Jump to content
ACN Latitudes Forums

Leaderboard

Popular Content

Showing content with the highest reputation since 08/18/2021 in Posts

  1. Hi @MLee My son does well now and his tics are so minimal that hardly anyone would notice them. Even when they are triggered now - they are nowhere near what he once had in his preteen years! His tics started to improve as soon as he stopped the pharma rx meds, started specific supplements/nutrients, avoided things that triggered his tics. As he passed the teenage pubertal years, there was a continued improvement in the overall tics. He has a good job, works hard, nice apartment. Well adjusted, and, having dealt with TS since childhood, he is a more compassionate and empathic person toward others. He feels TS gave him a lot of insights he may not have otherwise had. Number one tic trigger still seems to be stress - which is often harder to control in this stressful world - and so he continues to create and play music to relax, plus he has a set up that allows him to unwind with video games that is not triggering for him. He has maintained a healthy organic diet, and avoids any food additives that have always triggered his tics (artificial colors, flavors, chemical fillers, MSG etc etc) He also still avoids other environmental things that he has long known were triggers for his tics (eg chlorine pools, flashing lights, artificial fragrances/perfume etc). He continues to take certain supplements that work well for him. Experience has shown him that these are important to his overall health and well being, as well as to keeping TS symptoms minimal. Hope that answers your question :)
    2 points
  2. I don’t post much but am a long time member. I first posted in 2010 over a year after my daughter recovered from a severe 1 year long episode of PANDAS anorexia. That post is still available if you do a search. She was 10 and had overnight sudden onset severe anorexia /OCD. She had high aso titers for almost a year. There were very few people who could help us at the time so it took 3 months to even figure out the issue. She eventually returned to normal almost as suddenly as it came on. She has been great ever since. I posted another update in 2016 when she was starting college. She had no further PANDAS related issues until this year. She rarely was sick (probably because of her over reactive immune system) but we always continued to have her tested for strep even with a slight sore throat. She graduated from college in May of 2020. She was accepted to medical school later in 2020 and started in July of this year (2021). Her school was very pushy with the COVID vaccine which we did not want her to get but she got it anyway because she felt she was going to be prevented from fully participating in everything without the vaccine. I am not anti vax at all. We did delay her 12 y/o vaccines until she was 15 and she got them all separately. I just felt like the COVID vaccine risk vs benefit for her did not warrant it at all. Nevertheless, she received the vaccine in early June. When she started school in July she was loving school! She had met many new friends and was doing great. Fast forward to the last weekend of August, I received a call at 3 am from my daughter. She said for the last 24 hours she has had very severe anxiety and could not sleep at all. She said it started in the middle of the night before so she had not slept in almost 2 days. Things were getting really bad and we had to fly her home. She proceeded to be unable to sleep as well as unable to study. She said she was having trouble concentrating on even simple usually easy tasks. She was completely non functional as a medical student and after a few days took a short term leave from school. Before we even flew her home she had seen a psychiatrist who immediately put her on buspirone and gave her something to help her sleep. She was able to get small blocks of sleep at least but the anxiety was unchanged. She was able to eat but not eating very well. My normally super independent grown daughter was unable to make any decision and she was also frequently coming in my room at night and sleeping on the floor as if she were a child. She was a completely different person and we felt it had to be a PANDAS type situation. Fortunately a lot has changed in 13 years and we were able to get her in with an autoimmune neurology specialist. She typically saw pediatric patients but agreed to see my daughter due to her past history and her current situation. We did extensive blood work. This time the strep was negative. She had a positive monospot test (no recent illnesses) but her Epstein Barr numbers came back negative. She tested positive for both IgG and IgM antibodies for micoplasma (again no recollection of feeling poorly). She was given a course of antibiotics. We weren’t seeing any changes for the better. The buspirone was not seeming to help her anxiety/OCD at all. She said the only difference was she was not experiencing the physical symptoms she was the first week or so like the racing heart rate. The difficult part of this happening to your grown child is that they get to make their medical decisions. She was convinced that this was not autoimmune related and was annoyed I was asking the doctor about the vaccine. She kept blaming herself for everything. It was very hard to watch my typically positive energetic confident daughter turn into a self doubting mess. The doctor wanted to put her on a 5 week course of steroids but she was pushing back saying it would make her gain weight. She was not getting better and started getting pretty depressed. About 8 weeks into this (and 9 pounds lighter) with no improvement she made the difficult decision to take an extended leave from school and she agreed to start the steroid. At the same time, her psychiatrist put her on a low dose antidepressant. Literally a day after starting the steroid I noticed some changes in her mood and she seemed to be doing a little better. She was sleeping better too. She still was definitely having struggles but there was a definite improvement. Some time during about the third week of the steroid she became much better…almost to baseline. It has now been almost another 3 weeks and I feel her demeanor is mostly back to her normal happy self. She is eating well and has put back on a few needed pounds). This was, however, a big blow to her confidence as a medical student. She still believes it might have just been her being stressed but her dad and I know better. She will continue with counseling that we started to help her get her confidence back so she can hopefully return to school as the same caliber student they admitted. We still do not know for sure what caused this to happen after so long. My guess is that it was either the micoplasma or the COVID vaccine or perhaps both. Something turned her monospot positive too but it was not mono. We will be seeing her doctor in another couple of weeks and hopefully get blood work done again. I can tell you one thing is for sure. As they say…”out of abundance of caution” she will not be getting any COVID boosters. I just wanted to reiterate that I’m not antivax. I think the COVID vaccine has saved many lives. I just think that there is a possibility that it could play some role in autoimmunity. We just don’t know the answer yet. Until then everyone has to do that they think is best for their own situation. I just wanted to add my daughter’s story as just another case history.
    2 points
  3. Hi @madimi - there must be something in the air! After a good chunk of time with mild tics, not gone, but really not noticeable, my daughter over the last 2 weeks has seen a big increase in tics and new ones. She has been doing an eye wink/lip stretch for a while but would happen maybe 1-3 times an hour, now it's literally every 2-5 seconds. She's also started to scrunch up her stomach/slight hunching over, incessant scratching all over her body, throat clear/grunt type sound every 5 seconds. I've had two meltdowns privately over this. Frankly every time I see her do this (which is often), it feels like a knife is stabbing my heart. I do hide all my emotions from her, and it still continues not to bother her. In fact, today she went to the park to play, ran into 5 other classmates and they all ended up in our backyard playing and it made me so happy to see. I hold onto the good, and have started my own gratitude journal to write down 1-3 things I'm grateful for every day to get me through this. I've actually started her doing it as well, every night before bed she writes down 1 thing she's grateful for. In addition to all of this, my older daughter (12) who has had vocal tics on and off for years (no motor), developed an eye roll in January. It went away after 3 weeks and two days ago, started up again. She told me today, friends are starting to ask at school what is wrong with her eyes. We've had discussions about her vocal tics, as she also has a very frequent throat clearing tic, so she knows what tics are, but I'm certain she doesn't talk about it with her friends. She has ADHD and I'm also starting to see OCD tendencies in her. Like I said, my heart hurts, I keep trying to see the good, remind myself this increase in activity will hopefully pass soon and continue to be present for my kids. But it's so challenging. I worry about their future and their happiness. You are not alone in this!
    2 points
  4. Just another few data point for you all, my 8yr old experienced a sudden flare in her TS tics within about 8 hours of the pfizer covid vaccine #1 in November 2021 which lasted a few weeks. For me, when I got my Covid booster in November 2021, an old lumbar spine L4 nerve compression issue that I had (and had not acted up in the previous 8 months) flared within about the same timeframe (8hours) of receiving the booster. Not saying not to get the vaccines, but there is definitely an inflammation thing going on.
    2 points
  5. My son is 19 years old now but looking back all these years, his tics/Tourette's started after several vaccinations. Is there a link and if so, is there one particular vaccination that has been correlated to Tourette's or Tics?
    1 point
  6. Katreya

    Puberty

    Yes, and for us, those pathways are also affected by excitotoxins (the worst for us was MSG) -- have a quick gander at some of the obvious foods you might eat, like noodles, chicken-flavoured potato chips, soups (anything beef/chicken/veggie flavour) it literally has like 50+ alternative names to hide it: Flavour enhancer 621, monosodium salt, monohydrate, monosodium glutamate, monosodium glutamate monohydrate, monosodium L-glutamate monohydrate, MSG monohydrate, sodium glutamate monohydrate, UNII-W81N5U6R6U, L-Glutamic acid, glutamic acid, monosodium salt, and monohydrate. and if you think it could be a cause, check out the actual only scientific article that comes up on Google (after the 20:1 saying MSG is 'totally fine and safe'). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5938543
    1 point
  7. MLee

    How is your son doing now?

    Thank you Chemar. So happy for him that things are going so well! It’s also nice to see that things progressively got better as he got older. What a hopeful post. Thank you!
    1 point
  8. Hey Chemar! Agreed. I think every person probably has different things that the body views negatively. Yes, she doesn't do well on organic produce. She grew up on strictly organic produce. Interestingly, she would often seem to do well with produce that wasn't organic at something like a wedding reception. I sometimes wonder if it's because organic is often more ripe (started the fermentation process). But, we still notice the beginning of negative affects (irritability) with eating fresh picked fruit from our trees. I know we don't have everything figured out. Perhaps she can handle certain produce, maybe cooked produce, etc..., but we are extremely grateful that God has given us direction to figure out enough for her to be tic free.
    1 point
  9. Sorry Luckyone. I agree with you that ability to participate in normal activities should not be hinged on your personal medical decisions; and also our adult children get to make their own choices whether we agree with them or not, and they get the natural consequences as well. Just to share, I have been here for a very very long time going through Pandas and Lyme etc. We FINALLY hit on our proper diagnosis of functional B12 deficiency probably due to a genetic factor of Transcobalomin 2 deficiency. It is insane that "I" had to figure this out through my own research and can't even get proper medical documentation, never mind treatment, for this "known by the medical community" type of problem. And yes, my daughter's issues started with a vaccine as well. Mercury, (removed from most vaccines in 2000) probably caused her primary deficiency and she has not caught up since. (She is 23). We finally are treating her properly. READ Could it be B!2? By Sally Pochalak
    1 point
  10. Hi Jacke My son had to have some vaccines for a trip abroad when he was younger - but although I was concerned - his tics did not seem to be altered after the vaxx. However I know some parents have found any vaxx to be triggering, and I wonder if that may be due to the actual immune response rather than the vaxx per se. I say that as some people with tics (my son & dh included) seem to tic more when they are ill, and our physician once suggested the immune system ramping up could be the trigger? Just a thought to add to this discussion.
    1 point
  11. My 18 y.o. daughter was slightly flaring from mold exposure and then had to get the Covid booster. She is flaring VERY badly now. It started about 2 days after she received the booster. It has been almost 3 weeks now. We are pretty sure it is mast cell activation and are treating her with H1 and H2 blockers (Xyzal and Pepcid) and D-HIST Jr. Also, Histamine Block before meals. She is VERY slowly improving. Good info about MCAS: https://hoffmancentre.com/12-tips-living-mast-cell-activation-syndrome/ and from the same site: https://hoffmancentre.com/treatments/mcas/ She did pretty well after the first two shots, just a mild flare for a few days. I'm thinking things were bad this time because she had recently been exposed to mold, so her system was ramped up already. We are all tripled vaxxed in our house, but I disagree with forcing people to get the shot to attend school, work, etc. People don't understand what PANS/PANDAS and MCAS people go through.
    1 point
  12. Hi @madimi I’ve read through your posts and as others have said, you aren’t alone. My 8 year old daughter has had tics since June 2020. We’ve went through many different types. In fact, re-reading my posts on these forums actually reminded me of some of them that I had forgotten about as they haven’t been around for a while now. Her tics I would say now are on the mild end, she does the occasional left eye wink, and some nose scrunching. The one that I notice she does a lot is scratching – she just scratches everywhere. Now I’m not sure how much of a tic it is vs her dry skin as we live in Canada, and she has a history of eczema. Her vocal tics, I haven’t really noticed for quite some time now. And this is how it all started for us – sniffing that went on for 5 months non-stop – like every 5 seconds. It was crazy and sent me into a spiral. Last summer was the worst for me as that was when we hit the 1 year mark of tics and I knew that meant the tourettes diagnosis. I had to seek counselling for myself, which really helped. I found someone who actually does CBIT and works with children with tics, so knew she would understand me and what I was going through. I also joined many Tourette themed facebook sites, which frankly did not help and sent me into a deeper spiral. I’ve learned that the people who are having milder symptoms and just getting on with life are not the ones posting on those websites. I’ve learned no two people with Tourette’s are the same, so where this is going to go for my daughter I can’t predict, and I am one of those people who try to forecast the future and think the worst, so through therapy I’ve stopped doing that. I have to say that not once has any of my daughter’s tics bothered her, not once has she said anything to me about them, and not once has anyone at school said anything to her about them. I continue to hope that they stay mild and unnoticeable except to me who is still always on the look out for any changes! We tried gluten free for a few months and I saw no difference and she was miserable doing it, so I stopped, I reduce gluten but haven’t eliminated it anymore. I give her magnesium and B vitamins. To be honest I’m not sure if it helps. Through this, I identified that my older daughter age 12 has had tics since she was about 7. Now that I know more about it, I think back through her childhood and the early days I remember she had a cough that lasted months after a bout with a cold. We took her to a pediatrician and they didn’t find anything wrong and said it would go away – which it did after about 7 months. I also remember for about 2 years she was always humming probably from age 8-10. It bothered her classmates, her teacher talked to me about it, they would tell her to stop and she wouldn’t. I remember having discussion after discussion with her that she needs to stop and when I realized it was a tic after the fact I felt horrible about it. She still continues to have vocal tics – mainly throat clearing. And in January I noticed her first ever vocal tic – eye rolling. It only lasted 2 weeks and hasn’t reappeared. So, my advice to you: · Stay off facebook sites – stick to medical papers · Ignore the tics and don’t call them out for your child · Seek counselling for yourself – this was hard for me to recognize that I needed it, but I’m so glad I did it · There was one podcast I started listening too – Tic Talk – two guys from Ottawa talk about their Tourette’s experience and have guests. They haven’t had a new podcast in a couple of months. But what I liked about it was that they both had different journeys – one wasn’t diagnosed until age 19; the other was diagnosed maybe around 10 and from what he tells, had it pretty severely. While both still have symptoms of it today, they are doing great, don’t let it rule their lives, have relationships and one has kids. I was so appreciative to hear their stories. · While it’s great to hear what others have done and the outcome for them, know yours could be completely different – better or worse, you just can’t predict what will happen Take care!
    1 point
  13. @madimi, glad you found my response useful. Regarding your question ' how to handle tics at school with other students', I recommend to be open with the teacher and educate her on what tics are and explain that your son is not doing them on purpose and they are uncontrollable. Honestly, kids are least bothered and I am sure your son's classmates will also not be pay much attention to the tics. You can request the teacher to give your son small breaks during class for him to either read a book or sip some water for dry throat caused by constant coughing. I felt like the cough/throat clearing was triggered by certain things. For example, my daughter used to do throat clearing more frequently while eating. Throat clearing tic was present longer than other tics and stayed for almost 3 months. CBIT is recommended kids who are of atleast 8 years or older as practicing CBIT techniques require a lot of patience and commitment which younger kids may not be able to do. But I recommend CBIT highly since they don't teach kids to suppress their tics but instead train them to do an alternate/competing action instead. For example, my daughter had a tic where she would lift her chin to the ceiling. During CBIT the therapist asked her to pull chin down whenever she had the urge and after practicing if for few days, the tic itself was gone. Regarding Screen time, it was definitely hard but the best thing we ever did. Because of my daughter we took away screen time from my elder son too. We had to educate him that we are doing this to support his sister and we gradually lowered his screen time. We instead did lot of family hikes, board games and just talk to each other, tell jokes etc. which made kids wanting less and less of video games. Lessening screen time along with healthy eating and exercise is what helped the most.
    1 point
  14. Hello @madimi I see you have also been in discussion with some other parents here and am so thankful you have some support and are able to express the things that are troubling you. Please try not to be scared - I know that is hard but honestly, for most, things do get better as children grow older - whether because the tics reduce, or because the person with tics learns how better to live with them. Many of us who have been here a long time can attest to how, even with Tourette Syndrome, our children have grown into productive adults. Sometimes the challenges in childhood can help to make them more caring and compassionate, as well as more determined not to let tics control who they are. Our family was greatly helped by many of the natural approaches discussed here at ACN/Latitudes, so I do encourage you to also look at the main section for some very helpful info www.latitudes.org
    1 point
  15. Once again thank you very much for all the helpful tips, and i wish you and your daughter all the best and hopefully better days with less worry will come for us all!
    1 point
  16. Get any help you can. I understand you fully and we've been in the exact situation multiple times. I can not talk for your child but I know my daughter can catch me easily if I watch her tics and this makes her nervous and also negatively effects the tic frequency. I still get caught time to time, but I thought myself to make her comfortable during the peaks as it's the not the easiest but shortest way out for both of us. I think stress certainly has an effect. Under negative stress I see the tics rise quickly. I try to apply positive stress as much as possible, like a physical competition , memory games, any thing that would direct her concentration to somewhere else. Believe it or not, every 30 sec is not really a high frequency. I had so much worse on some tics. Just today, she started blinking both eyes same time (not like blinking but like closing and opening) , we had this tic couple of times before. Sometimes today it got really frequent. A few minutes after I told her, it might be better not to use iPad as her eyes look tired, she came and told me, I don't want to do it (close eyes) but I also want to ... trying to explain herself. I said, it's quite ok and to do whichever she feels better, closing or not closing and added it will go away in a few days maximum anyway (that's some good will) Back to my first sentence, get any help you can, if you are not well, you can not help.
    1 point
  17. Greeting from Dubai, I know how difficult it's, at least at the beginning. Tic disorders are a very wide spectrum and every child is wildly different though there are similar patterns shared among them. One thing that is very clear to me is, basic tic disorder is significantly common, I've seen it at several of my friends/relatives kids and if you think how uncommon it's among adults, you can understand that many of the kids will get to a point it's not easy to detect. There are several kinds of tics, but I think vocal/motor tics is a very bad way to categorize them, also meaningless. As many believe, I think Tourette Syndrome naming is not very meaningful. Coughing is an physical activity and unless your kids is doing it for the sound of it (very unlikely) it's more or less a motor tic. Our daughter also made some short noises like 'hih' when she had abdomen related tics. I did not consider them as vocal tics. As I pointed out in earlier posts I found that my kid had less tics when she felt more confident and I focused adding her skills that would make here feel confident of herself when under pressure. It's impossible to know exactly if that helped or not, but I don't think it caused any harm. Don't worry tics will wax and wane, peak points will start getting lower and lower after one year usually and every following year it seems to get better in our case. Do we have tics, yes, but to a point that I usually not notice them. But we still have some peak periods after four years and I repeat my self to hold on 1-2 weeks...
    1 point
  18. I wanted to add that I was listening to the Dr. Robert Malone podcast regarding the vaccine. At about 1 hour 39 minutes he talks about the spike proteins crossing the blood brain barrier which can cause inflammation and other problems. It’s interesting since this is what the antibodies do in PANDAS…cross the BBB and cause inflammation. I can’t help but think there is a similarity in the two. I guess in time maybe we will know.
    1 point
  19. I am also very appreciative of you sharing this. It is so much harder to pin the issue on the vaccine when there is a couple of months between the shot and the sudden onset. I take it that it was the first shot in early June, and then the 2nd shot 3 or so weeks later, and then the flare was late August. They typically don't follow issues after 6 weeks, which is a problem because then anything that happens after 6 weeks is immediately dismissed (which is very wrong, in my opinion). Have you considered reporting the event to the VAERS data base? Anyone can report. There is also a survey for P/P patients and reactions to the Covid-19 vaccine being run by the International Pans Registry (IPR). My guess is that she would have to sign up herself to do it. I don't know if there is anything in the survey criteria that would exclude your daughter, but it is very important (from a science point of view) for this kind of story to get included in such a study, and at VAERS (even though they will tend to discount on account of the timing).
    1 point
  20. FraggleRed

    Vocal tics

    My daughter has had a throat clearing tic as well as a squeaking tic. BUT she is doing remarkably well and is not medicated. The average person would never know she tics. I know that vocal tics are viewed with dread, I just want to assure parents out there that simple vocal tics are no worse than simple motor tics.
    1 point
  21. Ok, I'm struggling big time again. All I'm doing is obsessively googling information on Tourettes. I'm having a hard time being present for my boy because I watch constantly looking for other tics. My wife is very bothered with me and keeps telling me to get out of the house and go for a walk, but I can't. I've lost 12 pounds, and I'm exhausted. My wife things I am making to big a deal...she doesn't see the tics like I do. She thinks I am overreacting especially since our pediatrician said it is not TS. I do have a psychology appt. tomorrow because I really do feel like I'm going mad. I just don't know how to handle all of this. I so desperately want to believe what the pediatrician said, but I have read too much on the Internet to know that they typically will offer a false sense of security. I'm just so scared. If you read this...thanks for listening. This is the place I turn when feeling the most overwhelmed.
    1 point
  22. GABA is the best supplement for intrusive racing thoughts. For excellent help, get the 900mg dose avail on amazon.
    1 point
  23. Have you seen the book "Toxic" by Neil Nathan. Lots of advice in there, some that you can try without practitioners. But, be careful. I think some of the prescriptions for Lyme might be covered by insurance...but we don't have Lyme so I have not looked into it as much. This alternative stuff is so expensive.
    1 point
  24. LMama

    Hope for recovery

    Sending hope to new parents out there struggling. There is hope. My son is better now. He’s almost 17.
    1 point
  25. A really well done and helpful video on dealing with those Thoughts !
    1 point
  26. wisdom_seeker

    Pans and mold

    Oh do I understand the stuck and pissed, and $$$ stressed and tired. If you want to talk over what you've already done and seen, and brainstorm, give me a call. I'm not an environmental hygienist, but I've unfortunately dealt with hidden sources. And as the CIH I work with repeatedly told me, "an outlet or hairline crack in the drywall is like a highway" and the killer thing is that "every time you change air pressure, say by closing a door, it forces mold fragments & mycotoxins out through those gaps". So if I can help with the detective work, I will. Where are you located? Lucy PS. I'm a night owl on PST, in the SF Bay Area. Send a DM.
    1 point
  27. Yes, there are numerous posts here related to screens and tics. Try setting your devices on the night light setting and even using computer glasses (you can get those unmagnified if you don't need glasses) It helps with the glare and flash that can sometimes trigger tics. Also search info on Irlen here. Daylight lamps used at night can also help. We focus mostly on natural treatments for tics and Tourette's here. Do take a look at out "Useful Thread" pinned to the top of this forum as you may get some extra tips to help in general https://latitudes.org/forums/topic/2459-useful-threads-info-for-tourette-syndrome-tics/ Our admin Sheila Rogers also has 2 excellent books that may be of help https://latitudes.org/store/tourette-syndrome-triggers-book and https://latitudes.org/store/natural-treatments-for-tics-and-tourette-syndrome-book/
    1 point
  28. My daughter has one of the most severe and drug-resistant cases of what falls under the big umbrella of a strep-induced autoimmune disorder that left her with severe neurological and significant joint involvement. For those who don't remember us, my daughter was an exceptional student and athlete, and world's happiest and easy child to raise - until the bottom fell out two years ago. In a matter of a days she suddenly and frighteningly developed Sydenham's chorea, tics, mutism, mood swings, joint pain and swelling. aversions, delusions, rage and host of other heart-breaking symptoms. It has been a tremendously challenging road and so as an unwilling seasoned veteran here is the advice I am giving to anyone who thinks their child has PANDAS, PANS, LYME or any other unusual/frustrating unnamed condition. 1. Do NOT waste time. The first time you see symptoms that do not clear up permanently after a round of antibiotics, get real help. Any of the symptoms I have described indicate your child has neurological inflammation. For the majority of kids, this could mean your child has cross-reacting antibodies, that are attacking your child's healthy tissues. For many kids this could involve brain, heart or joint problems so you absolutely need to rule out any potential damage, especially heart involvement (this was the one potential result our daughter had). The longer you go, the more damage that can result and the harder it will be to treat. This means: 2. Your child has a PHYSICAL disease with psychiatric symptoms resulting from inflammation so you need the right specialists. If your child has recurrent or ongoing flares after antibiotic treatment, and you are only seeing a psychiatrist or PANDAS doctor who has not done a full spectrum of physical diagnostics (MRI, heart ultrasound, tests for Lyme, allergies, inflammatory markers, titers, etc.) then ask your pediatrician for a pediatric neurologist referral. Remember this is PHYSICAL. I can't emphasize this enough: If you can, go see a neurologist and an immunologist. 3. It's not in a name, so don't get stuck with a label. I know we all want that relief/satisfaction of saying my child has "PANDAS" or some other condition, but that can predispose physicians to start treating before a real diagnosis and plan is put forth. For example, we ran off immediately to USF for PANDAS evaluation, at which they gave us some surveys, talked to us and then tossed us some antibiotics with a diagnosis of PANDAS. Not one physical diagnostic test was done and we were foolish to go along with that. In time, they would have ramped up to IVIG, etc....but I would never have known that my daughter could have had heart damage. For those wanting a name., honestly, ( For the math-minded I think we are talking about a spectrum of autoimmune diseases that could be plotted on a coordinate plane of X and symptoms on Y, to find that our kids are scattered all over the place) I think there are as many names for these diseases as there are kids. Just call it, "Insert your child's name here" disease. I am kidding - but also not. The many presentations of these diseases explain why they sound akin to others (like Lupus) and yet different when we talk to each other here. Also, never mention diagnosis to insurance providers. Many are looking for reasons to reject claims so let your doctors and insurance companies play the coding game. 4. Take meticulous notes regarding symptoms.Take pictures and video even at bad times. Trust me, you will forget. Look for subtle things like handwriting and appetite changes, sleeping changes, expression of unusual ideas, reduced speech. When first met our neurologist, I came in not with a disease name but a table of symptoms, date of onset, severity and frequency. I wanted them to diagnose without predisposition. 5. Don't worry about the bandaids - yet. I know a lot of us sweat everything from glutens, to certain amino acids to micronutrients. Until you rule out allergies, known genetic deficiencies....don't lie awake at night and wonder whether or not you are missing some esoteric piece of the puzzle. Feed your child well, make sure they are getting plenty of vitamin D (low is usually indicative of a chronic inflammatory process), and as many nutrients as they can from real food. You are a good parent, and while the little things will help along with a healthy lifestyle, there is no magic pill. Proper diagnostics will eliminate a lot of concern about allergies and root causes so you don't waste a fortune in time and money trying this and that. We are desperate and vulnerable so read everything with a critical eye. 6. Trust your gut and assert yourself. I went to FOUR doctors and had three ER visits with my daughter, shaking my head and respectfully telling them we were moving on when they told me she was probably just depressed. WRONG. (Tangents: I think our world, present and past is full of kids who are under-diagnosed for physical problems, and there is NO difference between mental health and health. It's just health). 7. Your child is not your child. There is no way that sweet baby of yours would ever do the things he/she is doing if he/she was healthy. Easier said than done - but do not take it personally. That said, reasonable consequences apply. If your child is having severe outbursts, you have to remind yourself: THIS IS THE DISEASE. Say it like a mantra if you have to. 8. Get healthy and fit. I have had to care for my daughter for two years 24/7. Most of you will not be like that. It's going to try your body, mind and spirit. It's going to be hard so you need to be battle prepared. At times, you are going to be scared, angry, tired, frustrated and lonely so you are going to need to be at your best like no other time in your life. Get sleep and don't worry if there are fingerprints on the appliances and the car needs vacuuming. My family has learned that no matter what, I am taking an hour a day to run or surf. 9. Get brave and tough.. People closest to you are going to hurt your feelings, and give you unwanted advice. Head them off at the pass and tell them that you are on top of all the research and protocols (you need to be), that this is going to be stressful, that you are so grateful for their support, but that the things you can't have them do include _______. For me, it was advice on how to parent...like when my daughter would be defiant, or when I chose to keep her out of the public eye when her tics and chorea were severe. Doing that up front will save all of you a lot of misunderstandings down the road. The "Loving but Uninformed" in your life will give you some bizarre advice at times; take it in the spirit in which they meant it. At the same time, get soft. For me, this meant learning to accept help from other people. I have always prided myself in being able to be self-reliant, being able to do it all, but with this spectrum of disease - forget it. I have learned that letting people help is not a sign of weakness, but an acceptance of kindness that can really make a difference. The people around you who really care want to help. Let them. 10. Slow down the clock. You aren't going to get it all done. At times you are going to be late to school. Sometimes you won't get to a place at all. You might even miss a major life event like a close friend's wedding, or as it is in my case...your chid might even miss a year of school. It will work out. 11. Read it all, get informed, stay on top of it...and then walk away at times. You cannot live and breathe this everyday without becoming obsessed in an unhealthy way. My daughter loathes it that I pick up on every tic, and my husband got tired of my talking through the study results in the third standard deviation for the sample size of 12 for the methylation of a certain gene expression (whoa, sexy AND romantic) when we crawled into bed at night. (The main reason I come and go from this website .) 12. Go out at a minimum of twice a month for the evening. The only rule: Thou shall not talk about thy child or thy child's disease. Also keep something out there a month or two away to look forward to...beach, trip to parents, buying a new sofa, camping trip. Finally, don't forget the healthy siblings and your SO. As much of a nut as I am about healthy eating, sometimes a little love and acknowledgement is as easy as a box of walnut brownies that can be mixed and tossed in the oven in two minutes...with a PostIt note alongside. After two years of IVIG, Cellcept, Rixtuximab and Cytoxan, we are finally knocking down the world's most persistent immune system and our daughter is slowly getting better. Chorea is gone, tics gone, OCD gone, moods better, tremors gone, ataxia gone, mutism gone, catatonia gone, sleep patterns good, aversions gone, eating well, engaging with the family, smiling, laughing and has some quality of life. Long story short: Treat physically and if a child like ours (who is probably one of a handful of the most profound expressions ever on this disease spectrum) can get fully back on the happy and healthy track - yours will too. I am not editing. I used to. I don't anymore. See? LOL (Ok, confession... I came back and read this AM, and gently tweaked the typos). A thousand blessings your way!
    1 point
  29. my son uses Boswellia Extract by NOW as an anti-inflammatory with great success It's a combo of Boswellia and turmeric/curcumin....potent anti-inflammatory action Boswellia itself has also been found helpful for OCD also, as an FYI for anyone using ibuprofen...CVS Pharmacy now makes their own brand on without that nasty added dye!
    1 point
×
×
  • Create New...