My Daughter Was Diagnosed with Macrocephaly - Help

Hi E.,
As I read the other responses, I am so glad that things worked out well for everyone. For us we knew something was wrong when my son was 9 months, but couldn't get our pediatrician to listen. We went back a few time before they ordered an MRI and found a large cyst in his brain wich they drained and now he is 4 and doing very well.
I write for 2 resons first is that my son was not using his hand on one side - so when the brain is under pressure there are some big signs that let you know something is wrong. His head also grew very quickly but the Peds were not concerned about just that fact.
Second is a CT scan is fast and they may be able to do it without sedation. An MRI is another story since it can take an hour to conduct.
My son has had several CT and MRI with sedation at Luthern General Hospital and they give him chlorohydrate. From my understanding it has a sedation affect similar to benedryl in a larger dose.
It is not that bad and they are very conservative with the doseing and watch them carefully.
Sounds like your Dr. is being conservative and a CT without sedation is not that bad of a test. Simialar if you had to check for a broken bone.
I would say to make sure everything is ok to have the scan but, try first without the sedation. I know how it is to worry and once you find out what you have to deal with if anything it is better then the unknown.
I hope everything goes well.

Hi E., My daughter at 11 months had a CT and she was not sedated. I just sat in there with her and held her in place. See if they will let you do this. If not, my daughter also had a MRI where they had to sedate her. She was fine afterwards. The sedation is generally done with a little oral solution for this age.

Let me know if you have any questions.

Good Luck and God Bless
A.

If you are uncomfortable at all, I recommend a second opinion before agreeing to any sort of sedation. Doctors are human - you need to make the right choice for you and your little one. I wish you the best of luck and hope that all is well.

I just had a CT scan. If they are going to do contrast they will have to give her an IV. She cannot move her head during the procedure that is why they need to sedate her. I am apposed to putting children to sleep also. It will be a small dosage and she should only be out a very short time. They use this to fix small breaks like a nose. The room will have a large open machine. You lie on the table and are moved back into the machine. I machine does make noise but not like an MRI. For a child I feel this will be very scarey. I do not want your child to be afraid of the hospital or doctors. You doctor has never preformed this test on a child himself. I would listen to the people who preform these tests all the time. When I had one of MRI a child was terribly upset and crying because he had to have an MRI. I think your doctor is wise to check out your daughter and confirm that all is well. Good luck to you.

My son had to have a CT at about the same age. That was about 5-6 years ago.

I wouldn't skip the test without getting a second opinion, preferably from an expert in this area (maybe someone at one of the children's hospitals) - 2 standard deviations sounds like reason to be concerned to me, and hydrocephaly is treatable. Chances are good it's just a measurement oddity or a growth spurt, but the consequences if it is that small percentage of something else are pretty serious, aren't they?

I don't know about the velcro thing, but my son was put to sleep for the test, which was done at Children's in Lincoln Park. They will attempt it without it if you ask. Definitely, ask lots of questions first.

Of course we were anxious about it, but it is not general anesthesia. They basically just put them to sleep. Your child will be breathing on their own and monitored the entire time, with a response team nearby just in case. My son was disoriented and crying when he came out of the anesthesia - it was upsetting, but temporary. And since they were testing for something that could be fixed if they found it (fused skull plates - which he didn't have, thank god) we thought it was worth the risk - otherwise, if he had had prematurely fused plates it might have caused brain damage.

Good luck - I know how upsetting it is to read online and find such scary information sometimes. I hope that everything turns out to be just a false alarm.

Listen to your pediatrician. More important, always do what YOU think is best and don't second guess yourself.

My daughter needed a CT when she was 5. We made the appointment first thing in the morning and kept her awake for most of the night. The doctor gave her a relaxer when we got there and she slept through everything. They were checking for a brain tumor and yes we worried like crazy until he results came back. Everything turned out fine. Oh, by the way when she was borned they measured her head three times because it was so large!!

Cheryl

E.,
I'm so sorry for the worries! I hope you're able to find out what's going on with your little one! We'll be praying for the best.

I know nothing about Macrocephaly and have only dealt with Hydrocephalus in very severe cases, I did however want to touch on sedation. I understand the fear of having such a little one sedated (and the dangers) but also wanted to point out that at 15 months a CT scan will be terrifying for your daughter. She'll be strapped down and while the procedure is harmless I know adults who can't stand it without sedation. They'll also need her to stay still, which is obviously very hard to accomplish with a 15 month old!

I should also say I'm not one to generally sway this way! We don't even use Tylenol in my house! But if the psychological repercussions/trauma can be avoided with sedation it's well worth it. My son (18 months) just had a dental procedure he had to be put under for, and it was so scary for us so I understand, but am speaking from experience.

All the best!
A.

It seems to me that if your daughter's head hasn't grown significantly over the course of her doctor visits or that you have noticed a difference in her behavior/development, there should be no reason for concern. I'd likely get a second opinion, taking a copy of her med records w/ you to new doctor. My son also has a very, very large head, and at his (i believe) 12 mo exam, the pediatrician (who was not my usual doctor) decided that it would be best to measure his head 3x, it was just over 19 inches which put him over 100%, so she said "do you want to just say it's 18 and 3/4 inches" which kept him just under 100%. I said Nope that's not going to work for me, i'd rather not fudge my son's medical record and told her that I wasn't concerned about the hydro/macro, but would keep an eye open for any difference in behavior and measure on my own. My usual Dr (Morris) was on vaca during this visit so I went to a different Ped, Dr. Morris said not to worry unless there was a difference in behavior or if his head grows off the curve he'd created for himself. I don't know what "two deviations" means, is that a 1/4 inch for each "deviation"? Is that beyond her normal growth curve? Seriously, I'd discuss it more w/ doctor, do some research on your own (Mayo Clinic online has great site for research) or another pediatrician first, check out some books at library for onset of hydrocephaly, what to look for (signs/symptoms). All said w/ caveat that no self-research should replace your doctor's experience and knowledge... Good luck to you, am betting all is fine and that your daughter's just got a lot of brains in there! :)

I don't have any advice in this matter, but I wanted you to know that you and your sweet little girl are in my family's prayers. I hope everything goes well, and I will be thinking about you both. Best of luck.

My son is 16 months old and had this starting at 9 months of age. He wasn't officially "diagnosed" I guess, but his head circumfrance went from 50% to off the charts at 9 months. He also doesn't look like he has a big head and has no developmental delays. We had a CT scan done at Good Shepard Hospital in Barrington and he was not sedated. I thought they were very nice there. He cried the whole time, and it was hard to watch them put velcro him down to the table thing (they completely velcro them down so they can't move- that way they don't have to sedate them. It lasted a whole 10 seconds and he was done. The results showed he was fine. It must be something that runs in the genes. My husband has a big head and neck, so I am assuming his family has it in them. So, I know it is hard, but try not to worry. She sounds like she is fine since she is developing normally. The only thing I have found with this is that a lot of hats don't fit him properly because he has a bigger head size, so a lot of the toddler hats fit him head circumfrence wise, but the tabs to keep them on are too long since they are meant for older kids. If you have any further questions, please don't hesitate to contact me. I know it is scary.

Another note, my pediatrician said we didn't have to have it checked out because it was probably genetic. He said that he was not worried about it at all since he was developing normally. But, we decided to get it checked out to be sure. Just in case, and to ease my worries and stress of wondering if something was wrong. So, it was up to us.