# Fluid around the brain...possibly hydropcephlaus.Update. Page 2.



## Gabrielle

Hello ladies...I have a story to share and I just wanted to see if anyone is dealing or dealt with this before.

I have a son Jack who will be 5 months on the 19th. He has two older brothers. 4 and almost 2.

Jack was born 7 weeks premature and had many breathing problems and still to this day does. Other then that he was perfectly healthy.

Well on Novemeber 11th, 2009 he was laying on the kitchen table and his 2yr old brother pulled him off . he fell 3ft to the floor on the back of his head.

Long story short he was admitted to the hospital with a brain hemmorage in the front of his brain. He was there for 24 hours and did great. Neuro checks were perfect.

WE went home and he had a seizure a day later. He was put on meds and has had two since. He's still on the meds and his EEG was normal. He will be on meds for a few months at least. 

Okay so at our last neuro appt the doctor had measured his head and it was 43.5 cm's. On the day of the accident his head was 41cm's. So they sent him for an MRI.

THe results were that he has fluid around his brain and also a small bleed in the brain. The neruologist said that they will just montior him closely and wait and see what happens.

Then on tuesday we had our follow up with the neurosurgeon that saw him in the hospital. I told him what the neurologist saw on the MRI and everything. They measuered his head and said it was 44.5cm's So thats another cm since 2 weeks ago.

He went and looked at the MRI and came back and talked to me.

He said that jack has fluid around the brain and that this may be from the fall but likely not. That it is causing his head to increase in size. He said that it's a mild form of hydropceplaus. That he isnt sure as of yet if he has it or not. He gave another long fancy name.....Beigne molprus early infancy...? Anyways he said that he will want to watch jack to see what his head does. 

His neuro checks are perfect and he seems fine. Other then his bigger head. 

He always has the bleed in the brain that is small and he said it will either reasorb back into the body or it will increase over time. He said there is no way to tell at this point and it could take months. 

Jack goes back in 2 months to see him...unless I notice changes in Jack.

So Jack will need surgery to put in a shunt if this continues and then they would diagnose him with Hydropceplaus for the rest of his life.

Jacks head has grown since birth...11cm's! I was told normal growth is about 1cm's a month. So he's way overboard.

His head Circumference at 
birth was 33cm's. At 2 months it was 39, then at the fall which was almost 4months old..was 41. now it's a month since the fall and it's 44.5cm's. 

Everywhere I read they say if they go up 2 percentiles in the growth chart to be concerned. 

Has anyone had a child with the extra fluid on brain and rapid head growth? or a child with Hydropcephalus? What was the outcome.

Any advice or anything would be great!

The only measurements the neurosurgeon has is the 41, 43.5, and 44.5cm. He doesnt have his birth or 2 month old. He Jack went from 25th percentile to almost 90th....

Please share your story or any advice would be great. Thanks so much for reading.:hugs:


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## Gabrielle

Anybody..:(


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## dippy dee

Hi hun i've no advise sorry but i didn't want to read and run, it sounds like little Jack is a fighter so far so i hope he will be fine, i to have a jack who was a preemie and he has a large head but this is due to been a preemie and also sossible hc.
Please keep us upto date with it all xx


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## ALI

Hi,

Our princess developed Hydrocephalus (fluid on the brain) and her head did get bigger and bigger until . Her head swelled gradually until it got to about the 92nd percentile. 

It only became diagnosed when she went for a routine post discharge brain scan on 23 nov 2007 (she had two clusters of csyts on her brain from birth). The whole experience is in her Diary section of her website as we updated it all the time . we were given the good news that it had stopped getting bigger by a consultant Neurosurgeon in March 2008

The Doctors decided to give it more time before putting a shunt in, as they are for life, and we were lucky , it stopped getting any bigger from that point on. They took regular scans and as long as it was not exerting pressure on the brain they waited.

Her Ventricles will always be swollen but that does not matter for as her head grew it became less noticeable and she is now back to the 50th percentile.

Hydrocephalus does not always mean a shunt will be needed, it can resolve itself 
so although she had it for a while she recovered from it.

I hope this helps


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## Tegans Mama

Hello

My little girl has Hydrocephalus. However hers is the more severe kind and she is shunted. 

Hers was present from birth and will never get better.

I don't have much advice, since HC is entirely different if the severity is different.
Just wanted to wish you luck


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## S0iinLOVEx3

When I was a baby they monitored my head growth thinking that I may have had it because my forehead purtruded(sp?) more than "normal" ANd had a small amout of liquid ANd in the end I was was absoloutly fine ANd I outgrew it... 

goodluck to u ANd the little guy .


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## Emmea12uk

My son was born with hydrocephalus because he has spina bifida and the two tend to co e together. He also was shunted after a week 

With any hydro, the decision to shunt or not is tough. Without one you risk brain damage caused by pressure. With one you risk blockages and infections. However, anyone with a shunt will tell you a horror story ar two about blocking, but they can be trouble free. Blockages and things can be spotted and dealt with effectively. The operation itself is pretty straightforward. 

I hope things work out for your son x


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## Emmylou27

Our daughter Daisy has Hydrocephalus. Her measurements were (and I won't put them all on cos she was measured weekly for ages!) 37.4 @ 12 days, 39.3 @ 4 weeks, 40.8 @ 9 weeks, 43 @ 12.5 weeks, 46 @ 18.5 weeks, 46 @ 21 weeks, 48.5 @ 29 weeks and 48.5 @ 34 weeks. 

Daisy has not had to have a shunt put in and she's now 9 months old. At first they thought they'd have to, but left it and did an MRI. I am so glad they haven't shunted so far as we were told at her last appointment in Nov that although the ventricles are large she is stable. 

So, hydrocephalus doesn't always mean a shunt - some cases are more servere than others. Big :hugs: hope all is ok x

Meant to say - she started on 98th centile and is now just above 99.6th x


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## Gabrielle

Thank you all for your wonderful advice and thoughts.


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## Gabrielle

Emmylou27 said:


> Our daughter Daisy has Hydrocephalus. Her measurements were (and I won't put them all on cos she was measured weekly for ages!) 37.4 @ 12 days, 39.3 @ 4 weeks, 40.8 @ 9 weeks, 43 @ 12.5 weeks, 46 @ 18.5 weeks, 46 @ 21 weeks, 48.5 @ 29 weeks and 48.5 @ 34 weeks.
> 
> Daisy has not had to have a shunt put in and she's now 9 months old. At first they thought they'd have to, but left it and did an MRI. I am so glad they haven't shunted so far as we were told at her last appointment in Nov that although the ventricles are large she is stable.
> 
> So, hydrocephalus doesn't always mean a shunt - some cases are more servere than others. Big :hugs: hope all is ok x
> 
> Meant to say - she started on 98th centile and is now just above 99.6th x

Thank you for sharing this! it has helped alot. So Jack's neurosurgeon says that he doesnt have hydropcepluas at this point...just saying external hydroceplaus as of right now...but here are his measurements.

33cm at birth(he was also 7weeks preemie), 39cm at 2months, 43.5cm at 4months and now 45.5cm and 5months....he went from 10percentile to 95th since birth. I would consider this WAY abnormal. If you put him on a preemie chart..he's way off the charts. and on the normal chart he's 95th or alil higher. I just dont get this...it keeps growing and going up and they aren't saying anything.

I think they just want to wait and see.

But he's still puking alot, sleeping alot, and he has had 3 seizures over the past three days and we just got out of the hospital today. But the CT isn't any worse so they wont do anything. Which I dont want the shunt if very needed.

When did they diagnose your daughter? did they say it was hydroceplaus and what did her scans show? Thank you so much for your story..I feel we can connect . xx to you. Is she mentally or physcially delayed at all?


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## Emmylou27

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


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## Gabrielle

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


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## Gabrielle

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......!


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## Emmylou27

Hi Gabrielle :hi:

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. :hugs:

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.


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## lottie7

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

xx


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## Gabrielle

Emmylou27 said:


> Hi Gabrielle :hi:
> 
> 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. :hugs:
> 
> 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.

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?


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## Gabrielle

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.


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## Emmea12uk

Gabrielle said:


> 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


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## Gabrielle

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.


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## Gabrielle

https://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.


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## Izzy'smummy

Hi

I have been following your thread and thought that I would share my story.

Izzy was born Dec 07 weighing a whopping 10lb 9oz , her HC was 38cm at birth. At her 6 week check it had gone up to 42cm! We were refered to the paediatician at our local hospital where it was found she had enlarged lateral ventricles- they gave us a diagnosis of Benign External Hydrocephalus (BEH). We were also refered to a Neurosurgeon who agreed with the diagnosis and stated that apart from requiring a larger hat if she was to become a model there would be no other problems!!!!!!

Izzy is now just over 2 and developmentally she is fine, even a little brighter than her peers.She still has a big head but as she a big girl anyway! 

I hope this may help you as I remember being so worried at the time before diagnosis.

https://www.facebook.com/home.php?#!/album.php?aid=144827&id=678186337

If you would like to see some pics of Izzy now I have posted a link above.

HTH

Love Ellie xx


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## Gabrielle

Izzy'smummy said:


> Hi
> 
> I have been following your thread and thought that I would share my story.
> 
> Izzy was born Dec 07 weighing a whopping 10lb 9oz , her HC was 38cm at birth. At her 6 week check it had gone up to 42cm! We were refered to the paediatician at our local hospital where it was found she had enlarged lateral ventricles- they gave us a diagnosis of Benign External Hydrocephalus (BEH). We were also refered to a Neurosurgeon who agreed with the diagnosis and stated that apart from requiring a larger hat if she was to become a model there would be no other problems!!!!!!
> 
> Izzy is now just over 2 and developmentally she is fine, even a little brighter than her peers.She still has a big head but as she a big girl anyway!
> 
> I hope this may help you as I remember being so worried at the time before diagnosis.
> 
> https://www.facebook.com/home.php?#!/album.php?aid=144827&id=678186337
> 
> If you would like to see some pics of Izzy now I have posted a link above.
> 
> HTH
> 
> Love Ellie xx

Thank you for your story, It was nice to hear something positive. 

A few questions, how long did the neurosurgeon follow Izzy. Do you know where her head is on the growth charts at this point?

I think my situation is a bit different, since Jack has had two different brain bleeds plus the extra fluid as well as torritcollis and placelogeonaly. 

Thanks again for sharing!


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## Izzy'smummy

The doctors think Izzy's Increased head size may have happened due to a traumatic birth! Her head is 2cm above the 98th centile and has remained there since 6 weeks! She is now being followed up yearly by the paediatricians.

I have confirmed you as a friend on facebook.

I also have a 7 month old baby girl.

Please continue to ask any questions that you feel are relevent.

Love Ellie xx


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## Luzelle

I have just read your story. You are such a great mom. Hope everything works out well for Jack and your family. Thanks for sharing.


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