Gina Posted March 8, 2004 Report Share Posted March 8, 2004 I am soooo upset. I found a DAN Dr. not to far from me and spoke with them today. Unless I am willing to take out a loan this is not even an option for us. For the first 2 hour evaluation was going to cost $650.00 than the standard blood, urine & stool testing was another $1500.00 and than office visits were $350.00 ea. I guess its back to playing DR. myself. THIS SUCKS!!!!! Everytime there is a glimmer of hope there is another brick wall Any other ideas out there that can help. My 8 yr. old son has TS. was diagnosed 2 years ago. Never medicated, and I am completely confused with the vitamin regimins. So far we have only used dietary changes and a childrens multivitamin. Thank You Gina Link to comment Share on other sites More sharing options...
Guest Ronna Posted March 8, 2004 Report Share Posted March 8, 2004 Have you tried Bonnie's supplements? http://bonniegr.com/ I can notice a big improvement in my son on these supplements and it has taken the guess work out for me on having to figure out so much on my own. I am still spending tons of time learning about vitamins but at least I know Kurt is getting a good combination for now. Ronna Link to comment Share on other sites More sharing options...
Chemar Posted March 8, 2004 Report Share Posted March 8, 2004 Hi Gina I agree that is LUDICROUS $$$! How sad that doctors offering an alternative have to hike their fees so. We thankfully found very reasonable doctors in our area who are qualified medically but recognise naturopathic treatment. I have never been to a DAN doctor but those who have seem happy. Sure hope they didnt have to pay those kind of prices tho....that is truly outrageous! What part of the country are you in so that we can try to help you locate a physician? Dont give up.....there IS hope And, as Ronna has wisely pointed out, starting with good basic supplements is a VERY positive thing to do in the meantime, whether you use Bonnie's excellent formula or just get some of the good stuff like the Omega fatty Acids, magnesium taurate, zinc & B vits etc to start with. Link to comment Share on other sites More sharing options...
Guest GL&Lmom Posted March 9, 2004 Report Share Posted March 9, 2004 Hi Gina, I know what you're going through. There are no DAN doctors anywhere near us. The load of trying to do all the research is overwhelming. Plus, I'm too scared of trying something without a medical opinion. We ended up making a phone consultation with a physician from out of town who specializes in this sort of case. I emailed Sheila Rogers at this website for the referral. If I recall, the consultation was less than $100. He then recommended what tests to have our local physician order. These were pricy, but not anywhere near $1500. The worst part was having to put up with the local physician trying to dissuade me and make me feel guilty for not telling our other physician about the tests! We still may have to travel out of town for a visit with this doctor. I haven't asked about the $$ for that yet. I also read that Sheila Rogers is offering consultations for just this purpose. I'm not nearly as knowledgable as many others on this forum, but it sounds like you are on the right track with vitamins and dietary changes. Its great that you are already here before trying meds. I certainly wish that I would have found some of the information on this site before trying the different medications. Good luck. Link to comment Share on other sites More sharing options...
Gina Posted March 9, 2004 Author Report Share Posted March 9, 2004 Thanks for the replys... I live in Fremont California. I have looked into Bonnies supplements and was really close to ordering them but when I realized that my son would have to take 18-20 pills per day it just didn't seem right to me. It's not that I am looking for the miracle pill but that just put a big red flag up for me. I think what I would like to figure out is what my son should be taking strictly for TS. Luckily he has none of the other things that are very common with TS (ADD, ADHD, OCD etc.) and as usual his tic come and go. Most of the time its not even noticable. But when they appear they really come out in full force. 90% of the time they are motor and not vocal tics. Thanks Gina Link to comment Share on other sites More sharing options...
Guest Jean Posted March 9, 2004 Report Share Posted March 9, 2004 Hi Gina, Sorry to hear about this. Besides the consultation fee, I don't understand why tests cost that much. Usually, the insurance won't cover (or partially cover) for the tests. Therefore, the fee for paying out of pocket patients should be much lower. I fortunately found a ND (from the list) who charges reasonable. I actually had sent e-mails to serveral doctors for "interview", then I selected the current one. I understand that some of NDs would make treatment using phone consultation. You may want to try this way if you feel comfortable. Link to comment Share on other sites More sharing options...
Claire Posted March 9, 2004 Report Share Posted March 9, 2004 Gina, I don't live very far from you and my DAN doctor is definitely within driving distance from you. I think he charged $325 for the initial visit. I think his follow-up visit was $170. So far ALL the lab tests that I sent into insurance were actually covered by insurance. (I have not sent in all my lab test bills though). Not all lab tests were covered 100% though, I am sorting this out now. This all assumes that you have a PPO--HMOs are different and I have no idea of their coverage. This is why I chose an MD. It was covered by insurance. This guy is WONDERFUL. You can click on my name here and send me an email --I won't post his name for privacy purposes. Claire ps found that the test results showed he needed a different set of vitamins than Bonnie has in her standard package. Link to comment Share on other sites More sharing options...
Chemar Posted March 9, 2004 Report Share Posted March 9, 2004 Gina Has that allover shaking "tic" that you described for your son stopped? Also, has he actually seen a neurologist recently?It really would be a VERY good move to rule out any possibility of seizures by seeing a neuro first, and just determining where on the TS spectrum your son is at this stage of his life. At least then you would have a foundation to work from. I know how tough it is when one doesnt have the health insurance or funds to cover all these things....we are self employed and also on a very tight budget, with no insurance so i sympathise with you. Still, i have always found that caring physicians will work with one and split payments etc . I would be very happy to help you work thru the maze of supplement info if that would help....so we can keep a converstaion going by email you are very welcome to email me via my website which is at http://www.almasattic.net just use the contact feature and enter just GINA and your email address...you dont need to fill out all the other stuff...then, as soon as i get it I will email you back so you will have my email address and i can try to answer your questions and concerns to the best of my ability, and maybe also help you find a good and affordable doctor who can guide you. I sure hope to hear from you Link to comment Share on other sites More sharing options...
Chemar Posted March 9, 2004 Report Share Posted March 9, 2004 Gina Here is a link to the American Assocn List of naturopathic Physicians in California I didnt see one listed for Fremont, but maybe you are close to one of the others. I have NO KNOWLEDGE personally of these physicians, and this list is by no means comprehensive as it only has the docs that are members of the assocn But at least it is a start I will post if I find more http://www.healthy.net/asp/Associations/aanp.asp Link to comment Share on other sites More sharing options...
Jennifer Posted March 9, 2004 Report Share Posted March 9, 2004 Dear Gina, I am so sorry about your experience. I know that this is a free country, but if you feel like it perhaps you should complain to the ARI about this doctor...it sounds like he's trying to take advantage of desperate parents....not a moral thing to do. We have been to a DAN doctor and so far his fees have been within reason and he will carry the balance with no finance charge as long as we pay 10% of the bill every month. A good resource would be to purchase "Children with Starving Brains" by Dr. Jaqueline McCandless who is an awesome doctor. She spells out the treatment and lab tests in a very organized manner. There is alot you can do on your own, but eventually you will have to find a doctor who is agreeable to the testing. A naturpath would be your best bet. It's alot of work, but with that link the Chemar gave you perhaps you could call the various doctors and ask them what their protocol is. Best of Luck, Jennifer Link to comment Share on other sites More sharing options...
Gina Posted March 9, 2004 Author Report Share Posted March 9, 2004 Thanks everyone, I am feeling much better with everyones responses. I was really upset this afternoon after talking to that Dr. office. Hearing from all of you has helped a lot. I might even get a good nights sleep...... Chemar - That shaking tic has left and replaced itself with a new one. (both arms folding up and hitting himself in the chest) not to often and not bad enough to hurt himself. My son is very much aware of the TS and I can ask him if its his TS or not. He knows exactly when its his TS and he said that the shaking tic was his TS. I have not been back to his neurologist since he was diagnosed. Was not impressed. Basically he was diagnosed and I was told to go home and deal with it or put him on drugs. I opted to go home and find out info on my own. Have not had him to a Dr. for his TS since I will look into the website you gave and also will take you up on your offer to help with the vitamin info. Thanks Again Gina Link to comment Share on other sites More sharing options...
Heather Posted March 9, 2004 Report Share Posted March 9, 2004 Gina, Sorry to hear of your situation. I hope that one of the options the others have mentioned will be be helpful to you. I too believe that with a little researching you should be able to find a more reasonably priced doctor that focuses on natural supplements in treatment even if it isn't a DAN doctor. There are many naturopath doctors that do similar testing but perhaps not as invasive that would at least give you a start. My son is seeing a naturopath that strictly tested for intestinal yeast and heavy metals at a minimal cost and we are seeing wonderful results under her guidance. I know how frustrating it can be that this protocol isn't more widely researched and accepted so that it would be easier to find treatment. I have had no help at all from medical doctors in my area and was told that I was basically wasting my money. As you can see, there are many people on here who will all try to help in whatever way we can. Very often, a small tidbit of info. can help in sharing with others. Heather Link to comment Share on other sites More sharing options...
Heather Posted March 9, 2004 Report Share Posted March 9, 2004 To All, I must report that although the food sensitivities had been identified by the naturopath, I had never seen any real reaction directly related to those foods since he was pretty much consistently ticcing all the time. Now that his ticcing is so reduced I finally saw the reaction to confirm the food issue. On Friday night he went to a big hockey game with a friend that was a pretty major game in large arena with all the treats that go with it. I told the mom not to worry about the foods for just this one night as he was doing so well and had been denied so long I didn't want him to feel like he was singled out among a group of friends in not being able to eat anything. Well he had popcorn (corn allergy) nachos with cheese (corn and milk) and a Frosty from Wendy's on the way home. By the time he got home that night he was sniffing like crazy and this lasted most of the weekend. It was significantly reduced today (finally) so I did see this as a reaction to the forbidden foods after having improved so much previously. I will be more cautous next time. These social events are sooooooooooo hard. Heather Link to comment Share on other sites More sharing options...
Claire Posted March 9, 2004 Report Share Posted March 9, 2004 Heather, Glad that you got the feedback. That is important. My social event experiment worked on Friday night! It costs extra though.... My son didn't want to feel different, so I brought a bunch of stuff that he could have that I knew the other kids would like also. The other kids went 'crazy' for them. Mott's apple juice and Dole popsicles. I had Hagen Daas (sp) icecream bars as a back-up, but didn't need them. I bought the stuff at Whole Foods, but picked familiar labels. My son kind of thought I cheated, but I felt I 'scored'--they were happy that his mom bought a higher grade of items. We now have a solution, though in an ideal world I would just throw in 6 items, vs duplicate snacks for the entire team every week. Next week it will be Mott's again, and something different for a snack. Claire Link to comment Share on other sites More sharing options...
Guest Guest Posted March 9, 2004 Report Share Posted March 9, 2004 Gina, There is a ND (who is listed on the DAN list) in Palo Alto where is not far from your place. She has a website also. You may want to take a look of it. FYI. Jean Link to comment Share on other sites More sharing options...
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