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Found 62 results

  1. My son (11 w/sever autism) has been treated for PANs for two years with antibiotics by an immunologist at MGH. Recently his symptoms worsened with increased anxiety, ocd, aggression, and a new tic disorder. Can anyone recommend doctors in New England who could treat a child like my son? We're feeling quite desperate. Thanks!
  2. Anyone with a PANDAS teen with Severe OCD? My son has been suffering with PANDAS for 5 years, he's 18 (suddenly sick at 13 with a strep infection) and now living in a residential school. I thought we were finally on the right track..he started speaking a little more, and finally is taking his antibiotics but recently he started to decline more (he's already very disabled). Now he won't leave his room, has stopped eating and can't sleep. Stands all day. I feel that he needs to be physically moved from the room..just to help him get past this point but staff are hesitant. Not sure what other options we have but can't give up on him. He's had many IVIGs with no real lasting improvement. SSRI's did nothing but make him aggressive. Recently, we changed the antibiotic from Keflex to Zithromax, hoping for a faster improvement, and everything fell apart. He's back on Keflex and motrin for over a week and still no improvement. Very worried
  3. Hi All, I'm new here and I'm wondering if anyone else has come across these types of tics, and could it be related to PANDAS/PANS? I guess I'll give the rundown of our situation for background. My daughter started having tics at age 12. They started after she was really sick (sore throat, headache etc)for a week, but she was negative for strep. Our other daughter was sick in hospital(hindsight possible pandas/pain processing disorder) and I didn't do a good job of paying attention to other daughter. She spent a lot of time in her room and we noticed her doing things but we thought it was for attention(with sister sick we knew she needed more but didn't have the energy to give it). Within 7 months she had every single tic possible (complex vocal, gross motor, copropraxia, coprolalia, and a few more and they happened all day and much of the night), she had severe anxiety, sensory sensitivities, depression, ocd, panic attacks where she blindly runs away, and she had self-injurious tics. She has auditory and visual hallucinations and she also developed purging behaviour, and self-harm. Her schoolwork has stagnated and has worsened in math/science but I don't know if that's because of the interruptions to her thinking from ticcing so much or another cause. The daughter who I thought was totally normal, with acknowledged very mild tendencies to ocd, was now struggling so much. She is now 15 and is still struggling. Her psychiatrist is excellent and he believes that there's more going on than TS(he's a top person in his field). The only pediatrician in our area who possibly deals with Pandas spent 15 minutes with her, insulted her, and refused to treat her. She's been on fluoxetine, respiridal, and citalopram with no changes seen. The tic that is most problematic is what we call a seizure tic. It's not a seizure (the neurologist actually saw one) but it looks similar. Out of the blue she falls down and her muscles all tense up, she arches her back or flexes into gymnastic positions(she dances and is very flexible and strong). All of her muscles are tense and then she often bangs the back of her head, twists around slowly, and then the muscles contract inward rapidly like she's a ball, and then flex outwards again. This goes on from anywhere between 10 min and 90 min. She has absolutely no control but she can hear. She can't see or control breathing(like holding her breath). As a result of this tic she has had 3 concussions, has almost drowned, has crashed her bike, and been generally bruised and embarrassed. Her psychiatrist who is treating her agrees with me when we say can't find a trigger. It happens when she's asleep, when she's quietly reading on the couch, when she's baking, out for a family bike ride, or when she's at the mall. This has made things really hard for my daughter over and above the other things that she deals with. We're still trying to see if we can get her diagnosed with Pans/pandas, as her symptoms seem to veer away from TS. Her psychiatrist says there's no sign of psychosis from schizophrenia (which I think is why she was on respiridal). On the other hand I don't want to chase down a diagnosis that is inaccurate. I just want my daughter to get some relief and some hope that there is something we can do to help her feel better. Sorry for such a long post but it's complicated...If anyone has experienced tics like my daughter, I'd love to hear about it and thanks for reading.
  4. Adult with PANS

    Hi there, I am a 27 yr. old female who was just diagnosed by Dr. T with late-onset PANS. I wanted to talk a little bit about my history, problems I am facing now, and some of my lab work. I started having problems at age 7 with extreme overactive bladder which is now diagnosed as "IC". At age 15 sudden sharp burning pain in shins which I still have. At 18 developed anorexia nervosa, along with it came chronic tiredness and bad insomnia. I was just diagnosed with depression and treated with MANY medications and eventually ECT, none of which were helpful. I got somewhat better with ANA but had bad BDD and developed very bad bulimia in 07 at which time I also developed movement disorder only with my arms. In 08 I had a sudden onset of severe SEVERE GAD and my heart was tachycardic 24/7/felt like I was running on adrenaline. Trying to finish 2 year degree but getting only 0-2 hrs of sleep in 24 hr period for 6 MONTHS. I could not stop heart rate and that is later diagnosed as dysautonomia: POTS (hyperadregenic). Where is gets bad is January of 09. I wake up with fatigue so severe I cannot leave my bed for an entire year. Still no diagnosis. I felt like I was dying and sleep wasn't restorative at all (aged 22?). In 2010, sudden onset of OCD which has only gotten progressively worse month after month with no relief from ssri's, benzos, atypical antipsyhotics, or anaphranil. In 2010 I am able to get out of bed but have horrible post exertional malaise (PEM) am diagnosed by 2 doctors with CFS (chronic fatigue syndrome) - see 2 well known CFS doctors who can't help me at all. Immunomodulators gave me violent reactions and Xyrem didn't help me sleep and messed with my bladder and anxiety. 2 months ago somebody got me in touch with Dr. T and was diagnosed with late onset PANS which perhaps started when I was a teenager. Labs: elevated Anti-DNase B (224) No evidence of lyme or co-infections. (I went through lyme treatment, abx for 8 months, no help whatsoever and got very bad c-diff) IgG4 low IgA2 low Basophils are absent Positive for Coxsackie A and B Mycoplasma pneu. (high titers 141) Current treatment: I was put on valtrex, first round did not help, so going for 2nd round. I take a lot of downers: klonopin, xanax, zyprexa, bystolic (beta blocker), and very low dose zoloft. Everything is in tiny doses b/c I have crazy sensitivity to meds. I also have very bizarre reaction to medications so he wants to do some kind of saliva genetic testing. Excessive daytime sleepiness horrible but stimulants crash me and make fatigue and sleepiness worse. I can't stop the ocd even though I've been in therapy for 5 years and tried many medication. It's magical thinking not germs. Obsessed with bladder and sleep. The fatigue is more correlated with CFS but as ya'll probably know, there's no treatment for it. Other than that, my dad just left us. He says I am malingering and is not willing to learn anything. I have 2 puppies that I love and adore. I do photography and have a nice flickr account going. And I was a great musician before getting sick, I can still play and write songs every so often. I am mostly stuck at home in bed with obsessive thoughts wizzing through my head 24/7. I would like to meet other adult patients also. I am grateful to find this forum and I also belong to a social media site specifically for young adults with neuro-immune illnesses - we have chats, video friday night chat,s we are starting hobby groups, and we have active forum if any interested please let me know. - Chris p.s. Has anybody found that they eventually got help with ocd b/c it's ruined my life? Step #1 - valtrex Step #2 - genetic testing (try and figure out severe sleep and med problems) Step #3 - IVIG .............would removing tonsils be good idea (I've had problems with them since I was a child, infected all the time) and antibiotics did not help and gave me bad c-diff
  5. Hello everyone, my name is Arindam i have been suffering from OCD for last 8 years and always tried to find out what exactly causes the disorder and up untill now never really looked into the topic of PANDAS and how it could trigger the onset of OCD . But from what i have read i understand that PANDAS usually happens if children (ages upto 14) gets infected with group 'a' strep bacteria causing strep throats or scarlet fever which confuses their own autoimmune system to mistakenly treat a part of their brain (basal gangila) as foreign body and attacking it instead of the infection or along with the infection. Does anyone know or has any idea whether a child could develop PANDAS and then OCD from group 'b' strep as well ?
  6. IVIG for untreated PANDAS

    Hi, new to the forum but have been observing for a few months. I'm in desperate need of any answers possible. My DD first started having severe OCD symptoms at the age of 7 (she's 17 now). I had no idea what caused it or what PANDAS was. Through the years she has been on every SSRI imaginable (which had very little - if any - effect on her OCD symptoms and gave her suicidal thoughts) , been through ERP and CBT, hospitalized, you name it... In late 2015, an immunologist ran several tests and diagnosed her with PANDAS. Along with the OCD and being prone to strep, she also has insomnia and sinus/breathing problems. The only advice the immunologist gave was for us to get her tonsils and adenoids removed, which we did, and DD got strep 4 times within six months of the surgery. For the past two years, I've been going through doctors trying to convince one of them that DD needs long term antibiotics (we live in a very strictly textbook, narrow-minded location). We have an appointment with a new one this week with a reputation of being progressive and his secretary told me he is familiar with PANDAS. I also recently contacted Dr. K in Chicago who told me DD would most likely benefit from IVIG. Do any of you have experience with IVIG or any words of advice? Did it provide any relief of OCD symptoms? I've read mixed reviews but am willing to try anything at this point. I'm also going to see if this new doctor can test her for Lyme. Another concern I have is that God forbid her PANDAS may have gone too long untreated and she's suffering from irreversible brain damage Sorry for such a big post I am just at loss at what to do here.
  7. Hello. I recently took my 11-year-old son to the pediatrician for OCD symptoms. The doctor put him on 25mg of Zoloft and three days later he is experiencing severe abdominal tics. Has anyone else experienced this? Wondering if it is caused by the Zoloft or is secondary to the OCD. I tried calling the Dr 3 times yesterday and my calls were never returned. I will be changing pediatricians after this experience, but I have no idea whether to leave him on the meds or not. We've never dealt with tics before....
  8. Hi Please help my son. I am desperate! My son used to have mild to moderate OCD and controlled with Zoloft 200mg. His OCD basically did not affect his daily function. April of Last year, he had to take antibiotics for other purpose, but his OCD increased a lot. After the treatment course, his OCD relieved a little bit. In this year April, his OCD increased significantly without a clue. Blood tests showed high level of Strep A antibodies. Then we visited Dr. T for checking for PANDAS/PANS. He first gave him Augmentin and Ibuprofen, but OCD increased instead. At the same time, he ordered a comprehensive blood test which showed he mainly have high level of Strep A antibodies, no Lyme infection. Then he prescribed Clindamycin and Rifampin, his OCD got worse again. Lastly, Dr. T ordered Cunningham panel of tests, which indicated my son has autoimmune disorder. Dr. T. then gave him prednisone 50mg for 10 days and expected a speedy recovery after 2 to 3 days. Unfortunately, his OCD continued to get worse and even worse than before his treatment with antibiotics. Before the treatment, he could still make it to school. After the treatment, he cannot make it at all. Now He has to take more than 3 hours for morning routine due to OCD. All this blood test results seemed to suggest PANS but the conventional treatment does not help at all and even make his OCD worse. Please help me make sense of it. I am desperate. Thanks Louisa
  9. Dear All, I'm desperate for some guidance on my situation. I feel utterly lost and feel that I'm beginning to dwindle away as a solitary eccentric. However, I may finally have an answer nearly 4000 miles away. To give you some background: I am, or was, a 24 year old mathematics student from the UK, with a working diagnosis of ASD, OCD and ADHD. I have a very much up and down history of academic attainment ranging from A's to U's during troubling periods. Anyhow, this cycle has been most pronounced for the last 6-7 years but may originate in childhood. It all began in November of 09' at age 16, I was studying for A-Levels when all of a sudden and overnight I began experiencing extreme anxiety and unrelenting sexual intrusive thoughts (Pure-O), so severe it was impossible to channel my attention in any productive way. At about the same time I become housebound, started showing signs of behavioural regression and went off my food - I lost a lot of weight. At the time I was reluctant to talk about the thoughts, as I didn't believe they would be seen in the right context. Anyhow, fast forward a few years and with every "relapse" I become isolated, show marked personality changes and as result attract a lot of ridicule/bullying and ostracisation. I've never been able to find a relationship because of unrelenting untrue rumours and gossip surrounding my sexuality - unfortunately, I've been dumped a couple of times because of it. But more to the point I've never been able to explain the extreme shifts in my behaviour until perhaps now. The symptoms range from mood swings, regression, brain fog, short term memory loss, insomnia and all I can conclude is severe cognitive dysfunction - whether this is connected to ensuing depression, I don't know. Anyway, out of desperation and with my current diagnoses, I searched for answer to tie all the pieces together. I had a consultation with Dr Kovacevic, who said that he believes my case to be certain for pans/pandas. Hence, he's provided me with diagnostic and treatment recommendations. Here's the thing, can pans/pandas explain such severe cognitive impairment? - because guys with everything I've been thorough I feel like I've lost my mind. And number 2 is there anyway around getting the blood tests done and receiving treatment here on the NHS, and at the grand old age of 24 is there any hope of recovery? I'm sorry, I must sound personality disordered by now but I've gone a long way in the face of ignorance. I can hardly recognise the person I once was. I just want my brain back, I feel like an invalid. If anyone has some guidance, consolation or can enlighten me on the ins and outs of PANS, I'd be much obliged. What a life :/ Thanks for reading.
  10. I'm 20 years old and I've had OCD accompanied by tics since I was a little kid. The OCD symptoms have subsided over the years and now almost entirely consist of tics. The main two tics are jaw popping and blinking. The jaw popping can be really bad to the point where I either clench my teeth, bite my cheeks, or simply don't open my mouth for fear of popping my jaws. The blinking is almost constant and is mainly in one eye, but either ways it makes it hard to drive and I've recently noticed my vision becoming blurry which I can only imagine is from the constant blinking. The two tics alternate back and fourth, so when I'm not doing one I do the other. When I'm on the correct dose of meds, the tics subside but still persist and I'm looking for some methods outside of OCD meds for treating my tics. I'm going to the doctor in a few days to increase my meds dosage which will help but I'm interested in hearing some other methods as well. I recall reading something about magnesium and calcium? I already take calcium and am willing to try almost anything to bring these tics down to a manageable level. Right now, they are worse than they have ever been. Any help would be appreciated. Thank you.
  11. My daughter just turned 3 earlier this week, and last night some behaviors that we'd noticed that we thought she would just grow out of got a lot more concerning and worse. She's always been particular about being clean and her hands being clean, though I didn't think too much of it. Lately when she gets upset, particularly when she wakes up at night, she has started to spit on her hands, which gets her even more upset, but she keeps doing it. Used to be we'd hand her a washcloth, she'd towel her hands and would be fine, but last night a washcloth was not enough and we had to take her to the sink to wash her hands. This worked twice, but then when she woke for the third time (ugh) last night, she was so worked up that taking her to the sink didn't calm her down and she started forcing her fingers down her throat and would gag and even threw up once. I'm at a loss as to what to do, especially since as she just turned three she can't communicate abstract thoughts yet, and I've been scouring the internet and can't find anything about a toddler spitting on themselves when it upset them so much. Other things, my husband is on the OCD scale and sees a lot of him in her. He's not at the point where it interferes with his daily life but he has obsessions and compulsions and has had a few panic attacks that has resulted from them. Her older brother (6) and myself are both autistic, however, she does not have any autism warning signs and does some rather pro-social behaviors that I don't think that's what it is. Other behaviors that are concerning: -She keeps her room immaculate to the point where she doesn't even let toys into her room. When I put in her big girl bed I decided to add some toys and stuffed animals and she threw a fit until I took them out. And I've tried to let her take a toy in her room for quiet time but she refuses to have one with her. She will throw anything that does not belong in her room into the hallway and cleans it twice a day, at nap/quiet time and at bedtime and has done this since she was 18 months. -She's very particular about how the covers are on her bed. The covers have to be just so and there can't be any lumps and she sometimes gets upset that we can't make her feet lumps go away. -She changes her clothes between 2-3 times per day. If she so much as splashes a drop of water on her shirt while washing her hands she gets upset and wants a new shirt. -She is starting to ask to wash her hands a lot and find reasons to do it. Like when I take her to pick her brother from school or go to the store she will ask to go potty, then she'll sit on the potty without going or even giving it long enough to have a good try at going, and immediately ask to wash her hands. -She has elaborate getting into the car seat and good night routines, where there's an ordered sequence of how everything goes, we have to give her a high five a certain number of times (though the amount of times changes) and then we have to say "good bye" to her in a particular way with a specific tone of voice and a certain number of times. I had thought it was just typical toddler until last night, but now I'm starting to worry that it might be the beginnings of OCD. The spitting almost seems like she does it to have a reason to wash her hands but then she gets so upset that her hands are dirty she spits again and works herself up even more and it causes a viscous feedback cycle and I don't know how to stop it. I actually work with children and have taught child development, and I've spent the morning contacting professionals I know and ruling out sensory processing disorder and other common childhood things, though everyone agrees that this is not normal and the only thing we can't rule out is OCD, however, I have not heard of it manifesting this early (3 years and 3 days) and there is so little on the internet about it that I'm wondering if I'm overreacting or if it will just blow over. The only other thing we can think of is that she's acting out to get attention because her brother is autistic, yet she spends the day home alone with me while he is at school (which is an intensive therapy program for autistic kids so he's getting all the help in one place and I'm not shuttling him from place to place, it would just be like having a typical sibling in a typical school for her) and he's high functioning enough that he plays well with her, he's outgrown his tantrums and typically either entertains himself when he's home or plays with her, though I don't know how she sees it from her POV. Does anyone have any insight or resources? Her well child visit is Friday and I plan to bring it up but I also think that the doctor will tell me I am crazy if I bring up OCD.
  12. Hi all, I have approval from Dr T to try minocycline, but was then told by his staff I'd have to visit him in person before they'd call the rx in. So, in the meantime I'm wondering if anyone knows anything about ordering minocycline online? I found many sites, and from the one below it seems to be the same rx, but for animals. The price is good - but I'm wondering if anyone has done this before? Am I crazy for considering this? Here's the site I'm looking at: http://www.allivet.com Also, here's a patent that was submitted for treating anxiety/ocd with minocycline - interesting! Has anyone tried it for their OCD/PANS? Treatment of anxiety disorders with minocycline: http://www.google.com/patents/WO2008104734A1?cl=en
  13. Hello everyone, I was originally diagnosed with PANDAS in 2004 at the age of 5. I experienced severe tics, OCD/anxiety, behavioral issues, and sleep problems. At this time, many doctors had no knowledge of this disorder, so i was prescribed both penicillin and clonidine. At the age of 12, my symptoms had almost completely disappeared. I still had all of the symptoms when first diagnosed, but not nearly as severe. I'd say my PANDAS has been in remission for a while, but recently it has come back and it is extremely severe. However, since I am no longer considered a pediatric patient, I do not know where to start or how to receive treatment. I need help and any advice would be appreciated. My parents are very conservative with money, so I do not have many options as I still live with them. Thank you for your help.
  14. My son is 14 and we have not had much success with any protocol, keeping in mind he has been reluctant to participate in almost everything. I have been in touch with Dr Mary of Marys Herbs concerning her OCD protocol that pertains to thinning myelin sheath. I am looking for parents that have used her protocols to share their stores and effects the treatment has had. Thank you!
  15. Does anyone know any psychiatrists in New Jersey who is specialized in ASD with OCD/anxiety? You can send me the information to my personal email account: louisalaw@gmail.com. My son is 18 years old with ASD. His current challenge is severe OCD. Thanks so much. Louisa
  16. I found Mary Reed from Safe Harbor website. I filled in the questionnaire she provided regarding my son’s condition, mainly about his OCD. It then came out with some supplements suggestion, and one the them is Evening Primrose Oil. Does anyone know or have experience on its effects on OCD or anxiety? Thanks Louisa
  17. Hi, My son used to have mild OCD. But last summer, his OCD increased significantly. Dr. T found he had PANDAS and prescribed him with various kinds of antibiotics, which, unfortunately, made his OCD worse. Later, the Cunningham test showed he had autoimmune disorder and was prescribed with Prendisone, which even made his OCD much worse. So we stopped all these medicine. And later, with increased probiotics, his OCD was relieved. Although it was still significant, it was within a tolerable level. Last week without a clue again (or maybe due to increased social anxiety in school), his OCD increased back to the high level like that in summer. So his school psychiatrist wanted to increase his medicine for OCD because he has been very late for school due to OCD during morning routine. His current medicine for OCD is zoloft 200mg. He is also taking zyprexa for his paranoia. Personally, we do not want to add any medicine. He has been seeing Dr. Greenblatt, an integrative psychiatrist, who give him several supplements. His paranoia has been reduced to minimal and zyprexa reduced from 30mg to 10mg in two years since he started taking the supplements. A recent Kryptopyrrole test indicated he had elevated pyroluria and Dr. Greenblatt has just prescribed him with Zinc and Vit B6, hopefully to reduce his anxiety. We would like to see how the new supplements work before changing his medicine. Anyway, his school psychiatrist proposed three options for us to consider for treating his OCD 1. to increase zyprexa from 10mg to 15mg in order to boost up the effect of zoloft. 2. to add another SSRI, such as Prozac, on top of 200mg zoloft 3. to add another tricyclic , such as Anafranil, on top of 200mg zoloft. Any feedback for the medicine options and any suggestion relating to what happened to my son's OCD are greatly appreciated Thanks for your time Louisa
  18. Hi My son was taking inositol for his OCD as recommended by his integrative psychiatrist this April, but his OCD became a little worse. He is also taking a lot of other supplements,including lithium orotate. I have just learnt from different website that Inositol cannot be taken together with Lithium, as it seems to block its action. Has anyone ever heard of that? Please share your experience in using inositol for OCD. Thanks Louisa
  19. I just wanted to share what we've discovered with our 8yr old son. My son has had these type symptom during allergy season but not as intense as this year. WELL this year we started giving him Allergy Immunotherapy drops and his symptoms increased majorly. I've referred to it as OCD but honestly its a mixed bag of OCD, vocal tics, stimming/sensory stimulation. I connected the dots and had his histamine tested. Mind you, he had barely any noticeable symptoms. Occasional sneezing or cough. His histamine levels were 4x the high normal. Histamine is actually a neurotransmitter and can cause neurological symptoms. Do some research on Histadelia kids. Describes my son to a T. Work with a Functional MD or ND who understands the methylation cycle and other contributing SNPs. I would suggest getting a Blood Histamine test. We just had one for our son by Dunwoody labs. It included histamine, DAO and Zonulin (zonulin was optimal so not a Leaky Gut problem). We ran genes through 23andme a couple years ago which is helpful information (still requires research, trial and error). Dr. Amy Yasko (google her name) has an online forum and free online books which are very helpful regarding gene errors and the methylation cycle. If our histamines are too high there are some reasons behind that which can be supported by understanding your methylation cycle. You can read up on Histamines and how they effect us. Some people have issues because of low histamines and others because too high. Here are two good links. http://www.joanmathewslarson.com/HRC_2006/Depression_06/D_roller_coaster.htm http://www.drkaslow.com/html/histadelia.html
  20. Is there a typical best antibiotic for treating myco pneumoniae? I have been on only the fairly common ABX before (zpack, etc) and noticed no change (except typically a worsening of symptoms - likely due to changes in gut bacteria?). Would appreciate any input!
  21. This was just published 2/12/16 about a 14 yo girl who came down with OCD and showed high myco p titers. I don't have access to read beyond the first page, where I believe they were going to start discussing treatment. Very interesting to see publications that address PANS and attribute its cause beyond that of strep to include viruses such as Mycoplasma pneumonia. Does anyone have access to this full article? Would love to read it in its entirety. http://online.liebertpub.com/doi/abs/10.1089/cap.2015.0080?journalCode=cap
  22. Help to diagnose

    Hello. I am new here. But I really need someone's advice. My daughter is 10 years old. 3 years ago my daughter started having OCD symptoms, she was washing hands a lot, and was worrying about a lot of things, she was tested positive for strep, after antibiotics she got better. Pediatrician thought she probably has Pandas. Now, about 5-6 weeks my daughter started to have anxieties at evening before she would fall asleep. She was saying that she worrying about something and she doesn't know why. Later she started having sexual thoughts about everyone she knows. (She doesn't know what sex really is, mostly her thoughts was about kissing, hugging...) This thoughts was bothering her a lot. Later she started having thoughts that she's hurting someone with knife, sister, mom, dad, friends... That was really scary, because in general she is very kind and loving So, I so it thought that Pandas came back, so we went to see a doctor. My daughter had rapid strep test that was positive, after that they did culture strep test that came negative. But she was on antibiotics for 10 days anyway. Symptoms didn't go away after antibiotics. Later we did a blood test that showed my daughter didn't have strep. That is why pediatrician didn't think my daughter has Pandas. I don't know what to think. We went to neurologist and he wanted my daughter to have MRI. Also doctor recommended to see it's a psychiatrist. But I really scared to go to psychiatrist, I am afraid that doctor will make a wrong diagnosis or will put my daughter on very strong medicine. For now I am giving my daughter vitamin B-complex, glycine, probiotics and chamomile. Also she doesn't eat sugar and caffeine. Sometimes my daughter feels normal for couple of days and then she starts having bad thoughts again. She is having irritability sometimes, and starting thinking about losing weight, and she is not fat. I Will appreciate any comments. Thank you.
  23. Thank you so much to everyone who participates in these forums. I have already found so much comfort and support in reading your words over the past year when our son started having vocal tics out of the blue. I am sharing our story for the first time now because of some recent developments that are causing us great concern. I have tried to provide as much information as possible and apologize for the very long post. I am posting this in the PANDAS forum but am not sure if the Tourette forum fits our son's profile better. Mid-February (2015): Our just-turned-four year old son, “A,” started making a repetitive vocalization that sounded like a faint, high-pitched tone. Over the course of a week or so, it morphed into a very loud involuntary squeaking noise that, at it’s worst, could occur multiple times in a minute. We went to see our family doctor, who examined “A” and reassured us that childhood tics were a somewhat normal occurrence and that “A” would probably grow out of them. We went to see a pediatric neurologist who talked to us about transient tic disorders (and the long-term possibility of Tourette Syndrome) and sent us on our way. Over the past year since the first tic appeared, there have been several cycles of tics being more and then less prevalent. They always appeared to be vocal in nature and included sounds such as humming, coughing, sniffing, and exhaling loudly. Sometimes they were confined to a specific time of day, like at meals, or at bedtime when we were reading books. Other times they waxed and waned throughout the day with no predictable pattern. We did our best to not call attention to them and to try to reduce “A”s anxiety when they occurred. In October we introduced an air filter in his room and observed a (perhaps coincidental?) reduction in the frequency of his vocal tics. In fact, for a period of time from about Thanksgiving until mid-January, we did not observe any tics and began to wonder if perhaps he had “outgrown” the tics as his doctor had suggested could happen sometimes. Then, on January 20 (2016) he peed his pants at school during an engrossing activity. This had never happened before. Over the course of the next several days, “A” continued to pee in his pants, often several times a day. We took him to the doctor to test for a UTI, which came back negative. We have since deduced that the peeing happens when he involuntarily tightens his abdomen - perhaps a new motor tic. Around this same time, “A” started having trouble sleeping again. He asked for Mom or Dad to lie next to him as he was falling asleep, and on multiple occasions he has awoken in the middle of the night and asked for one of us to sleep in his bed with him. Once, when I (Mom) was lying next to him in bed as he was falling asleep, he mentioned that he saw “red Santa Clauses” and “red buses” all over his wall. He asked if I could see them, too, and then (possibly covering up) said that he was “only joking.” He has started avoiding certain foods again, saying that they “taste funny” or that they’re “too sweet.” This includes foods that he normally consumes with great pleasure, such as granola bars, juice, peanut butter and jelly sandwich, and toast with honey. He started making funny twisting movements with his body, often having to stop in the middle of doing something to bend over and hold a counter or something for balance. He juts his hip out to the side or wiggles his torso. When reading books to him, he twists his head and torso to the side or sometimes puts his ear to his shoulder in a rapid fashion as if a fly flew into his ear. He fidgets his fingers as though he’s typing something. New vocal tics appeared, including a shouting tic (makes a brief shouting noise at random times throughout the day), and a change in volume mid-sentence. He also has been grimacing and putting his chin to his chest or tipping his head backwards, which can make his voice sound funny or distorted if he’s mid-sentence when it happens. He also talks occasionally in “baby talk” or gibberish, and sometimes loses his train of thought or appears to stutter slightly. His teachers have expressed concern that he is “losing his ability to speak” because they can only understand him part of the time. He received early intervention speech therapy from ages 2-4, but made such great progress that they stopped services around his 4th birthday (just before the first vocal tic appeared). His teachers recently asked if we should consider contacting the speech therapist for some “refresher” services, given the regressions they have observed in his speech. He has been very tired and has dark circles under his eyes. His teachers note that he seems very tired at school, too. He is sometimes listless at home and asks over and over again “what can I do?” When I give suggestions for activities that he usually likes to do, he rejects them. He has been choosing activities that seem odd or destructive, such as sharpening crayons or pencils over and over again until they are little nubbins, mushing things into crumbs (e.g., food), scribbling roughly on a piece of paper instead of making a careful drawing (which he usually likes to do), and racing a truck back and forth across the floor and occasionally bashing it into other toys. These types of activities are occasionally part of his normal play, but right now they seem to be the only things he wants to do. Perhaps most concerning of all are the changes in his mood. It feels like a different child has come and replaced our normally inquisitive, focused, and generally good-natured boy. He has had about 4-5 huge tantrums over the past several weeks that have usually resulted in Mom or Dad gently restraining him because he tries to hit or bite. He fights and claws until he wears himself out (sometimes lasting 30-45 minutes), and the tantrums often result in lots of crying. We try to talk to him about what’s going on, to reassure him that we want to help him, to ask him if his tics are hurting his body, to validate how he has a lot of “big feelings” right now and that’s okay. He doesn’t like to talk about any of this, but sometimes validating his feelings makes him cry harder. It’s hard to imagine how scared he must feel about all of these things happening to his body. We went back to the pediatric neurologist last week and he listened to our concerns and watched the video clips we had taken. He did a basic neurological exam (reflexes, balance, etc.) and then proceeded to talk with us about Tourette Syndrome and OCD. It wasn’t a particularly helpful or illuminating visit except for the reassurance that there doesn’t appear to be an underlying life-threatening cause for these developments. We mentioned the possibility of PANDAS with the neurologist and received some pushback. Nonetheless, he made a note to our family doctor to do a strep culture but didn’t think a blood test was necessary. The rapid strep test was yesterday and came back negative. If the longer-term results of the culture come back negative, our next plan is to get a blood test. We are also planning to test for Lyme. We have an appointment in March (earliest available) with a local naturopath who comes highly recommended by our local Lyme Disease support group (even if it’s not Lyme, we think she will be helpful for exploring other issues). Prior to this recent onset of tics, he had two bad colds, which we just assumed were your normal, run-of-the-mill winter colds with a runny nose, coughing, etc. so we didn’t go to the doctor and they seemingly cleared up on their own. One last possibly relevant detail - when he was three, A’s doctor has noted that A’s tonsils are larger than average and we saw an ear/nose/throat specialist at the time. The specialist said that a tonsillectomy might be something to consider in later years so maybe it’s time to revisit that conversation? Questions: How can we help our son? What are the next steps that we should take in trying to get to the bottom of what’s going on? And what types of low-invasive efforts we can try at home (e.g., epsom salt baths) to try to bring him some relief in the short-term? How do you help your young child feel reassured when something like this is happening? What language do you use to talk to him/her about what’s going on? Any other feedback or ideas are welcome. We are distressed and discouraged and looking for any help we can get. ***Thank you for taking the time to read this.***
  24. Hi, please kindly advise me of what natural supplements I can take to alleviate OCD, anxiety, ADD and depression. I am a 41 year old mother who has two wonderful children. I am always the type of person easy to get worry and depressed. I now have two major anxiety triggers- 1) my son has chronic motor tics for 2 years now but under control for now 2) My older daughter has myopia and wearing overnight ortho-K lenes for 2 years to control progression but latest Nov retinal scan shows her retinas are thinned a bit, but no tear no holes. OD did said to me that she is fine and it is normal to have retinas stretch since she is myopic since young age. But since the appt, I have developed very obsessive thinking of the most worst possible outcome of my kids that my daughter may need eye surgery in the future, maybe retinal detachment and loss of vision etc... I cry a lot and my husband keeps telling me Dr said she is fine for now, but only God knows what will happen in the future... My obsessive thoughts is wearing me out...I feel anxious and keep thinking of the possible worst outcome... I am a Christian, I start keep reciting Bible verses, but seems like my brain doesn't believe what the OD said about my myopic daughter who is fine right now...so I am in anxiety and depression, hardly have energy to teach my kids or eat... I start taking Kirkman multi-vitamin for a month since I am low in Vit D. I also start taking a potent high quality omega 3. And Kirkman L-theanine 200mg at bed time but seems no help.. Thanks, Barbara
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