Tuesday, January 12, 2010

Our Journey to Johns Hopkins

Easy drive on both ends, one never knows with a drive that involves the bay bridge. The drive was the easy straight forward part of the drive. Easy park and even lightening quick into the exam room in my opinion. Much quicker then my regular peds office. But then that is not necessarily a bad thing, because my regular doc takes all the time every visit takes. This visit felt very much like ding time is up. Or maybe it does not take long to say we really have no clue,

Oh wait they do have one clue at least. This is a genetically linked disorder. So we have a 40% chance of passing this along to another child. 2 in 5 does not look so bad on paper or monitor as the case may be. Somehow that felt like strike two against doing it again when i first heard it. Strike one is of course a third surgery. just writing that makes me shudder for some reason. Tabytha has a 70% chance of passing it along to her children. Nice happy news and that is truly the only concrete thing that they knew. Oh wait they also know that 80 % of all cases resolve by age 5. some do still clear up after that just not at a significant enough rate to warrant mention-if my kid was the one that resolved naturally at age 7 i would call it very significant! But that is science for you.

Now to what they don't know. They are not sure of the long term effects of antibiotics. Um yeah whatever i know that it can't be good, especially since they don't even know for sure that it prevents the recurrent utis. So they have decided after almost 40 years of this standard treatment to check it out. Largely because moms like me are questioning the effects of long term use and the government is questioning the cost. I mean a 40 year old study from the uk is all they have to go on. Uh hello 40 year old study done by a socialized medicine country. wth? How did that hang on for so long. Way more studies proving vbac is the way to go, yet that is declared a big fat taboo. Medicine makes no sense to me. Maybe the government will question the cost of c-sections and give 2 time losers like me some hope.

They also don't know for sure that they surgery prevents utis. Great so what exactly do we do? I am leaning between two thoughts on this. Surgery is completely off my list unless further tests reveal any serious defects in the kidneys. So my first thought is sign on for the protocol and help have answers for the next generation. The second one is pull her off the antibiotics right now. So for the now at least i am going ahead with what i have been doing 1/2 tsp of bactrum everyday. This option seems to leave the most options right now.

The good news is we are level 2 of 5 and only on one side. According to the specialist pretty impossible to catch on pre-natal ultrasound. That is quite reassuring to me. So we need to back for another procedure referred to shorthand as a dmsa. It has me super freaked out, they need to sedate her. So they can have her lie very still and see how the contrast dye injected in an iv concentrates in her kidneys. Anywhere it does not go is assumed to be a damaged and scarred area. Big fun. The doctor will meet with us right after so we do not need to do another trip there. Well based on the schedule i have tentatively for the 28th it really means appt for test @ 9:15 am with at least an 8:45 am arrival time and an appt with the doc at 1:15 that afternoon. So i guess i will be kicking it all day at Hopkins. I guess we will be buying food out that day.

So i am waiting for that appointment to make my final decision on the antibiotic. I would love for other mothers to get better answers, but medicating for no good reason is so against my nature. For a condition that can affect up to 20% of the population how do we still know so little? Well the 20% is even a guess thanks to a study in Denmark where all children were given a vcug and the defect was noted in 20% of all babies. The actual number for girls is right around 4% of the population who get it discovered. So that means like 95% of people with present no symptoms. I wonder how this links to kidney disorders in adults? Or hypertension?

It is just all so murky and unsure. No matter what it looks like the doc will not do another vcug for 2 years. So somewhere between 2-5 years of just waiting around. UGGh not my mentality at all. It feels like aj all over again. But only a little worse because this time i know that something is wrong. But this does not seem to be on the same boogey man level that the options for aj were. I guess there is hope in that. Maybe she wont be so cruel with this one for me.

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