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