Who coordinates all the treatments/therapies for you? Looking for a doc who sees all the pieces...

[Anonymous]

I've made another couple posts today, but this one is about piecing it all together...

My daughter has reflux, oral motor chewing issues, sensory issues (with everything and sometimes food), she has a chromosome issue, she has microcephaly, she has some ASD behaviors, teeth issues, a brachial plexus injury along with very poor fine motor skills on both hands, possibly vision issues, and possibly teeth issues, etc.

We see a geneticist and a neurologist, we have our therapies at home. We're scheduled to see a GI and a Dev Ped and be seen by the Brachial Plexus Clinic at KKI, but who can we get to piece all the pieces together? I feel like I am the only one who has seen/knows all of her issues and nobody ever sees all the issues. Is a Dev Ped the doctor to oversee everything? Or do they deal mostly with behavior disorders like ASD and ADHD?

Any suggestions from moms or dads out there that have little ones with lots of issues and you have found someone that is good at seeing the "whole picture" with your little one?

Thank you!

[Anonymous]

That's YOUR job as mom. You are the manager of her services and treatment. No one knows your child better than the mom. If you leave it to someone else, sure enough something will always get missed. Be the DIVA and take control.

[Anonymous]

At Children's Hospital they have a "Complex Care" department who looks at all the areas where you child is seen and recommends other areas/ therapies which might be useful. You could ask if KK has such a program. At CNMC with complex care you get a parent navigator who helps you get services and has been really helpful to me. My child sees 9 doctors at Children's and one at Georgetown.

The Developmental Pediatrician makes recommendations for my child, he does not coordinate, but makes recommendations which the parent needs to follow up on.

I think you should call your insurance and see if they can give you a case manager.

[Anonymous]

Anonymous wrote:At Children's Hospital they have a "Complex Care" department who looks at all the areas where you child is seen and recommends other areas/ therapies which might be useful. You could ask if KK has such a program. At CNMC with complex care you get a parent navigator who helps you get services and has been really helpful to me. My child sees 9 doctors at Children's and one at Georgetown.

The Developmental Pediatrician makes recommendations for my child, he does not coordinate, but makes recommendations which the parent needs to follow up on.

I think you should call your insurance and see if they can give you a case manager.

PP here, dev pediatrician has made good suggestions in pretty far reaching areas. I would get an appt. with a dev. Pediatrician, it can take a long time to get a first appt. Our Dev Pediatrician, reads all the reports for all the doctor's my child has seen since the last appt with him and is therefore able to really keep up on his care.

As for the chromosome issue, I found the best source was http://www.rarechromo.org/html/home.asp
For us, better than the geneticist. Read the pamphlets and see if they are of help.

[Anonymous]

Thank you ladies for the suggestions. Yes, I know I am in charge and I am making it my full time job, just would like someone with some medical training to work alongside me because I don't really know "what I'm looking for". And thanks to the PP, I do belong to Unique and have met some other families through them with the same chromo issue. I will check into the Complex Care issue at Children's, thank you!

[Anonymous]

I'm sorry, 19:14 was way out of line and judgmental. I think its incredibly important to have a kind of case manager when you have a child with disabilities. Ours is our developmental ped, Dr. Shapiro. OP, your question is important and you absolutely need a medical professional to help you coordinate everything. please ignore 19:14.

[Anonymous]

Ditto 22:35. 19:14 has no idea what she is talking about. Dr. Shapiro is the person who sees the whole picture for us and helps us figure out what we need. Until we started seeing him we were very confused and really needed some guidance on what our DS needed. It's very difficult to navigate various doctor's and therapists on your own. A good developmental pediatrician should be able to guide you along the way and help you see the whole picture of your child.

[Anonymous]

Yes, 19:14 -- the family is the manager of the services and appointments. Point taken. But OP is talking about a team approach for medical care. In our case, it's our neurologist or neurogeneticist who "drives the bus" and this is why I like KKI. My daughter's neurogeneticist, orthopedist, physiatrist, neurologist, etc. all know each other by first name. They will pop in on each other's visits. They will email each other and we will all email together. There is a sense of a team approach. We were at Children's for two years and never got this. In fact, from appointment to appointment, I felt each doctor forgot about us.

[Anonymous]

NP here, but sounds like OP read my mind! DD has microcephaly, hypotonia, brain disorder, genetic disorder, GI issues, what else? We go to Children's and have been very happy with our team there, but I am wondering exactly what a complex care person or developmental pediatrician would do for us? Our regular pediatrician receives and reads all the specialist reports, but it seems like (similar to another poster) that our neurologist/geneticist drive the bus -- e.g. kids with this genetic anomaly sometimes have heart conditions, so go see a cardiologist. Since the developmental pediatrician probably would not know as much about the brain or genetic disorders DD has, how would they help us beyond what our regular pediatrician already does? Do they also coordinate therapy? I find that coordinating what we do in DD's various therapies (OT/PT/ST) is more challenging than the doctor's appointments. But, I am always looking for ways to improve how we manage things so am genuinely curious as to exactly what a developmental ped does -- can someone give specific examples? -- because the last thing we need is another doctor to add in the mix unless they truly make my life a ton easier.

[Anonymous]

OP here - thanks for all the info.

05:54 post, are all your docs who know each other by name and drop in on each other's appts, are they all at KKI? What is the overall situation/condition with your LO?

08:53, how old is your LO? I'd be curious to talk to you more since it sounds like our LOs have a lot in common - I'd be curious to talk about who you have as your docs.

I think I need to see about Dr. Shapiro and find out if/when he might open to new patients. I do have an appt with Conlon scheduled for Oct. But as 08:53 said, i am not sure if a Dev Ped is our answer since we think this is genetic related....

Keep the opinions coming - thanks so much!

[Anonymous]

19:14 here. My post was neither disrespectful, nor rude. Nor was it meant to be. I manage my child's progress. It is a tough road, and there was a huge learning curve, but I don't regret taking the helm. Everyone I work with is a second mate, I just control the ship. When you put yourself in charge, you are forced to learn everything. If you ever want to get a handle of how your child is really doing, or be able to make the big decisions that you are faced with, you have to immerse yourself in it and become an expert on your child and his/her issues. Perhaps it's a personality type....i'm making no judgments on others who don't do this. For me, I HAVE to be the one making the decisions.

[Anonymous]

We also see Shapiro and depending on how much you want to involve him (and pay for consultations) he will drive the bus. He knows a lot of people in the MoCo/DC area and at Children's so he can make specific recommendations. It would be worth calling to see if he could help you.

[Anonymous]

Anonymous wrote:19:14 here. My post was neither disrespectful, nor rude. Nor was it meant to be. I manage my child's progress. It is a tough road, and there was a huge learning curve, but I don't regret taking the helm. Everyone I work with is a second mate, I just control the ship. When you put yourself in charge, you are forced to learn everything. If you ever want to get a handle of how your child is really doing, or be able to make the big decisions that you are faced with, you have to immerse yourself in it and become an expert on your child and his/her issues. Perhaps it's a personality type....i'm making no judgments on others who don't do this. For me, I HAVE to be the one making the decisions.

Everyone makes decisions for their child's care. Everyone is immersed in their child's issues. I still don't think you understand what OP is asking. Many doctors see only their piece of the puzzle and don't get a big picture of all the child's complex needs. It takes a special clinician to step back and integrate all medical issues and all clinical care and to invoke a team approach. This is why kids are often on so many medications, prescribed by so many different doctors.

[Anonymous]

Anonymous wrote:19:14 here. My post was neither disrespectful, nor rude. Nor was it meant to be. I manage my child's progress. It is a tough road, and there was a huge learning curve, but I don't regret taking the helm. Everyone I work with is a second mate, I just control the ship. When you put yourself in charge, you are forced to learn everything. If you ever want to get a handle of how your child is really doing, or be able to make the big decisions that you are faced with, you have to immerse yourself in it and become an expert on your child and his/her issues. Perhaps it's a personality type....i'm making no judgments on others who don't do this. For me, I HAVE to be the one making the decisions.

We ALL manage our children's progress. We ALL control the ship. But it really does serve our children's interests to have a medical doctor who can assess if interventions need to be changed, it other providers are actually doing something helpful, if there are interventions that need to be added as the years go on, and to coordinate medications. Having such a professional is not shirking or taking the easy way out. And no one else makes the decisions but us, the parents. Of course we're the ones who make the decisions.

I agree that you don't really understand what OP is looking for.

[Anonymous]

8:53 here. My DD is 8 months old, so we are at the start of our journey. The positive part about the brain disorder being identified as genetic is that it means we don't have to subject DD to any more tests. We know the cause, we know it won't get worse, and we move forward. Still hoping someone might answer the question as to what specifically a developmental pediatrician might do, and am wondering whether it wouldn't be as helpful for us where the neurologist/geneticist are most in the know as to symptoms of the disorder.