9 Month Old with 50Cm Head Circumference and Other Symptoms.

That sounds so overwhelming. You must really be beside yourself with worry. I know I would be.

There isn't a whole lot you can do right now. I'm sure that is very frustrating, but I hope you can take some comfort knowing that at your appointment you will be speaking with the person who actually does know what is going on with your son and what the next step is.

My boys have both had to see specialists at different times. There is really nothing I could do to prepare unless it was to fill out a questionnaire before hand. We have been very blessed with doctors who take their time with us, really try to be very clear with us and are willing to answer questions.

One thing you can do is keep a notebook or pad of paper with you and just write things down as you think of them. They could questions, observations, whatever. Anything that pops into your head, write it down. Bring that with you to the appointment. Before the doctor leaves, be sure to look over everything you've written down and make sure there isn't anything else you'd like to mention.

Other than that, try (even though it will be very hard) to simply be and enjoy your time with your. It's only natural to worry, but do your best to just be present to your son and your family. Right now, you are still waiting for answers. When you do see the doctor, you will begin to deal with whatever you need to deal with. Until then, the only thing you can do is write down notes, and live your life.

Wishing you peace as you wait for your appointment.

Good answers below. In my experience, waiting for the appointment is so hard, so getting moved up because there was a cancellation or because some other patient was transferred to another specialist is actually a good thing. Try not to read too much into it. It's better for your child to see someone, right? You'll get answers sooner.

If you haven't already, start a 3 ring binder with sections in it for different things: reports, lab work, appointment reminders, and plenty of looseleaf paper so you can write down your questions and create a running list. As you think of things, add them. Leave space after each question so you can write the answers. Take notes at appointments and don't be afraid to ask a nurse or doctor to write something down for you. If you can, take another person with you who is neutral and calm, and put that person in charge of the notes and checking to be sure you covered all your questions.

I did this when my husband went through a whole bunch of appointments for a mystery condition that turned out to be a very rare endocrine tumor. It was invaluable as I went from office to office, as doctors asked when he saw whom and for what, etc. Have a pocket for 3 pens ('cause you, know, stuff happens and you lose one and the other runs out of ink) and for any handouts or appointment cards you are given, and for any disks you get (I was taking images from a sonogram and so on). Those plain sheet protectors are good - you can slide stuff in without having a hole punch on hand. A closed pocket is good for disks and pens, anything not made of paper.

Take a few small but new toys in the diaper bag so you can keep your son occupied with something he hasn't seen before. And put in snacks for you, plus a booklet of crosswords or sudoku plus a mechanical pencil that never needs sharpening (this is good if you have to turn off you cell phone and can't use it). Make this a "go bag" that's always stocked with more than just normal baby stuff, so you don't have to think about it if you have to go on short notice, or if you get into a longer appointment or a crowded waiting room.

I’m sure you are concerned, but I’d suggest you try to relax and trust that whatever you learn, he is still your baby who you love and will help with whatever challenges he has. The moving of appointments could be related to concerns, or could just be related to schedules and convenience for the nurse practitioner and/or the doctor.

Is your baby experiencing delays in his overall development? I guess I’m assuming he is, since you had the OT eval and neuro, so I would make sure he is getting Early Intervention. Maybe you’ve already done this, so just remember, all the things you are describing, including genetic differences, can have profound or minimal impact on development, and therapy can make a big difference.

As others have suggested here, keep a notebook with your questions before the appointment, and then bring the notebook to the appointment to write down what the doctor tells you. Don't be embarrassed to ask about anything you don't understand. Doctors sometimes forget that most of us, unless we've also been to med school, don't always understand their lingo. Also, you can then bring the notebook to his pediatrician, or back to neuro if you go, since doctors don't always communicate well with each other. Take care.

Peace and calm to you as you wait for your appointment. It’s hard to wait but until you have facts there is nothing else to do. Focus on loving your little one because that will be the constant throughout his life. At the visit, have a notebook to write down what the doctor says or even record the conversation if the doc is ok with that . Ask the doctor how to get further questions answered: Call, email, etc. Now, try to relax and have a nice weekend with your son. Paying attention to him helps to keep worried thoughts at bay.

I'm responding to what questions you should be asking.

In that wonderful notebook that our experienced Moms have recommended you bring, you will jot down observations and questions. Professionals will often answer questions in correct medical speak, because that is the language they think in all day long. Please don't just take all the information down and think that it will become clearer at home.

Rather it is very helpful to generally ask another question as a follow-up for clarity, such as: "Could you tell me that again in another way?" and/or "Of all the things you shared today, what is the most important for me to understand." Having conducted a gazillion meetings, I find that these questions really help professionals reconsider the points they are trying to communicate.

And a bit of positive input here. Not all diagnoses are bad. Some just give you a roadmap for things to look out for. I have had genetic diagnoses given to children that helped their parents provide health services as necessary, preventing larger problems. And those children have gone on to have wonderful, successful lives. All my best.

Syndrome is a word they sometime use instead of saying 'group of symptoms' if that helps.

Often they move up appointments if people are planning on taking vacations (maybe that time of year), to fit them in or if there have been cancellations. That has happened to us before. I've suddenly been moved up even by a month.

I would ask what tests they plan on doing next, what's the game plan, what you should be watching for (I kept logs), what you can be doing (if you need to get him physiotherapy, etc.), and any devices you may need to invest in to make things easier for you to care for your son, for him to sit up with, get around with, make play time easier, etc.

One of my babies was slow to hit milestones and I did physio with him at hospital and at home.

Make sure you ask everything you want to (make a list) - pepper THEM with questions. That's what they are there for.

Notebook is great idea and keep a log. Ask them what you should be charting/logging for your next visit.

Best to you and babe :)