We are going to go to Walter Reed within the next week. He was diagnosed with PKD when i was 19 weeks pregnant. Now that hes 3 months old, they have said he was misdiagnosed. They dont really know what he has. Or if he has a combination of PKD, MCDK, or what. He could even possibly have an extra kidney. I know, sounds strange right. I just found out most of this yesterday. We have so many Dr.'s appts and are facing a swift PCS back to the states because of his problems. He will probably have surgery next week as his conditions are worsening. His bladder is thickening, he has Hydronephrosis in his good kidney, a Uterer Seal, (they are now wondering if this is an extra kidney), they arent sure if he has valves or partial valves or not, and when he had dye injected into his bladder they found that it went into a strange part of his pelvis. So now they REALLY dont know whats wrong with him. We were being followed by the german dr's but when our case got assigned to someone else at Laundstuhl Regional Medical Center, they looked over everything and decided test needed to be redone NOW. So he contacted Walter Reed in Washington DC and they seemed worried about it all and know that he needs surgery now, they just dont know what type yet. Ill say it like the first dr told me, "Mam, your son has very abnormal anaotomy."

Sorry for the sob story... Im just upset by it all and it helps to talk to ppl who have no clue who i really am. You know what i mean? 

We were being followed by the german dr's but when our case got assigned to someone else at Laundstuhl Regional Medical Center, they looked over everything and decided test needed to be redone NOW.


I am glad they referred you, omg, can you imagine if any of that went untreated?

Sorry for the sob story... Im just upset by it all and it helps to talk to ppl who have no clue who i really am. You know what i mean?


yes, that is one of the WONDERFUL things vs the crummy things about internet 'relationships' is that part......

WOW I do remember about your postings, and all the difficulties you knew you would face. You are a brave woman and I give you huge kudos for keeping your chin up.

I wish there was something I could do. I can, I can send good vibes, positive energy and prayers your way and will. 

I really hope they can give you some answers soon....having a 4 month old myself I can only imagine the pain and sleepless nights you must be going through.
I wish you and your son and the best in the world. 

Kristen, I hate to say this, but the Germans did nothing for is. Ill give you an expampe of what JUST happened last week. They said the Hydronephrosis was better, almost gone, and that his bad kidney had dissapered. I was present thru that US they did, and the one that was done at LRMC. The hydronephrosis has gone from a mild case to a severe moderate case and his bad kidney is def still there. If the american dr had not called us, it would just be getting worse and worse until it was too late. They are saying the surgery will need to be done within the next few weeks. The German dr's said that nothing would be done untill he was one. So, im not sure how to feel about the Dr's now. They almost sent me to the states to have him...looks like that wouldve been the best thing to do.

Doodlebug, thanks for the well wishes. 

WOW,i am sorry to hear about your son being so poorly.I am not sure about the german doctors and why you have 2 different opinions.Did you get one opinion of the german doctors? Maybe you should ask for a second opinion at the hospital.If you need any help with anything(grocery shopping,cleaning ..) ,please let me know and i will be there.Stay strong and don't give up hope,i wish you and your family all the best:) 

The hospital is where I'm getting help from. If we had listened to the German drs, he may have been in renal failure by the time he is one. We have 3 opinions. 2 say he needs surgery. Thanks for the offers :) 

im so sorry you are goingthrough so much right now. my thoughts and prayers are with you and your family. 

I am just glad you got in when you did. Timing is everything in this case. Hang in there. 

Sending good thoughts your way. Sorry I can't add anything more substantial... 

I'm so sorry you're going through all this! I hope they are able to get him the medical attention he needs quickly. Your fam is in my thoughts! 

Wow
Also sending positive thoughts your way. I hope all goes well for you at Walter Reed and your son gets the treatments he needs. 

WOW...I SO believe in the power of prayer...I WILL be offering up "KNEE MAIL" your way..I do believe that if we pray it, believe it, it will happen!! He WILL be okay.
The doctors at Walter Reed will take care of him. 

I am with you HuskerFan... And I will be adding you, WOW, to my daily prayer list... Walter Reed is an amazing hospital. I have a cosin who spent a while there... (he is your typical 8 year old little boy now) Hang in there girl... 

God bless his little heart. I think military medicine is the best in the world, but I would like to say something and I surely do not want to upset our great military docs. I could be completely off course here, but military hospitals see GIs all the time. I'm just not sure how often they see cases like this. Please be prepared to make sure to seek out special children's hospitals in the U.S. if you have to. It is what they do every day. My thoughts are with your family. 

I believe in the 2 dr's that are on the case at Walter Reed, but I might seek to go to Childrens in St.louis. Not sure yet. He is a truly unique case. Thanks for all the support and prayers. We will be leaving next week. I'm just waiting on the Appt times to start with the flight info. Due to the timing, Ill be there by myself for a while. Walter Reed has already recommended that we pcs to the area now. But we are just going to go for a consultation and go from there. We are leaving my oldest son with his great grandmother until we PCS which won't be long. Again, thanks for all the prayers and support! 

I'm so sorry you are going through this :( Let me know if there is anything you need, I'd love to help in any way possible. Best wishes to y'all! 

OH WOW, if there is anything that you need, please let me know! I'll keep J in my thoughts and prayers!