Needs Help?

My daughter has always been in the 95-97 percentile. I was always told the soft spots dont completely close til they are close to 2 years old. My 15 month old still has his on the top of his head. I would consider getting a second opinion.

Hi N.,

I certainly understand your confusion and that you are really scared. I know it's hard, but try to relax for now. It sounds like your MD is on top of things and just wants to be sure nothing is going on. The test he is probably referring to is a CT, which is a fancy x-ray that shouldn't take more than just a few minutes to complete. Your brain and spinal cord are bathed in a fluid called cerebrospinal fluid (CSF) which is contantly produced by your body. It is the same stuff doctors look at when they do a spinal tap on someone. Sometimes, a person can make too much of this fluid or his body does not drain it properly, and that can cause a build up inside the brain. The skull is made up of several bones. When you are born, those bones are still separated some. That's why you have soft spots as a baby. As baby gets older, the bones eventually move together and permanently seal against one anther like a zip-lock bag, and that's why the soft spots go away. If a person produces too much of the CSF deep inside the brain, that CSF pushes up on the brain. When the brain pushes on the skull of a baby, it keeps it from coming together and closing up the soft spots. It sounds like your doc might be thinking that's what is going on. The only way to know for sure is to do a CT scan. If there is too much fluid or if the fluid cannot drain out of the brain properly, your doc should refer you to a neurosurgeon who will be able to determine if baby needs help with draining the fluid. Usually, that is done by putting in a small drain called a shunt that goes from the brain down into the abdomen. It's all under the skin and is relatively a common procedure. That way, the fluid can drain from the brain down into the body and just be reabsorbed. From time to time the shunt may need to be replaced as baby grows. It does not mean baby will be developmentally delayed or have other issues. It sounds like your little guy is right on target. It also sounds like your doc is doing the right thing by having this checked out. If you google hydrocephaly, you should find tons of information about it. I will say prayer for you and your little one.

Hope this helps.

J.

I have cared for a child with a shunt. It's barely noticeable under the skin and it was no big deal at all. I know it's scary and I would be scared too. It sounds like your little one is right on target and you want for it to stay that way. You would not feel your child's head being mushy if the baby had too much fluid. Your baby would develop neurological symptoms and you DON'T want to wait for that to happen. Your baby can have a very healthy life and live to his full potential with a shunt if it's needed. The alternative is unthinkable. So try and relax and trust the doctors. You can get a second opinion after the initial tests.

Suzi

I would not worry too much about these tests or the corrective procedure, and I tend to be very cautious about medical procedures, especially on the very young.

The brain and spinal cord are surrounded by cerebro-spinal fluid. Basically the brain floats. So, everyone has fluid surrounding the brain. So, it is not a question of having fluid on the brain or not. It is a question of having too much fluid on the brain. Just as the eyes are bathed constantly in a fluid, those fluids are controlled by a system of ducts that allow excess fluid to drain. The eyes have an advantage, however. If there is more fluid than the ducts can handle, they just overflow and run down the face and nazal passages. When the ducts do not allow cerebro-spinal fluid to flow out adequately, it builds up around the brain and creates presure. In a baby, the skull is soft and the pressure simply causes the head to become large. This is why you do not see any brain malfunctions as long as the skull is young and soft. Once the bones harden, however, the pressure begins to cause the brain to malfunction.

This pressure can cause someone to register pain in the abdomen when there is nothing actually causing pain there. It can also cause a loss of motor control of the muscles and loss of short term memory, etc. So, to prevent your son's head from becoming too large and from the effects of increased pressure as the skull hardens, I would not hesitate to have the tests run and the procedure done as soon as possible.

The procedure that is used to correct this is a relatively simple surgery. A shunt is put in that allows the fluid to drain into the abdomen. I have two relatives who have had to have a shunt put in. Although it can happen for a variety of reasons, it is probably most commonly needed in children born with Down's Syndrome and adults who drink alcohol. Drinking alcohol shrinks the brain and anyone who consumes alcohol regularly will eventually require more cerebro-spinal fluid to fill up the extra space left in the skull as the brain decreases in size. This can overwhelm the ducts that are designed to maintain an optimal atmosphere for the brain. (Another really good reason to not drink alcohol)

In the past, the old type of shunt was problematic because it could not be adjusted to drain at just the right pace. Doctors would do their best to get it right, but it is a delicate balance. Today, however, it is simple to adjust the shunt to meet the patient's needs externally with the use of special magnets. Before, they had to go in surgically to make adjustments.

Although the surgery is done on the head, the brain, itself, is not invaded. The procedure really is pretty common and simple. I would never consider getting tubes put in a child's ear or subjecting a child to countless other unecessary but popular medical prcedures. But, I would not hesitate at all to have this procedure done for my child. The sooner the better.

Gosh, I wish I had an answer for you. I looked around the internet which I'm sure you already have as well -- sometimes that helps, sometimes not so much.
http://answers.yahoo.com/question/index?qid=2007122018361...
Sometimes it just makes you worry even more. Sometimes you can find people in similar situations.

Although I can't give you an answer, I will say this: Doctors say a lot of things and often have differing opinions. I would speak to your doctor again and address all your questions until you fully understand what he's talking about. If he is indeed recommending surgery or such, there's nothing wrong with getting a 2nd opinion. You may end up with the same results, but at least you'll be sure.

And though I know from experience it won't help, try not to worry until you have a reason to. Best of luck.

G'Morning N., If I am wrong forgive me, But I thought by the time a child was closer to a year old was when the soft spot was more closed. Zane will be 2 next month(6lbs.9oz) and I can still feel a tad bit of softness on his head,his spot hasn't closed completely. He has always been in high 90 %'s also with the exception of speech. His head isn't over large.
Corbin was 7lb.3oz and has always like your son been in the 95-97% on the scale since birth, height, weight,activity level, vocabulary, he is 4 now. I don't remember his head being over large. His soft spot didn't close completely until right at 16 months.

If this concerns you I would definitely get a second opinion. What type of tests are they wanting you to do with your son? Anything Invasive? MRI, CT Scans?

Keep us posted N., will be praying there is nothing wrong with your son and all is well

God Bless you
K. Nana of 5

My sister in law just had to have a tests run on her 1 year old daughter. She is not very big except for her head so they ran a test to make sure there wasn't fluid around her brain. Her doctor ordered the tests because she said she had the one of the biggest heads she ever measured. The tests came back fine. I also have a friend whose son was tested for fluid because of his large head and his tests came back fine. My daughters head has always been in the 97th percentile but her doctor has never been concerned.
They probably just want to test to make sure if there was a problem they could catch it early. Chances are your son is probably fine.
I will say a prayer for him.

My daughter was 10.65 lbs at birth and continues at nearly age 5 to be in the upper 100% percentile. At this point EVERYTHING is large on your child (LOL, because he is, at least compared to the most other kids out there). If the Dr. wants to run tests to make sure everything is alright then I see no reason why not to let him. I would, however, look into a second opinion if he suggests any treatment thereafter. If I recall correctly, my children's soft spots were still there but I have no idea how much "A LOT" is by your description.

For the time being I'd just go with the flow (sorry for the pun) and see what the tests say. If he's showing no other signs of distress or developmental delay I wouldn't worry about it until the tests tell you otherwise. Best of luck and keep us posted!

It sounds to me like one of your concerns is that he doesn't have any symptoms of having fluid around his brain. If so, I'd double check with another Dr.

I don't have any experience, sorry, but will keep your family in my thoughts and prayers. Good luck!

They probably want to rule out hydrocephalus, which is excess fluid in the ventricles of the brain. If that is the case, the head would not be "mushy", since the fluid is inside the skull, and that would be what is causing the soft spot to not close up properly. If he has not had a developmental delay, that is a very good sign that it's been caught early enough (if this is in fact what he has). I personally have it... I was diagnosed at the age of 24 (very rare, normally people are diagnosed while infants) and I have what is called a VP shunt. I had surgery back in 2000 to have in implanted and then a revision done the following month and I've been perfectly fine ever since. If left untreated, it can cause major issues, so it is important to get the correct diagnosis. There are other treatment options, depending on the individual case, so the sooner you have the MRI or CT scan done (which is likely what they want to do - both easy and painless) and meet with the neurologist (if necessary) the better. That will put your mind at ease and give you a course of potential treatment. PLEASE try not to worry too much... having been through this myself, I know this can be very overwhelming, but it is totally manageable. I don't have any delays (as far as I know - haha). I have a Master's degree, I'm married with an almost 4 year old daughter, and we have another baby on the way in March. I often times forget that I had brain surgery. So, please feel free to contact me directly if you would like to talk. Good luck, and I'm sure everything will work out well for you and your family!

My son had to get the same procedure...I want to say he was around that age...maybe younger...his head size was in the 98th percentile :)...everything turned out normal. I was worried too...I thought if the pediatrician ordered it there must be something wrong but they have to cover all their bases. They just want to rule the bad stuff out. I'd rather have a doctor that's "overly" concerned rather than "under" concerned. I'm sure he'll be just fine...try not to worry too much...yeah right, huh? :)

Hi N., my cousin's boys, both of them, had very large soft spots on their heads, their soft spots didn't close until they were almost 3. It is a hereditary trait in their family, as they are older now and one of their daughters had the same problem. They never had any problems and are both very intelligent. If it will ease your mind then let the doctor check it out further, but if its not mushy then I wouldn't worry so much unless it starts to bulge. Hope this helps some. Good luck and God Bless.