What would you do? travel to see doc.

[4imprints]

Ok - so the specialist in my son's condition (Klinefelter's) is based out of Maryland. Unfortunately - I don't drive and I don't know how I would be able to manage that trip from Louisiana with three kids - one being 4 months old. I asked about doing an over the phone consult. Which - medically speaking - I don't think is the best because she can't see my son. The consult - for one hour - costs 250. I don't care about cost but just giving the info. They will be opening a clinic in San Antonio within the year (my son is 2.5 years). I do not know if is a permanent clinic or if it is only a week long clinic.

Which would you rather? A 250 phone consult next week or waiting to travel 12 hours to be able to see her in person (do not know what the cost is). But like I said - that isn't really a factor - whatever is needed right?

[sbgrace]

Oh man, hard decision. What do you hope to get out of this consult? How helpful it is likely to be would be a deciding factor for me.
My insurance won't cover phone consults. However, if you add in 12 hours drive at current gas prices and staying somewhere at least over-night and food and all my guess is you'd be spending that anyway at least? Can the nurse tell you how helpful the dr. feels a consult would be?
My experience to see an expert in mitochondrial disease we traveled 12 hours. Well worth it in our case (travel with my son is horrendous but it was still worth it). Part of that in his case though was we didn't know what we were dealing with and he needed testing. I've done phone consults with other issues that have gone ok. I think it really depends on the complexity of the situation.

[JohannasGarden]

I don't know enough about Klinefelter's to say. With some conditions, most of the information can be determined through lab work, and a phone consult would be fine. With others, observation is important, although observation is always a little piece that may or may not convey what your main issues are.

What are you hoping to get out of the consult?

Sherri

[4imprints]

(oops...I meant I don't fly..not "don't drive"!)

Thanks....I emailed the nurse back and asked her which she thought was best. One reason why I consulted the specialist is because my son is hearing impaired as well (unrelated) and I thought a specialist would be able to help us seperate his issues and determine which is related to what and how to handle it since his case is a little more complex than the normal KS boy. My son was also born with malrotation of the small intestine - again - nonrelated. But it is a part of his history. he is in physical therapy now due to low tone from the KS - typical. As well as attending an oral school for the deaf. The problem is that very few doctors know anything about KS even though it is relatively common (most common genetic abnormality among boys and the second common all together from what I remember reading) and looking into groups doesn't help.

Hmmmmm....decisions decisions

[father_knows_best]

Twelve hours...eeek...thats a toughie. What would i tell me...uhh..must fight my imagination on what i would do...ahh..cant fight it... If you do need to drive do it with two driver if possible, The day before run em hard and have the car packed as soon as they konk out and drive like the wind. upon waking, If you can pretend that they get carsick then give them Gravol...they might be awake but theyll be calm. Pack all the food you need and feed em while driving, and its better to stop for an hour and run em solid in a field and continue than make em suffer with energy. Pick up the DVD with a screen for the back of the head rest and enough movies to last then make the best of it..wow...Let driver one drive the night so that you can work the kids in daylight. Drive before bad weather comes and plan to arrive on time.....that not a drive id want to make but hearing a twelve hour drive just sent me into emergency planning mode..sorry...

[mamaverdi]

I would go in person. Can you take a train? The cost was less than a plane, you can get it at the last minute, and it takes less time than driving. From LA to Maryland, there is an all-train route too.

We're going back to Cleveland from Houston in August.

[mamaverdi]

On this note, and a little OT, anyone have any ideas how to be assured you get a rental minivan with a built in DVD player?

[AuntLavender]

We flew to Los Angeles from Orlando

so I'd vote for going in person. Best wishes on whatever you decide.

Sincrely,
Debra, homeschooling mom of 4 ages 10 1/2 (AS), 9 1/2, 7 1/2, and 4 (Apraxia, Dysarthria, HFA)

[peekyboo]

I vote in person as well, based on my dd and what we go through. We were refered once to a developmental clinic at U fo M. I was told that the group of doctors would go over her records and decide which doctor would be the best to see her. I swear, they just saw "almost 2, not talking" and so sent us to a psychologist, when I thought we'd see a developmental ped. And they sent us there for an autism eval, when autism was the one thing everyone who had dealt with her knew she didn't have!

I think doctors need to see the full picture, the whole patient, how they are personally. Also, you can hold the doctor hostage in the exam room and ask all the questions you want and point out every little freckle and dimple and ask if that's normal

[peekyboo]

Originally Posted by mamaverdi

On this note, and a little OT, anyone have any ideas how to be assured you get a rental minivan with a built in DVD player?

Tell them that if they don't give you one, you're leaving the children with them?

You can actually buy a set with two screens at Targt for like $130 or so. Best investment we ever made (we do a 14 hour drive to Arkansas a couple times a year.)