RE: Namenda

[Guest guest]

Keep us informed. My husband's family had 13 children; 5 with some form of

dementia; 1 who had epilepsy (dec'd); 3 with Down Syndrome. His mother and

father married brother and sister, and 5 of those children had some form of

dementia. Genetic - I think so. The only autopsies done were on him and a

sister and brother; he was the only one with LBD in addition to AD. It's w/o a

doubt that the AD has some hereditary aspects. However, his father had

Parkinson's and later dementia, so that would indicate LBodies were present.

The family is in a DNA research study with the Univeristy of Indiana, but

nothing will be divulged except the results of the autopsies, so it won't ever

be known what, if any, genetic connection there is. I think there is a

connection with all these " brain " issues in his family. In addition, I think

there is a connection with ADHD, AADD, possibly autism, in this family. People

with Down Syndrome were given Aricept on a trial

basis, and it was helpful from what I've read.

We have several grandchildren, mostly boys, with various forms of ADHD, ADD, and

some who have AADD now that they are adults. A great grandson was recently dx'd

with Asperger's Syndrome (a form of autism). One granddaughter has been dx'd

with Oppositional Defiant Disorder; another with Bipolar. So, I really think

this family has " diseaseiseases of their own. "

June C.

D was

>

> Subject: Re: Namenda

> To: LBDcaregivers

> Date: Friday, July 25, 2008, 11:10 AM

> The UCSF Dr/Researcher is actively pursuing any possible

> genetic link. My sister has had one of several genetic

> screenings that have been ordered. In addition to my

> sister, our paternal first cousin has PD and our youngest

> brother has REM sleep disorder. Don't know where the

> testing will take us. The Drs. have mentioned that our

> family may have their own disease. Oh, joy!!

>

>

[Guest guest]

What is Namenda? Mindy

Nickie - can I ask if your son's scripting has stopped? If so, this is huge news for me b/c that's my son's biggest issue. I have never heard of someone having a treatment that really works. Some folks believe that it's a yeast issue but my son does not test positive for yeast. Does your son have OCD traits also? I was going in the direction of PANDAS b/c my son does have extremely high antibodies. However, I have never heard of Namenda - how long before you saw improvements? Thanks, Heidi J.

We use Namenda for one of our sons to help with his verbal stimming/scripting. His doc believes he has a glutamate issue. It has worked well so far.

Nickie

-----Original Message-----From: mb12 valtrex [mailto:mb12 valtrex ]On Behalf Of jcbgalvinSent: Sunday, March 01, 2009 2:58 AMTo: mb12 valtrex Subject: Namenda

We are considering using Namenda with our son Anyone using it .any advice appreciated thanks Caroline

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[Guest guest]

We use Namenda for one of our sons to help with his verbal stimming/scripting. His doc believes he has a glutamate issue. It has worked well so far.

Nickie

-----Original Message-----From: mb12 valtrex [mailto:mb12 valtrex ]On Behalf Of jcbgalvinSent: Sunday, March 01, 2009 2:58 AMTo: mb12 valtrex Subject: Namenda

We are considering using Namenda with our son Anyone using it .any advice appreciated thanks Caroline

[Guest guest]

Our DAN wants our daughter on Namenda because she is nonverbal (was verbal prior to her regression). Anyone else put on Namenda for that?

Subject: NamendaTo: mb12 valtrex Date: Sunday, March 1, 2009, 3:51 PM

Nickie - can I ask if your son's scripting has stopped? If so, this is huge news for me b/c that's my son's biggest issue. I have never heard of someone having a treatment that really works. Some folks believe that it's a yeast issue but my son does not test positive for yeast. Does your son have OCD traits also? I was going in the direction of PANDAS b/c my son does have extremely high antibodies. However, I have never heard of Namenda - how long before you saw improvements? Thanks, Heidi J.

We use Namenda for one of our sons to help with his verbal stimming/scripting. His doc believes he has a glutamate issue. It has worked well so far.

Nickie

Namenda

We are considering using Namenda with our son Anyone using it .any advice appreciated thanks Caroline

[Guest guest]

Yes, my daughter was and she made great strides with and was only on it for a little while. A few monts. About 6. Before starting we could only understand maybe 60%; after closer to 85-87%. Sent from my Verizon Wireless BlackBerryFrom: hildy gogal Date: Sun, 1 Mar 2009 14:33:34 -0800 (PST)To: <mb12 valtrex >Subject: Re: Namenda Our DAN wants our daughter on Namenda because she is nonverbal (was verbal prior to her regression). Anyone else put on Namenda for that?From: Heidi <hmwjohnsoncomcast (DOT) net>Subject: NamendaTo: mb12 valtrex Date: Sunday, March 1, 2009, 3:51 PMNickie - can I ask if your son's scripting has stopped? If so, this is huge news for me b/c that's my son's biggest issue. I have never heard of someone having a treatment that really works. Some folks believe that it's a yeast issue but my son does not test positive for yeast. Does your son have OCD traits also? I was going in the direction of PANDAS b/c my son does have extremely high antibodies. However, I have never heard of Namenda - how long before you saw improvements? Thanks, Heidi J. We use Namenda for one of our sons to help with his verbal stimming/scripting. His doc believes he has a glutamate issue. It has worked well so far. Nickie NamendaWe are considering using Namenda with our son Anyone using it .any advice appreciated thanks Caroline

[Guest guest]

Yes, my daughter was and she made great strides with and was only on it for a little while. A few monts. About 6. Before starting we could only understand maybe 60%; after closer to 85-87%. Sent from my Verizon Wireless BlackBerryFrom: hildy gogal Date: Sun, 1 Mar 2009 14:33:34 -0800 (PST)To: <mb12 valtrex >Subject: Re: Namenda Our DAN wants our daughter on Namenda because she is nonverbal (was verbal prior to her regression). Anyone else put on Namenda for that?From: Heidi <hmwjohnsoncomcast (DOT) net>Subject: NamendaTo: mb12 valtrex Date: Sunday, March 1, 2009, 3:51 PMNickie - can I ask if your son's scripting has stopped? If so, this is huge news for me b/c that's my son's biggest issue. I have never heard of someone having a treatment that really works. Some folks believe that it's a yeast issue but my son does not test positive for yeast. Does your son have OCD traits also? I was going in the direction of PANDAS b/c my son does have extremely high antibodies. However, I have never heard of Namenda - how long before you saw improvements? Thanks, Heidi J. We use Namenda for one of our sons to help with his verbal stimming/scripting. His doc believes he has a glutamate issue. It has worked well so far. Nickie NamendaWe are considering using Namenda with our son Anyone using it .any advice appreciated thanks Caroline

[Guest guest]

Heidi: It sounds like our boys are somewhat alike. Riley has OCD traits too and his gamma b strep titers were extremely high. We haven't rechecked for a while. Yes, his verbal scripting, which was one of his biggest issued pretty much disappeared after starting Namenda. I'm not sure how long it took. It was one of those gradual things where one day we just realized that we hadn't heard as much scripting lately and then eventually hardly at all. Unfortunately, during the fall we took him off of most all of his biomed stuff (he is having severe headaches and we found out he has focal epilepsy), including the Namenda and his scripting returned, though not as much as before. We felt we had to take a break while we were sorting out what was going on with his headaches/seizures. We put him back on it a few weeks ago and so far we still have some scripting. It's hard to tell what's going on, as now he is on seizure meds too. We have seen an increase in his conversational speech since starting the Topomax but are not yet sure if there is a correlation. Both his DAN and his neuro. say that it's possible to have an increase in speech when on anti-convulsants. Can I ask what you have tried to deal with the strep/ocd issues. We've tried a few things, but still have some work to do in that area. Thanks!

Nickie

-----Original Message-----From: mb12 valtrex [mailto:mb12 valtrex ]On Behalf Of Heidi Sent: Sunday, March 01, 2009 2:52 PMTo: mb12 valtrex Subject: Namenda

Nickie - can I ask if your son's scripting has stopped? If so, this is huge news for me b/c that's my son's biggest issue. I have never heard of someone having a treatment that really works. Some folks believe that it's a yeast issue but my son does not test positive for yeast. Does your son have OCD traits also? I was going in the direction of PANDAS b/c my son does have extremely high antibodies. However, I have never heard of Namenda - how long before you saw improvements? Thanks, Heidi J.

We use Namenda for one of our sons to help with his verbal stimming/scripting. His doc believes he has a glutamate issue. It has worked well so far.

Nickie

-----Original Message-----From: mb12 valtrex [mailto:mb12 valtrex ]On Behalf Of jcbgalvinSent: Sunday, March 01, 2009 2:58 AMTo: mb12 valtrex Subject: Namenda

We are considering using Namenda with our son Anyone using it .any advice appreciated thanks Caroline

[Guest guest]

Heidi: Thanks for the info. on the PANDAS treatment. Keep us posted on his progress. I'll talk to our DAN about doing this too. We used pycnogenol for quite a while with little success. We too are thinking about curcumin. When we our doc first prescribed the Namenda she was thinking of doing curcumin instead of Namenda. She muscle tested and decided to try the Namenda first. It worked well the first time but if we can't get the scripting under control again this time then we will probably switch to curcumin, or we may switch anyway, just to see which works better. I know what you mean about how much the scripting interferes with daily activities.

NIckie

-----Original Message-----From: mb12 valtrex [mailto:mb12 valtrex ]On Behalf Of Heidi Sent: Tuesday, March 03, 2009 2:44 PMTo: mb12 valtrex Subject: Namenda

Nickie - We started the protocol that Dr. Bock recommends for PANDAS which was 6 days of Azihromycin & Ceftin, then a weekly dose of Azithro for 8 weeks. We will retest his strep antibodies in a few weeks. I believe we need to add an anti-inflammatory but our doc hasn't done that yet. I was very interested in the curcumin and/or pycnogenol. I have an appt next week and I'm going to hit him with several options to push this healing. I really want to attack the inflammation as well as the cause of it.

We have tried two meds for OCD. Luvox and Paxil - both made his symptoms worse so that was definitely the wrong path to take. I wonder if Namenda works on the brain the same way - have to research that one. I really want him to remain med-free if at all possible. But if addressing the PANDAS isn't the solution, I might be willing to try another med. If my son's scripting would stop, his life would change. When he is focused, he's almost interacting normally. However, the scripting interrupts his thoughts and he tunes out alot. Repetitive thoughts are very life altering, as you know. Are you doing anything for the PANDAS?

Heidi J.

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