They will only shunt if absolutely necessary so, I think they're doing the right thing by just waiting to see what happens. It must be scary though to have him throwing up and having seizures?

Your measurements look quite similar to Daisy's - 43 @ 4 months and 46 @ at about 5.5 months. That's 3.5cm increase in a month and a half which our neurologist wasn't concerned about at all. Yes, he's gone from the 10th to 95th centile which seems like a big jump but he's being monitored closely - I'm afraid so much of this is a waiting game!

Daisy also has Spina Bifida - neither this or the Hydrocephalus was diagnosed before she was born - all the scans failed to pick up that anything was wrong. So, we were told whilst I was in recovery that Daisy had Spina Bifida and Hydrocephalus - mind you, we were also told she wouldn't walk, would have developmental issues, would need a shunt, would have bladder and bowel problems etc. To date, she's ahead developmentally, has no shunt, is on the verge of standing up and her bladder and bowel seem ok so far. So you see, whatever you're told initially it can be wrong and things can seemingly 'repair themselves' if you see what I mean.

I really hope your son is ok - I hope he doesn't have to have a shunt, although if he does it will be the best thing for him and will only happen if it absolutely has to.

xx

Thank you Emmylou, I really appreciate you sharing your story. I am glad that your daughter is doing very well considering what they said what would be going on. You must be a strong mom to be doing all that you do! I know it's not easy sometimes. She's very cute too.

Yea it's scary and stressful, thankgodness I'm a nurse so I tend to be alittle more laid back about medical problems in the home...but also I research everything and know alot of the possible issues could arise, so I worry alittle more. I should just sit back and enjoy life and try to hope and pray for the best.

We all waiting games....are no fun! Our doctors here don't say much other then he's okay, call with these signs, etc,etc...I think they just dont say anything untill it gets worse if it would.

He's been monitored very closely so thats a great thing. Thank you for your advice and info, i hope you and your family have a Happy New Year!xx

Well as of today I measured Jack's head and it's 47cm's. Which is now over the 100% on the growth chart......I'm not sure what to think? If it means they will do somehting or not? We see the neurosurgeon on the 10th so I'm so nervous to go......!

Hi Gabrielle

Hope you had a good Christmas and New Year?

Just had a look back at what I posted before about Daisy. I only have her experience to go on and every baby is different but although his head has increased, it's still only 1.5cm in about 6-7 weeks? If so, Daisy's went up about 2cm in 8 weeks between 21 and 29 weeks of age. After that it did level out and to be honest our neuro chap hasn't been interested in measuring it since as we've been told to just watch for the clinical signs i.e. excessive drousiness, 'sun setting' (where the eyes just look down and can't look forwards or up) and her soft spot getting raised. Also, we've been told it's a combination of these signs and not just one on their own.

Do you do all the head measurements yourself? Believe me there can be a big difference between people's measurements - we've had some massive variences between health visitors.

I know you're scared about going to see the consultant but the good news is, although increasing, it's not a hugely rapid increase in size. They may want to do an MRI to see what's happening which honestly is a lot more stressful for the parents than the child.

Just remember, the head circumference is an indicator but it's only one of a number of indicators the medical bods will look at. How is he in himself? If he's still alert, happy etc. the pressure probably isn't building and it may be hydrocephalus but as our consultant says it may be 'arrested' i.e. not causing any trouble!

I've got my fingers crossed for you though hon and I hope it's good news for you.

p.s. just a thought... has his weight and / or height increased too? Daisy went through a growth spurt about the same time her head went up by 2cm.

I was also wondering how your getting on? All the best.

xx

Hello. Thanks for checking in on my thread! My christmas and New years was nice! My boys got spoiled...haha. HOw about yours?

The last measurement that was done in the office was in December and it was 45cm's. I've done all of my own measurements at home here so I how much it's increased with my knowledge. So since the clinic measurement of 45cm's on December 19th or so....it's increased 2cm's.

I don't think thats bad like you said and I too believe that his pressure is fine within the brain.

Jack is overall a very happy baby at the moment. He sleeps good(still quite a bit), and he is growing very nicely. He's in the 50th percentile for height and weight. And off the charts for head circumference.

He will be 7 months on the 19th and so far he's able to just roll over, coo, and hold toys briefly. He cannot sit up, scoot, eat baby cereal yet. But I'm sure that will come.

I'm sure our Neurosurgeon will say his head is bigger then it should be but not dangerously big. Maybe he'll throw a CT scan in there.

We've had one MRI done in December and agreed....it's a PAIN!

So anyways..I guess we'll see. I know that everything is fine and he'll say Jack looks good and lets just wait and see him in 2 months.

THanks again for replying! How is daisy doing?

Well we're back from teh appointment. First off...i HATE our neurosurgeon..he's a jerk! He litterally saw us for 20seconds and didnt even look jack over. His PA did all the work....!

Long story short they said to see him back in two months and reasses him again. Jack's head is not following a curve and it just keepsing growing at a faster rate of his own. It was 47cm's as of today. Jack clinically is doing fine. Not fussing alot, sleeps normal amount and doesnt vomit as much as he use too.......SO therefore they dont feel the need to scan or shunt him at this point.

He is behind deleveopmentally but we're just going to wait and see.

I should just call them if Jack starts showing signs of ICP.

I dont want to alarm you, and I really don't mean to. Please read this as my opinion only, and I am not a doctor and I could be wrong. I just want to make sure you are asking the right questions.

Has your neurosurgeon told you he has hydro? Is his head off the scale?

With hydro, and the big 'to shunt or not to shunt' question, there are two schools of thinking:

1. Stick a shunt in and prevent any damage being caused. But run the risk of infection and also shunt blockages later in life (sometime reaccuring). You need to find out what these risks are.

2. Wait and see, his head is growing, but it might eventually reach a point and stop. Look out for signs of ICP. Benefit is that you never have to worry about a shunt blocking. On the downside, mild hydrocephalus in a child of that age will cause the scull to expand and prevent ICP, so you may never get many symptoms and damage can be caused to the brain and the eyes. Again, you need to know the risks and what percentage change does he have of taking this route and never needing a shunt?

Some neuros do one thing, some do the other. But it is up to you entirely. You need to listen several professional opinions and weigh the odds up. Also, make sure you are confident with your neuro - you can always ask for a second opinion.

In my opinion, it is better to be safe than sorry, and shunting early is a good preventative option. If the hydro is mild or does eventually stop, then the shunt needed be problematic. HOWEVER...my child was shunted after only 5cm HC increase in first week of his life and has since had no problems - so it is easy for me to say that. A mother of a child who has had lots of shunt problems may entirely disagree with me.

I hope he is ok - I am not second guessing your neuro - he probably does know more than me, but I want you to be happy with his choice and aware of why he has made it.

You can msg me anytime if you want any support of advice.

Emma

Thank you for sharing your opinion. And I really don't like my neurosurgeon at all.....so this was good for you to post.

He has never really mentioned Hydrocephlaus to me. Only his PA's have. And they call it external hydrocephlaus. Meaning that his fluid is around the brain instead of the ventricles....

Right now the neuro says Jack has benign axial fluid of infancy.....this has many different names to it. If you dont know about it, you could look it up.

But basically he says...that either way if Jack would have fallen or not he thinks that Jacks family doctor would have called him to say hey we have a child here with a big head circumference compared to others. He said that he sees this alot and it USUALLY goes away on its own. That the kids heads just have extra fluid around it and eventally it stops.

Jacks' head circumference was 33cm's at birth. 39cm's at 2months, 42cm's at 4months 44cm's at 5months, and now 47cm's at almost six months. So as you can see it's not rapidly increasing, but it is increasing more then the normal head growth. Jack's head is completely off the charts as of right now. And that is of the normal growth chart of full term....which jack was 7 weeks early.

I have no idea what to think. If you know anything about this then please feel free to explain if this is a form of hydro or not. I was told it's external hydro...but I'm not sure.

http://thejns.org/doi/pdf/10.3171/PED-07/08/119

There is a link regarding what the doctors are saying is going on with Jack. It shows some studies that were done.

I should also mention that on Jack's MRI in December it did show a subdural hematoma.....which they have not followed up on.

So since Jacks fall he had

a subarchnoid hemmorage that has resolved. Shown on CT.
also the extra fluid around the brain that was seen on CT the day of Jack's fall.
He's had 6 seizures. Periods of projectile vomiting.
Head growth from 10percentile to off the charts.
And a subdural hemotoma that wasn't seen on CT, but on MRI.

Developmentally Jack can roll over, coo and laugh.