Christmas. I don't feel that we need to cut everything out right now over the holiday---the poor child is dealing with enough already without having to give up a Christmas cookie just so mommy can experiment! That said, we are nevertheless dramatically limiting sugar even over the holiday, and we are dramatically cutting back on gluten and casein. Pretty much, we've eliminated it from his routine diet, but if he wants a Christmas cookie for desert, then that's ok. We'll go hard-core on it after Christmas. -No history of asthma, but we all have seasonal-type allergies, more in the spring. My home is pretty clean and free of clutter, and when this came on, I literally pulled every single thing out from his room and cleaned his room from top to bottom, even dusting the tops of the doors and curtain rod. There's no mold around the windows or in his bathroom, or in the rest of the house that I can find. I'm a bit of a clean freak. -Weight gain/meds: he wasn't on any medications before this started, except for the vitamins that we had kept up because of the eye tics. But he had gained quite a bit of weight over the past year. Thank you all so much for your insight and experience. -Rebecca (Houston, TX)
  5. Hoping I can find some support here, maybe bounce some ideas off of people....I don't know. Feeling very overwhelmed by all of this. Last spring, March 2015, my 9 year old son had sudden onset of very severe eye rolling tics--every 3-5 seconds. It was spring break at school. I took him to his pediatrician googled, and started magnesium. Within two days, the tics were very mild, and most people never noticed them after that at all. They never went all the way away. On November 14th, we tucked my son in to bed, and he took a breath, then began coughing severely. We tried every home remedy for cough, ended up having to take him to the ER because he was having such difficulty breathing.....To make a long story short, in one week he went to ER three times, saw an ENT got his throat scoped, saw his pediatrician, saw a pulmonologist, and finally saw a neurologist. The coughing is a tic. The initial brutal coughing tics were episodic in nature, lasting 2-4 hours. Those have changed to a constant (15-30 times per minute) cough/grunt/forceful exhalation thing that is not so brutal in nature but is unrelenting. In addition, my slightly nervous child has developed nearly debilitating anxiety either in conjunction with, or as a result from, this coughing tic. Sometimes I feel like the child I had died. He's not the same kid he was a month ago. He took one single breath, and everything changed. He's such a great kid, and he doesn't deserve this. No one's child does. The coughing wakes him up from sleep, so he is taking melatonin. He is on guanfacine 3 mg and started zoloft 25 mg a few days ago. He takes multivitamin, omega 3, magnesium, vitamin D. We make sure to get in our citrus every day for vitamin C. Since they are ongoing, I haven't been able to pinpoint any connection to foods or anything else. His anxiety is so severe that we have started to homeschool him. The anxiety made his tics worse, caused panic attacks about school, and we were looking at having to medicate him even more just to get him to school. I didn't want that. This latest episode started 11 days after his FluMist. He had also had the flu about two months before his initial onset of motor tics. Related? Perhaps. He's also gained 20 pounds in a year despite no changes in eating patterns or activity levels, and over the past year has developed a chronic temp of 99.3-100.0. His labs, MRI, EEG, strep titres are all perfectly normal. His neurologist seems unimpressed by the weight gain and low temps but I wonder if it's all related. I really do like my neurologist, mostly because she is available to me pretty much 24/7, and that has done a great deal to ease my mind. She did say that even if it was related to the flu, that treatment wouldn't be any different. Not sure if that's correct or not. I am seeking a second opinion though. Not sure what I'm even looking for with this post. I'm completely overwhelmed. Advice? Words of encouragement? Ideas? Similar stories? I've googled until my eyes have crossed.
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