Guest guest Posted October 27, 2010 Report Share Posted October 27, 2010 I don't believe it about the spinal taps...I am speaking here from ignorance probably but I personally would not get that done for Wesley...I would experiment with the folinic acid myself before having that done....anyway...there is no reason to put any weight on what I say, but I just don't understand that....it sounds too dangerous and risky for infection to get so many spinal taps.....but I am not in your shoes...please keep ES posted about how things are going!! Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2010 Report Share Posted October 28, 2010 Folinic Acid is a prescription, very high dosage. Insurance will not pay for it unless there is proof it is needed. It costs about 800 a month out of pocket. Hailey would only get one spinal tap to see if she needed it,then go by results. We are far away from that is we are going there at all. 0 To: Sent: Wed, October 27, 2010 5:26:07 PM Subject: RE: , New Doctor I don't believe it about the spinal taps...I am speaking here from ignorance probably but I personally would not get that done for Wesley...I would experiment with the folinic acid myself before having that done....anyway...there is no reason to put any weight on what I say, but I just don't understand that....it sounds too dangerous and risky for infection to get so many spinal taps.....but I am not in your shoes...please keep ES posted about how things are going!! Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2010 Report Share Posted October 28, 2010 My son takes 800mcg of Folinic Acid without a prescription from Kirkman labs 1 x daily. Cyndi B > > Folinic Acid is a prescription, very high dosage. Insurance will not pay for it > unless there is proof it is needed. It costs about 800 a month out of pocket. > Hailey would only get one spinal tap to see if she needed it,then go by > results. We are far away from that is we are going there at all. > > > > 0 > > To: > Sent: Wed, October 27, 2010 5:26:07 PM > Subject: RE: , New Doctor > > > > I don't believe it about the spinal taps...I am speaking here from ignorance > probably but I personally would not get that done for Wesley...I would > experiment with the folinic acid myself before having that > done....anyway...there is no reason to put any weight on what I say, but I just > don't understand that....it sounds too dangerous and risky for infection to get > so many spinal taps.....but I am not in your shoes...please keep ES posted > about how things are going!! > Anne > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2010 Report Share Posted October 28, 2010 , has the mutation for homozygous HTMFR which " I guess " means that her body doens't have enough of, or the right enzymes to convert the folic acid? Or something like that. I gave those results to the dev. ped. and he didn't really know what to do with them. He called for a genetic probe which will take about 6 weeks to get back. It's been almost 2 now. Anyway, is there a chance of overdosing on folinic acid? Or is it something I could just experiment with? Right now is taking a liquid multi with high levels of vit B and her thyroid med and seroquel and melatonin. We decided not to do the vit B shots after 3 shots. They were just too hard. I'd love your experience with folinic acid. > > > > Folinic Acid is a prescription, very high dosage. Insurance will not pay for it > > unless there is proof it is needed. It costs about 800 a month out of pocket. > > Hailey would only get one spinal tap to see if she needed it,then go by > > results. We are far away from that is we are going there at all. > > > > > > > > 0From: Anne Haroun <tabuhli@> > > > > To: > > Sent: Wed, October 27, 2010 5:26:07 PM > > Subject: RE: , New Doctor > > > > > > > > I don't believe it about the spinal taps...I am speaking here from ignorance > > probably but I personally would not get that done for Wesley...I would > > experiment with the folinic acid myself before having that > > done....anyway...there is no reason to put any weight on what I say, but I just > > don't understand that....it sounds too dangerous and risky for infection to get > > so many spinal taps.....but I am not in your shoes...please keep ES posted > > about how things are going!! > > Anne > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2010 Report Share Posted October 28, 2010 Klaire, did not have any problems from Folinic Acid. It can cause some hyperactivity in some kids. According to Dr. Mumper and Dr. Jerry Kartzinel Folinic is very safe and toxicity is rare. A starting dose for at 13 yrs old was 1 capsule per day and the capsule was 800 mcg. A good starting dose some people recommend is 400 mcg.It is not surprising that the Ped does not know what to do with the test results. Dr. Mumper said it took her 3 yrs of studying on her own to understand supplements, & the type of test needed to help these kids. She said in medical school you get 3 weeks and that it is for vitamins, & supplements. With A Dr.'s help and appropriate testing B vitamins can be very effective in minimizing autistic behaviors. Just a suggestion on a good read is Healing and Preventing Autism by McCarthy and Dr. Kartzinel.I bought mine at a Half price bookstore for $3. It is a question and answer book, about supplements and what they do to help. I am giving you a link on B6, & B-12, MTHFR and testing every 2 months to check levels is their recommendation. Let me know if this was helpful to you. Good luck. Cyndi Burns > > > > > > Folinic Acid is a prescription, very high dosage. Insurance will not pay for it > > > unless there is proof it is needed. It costs about 800 a month out of pocket. > > > Hailey would only get one spinal tap to see if she needed it,then go by > > > results. We are far away from that is we are going there at all. > > > > > > > > > > > > 0From: Anne Haroun <tabuhli@> > > > > > > To: > > > Sent: Wed, October 27, 2010 5:26:07 PM > > > Subject: RE: , New Doctor > > > > > > > > > > > > I don't believe it about the spinal taps...I am speaking here from ignorance > > > probably but I personally would not get that done for Wesley...I would > > > experiment with the folinic acid myself before having that > > > done....anyway...there is no reason to put any weight on what I say, but I just > > > don't understand that....it sounds too dangerous and risky for infection to get > > > so many spinal taps.....but I am not in your shoes...please keep ES posted > > > about how things are going!! > > > Anne > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2010 Report Share Posted October 29, 2010 Thanks , I like how you put my name () and 's name together in your post. Ha, I know it's hard to keep us all straight. I'll check out the posts and book. Thanks again, > > > > > > > > Folinic Acid is a prescription, very high dosage. Insurance will not pay for it > > > > unless there is proof it is needed. It costs about 800 a month out of pocket. > > > > Hailey would only get one spinal tap to see if she needed it,then go by > > > > results. We are far away from that is we are going there at all. > > > > > > > > > > > > > > > > 0From: Anne Haroun <tabuhli@> > > > > > > > > To: > > > > Sent: Wed, October 27, 2010 5:26:07 PM > > > > Subject: RE: , New Doctor > > > > > > > > > > > > > > > > I don't believe it about the spinal taps...I am speaking here from ignorance > > > > probably but I personally would not get that done for Wesley...I would > > > > experiment with the folinic acid myself before having that > > > > done....anyway...there is no reason to put any weight on what I say, but I just > > > > don't understand that....it sounds too dangerous and risky for infection to get > > > > so many spinal taps.....but I am not in your shoes...please keep ES posted > > > > about how things are going!! > > > > Anne > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2010 Report Share Posted October 29, 2010 Cyndi, good to know. How much does it cost. What benefit have you seen using it? Why is he taking it? ________________________________ To: Sent: Fri, October 29, 2010 10:12:23 AM Subject: Re: , New Doctor Thanks , I like how you put my name () and 's name together in your post. Ha, I know it's hard to keep us all straight. I'll check out the posts and book. Thanks again, > > > > > > > > Folinic Acid is a prescription, very high dosage. Insurance will not pay >for it > > > > > unless there is proof it is needed. It costs about 800 a month out of >pocket. > > > > > Hailey would only get one spinal tap to see if she needed it,then go by > > > > results. We are far away from that is we are going there at all. > > > > > > > > > > > > > > > > 0From: Anne Haroun <tabuhli@> > > > > > > > > To: > > > > Sent: Wed, October 27, 2010 5:26:07 PM > > > > Subject: RE: , New Doctor > > > > > > > > > > > > > > > > I don't believe it about the spinal taps...I am speaking here from >ignorance > > > > > probably but I personally would not get that done for Wesley...I would > > > > experiment with the folinic acid myself before having that > > > > done....anyway...there is no reason to put any weight on what I say, but >I just > > > > > don't understand that....it sounds too dangerous and risky for infection >to get > > > > > so many spinal taps.....but I am not in your shoes...please keep ES >posted > > > > > about how things are going!! > > > > Anne > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2010 Report Share Posted October 29, 2010 , I don't see the links? > > > > > > > > > > Folinic Acid is a prescription, very high dosage. Insurance will not pay for it > > > > > unless there is proof it is needed. It costs about 800 a month out of pocket. > > > > > Hailey would only get one spinal tap to see if she needed it,then go by > > > > > results. We are far away from that is we are going there at all. > > > > > > > > > > > > > > > > > > > > 0From: Anne Haroun <tabuhli@> > > > > > > > > > > To: > > > > > Sent: Wed, October 27, 2010 5:26:07 PM > > > > > Subject: RE: , New Doctor > > > > > > > > > > > > > > > > > > > > I don't believe it about the spinal taps...I am speaking here from ignorance > > > > > probably but I personally would not get that done for Wesley...I would > > > > > experiment with the folinic acid myself before having that > > > > > done....anyway...there is no reason to put any weight on what I say, but I just > > > > > don't understand that....it sounds too dangerous and risky for infection to get > > > > > so many spinal taps.....but I am not in your shoes...please keep ES posted > > > > > about how things are going!! > > > > > Anne > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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