FW: Valtrex Questions and CFD Questions please help

[Guest guest]

From: jessica79@...To: mb12valtrex@...Subject: Valtrex Questions and thanks from a neewbieDate: Mon, 30 Apr 2012 01:13:09 +0100

Hi all I have been a member of this forum for a long time now and have always wanted to do a trial of valtrex and diflucan for my son who I believe is a viral kid. My son is 7, he is non verbal and still in nappies. He was dignosed autistic at age 3. We live in England U.K. The last few years i wanted to come to the states and see Dr Goldberg but I got pregnant twice in the last 3 years and now have 2 little girls aged 2 and Sian 8 months puls Kieran aged 8 Mat's older brother. They are all typical. I was told of a Dr Goyal on the nids facebook page that he is a good asd doc here in England and i am now seeing him for Mat. He started Mat on 500mg valtrex twice a day plus 50g diflucan once a day. It has been 4 weeks and i haven't seen any wows. I'v just switched it to 250mg 8am, 250mg 3:30pm and 500mg between 8 and 9pm before he goes to bed and diflucan at 8:30am. Does this sound ok to everyone? Since researching alot lately i now think Mat has cerebral folate deficiency CFD as he has all of the symptoms and has done for years. The NHS waiting lists over here as well as the treatment received are atrocious and i want to go private to get a spinal tap done to confirm this CFD, does anybody know which specialist consultant i would have to see to get the spinal tap ordered? I hope you guys can help as it is all of your knowledge together that has got me this far. Thanks in anticipation. Jess x

[Guest guest]

,

I really think you should have some labs drawn on your son before starting medications that could be potentially harmful. Has he had a viral / immune panel or been checked for yeast? Also, you would not want to do a trial of Valtrex unless it was at least three months to a year only after confirmation from labs that were suggestive of this problem. I read that viruses can mutate and replicate when the anti-viral is stopped and restarted after a lapse. When on Valtrex, a doctor must do labs once a month to check kidney function etc. As for a spinal tap, from what I have learned, this could cause further problems realated to micro-glial activation and neurotoxicity. I hope this helps. In our personal journey, we made a lot of poor judgement calls by acting out of haste and not really knowing what to do. Some things we did were done out of correct

sequence by simply not knowing what to do. This is just so complex. Just when you think you found "the thing" or the light at the end of the tunnel, you find out it is not the light you thought it would be, so to speak. My son has made excellent progress on the anti-viral therapy after only three months but not like I had hoped for. We recently started Respen-A and it has made the most improvement of anything we have tried so far. you can check it out at www.respen-a.com My son did not talk until he was four years old although he knew what he wanted and could show you by using grunts and placing your hand on the object. He is barely five now and talks in sentences, reads at a second grade level, plays on a soccer team, asks to play with other kids and many other things. He will start Kindergarten soon in a regular classroom.

Although he is still not totally recovered or healed yet, I never thought this was possible a year ago. So keep your head up, and never give up. There is someone out there who will help your son get better. I am not sure when or how but one day it will just fall in your lap and you will know. God has sent so much help our way in helping us find the answers, doctors and the funds to help our son get better. When we started giving whether it be to a homeless man with two dogs, a church that we do not even belong to or a project I started to make cute hats for women with cancer so no one would notice that they had lost their hair. That is when things started to come together for us. We were giving and the Lord gave answers to us. Hope this helps you:)

Kerri

To: mb12valtrex Sent: Monday, April 30, 2012 8:06 AMSubject: FW: Valtrex Questions and CFD Questions please help

From: jessica79@...To: mb12valtrex@...Subject: Valtrex Questions and thanks from a neewbieDate: Mon, 30 Apr 2012 01:13:09 +0100

Hi all I have been a member of this forum for a long time now and have always wanted to do a trial of valtrex and diflucan for my son who I believe is a viral kid. My son is 7, he is non verbal and still in nappies. He was dignosed autistic at age 3. We live in England U.K. The last few years i wanted to come to the states and see Dr Goldberg but I got pregnant twice in the last 3 years and now have 2 little girls aged 2 and Sian 8 months puls Kieran aged 8 Mat's older brother. They are all typical. I was told of a Dr Goyal on the nids facebook page that he is a good asd doc here in England and i am now seeing him for Mat. He started Mat on 500mg valtrex twice a day plus 50g diflucan once a day. It has been 4 weeks and i haven't seen any wows. I'v just switched it to 250mg 8am,

250mg 3:30pm and 500mg between 8 and 9pm before he goes to bed and diflucan at 8:30am. Does this sound ok to everyone? Since researching alot lately i now think Mat has cerebral folate deficiency CFD as he has all of the symptoms and has done for years. The NHS waiting lists over here as well as the treatment received are atrocious and i want to go private to get a spinal tap done to confirm this CFD, does anybody know which specialist consultant i would have to see to get the spinal tap ordered? I hope you guys can help as it is all of your knowledge together that has got me this far. Thanks in anticipation. Jess x

[Guest guest]

Kerri, Thanks for the reply. I am so happy for you. :)I just wish that i could get Talking.... He had all his labs done and the varciella zoster came back extremely high, he had the chicken pox really bad a few years back and the single words that he had he lost then so I was always thinking that it was trapped in him and the labs kind of confirmed this. He already had problems before the chicken pox but the chicken pox made him regress more. As for yeast his great plains OAT and CSA came back negative a couple of years ago but he has that silly uncontrollable laughing for no reason like he's drunk type of behaviour. He weighs 41 lbs and i didn't want the valtrex to stir up yeast so the Dr recommended 50g diflucan. He has macrocytosis MCV=97, low red blood cells and plenty other low or high range labs. He has decelerated head growth, age 3 he developed his squint and is now extremely long sighted +6 i think and getting worse every time i take him about his eyes because he will not wear his glasses. All signs of CFD . I have had so many tests done, i'v got results coming out of my ears lol. His hair test showed that he was severely iodine deficient and high in selenium. He has high levels of mercury and aluminium according to blood tests. He mouth breathes, he gulps when he swallows, his pupils don't restrict properly and his pupils are usually large. He will not use a knife and fork to eat, only his hands and he will not even use pecs. He had constipation issues but they seem to be better on cytoflora by bioray probiotic. He has had an Mri under GA (general anaesthetic) and he had a 10p coin removed from his throat under GA too. Can anybody explain why nitrous oxide is bad for our kids? I'm sure he had it and thay called it laughing gas?? How can the spinal tap cause more issues? If i don't get it done then i can't get CFD confirmed and i can't start high dose folinic acid which can reverse autistic symptoms and stop sufferers from regressing further. I am just so confused and worried as i have stopped his 800mcg of folinic acid supp because you have to be free of it for 3 months prior to csf testing. Has anybody got any opinions? Any advice would be etremely appreciated Thanks in anticipation Jess To: mb12valtrex From: kerrismithvemma@...Date: Mon, 30 Apr 2012 22:00:45 -0700Subject: Re: FW: Valtrex Questions and CFD Questions please help

,

I really think you should have some labs drawn on your son before starting medications that could be potentially harmful. Has he had a viral / immune panel or been checked for yeast? Also, you would not want to do a trial of Valtrex unless it was at least three months to a year only after confirmation from labs that were suggestive of this problem. I read that viruses can mutate and replicate when the anti-viral is stopped and restarted after a lapse. When on Valtrex, a doctor must do labs once a month to check kidney function etc. As for a spinal tap, from what I have learned, this could cause further problems realated to micro-glial activation and neurotoxicity. I hope this helps. In our personal journey, we made a lot of poor judgement calls by acting out of haste and not really knowing what to do. Some things we did were done out of correct

sequence by simply not knowing what to do. This is just so complex. Just when you think you found "the thing" or the light at the end of the tunnel, you find out it is not the light you thought it would be, so to speak. My son has made excellent progress on the anti-viral therapy after only three months but not like I had hoped for. We recently started Respen-A and it has made the most improvement of anything we have tried so far. you can check it out at www.respen-a.com My son did not talk until he was four years old although he knew what he wanted and could show you by using grunts and placing your hand on the object. He is barely five now and talks in sentences, reads at a second grade level, plays on a soccer team, asks to play with other kids and many other things. He will start Kindergarten soon in a regular classroom.

Although he is still not totally recovered or healed yet, I never thought this was possible a year ago. So keep your head up, and never give up. There is someone out there who will help your son get better. I am not sure when or how but one day it will just fall in your lap and you will know. God has sent so much help our way in helping us find the answers, doctors and the funds to help our son get better. When we started giving whether it be to a homeless man with two dogs, a church that we do not even belong to or a project I started to make cute hats for women with cancer so no one would notice that they had lost their hair. That is when things started to come together for us. We were giving and the Lord gave answers to us. Hope this helps you:)

Kerri

To: mb12valtrex Sent: Monday, April 30, 2012 8:06 AMSubject: FW: Valtrex Questions and CFD Questions please help

From: jessica79@...To: mb12valtrex@...Subject: Valtrex Questions and thanks from a neewbieDate: Mon, 30 Apr 2012 01:13:09 +0100

Hi all I have been a member of this forum for a long time now and have always wanted to do a trial of valtrex and diflucan for my son who I believe is a viral kid. My son is 7, he is non verbal and still in nappies. He was dignosed autistic at age 3. We live in England U.K. The last few years i wanted to come to the states and see Dr Goldberg but I got pregnant twice in the last 3 years and now have 2 little girls aged 2 and Sian 8 months puls Kieran aged 8 Mat's older brother. They are all typical. I was told of a Dr Goyal on the nids facebook page that he is a good asd doc here in England and i am now seeing him for Mat. He started Mat on 500mg valtrex twice a day plus 50g diflucan once a day. It has been 4 weeks and i haven't seen any wows. I'v just switched it to 250mg 8am,

250mg 3:30pm and 500mg between 8 and 9pm before he goes to bed and diflucan at 8:30am. Does this sound ok to everyone? Since researching alot lately i now think Mat has cerebral folate deficiency CFD as he has all of the symptoms and has done for years. The NHS waiting lists over here as well as the treatment received are atrocious and i want to go private to get a spinal tap done to confirm this CFD, does anybody know which specialist consultant i would have to see to get the spinal tap ordered? I hope you guys can help as it is all of your knowledge together that has got me this far. Thanks in anticipation. Jess x

[Guest guest]

Hi ,I haven't heard about kids needing a spinal tap to test for CFD. Here in the US (from what I understand) we use Dr. Quadros' lab. It is prettty easy. You get a vial of blood drawn as per the instructions, you have to mail it in (he gives instructions for overseas deliveries), and then in a couple weeks he will send the results back to your doctor. Since it sounds like your drs. are not aware of this stuff I would consider contacting Dr. Woeller (autismactionplan.org), he helps alot of overseas patients via skype and in places where biomed is lacking (like in the midwest usa)....his charges are expensive...about 200-300/hr. but he does answer alot of questions through his autismactionplan site for free...he can help your local drs by

sending lab orders that they could hopefully transfer locally -- if you could find a willing and flexible local dr...i would also be very careful with anaesthesia,,,i will try to find the article i just read and share soon...cheers, megan To: mb12valtrex Sent: Tuesday, May 1, 2012 5:21 AM Subject: RE: FW: Valtrex Questions and CFD Questions please help

Kerri, Thanks for the reply. I am so happy for you. :)I just wish that i could get Talking.... He had all his labs done and the varciella zoster came back extremely high, he had the chicken pox really bad a few years back and the single words that he had he lost then so I was always thinking that it was trapped in him and the labs kind of confirmed this. He already had problems before the chicken pox but the chicken pox made him regress more. As for yeast his great plains OAT and CSA came back negative a couple of years ago but he has that silly uncontrollable laughing for no reason like he's drunk type of behaviour. He weighs 41 lbs and i didn't want the valtrex to stir up yeast so the Dr recommended 50g diflucan. He has macrocytosis MCV=97, low red blood cells and plenty other low or high range labs. He has decelerated head growth, age 3 he developed his squint and is now

extremely long sighted +6 i think and getting worse every time i take him about his eyes because he will not wear his glasses. All signs of CFD . I have had so many tests done, i'v got results coming out of my ears lol. His hair test showed that he was severely iodine deficient and high in selenium. He has high levels of mercury and aluminium according to blood tests. He mouth breathes, he gulps when he swallows, his pupils don't restrict properly and his pupils are usually large. He will not use a knife and fork to eat, only his hands and he will not even use pecs. He had constipation issues but they seem to be better on cytoflora by bioray probiotic. He has had an Mri under GA (general anaesthetic) and he had a 10p coin removed from his throat under GA too. Can anybody explain why nitrous oxide is bad for our kids? I'm sure he had it and thay called it laughing gas?? How can the spinal tap

cause more issues? If i don't get it done then i can't get CFD confirmed and i can't start high dose folinic acid which can reverse autistic symptoms and stop sufferers from regressing further. I am just so confused and worried as i have stopped his 800mcg of folinic acid supp because you have to be free of it for 3 months prior to csf testing. Has anybody got any opinions? Any advice would be etremely appreciated Thanks in anticipation Jess To: mb12valtrex From: kerrismithvemma@...Date: Mon, 30 Apr 2012 22:00:45 -0700Subject: Re: FW: Valtrex Questions and CFD Questions please help

,

I really think you should have some labs drawn on your son before starting medications that could be potentially harmful. Has he had a viral / immune panel or been checked for yeast? Also, you would not want to do a trial of Valtrex unless it was at least three months to a year only after confirmation from labs that were suggestive of this problem. I read that viruses can mutate and replicate when the anti-viral is stopped and restarted after a lapse. When on Valtrex, a doctor must do labs once a month to check kidney function etc. As for a spinal tap, from what I have learned, this could cause further problems realated to micro-glial activation and neurotoxicity. I hope this helps. In our personal journey, we made a lot of poor judgement calls by acting out of haste and not really knowing what to do. Some things we did were done out of correct

sequence by simply not knowing what to do. This is just so complex. Just when you think you found "the thing" or the light at the end of the tunnel, you find out it is not the light you thought it would be, so to speak. My son has made excellent progress on the anti-viral therapy after only three months but not like I had hoped for. We recently started Respen-A and it has made the most improvement of anything we have tried so far. you can check it out at www.respen-a.com My son did not talk until he was four years old although he knew what he wanted and could show you by using grunts and placing your hand on the object. He is barely five now and talks in sentences, reads at a second grade level, plays on a soccer team, asks to play with other kids and many other things. He will start Kindergarten soon in a

regular classroom.

Although he is still not totally recovered or healed yet, I never thought this was possible a year ago. So keep your head up, and never give up. There is someone out there who will help your son get better. I am not sure when or how but one day it will just fall in your lap and you will know. God has sent so much help our way in helping us find the answers, doctors and the funds to help our son get better. When we started giving whether it be to a homeless man with two dogs, a church that we do not even belong to or a project I started to make cute hats for women with cancer so no one would notice that they had lost their hair. That is when things started to come together for us. We were giving and the Lord gave answers to us. Hope this helps you:)

Kerri

To: mb12valtrex Sent: Monday, April 30, 2012 8:06 AMSubject: FW: Valtrex Questions and CFD Questions please help

From: jessica79@...To: mb12valtrex@...Subject: Valtrex Questions and thanks from a neewbieDate: Mon, 30 Apr 2012 01:13:09 +0100

Hi all I have been a member of this forum for a long time now and have always wanted to do a trial of valtrex and diflucan for my son who I believe is a viral kid. My son is 7, he is non verbal and still in nappies. He was dignosed autistic at age 3. We live in England U.K. The last few years i wanted to come to the states and see Dr Goldberg but I got pregnant twice in the last 3 years and now have 2 little girls aged 2 and Sian 8 months puls Kieran aged 8 Mat's older brother. They are all typical. I was told of a Dr Goyal on the nids facebook page that he is a good asd doc here in England and i am now seeing him for Mat. He started Mat on 500mg valtrex twice a day plus 50g diflucan once a day. It has been 4 weeks and i haven't seen any wows. I'v just switched it to 250mg 8am,

250mg 3:30pm and 500mg between 8 and 9pm before he goes to bed and diflucan at 8:30am. Does this sound ok to everyone? Since researching alot lately i now think Mat has cerebral folate deficiency CFD as he has all of the symptoms and has done for years. The NHS waiting lists over here as well as the treatment received are atrocious and i want to go private to get a spinal tap done to confirm this CFD, does anybody know which specialist consultant i would have to see to get the spinal tap ordered? I hope you guys can help as it is all of your knowledge together that has got me this far. Thanks in anticipation. Jess x

2 of 2 File(s)

Folate Recepter test.doc

Cerebral Folate Deficiency and Autism.docx