Re: Thoughts needed, please.

[Guest guest]

IMO, if it's covered by insurance and isn't going to cost an arm and a leg, I would do it. I think any and all testing is helpful, even if it's just to say there's nothing wrong here. That doesn't mean your geneticist will be biomed friendly but you don't need them to be. If it's not covered by insurance, I probably wouldn't do it. It's expensive without insurance. A friend of mine just had some genetics done and it cost her insurance something like $4k.

Cheryl ~http://www.gryffins-tail.blogspot.com~~@Gryffins_Tail~

hello.

I'm new to this group, although I recognize some of you from TACA. Anyway - I know most of you are seasoned vets with boimed and have done a lot of things with the medical side of all of this, so I would really appreciate your feedback with the following. I sent this message to a local group I'm a member of as well.

We just found out our 2yr old has the same genetic issues on the mthfr gene as our 4 year old on the spectrum and our ped has asked if we want to go to a geneticist. (and just to say it - the 2y/o is completely fine so far - but we've done things WAY differently with #2 because of #1)

I'm not sure if it's worth the time and $$ since we have discovered some of the implications 'the hard way.' Have any of you seen a geneticist and do you have any reasons to go or not to go?

Thanks!

Jen

[Guest guest]

We saw one last summer. We are working with a new pediatric neurologist that we actually like. She suggested that a genetic workup might be worthwhile. Our son has an immune deficiency that is considered " rare. " Our son is 11 and we have never done a genetic workup because we knew it wasn't genetic. We saw the geneticist at a university teaching hospital. They did a full work up and found nothing…… just like we suspected. Snippet MTHFR was found, the less significant snippet. We had to really push for the MTHFR testing. The geneticist did not want to do it. They said this finding was " not significant. " It sucked up time for preparation. We spent a couple of hours talking to the genetic counselor and the geneticist. Our son had to have 7 tubes of blood drawn. One test alone was about 4 grand. Insurance paid for it all but otherwise the cost would have been a deal breaker for us. The conclusion was that our son had an exhaustive, state of the art genetic workup and nothing was found. Our son has Hypogammaglobulinemia, Hypothyroidism, PANDAS, Seizures, and Autism. Pamela From: mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of jmushock@...Sent: Monday, January 24, 2011 2:00 PMTo: mb12 valtrex Subject: Thoughts needed, please. hello. I'm new to this group, although I recognize some of you from TACA. Anyway - I know most of you are seasoned vets with boimed and have done a lot of things with the medical side of all of this, so I would really appreciate your feedback with the following. I sent this message to a local group I'm a member of as well. We just found out our 2yr old has the same genetic issues on the mthfr gene as our 4 year old on the spectrum and our ped has asked if we want to go to a geneticist. (and just to say it - the 2y/o is completely fine so far - but we've done things WAY differently with #2 because of #1)I'm not sure if it's worth the time and $$ since we have discovered some of the implications 'the hard way.' Have any of you seen a geneticist and do you have any reasons to go or not to go?Thanks!Jen