Guest guest Posted July 19, 2001 Report Share Posted July 19, 2001 Yhen, I will try to answer what I can. > EnzymAid is the first thing our DAN dr. recommended. Then she wants us to be on SuperNuThera, EFA-plus & TMG. Have you used any of this other ones? We tried the EnzymAid and it was okay but not as effective as Peptizyde, especially with casein/gluten foods (which is our interest). However, digestive enzymes will help in a lot of ways besides just allowing a non-GFCF diet. We tried 2 other brans from the health food store as well. I looked into the super nu thera, but our neuro said we could just take a multi-vitamin and add extra B6 and mag separately. She advised that this would allow us to see if either the B6 or mag helped by starting them at different times. She also recommended to use a B- complex so the Bs would be balanced. So I gave a B-complex at 50 mg. and then mag in 400 mg capsules. It was nice to have the mag separate because we ended up keeping it longer and increasing the dose for one son, but didn't need to increase it for the other son. We used KAL essential fatty acids from the health food store. It has the 3-6-9 balance (and was on sale! LOL). We did not try TMG but did try DMG in the little tablets that dissolve quickly under the tongue (from the health food store). Younger son and I didn't notice any difference, but older son regressed badly. I took him off and tried it a week later to make sure, but he couldn't tolerate it. I think those are supposed to help more with language. We didn't have a language problem so maybe that is why we didn't see positive results. > My son is also going to have few tests done. If I remember them > correctly they are the complete blood allergy test, stool test for > digesting & hair & blood tests for heavy metals. These sounds > overwhelming to me. Again, have you done any of these? Would the > allregy test show if the GFCF diet is helping him? I have not had any of those done, although we have an appointment tomorrow and I will bring it up. I am interested in getting the intestinal permeability test done through a local lab or Great Smokies to see about leaky gut. I understand that the allergy test will NOT definitively tell if the GFCF diet will help. It is not a bad test, it is just not 100% accurate in predicting if the diet will help. Most people agree that you just have to try the diet to see. > It has only been 2 mos. since we are on GFCF diet 100%, but honestly, it seems like it's been a year already. We just want to know if the diet is helping him or not. If it's not helping then we want to get back to his regular diet. LOLOL - We did it for 2 months and it seemed like 2 years. Honestly, some people seem to get the hang of it right away, but we were not in that group. Did you see any improvements at all? Many people have to take out soy and corn and reduce high phenol foods as well as casein and gluten. You may want to take those out and see if there is an effect. Or you may want to up the amount of enzymes and use those regularly to see if that helps break down any foods you don't know are offending him. Either way, maybe put a time limit on it so you are not driving yourself (and your child) nuts. Say, 2-3 weeks. Keep posting back on your observations. Many parents here have different experiences which might help you determine what is going on. . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2001 Report Share Posted July 20, 2001 Hi ! Thank's for all the info I'm going to give our DAN dr a call and ask about the Peptizide. We are going to give the diet a try for one more month. We truly don't think that it's helping him. But we will see, since they said that it should be given a try for at least 3 mos. So far, for the last 3 days since we started him on the EnzymAid, my son is noticeably happier, more focused, babbles/makes sounds more and imitates more! I hope he continues to improve yhen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2007 Report Share Posted October 16, 2007 That's a good idea for a starting point. Can I share this e-mail with local families? - Freels <dfreels@...> wrote: >, > > My son's medicaid coverage (his secondary insurance) was presented to me as if it was an HMO. They are very strict about only covering in-network doctors and only if there has been a referral. To give you an example, my child's PCP is part of both my son's primary/private insurance and the medicaid group. So are most of his specialists. One time I forgot to ask the PCP to write the referral to the specialist (because our private insurance is a PPO and does not require referrals). Even though the specialist was " in-network, " I could not be reimbursed for the co-pay. In light of our brief experience, I have a difficult time following what you have accomplished in your state (and others in their own states). Can you please explain step 1 in fighting medicaid denials for out-of-network treatment facilities (or how to get treatment in-network for off- label treatments) for my particular state? > > http://www.pascenter.org/state_based_stats/ medicaid_waivers_info.php?title=Contact%20Info%20and% 20Descriptions & state=arizona > > I don't expect you to explain the entire process, but what is step 1 since our state does not have the Beckett Waiver? > > Also, the families that I know who have medicaid as their primary insurance cannot even get into see a specialist (medicaid refuses to authorize/approve the visit even though the PCP made the proper referral). I know of a family who has a child with seizures and medicaid refuses to let the child see a neurologist by not authorizing the referral. In another case, a child has been diagnosed with lead poisoning by the medicaid PCP and chelation has been approved *if there is an in-network doctor who will do it,* but none can be found. Therefore the child has never been treated. > > Thanks, , Thanks for your questions. First, whether there's a waiver or not is not really relevant. For us, in Georgia, the Beckett waiver is the route we take to get to Medicaid. Medicaid is Medicaid. EPSDT applies to all Medicaid recipients--whether they get there because they have a waiver, a disability, or low revenue. It's all the same once you get there. That said, most likely, your Medicaid/HMO does not know what legal responsibilities they have as a hired-hand provider of Medicaid services in Arizona and/or the state of Arizona itself doesn't know what responsibilities it has. This has happened before, very soon after the group started. In Colorado there was a similar situation where Mom wanted HBOT for her son (I think is his name). The HMO was Kaiser. Kaiser had a contract to only provide services " covered under the State plan, " and so they believed they had no responsibility to cover anything outside of the plan. The bureaucrats at the state of course believed it was Kaiser's problem and not theirs--so neither the state or Kaiser showed up at the hearing because each believed it was the other's problem. Still, the judge made the s provide proof of HBOT efficacy for -- which they did and the judge ruled the state of Colorado was responsible--who in turn decided Kaiser was responsible--who in turn resigned their HMO-ish contract with Colorado. All of this can be found at medicaid/files/. Bottom line. I don't actually know what Step 1 is for you. Right now you've got everything in place to repeat the events in Colorado so it may be best to try and fly in under the radar. I think I'd make the requests for HBOT services in writing to whoever your listed HMO is and include references to EPSDT, explaining what it says and what it means. At the same time, I would encourage your friends to do the same, re: the pediatric neurologist and the chelation therapy. Educate your providers on this too. It might be worthwhile to first go back and start with an attempt to get Medicaid to make that co-pay. Make the argument using EPSDT and weigh in heavily on the reference to " whether or not such services are covered under the State plan " as it's their state plan policy that has forced you to make the co-pay. Even if it's just $25 or $30, press them on it and see if they'll break. If they do and then pay you back, this creates an acknowledgment on their part that they do have a responsibility to cover services " whether or not such services are covered under the State plan. " More importantly, this creates a precedent that you can then reference (and they then can't deny) when you come back to them with a request for reimbursement of hyperbaric therapy. Freels 2948 Windfield Circle Tucker, GA 30084-6714 770-491-6776 (phone) 404-725-4520 (cell) 815-366-7962 (fax) mailto:david@... fearlessparents/ http://www. .com http://www.davidfreels.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2007 Report Share Posted October 16, 2007 Of course. Always. Re: [ ] questions for > >That's a good idea for a starting point. Can I share this e-mail with local families? > > - > > Freels <dfreels@...> wrote: > >, >> >> My son's medicaid coverage (his secondary insurance) was >presented to me as if it was an HMO. They are very strict about only >covering in-network doctors and only if there has been a referral. >To give you an example, my child's PCP is part of both my son's >primary/private insurance and the medicaid group. So are most of his >specialists. One time I forgot to ask the PCP to write the referral >to the specialist (because our private insurance is a PPO and does >not require referrals). Even though the specialist was " in-network, " >I could not be reimbursed for the co-pay. In light of our brief >experience, I have a difficult time following what you have >accomplished in your state (and others in their own states). Can you >please explain step 1 in fighting medicaid denials for out-of-network >treatment facilities (or how to get treatment in-network for off- >label treatments) for my particular state? >> >> http://www.pascenter.org/state_based_stats/ >medicaid_waivers_info.php?title=Contact%20Info%20and% >20Descriptions & state=arizona >> >> I don't expect you to explain the entire process, but what is >step 1 since our state does not have the Beckett Waiver? >> >> Also, the families that I know who have medicaid as their primary >insurance cannot even get into see a specialist (medicaid refuses to >authorize/approve the visit even though the PCP made the proper >referral). I know of a family who has a child with seizures and >medicaid refuses to let the child see a neurologist by not >authorizing the referral. In another case, a child has been >diagnosed with lead poisoning by the medicaid PCP and chelation has >been approved *if there is an in-network doctor who will do it,* but >none can be found. Therefore the child has never been treated. >> >> Thanks, > >, > >Thanks for your questions. > >First, whether there's a waiver or not is not really relevant. For >us, in Georgia, the Beckett waiver is the route we take to get >to Medicaid. Medicaid is Medicaid. EPSDT applies to all Medicaid >recipients--whether they get there because they have a waiver, a >disability, or low revenue. It's all the same once you get there. > >That said, most likely, your Medicaid/HMO does not know what legal >responsibilities they have as a hired-hand provider of Medicaid >services in Arizona and/or the state of Arizona itself doesn't know >what responsibilities it has. This has happened before, very soon >after the group started. In Colorado there was a >similar situation where Mom wanted HBOT for her son > (I think is his name). The HMO was Kaiser. Kaiser had a >contract to only provide services " covered under the State plan, " and >so they believed they had no responsibility to cover anything outside >of the plan. > >The bureaucrats at the state of course believed it was Kaiser's >problem and not theirs--so neither the state or Kaiser showed up at >the hearing because each believed it was the other's problem. Still, >the judge made the s provide proof of HBOT efficacy for -- >which they did and the judge ruled the state of Colorado was >responsible--who in turn decided Kaiser was responsible--who in turn >resigned their HMO-ish contract with Colorado. All of this can be >found at medicaid/files/. > >Bottom line. I don't actually know what Step 1 is for you. Right now >you've got everything in place to repeat the events in Colorado so it >may be best to try and fly in under the radar. I think I'd make the >requests for HBOT services in writing to whoever your listed HMO is >and include references to EPSDT, explaining what it says and what it >means. > >At the same time, I would encourage your friends to do the same, re: >the pediatric neurologist and the chelation therapy. > >Educate your providers on this too. > >It might be worthwhile to first go back and start with an attempt to >get Medicaid to make that co-pay. Make the argument using EPSDT and >weigh in heavily on the reference to " whether or not such services >are covered under the State plan " as it's their state plan policy >that has forced you to make the co-pay. Even if it's just $25 or $30, >press them on it and see if they'll break. If they do and then pay >you back, this creates an acknowledgment on their part that they do >have a responsibility to cover services " whether or not such services >are covered under the State plan. " More importantly, this creates a >precedent that you can then reference (and they then can't deny) when >you come back to them with a request for reimbursement of hyperbaric >therapy. > > Freels >2948 Windfield Circle >Tucker, GA 30084-6714 >770-491-6776 (phone) >404-725-4520 (cell) >815-366-7962 (fax) > >mailto:david@... > >fearlessparents/ > >http://www. .com > >http://www.davidfreels.com > > Quote Link to comment Share on other sites More sharing options...
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