Finding the right team

[1mom2boys]

My son was born with a cleft. He has always treated with Children's Hospital of Michigan, in Detroit. However, the more I go there the more I dislike the place.

For example we had an appointment with the ps and we had a three hour wait. The PS was with us for about 2 minutes and left. The nurse never even came into the exam room.

When we go for team appointments it takes forever. You have to plan on being there a whole day. They divide the appointments into two parts. You do the 1st part one day and come back in two weeks for the second part. You do not receive their report back for months, I just got his report from his last team visit that was in beginning of September.

Also, I swear one doctor never knows what the other doctor is doing. I am always answering the same questions over and over again. Sometimes I just want to scream at these people to read his chart.

Does anyone else experience the same type of things?

Does anyone have experience with Detroit Children's or Mott's in Ann Arbor. I am thinking about switching my son to Mott's Ann Arbor.

Thanks for the help.

[1mom2boys]

Even if you are not familiar with the facilities near me. Can you please tell me how your team appointments and ps appointments are. Do you have long waits? Do you get follow up information? How long is your team appointments?

[Heide]

Hi there, we live in Madison Wisconsin and have our team through our HMO. Our little one has had her lip repair, ear tubes and is scheduled for her palate surgery next week so my experience is limited to this first year. Our first contacts were the plastic surgeon and dentist shortly after our little one's birth. Our appointments are generally prompt with a great deal of personalization from the ps staff (he does other plastics work and I think they like the little ones). they seem to have the cleft clinics 2 times a year and, if nothing is planned, we are not always scheduled for a particular clinic. I find myself making appointments outside the clinics as needed with the individual doctors (ie. ears etc), each of them is very polite (of course, some Drs. are just naturally more approachable) and we seem to get appointments quicker because of our relation to the cleft clinic. The one "drawback" for us was the lack of "take home" information; those first days were so overwhelming and, while we were told things, it just wasn't the same, even if we had just been given this website it would have been so comforting.

We also went to the Shriner's hospital in Chicago to see what their clinic offered in comparison to ours. While we ended up staying with our Madison clinic, I was very impressed there. They were "big" on giving information and the best thing for us at that time is the clinic was more of an all day event; we waited and were called into the different specialist at different times. While we waited we met many children and parents at different stages of the process, it was very informative and reassuring. Their approach is directed by the speech therapist and she was the one we had the most contact with.

In comparison, in Madison, I feel that I do more organizing (its probably better that way as I tend to be a control freak) and have to take notes so that I know when to do follow ups (ie. hearing tests etc.).

In closing may I recommend setting up an "interview" with the doctor and his or her nurse at the new location. I think you have every right to ask them how they run their appointments and who will see you when. I hope this has helped, I know it is a difficult thing when it involves the health of your child. I wish you the best.

[jacksmom]

HI! I also have two little boys, with my seven month old having a cleft palate only. We were just at our team visit yesterday and our appointment lasted about three hours. The Ps was barely in the room long enough to say, "I'll send my nurse in to set a surgery date!"I don't know what else he could have done, but it just seems like there should be more to it! I just try to be patient and prepare myself ahead of time for a long wait. I think it depends on the amount of confidence you have in your PS. If you think that he is the best doctor for your little one, then it may be worth the waiting, since he is really doing the most important work. I agree with Heide as far as organizing follow-up visits, and making sure we get test results... I pretty much am on my own to make sure all of that stuff gets taken care of. I also work at a doctor's office,so I know that as hard as we try to make sure and give results and schedule follow ups, some things still fall through the cracks! Oh, and yes, we did get asked ALL of the same questions that we had been asked at our first visit! Felt just like you and wanted to scream....Read HIS Chart!!!! Anyway, hope this helped a little. I would base my decision on the work of the PS. Also, keep in mind......some of the best doctors have the WORST bedside manner!
Allison

[1mom2boys]

Oh, THANK YOU!!! I thought for a minute there, maybe I was nuts. I guess that this is just how this system works... It can be so hard to tell unless you year from other people.

Our PS did a wonderful job on my son's repair. He was born with a unilateral cleft lip. He had his 1st repair when he was 4 months old. His nose and lip look so natural that his preschool teacher didn't even notice he was born with a cleft. His speech is excellent and is not enrolled in any speech therapy. He had battles with ear infections and of course his teeth are a mess. But the PS is very skill full and I do have complete confidence in her. It's just the rest of the process that is a little bit frustrating.

I will try to get some pictures posted here so you can see him.

I am happy to find this board. We are know waiting for a surgery date for a second revision to his lip. Also when he's about 7 he will need a bone graph for a small space in his upper left gum. He were hoping this would close on it's own, but it hasn't. So a bone graph is in our future.

Thanks again.

[chicka-monkey]

Hello, I have a one year old girl who had her repair done by Dr. Phibbs in Toledo. (45 minutes away from Detroit) He did an excellent job! Everyone comments on how well it was done, if they even know. He is a great plastic surgeon. The cleft team gets together one a year. The appointment takes about 2 hours because we talk to everyone who would be involved. We are seen right away and constantly by everyone. They are there for as long as we have any questions or they have comments.

Good luck! It's hard finding the right person that you are ok with in your heart, because you have to live with that decision for the rest of your life.

[jdabliz2]

hi 1mom, i too am from detroit. we take my son to shriners in chicago, and have nothing but nice things to say! if you would like to hear more about our experience pleased drop me an e-mail, and i will be glad to talk. joe

[tkebino]

our ps is the same way. We wait forever and he checks DD and leaves. BUT if i have questions he stays as long as i need him. We did not have a team just the ps and a separate ENT .