Minnesota Clinic

So I have some time to talk about the Minnesota CF Clinic. Here is a little background info. In 05/06 Branson was not doing very good cf wise. Starting in Oct 05 he kept getting fevers which would turn into colds and then a horrible cough. The cough starting getting worse and worse and would turn into coughing fits. Branson would turn purple during these coughing fits and it was very scary. He lost a lot of weight and would not eat. This went on for months. At the time we lived in Dallas. The Dallas cf doctors tried and tried to figure out why this was happening to Branson but came up empty handed.

He went into the hospital for iv meds but this did not help. They tried different antibiotics and this did not help either. Well I got on the internet and found a cf parent email list and found out that the number 1 cf clinic in the US was in Minnesota. I called and got the first appt they had which was in 3 months. Finally our day came and we waited in the little room for Dr Warwick. He walked in and right then Branson started one of his coughing fits and the Dr asked if he was on pulmozyme. We said yes and he said you need to get him off because he is having a bad reaction to it. We got Branson off pulmozyme (which is a inhaled med that is suppose to thin mucus and they use it as a preventive med) and the fevers, coughing fits, ect all went away. Dr Warwick in my opinion saved Branson's life at that time. Branson had been put on pulmozyme 5 months before any of the symptoms started and that is why we didn't put it together that it was the pulmozyme.

Our appt started at 9am with Dr Warwick and went till 5pm with a two hour lunch from 11 to 1. That is how long Dr Warwick spent with us at the Minnesota clinic! He tried to teach us everything he knew about cf that day. He is amazing!! He is in his late 70's and still sharp as a tack! Not only is he a doctor but he is a scientist which makes a very big difference from what I have learned. Back 40 years or so ago when kids with cf were not making it to 2 years old Dr Warwick was making people live to their early 20's. They have not lost a child or teen to cf in more than 2 decades! That is a pretty huge deal because there are still kids out there not making it to their 20's. Dr Warwick is also the doctor that invented the vest.

Dr Warwick is now retried but still does consultations which is what we did when we saw him. There are two other doctors there that have been trained by Dr Warwick. I have not met with those doctors. I feel very very lucky that we got to meet with Dr Warwick when we did! He is a very caring doctor and person! Not only did he take a full day to meet with us but he also sent us several emails to ask how the boys were doing and to follow up!

So anytime I start to get scared about cf I want to instantly move to Minnesota. The thing is Dr Warwick is not the main doctor now so I don't know how this will affect the MN clinic. Our doctor now is very very good and is very aggressive so I feel very blessed to be where we are but like I said any bump in the road and I start packing. The thing is I don't want to just get comfortable and then years down the road wish I had done more or that there was more I could of done. But at the same time I don't want to be driven by fear and up and move everyone and get down there and we just end up doing the same things there that we were here. So moving to MN has been on my mind. Back when Dr Warwick started the MN clinic had 16 patients and now has more than 500. I just wish the MN Clinic was here!

Here is a link if you want to read more

http://www.uofmchildrenshospital.org/Services/Services/c_195833.asp