cory2605

Thank you, I have PM'd her a couple times and she is the one who sparked my interest in homeopathy. I guess I was just grasping at straws thinking his lab results meant something was off that was 'very simple' to correct. But I guess such complex symptoms as our children have is going to require a lot more than a simple fix. Thank you for your reply! PM Stephanie2 about homeopathy. She really knows a lot about it, and has had good luck with it.

Excuse my ignorance, but what is GAP coverage?

It must have been a typo. I don't have the lab work in front of me now but I do remember it was about 15 numbers higher than the upper end of the range. It probably doesn't mean anything out of the ordinary for a child going through so much growth and change but I was curious since it as well as creatinine/bun ratio was off 2 years ago as well. We have all sorts of auto immune disorders in my family history including diabetes, thyroid and rheumetoid arthritis. Thank you for your reply!

Hi, my son was diagnosed with probable Pandas/Pans a couple years ago. He was part of a study at the Rothman Center along with many other children. Although his blood test wasn't conclusive as to PANDAs/PANS, his sudden onset of OCD, fears, and tics qualified him for the study. Anyway, I recently had more blood work done on him to compare it to the old blood work. A couple things remained the same and I am not sure what it means. His MCHC on his CBC test was flagged as high at 34.5 (range 38-30). It was high last time as well. Also, both times his Bun/Creatinine ratio was high and his creatinine was low. They also tested for Mycopl. Pneu. IGM but it was negative. We are not seeing anyone for his Pandas/Pans because at this point it is mild and our insurance doesn't cover anyone familiar with it in our area. Dr. M did agree recently to talk to his Pediatrician (due to him getting strep) to order these last labs. She is really awesome. But for more assistance we need to go back and see her, 2 1/2 hours away and not on our insurance. The more I research, the more I am considering investing the oodles of money in Homeopathy but are waiting until he gets back from vacation at his grandmothers. Anyway, does anyone know WHAT the high MCHC could mean? Thanks!

Hi, I read your post regarding your son and his intrusive thoughts/fears. I am not an expert by any means, but am a mental health counselor as well as having experience in dealing with OCD/ and severe intrusive thoughts as a child myself and now with my own son, 9. I remember having the scariest thoughts and the worst part about them was wondering if I was actually going to act on them because I 'thought' them. My psychologist at the time told me that I WOULD NOT act on them if I did not want to. The intrusive thoughts are usually about doing the things we most often DO NOT want to do. The disorder that some people might confuse this with is a type of schizophrena which are 'voices', not thoughts. There is a big difference in the disorders and their manifestations and brain makeup. Additionally, my son's therapist (psychologist) has told him the same thing (30 years later!) about his intrusive thoughts. They are just thoughts, or fears of doing what we most often DO NOT want to do. I know it is heart wrenching to know what our children our going through......but that is one thing I personally feel (and 2 professionals) you don't have to worry about. My prayers go out to you!

What dosage do or did you use of GABA? My son is 9 and 80 pounds. I'm thinking about introducing GABA to calm his tics and intermittent fears/anxiety. I have thought about 5HTP but he shows no signs of depression....just restlessness, a little OCD, tics and at the moment, fear of being outside alone. Thanks Trish

I am sooooo happy to hear of a success story using a homeopathy treatment. I hate the thought of treating my son with antibiotic after antibiotic and possibly IVIGs. We are about to start the whole process of treating him again due to his most severe symtoms returning after a year of tolerable symptoms....never totally in remission but during that time I thought it was not possible. I also live in Florida, I believe we spoke on the phone once when my son first began this nightmare. You helped me a great deal and I can never thank you enough. We were able to be part of a study Dr. Murphy was doing and that pretty much convinced us of his PANDAs diagnosis. I would like to talk to you or read your blog if you can give me the website. Homeopathic treatment for Pandas makes so much more sense to me that I would like to try it before the standard route. So I'm assuming the regime you all are on calms or treats the tics and OCD symptoms as well? Thanks, Trish

Hi, I guess I should have PM'd you but unsure how to do that at this point....I'm not totally familiar with this forum yet. But anyway, your post was the first post I have read that mentioned your child's PANDAs set off by the flu mist. I have always thought that about my son as well. He was given the flu mist and a regular flu shot at the same visit. A couple weeks later, the tics started and then the OCD. Oddly enough, my daughter who received the same vacs on the same day, was diagnosed with a 'freckle' behind her retina soon afterwards as well. This is very unusual in a child.....and they have discovered it has grown as well (even more rare). She will possibly have radiation on her eye in a couple weeks if they find the shape or color has changed on her Monday appointment. So of course that got me thinking about the vacs and a possible link to the eye freckle. Anyway, thanks for your post about the flu mist. My daughter is suppose to have another vaccintion before 7th grade and I'm debating this. Trish

Good for you for role modeling to your son that 1.) Hygiene is a good thing 2.) Manners are a good thing! and 3.) It's okay to be persistant and refuse something that you know is not good for you despite pressure from others. Not to mention how you went to bat for him against an over controlling, spoon-licking, phlegm flying, mother-in-law! Ooooh, that made me made just reading it. I think I would have developed a 'sudden onset' of a severe migraine which would have made it impossible for my son and I to stay and visit. Yeah Mom!

Hi, You seem like you are off to a great start with the concern about a good clean diet, interest in supplements and getting your son in to see a good Psychologist. The Psychologist will give him tools for life regardless of what is causing his tics/OCD like symptoms. My son also started his tics/OCD at the age of 7. It was sometime in February I believe. I wondered for awhile if it wasn't brought on by the flu vaccine he had a few weeks earlier for awhile. Still a bit curious but moving forward. We tried eliminating dairy which is a big trigger for many kids but it didn't make a difference for my son. We have found he is gluten-sensitive and really spaces out when he's had any time of gluten. It's so obvious now that I can tell when I pick him up from school if they've had a birthday party or some other type of celebration where cupcakes, pizza, etc. were served! I agree with Cj60 as far as PANDAs. Particularly since he displays some OCD symptoms and the fact that theses symptoms (tics and OCD) seem to have come out of nowhere. You'll hear some parents on the forum compare the OCD symptoms to almost a 'tic' in itselfe. My son hides his OCD quite well particularly when they are manifesting as intrusive thoughts but other times it is obvious to me as his mother that he is obsessing about something and can't let go of it. I will pray for you, your family and your son as well as everyone on this site that is in the middle of this tremendous challenge. GOD BLESS! Trish

Hi, we have had lab work done but not to the extent that my son is going to require to find out where the problem lies. Our insurance, according to my husband who works at the hospital, has no agreement with the labs that are on our insurance plans as far as what they can charge us. After we have met our deductible, however, then the insurance company has an agreement with the lab as to what THEY will pay them. But it is what it is and I just need to look at the numbers and see which is least expensive in the long run.....because it has to be done and I don't want to put it off. Thanks for your help! I'll call Quest and LabCorp tomorrow.

How would I go about finding out if my insurance company has the same sort of agreement with a lab? Just call them? In addition, when I go to a Pandas Doctor and they take blood for lab work, do I make the request that the Dr. send the blood work to the specific lab my insurance (hopefully!) has a contract with? Ughhhhhhh! My brain hurts Thanks in advance!!!!!!! Trish

Thank you for the additional information on Dr. Rossignol. I believe they are on our insurance plan wnd will contact them today. I appreciate your kindness! We are just doing Nature's calm at nighttime as well as inositol. He helps with anxiety and sleep. I had thought about taurine but was afraid it would make things worse....I've heard good and bad about it. I'm not sure if it would be okay to add to his current regimin but I will look it up. But first, time to contact Dr. Rossignol! Sincerely, Trish

I don't know enough about the effects of various vaccinations, but I can tell you that my son's PANS/PANDAS symptoms first began after he received both the swine flu vaccination and the regular flu vaccination at the same Dr's. visit. It actually was about 3 weeks after the actual vaccination that I began to notice facial tics, obessesiveness, etc. And possibly completely unrelated, but my daughter had the same vaccinations that day. With in a couple of months, she began complaining of vision problems. We took her to an eye Dr. and yes she was near sighted, but he also found a 'freckle' on her eye (behind the retina) which in the last year is being treated as possible cancer. We will be going down to the eye institute in Miami again in two weeks to see if the Specialist deems it necessary to do radiation. It has grown, that we know for sure. Eye freckles on children is very rare, and for them to grow is even more rare! It's pretty coincicental in my opinion...... But I will pray for your children and for you to be given wisdom to make the right decision. Trish

Hi all, I was reading some information on the PANDAS NETWORK site and made a list of some of the commonly requested lab test to determine possible PANDAS/PANS. I know that many test will prove inconclusive and not reflect what is really going on, but some of the tests I would definately like to have done. The question I have is which is least expensive yet reliable; 1.) going through the regular route of having the Dr. order the bloodwork/test and having it sent to the lab that is on your insurance plan; or, 2.) purchasing them yourself through a website such as 'Ineedlabs.com' and having your blood drawn at one of their affiliate labs nearby. I read on CNN.com that the savings can be up to 60%. Our deductible is $1,000. Yet looking at the cost of some of these test, it wouldn't take long before we met the deductible going the regular Dr., lab, insurance, route! Any advice or words of wisdom? Thanks! Trish

Thank you! I will look him up. Trish

Hi everyone, a couple years ago my son, then 8, began having facial tics and soon after started obsessing about things and having irrational fears. After lots of research, a slew of local Doctors (hah!) and tons of tears, we found Dr. M in Tampa and my son was accepted as part of a 3 month Pandas study. This was a 3 hours drive for us but we couldn't pass up the opportunity to work with Dr. M. She was wonderful as well as her staff. The did every test and then some. Based on the test results, and even tho his titers were not elevated tremendously, she felt he could very well have PANDAS. As part of the trial, we would be given a supply of antibiotics for him to take, however we would not know if they were actually the antibiotic itself or a placebo. After three months, we found out it was a placebo, which I was happy to discover this since I hadn't seen any change. During the three months, we made visits to Tampa for follow ups and consultations. When we discovered we had been given the Placebo, Dr. M prescribed an actual antibiotic for my son and it did help. However we were so new and not well versed on PANDAs so we chose not to continue with the antibiotic long term. We went the gluten free, preservative free, food coloring free diet. In the 1 1/2 years, his symptoms have been mild (tolerable tics, few obsessions, and no fears). In November, my son came down with a cold and even after the cold symptoms were gone, he had little energy. In addition, his tics increased. The Doctor did a strep test for both he and my daughter (not Pandas) and both had strep. They were prescribed antibiotics and they seemed to get better. Buttttttttt, his tics since then have just gotten worse. And now, his fears are back. It's time to look at the PANDAs possibility again. In a nut shell, we want to try and find a local Doctor in hopes we can stay local. Cost is a big factor, unfortunately. I would love to see Dr. M to re-evaluate him and event treat him but that's a little beyond our budget. Does anyone know of a Doctor near Melbourne, or Cocoa Beach Florida who would be qualified to do some more testing and/or treat my son for possible PANDAs or PANS? I don't know why I had to give everyone the whole story other than writing it all out helps to clear my head and releive stress! Thanks for listening (reading Trish

I'm sending prayers for you and your family as well. Would some soft music from a CD help? We use to put in this one CD when we traveled with our kids, it was an instrumental, and it put them to sleep in minutes. God Bless You and your family. We live in Florida and the weather is very pleasant here now, if that helps!

Hi hel24, My son also had a sudden onset of tics at age 7, as well as sudden fears and emotional melt downs. He also became 'spacey' and inattentive. I researched and researched, went to Dr. after Dr., I even enrolled my son in a Pandas research study. As a result, I have come to a few theories: 1.) His tics, fears, and OCD behavior are/were the result of an autoimmune disorder 2.)The H1N1 flu vaccination he had received a couple weeks prior (they gave him both the regular flu and the Swine flu shot in one visit) was the catylst for him in this autoimmune disorder 3.) I believe that children who do begin suffering from tics, OCD, etc., often have a genetic history of autoimmune disorders. I have also found several things which trigger his ticse his tics as well as supplements we add and foods we avoid which have diminish his tics. But the biggest help was PRAYER! This time a year and a half ago, I wanted to die as I couldn't bear to see my son 'suffer'. I actually think I made things worse for him by becoming totally and completely obsessed (OCD?) with his problem and finding a 'fix' for it. The stress and the message to him that he 'wasn't okay' probably served to make things way worse. But, being the faithful GOD that he is, my prayers were answered and for now he is a HAPPY, seemingly well-adjusted and extremely intelligent 9 year old kid with lots of friends. At first I thought the tics were the worst thing in the world and everybody would make fun of him. This hasn't been the case and generally kids can control the tics at school and let them out when they come home. Anyway, here's what we found: Larger, high definition T.V.'s viewed from a distance do not cause the onset of tics as the old style 'flickering' t.v.'s (We actually went out and bought a large flat screen we we realized the difference it made and we are a budget conscience family!). Video games trigger tics big time for our son, particularly the Japanese animated ones. Basically, the more fast paced, the worse the tics. Gluten, food coloring, high fructose corn syrup and excess sugar: We started out eliminating dairy...that had no effect. We then removed gluten and we definately saw a major improvement in his spacey behavior (more than the tics). Food coloring, high fructose corn syrup and sugar maee the tics way worse. Excercise in the form of outdoor play helps a lot to release the pent up energy. Stress makes his tics a lot worse. If he is sick his tics also get a lot worse. In fact, I have taken him to the Dr. twice in the last two years suspecting a virus of some sort even though he was basically symptom free. The first time he had the flu and the second time he had strep, as did my daughter who just happened to come along for the ride! In the evenings I give my son a Magnesium supplement called 'Kid's calm' which is awesome. I also began giving him a B Vitamin called 'Inositol' for his mild OCD and periodic fears. It also seems to have helped quite a bit. I hope you get a lot of encouragement and answers from this forum. I know you feel very alone and afraid right now but since my son began having these tics 2 years ago, it's amazing how many dozens and dozens of people I have since noticed that have the same thing. I would never had noticed had it not been for my son. Sincerely, cory2605

My 8 year old started having tics and intrusive thoughts approximately a year ago. After lots of researching (and Doctors with not much help) our family decided to change the way we ate. We are gluten free, preservative free, and no food dyes. It's not so hard once you get the hang of it. Although my dear mom gives him foods she thinks are fine (NOT) when he goes to her house. Anyway, I have him on Natural Calm at night (1 tsp) as well as Inositol (500mg) at night as well. It seemed that his tics were slowly getting better as well as his fears. But this past week they suddenly emerged with a vengence. I had just started him on Taurine and the 2nd day his tics started back up so I didn't give it to him again. I'm wondering if giving him the Magnesium and Inositol without also giving him a good clean multi is getting him out of whack????? I'm guessing it could only help but I don't know of a good brand that is not super expensive which does not contain food dyes and other junk. Any ideas? Thanks and my prayers are with you all! Oh, and one more thing, my husband and I are trying to engage him a little more in talking about his day, good and bad, so that if their is any anxiety that we are not aware of, it might help to talk about it. He's a boy and like his Dad doesn't like to talk about fears, worries, problems, etc. Any thoughts on this? cory2605

Hi, My son's first tics and subsequent 'OCD' started within a few weeks of his H1N1 flu mist and regular flu shot last November. My daughter had the same shots (she was not sick as much as a baby/toddler as my son) and has had no repercussion that we know of. We will definitely not be doing the flu shot again. Any future required immunizations will be researched and prayed about first. Sincerely, Trish

I wonder if something happened at practice they made him upset or anxious? I know it's hard to know for sure because my son will hardly talk to me about feelings at all. Is he pretty good about not eating/drinking anything unless you give it to him or could he have gotten so thirsty he drank something he should not have? Sometimes I think my son is fibbing about whether or not he accepted a treat or some 'not allowed' food from a friend at school. I don't think he completely understands what is 'dairy' or what is 'gluten', and might use this excuse to eat something he's not suppose too. I have told him I WILL talk to his teacher and the lunchroom staff if I feel he is not being truthful. I knew I could trust him at first but now I can tell he is getting tired of all of the restrictions. Another thought, is there an upcoming meet they might have discussed at practice and it triggered some anxeity? Just a thought. I hope tomorrow sees more improvement. Sincerely, Trish

Melissa, My son's titers were within normal range also. They don't go by that so much anymore as they do the symptoms and onset. Please check into Pandas! There are studies going on that you receive free treatment with which is what we are doing (although I think we must have gotten the Placebo but they will prescribe the real antibiotic if we quit the study/trial ans ask for it. I'm just hoping to learn as much as I can from these doctors and get as many test run, etc. without running all over the state to different doctors. They are very caring and experts. I know somethings is going to help, I just don't know what. Trish

It is so awesome that you are seeing results. I have been doing the Gluten free/Dairy and Soy free for 3 months now with very little change. My son also had developed fears shortly after his tics began last year in November (after the H1N1 flu vaccine and regular flu vaccine; I always add this in case someone comes up with a connection!). I bought the Kids Calm about a week ago. He is 59 pounds (8 years old) but I've been wanting to up his dosage to 2x a day instead of 1 time. I will now! He also takes Fish Oil but I found when I ran out and switched to a cheaper kind, he grew worse. I purchased Nordic Naturals last night and we'll see how that works. I also give him Inositol (500mg) for his OCD or fears which are mainly going into a part of the house by himself. At night he has to sleep with our dog or he has difficulty falling asleep. The inositol takes a couple months to take effect. Anyway, I'm going to research the salic...or whatever you called it.....and see if I can change his diet again without him noticing too much (yeah right!). When you said sweeteners, did you mean regular sugar also?????? Now this part I will not be able to slip past him. Everything else I think I could. But I have read that you can sweeten somethings with natural juices. As far as the sweet potato, if you scrub the potato real well, slice it the shape of homefries, put it in a baggie with the oil he is allowed and add a little salt (is salt allowed, I forget...either way it will still be good) and bake them like french fries he might really like them. I'm sure there is a more detailed recipe including broiling the last couple minutes to add crispness. I'm guessing you found a recipe for mayo...I make my own but with canola oil. What is your recipe? Another thing I'm planning on doing is baking the pumpkin seeds when we buy our pumpkin today. Are these salycitates? There is a website called TheGFCFLady who has a lot of great recipes you might be able to get ideas from. Anyway, I'll pray for you and the rest of the parents and children out there with this new hurdle in life! Trish

Hi, since childhood I have periodically suffered from bouts of OCD; particularly during very stressful periods of my life. At age 17, when I went away to college, the OCD cropped up again as Anorexia. It is very serious and Char is right, she needs to get into counseling if you can persuade her even if it's for a 'pseudo' reason. By the way, the counting and having to touch objects is a very common thing in OCD. Good Luck and Prayers! Trish