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  #1  
Old 03-09-2010, 04:05 AM
Hydroma Hydroma is offline
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Location: Burlington, Ontario
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Unhappy Going out of my mind with worry - 3 month old with Hydrocephalus

Hi Everyone! I thought I would post in the hopes of finding some sort of peace. My 3 month old baby boy has been diagnosed with "mild hydrocephalus", he's only had 3 ultrasounds on his head which is unusually large. I am waiting for his MRI and Neurosurgeon consultation with Dr. Singh at McMaster Children's Hospital. I know that I need to be strong, and that worrying does not solve anything, but I can't stand this situation. I don't quite understand what "mild" hydrocephalus means - mild - is there even such a diagnosis? My doctor says my son may or may not need a shunt. He does not have any symptoms other than a big head (19 inches circumference at 3 months - off the charts), and he cannot lift his head the way a baby his age should be able to do so.

For those with Hydrocephalus, or parents of hydrocephalus, what sort of infant symptoms did you have? How did the diagnosis come about? What signalled the condition? Just head circumference?

Greatful for any responses. This looks like a fine organization with many strong and caring people.

Hydro Ma
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  #2  
Old 03-10-2010, 09:25 PM
infolady infolady is offline
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Hello,

Hydrocephalus can be detected in full-term infants by the size of the head and fontanel for fullness, eyes, reflexes and startle response, developmental progress such as smiling, crawling, walking and rolling over. The majority of babies with hydrocephalus could also have any of the following symptoms-head enlargement, fontanel is bulging when baby is upright and quiet, prominent scalp viens appear unnaturally full, fever(infection), vomiting (especially projectile), irritability, sleepiness, downward deviation of the eyes (sunset eyes) and seizures. If you feel or see that your child is experiencing any of these other symptoms do not wait for your appointment with the neurosurgeon. We would suggest seeking immediate medical attention at McMaster's emergency department.

If you would like to ask more questions, speak to our Information and Services Coordinator or obtain a more detailed information package on hydrocephalus, please contact the Association at provincial@sbhao.on.ca or by phone at 1-800-387-1575.

Infolady
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  #3  
Old 01-03-2011, 08:28 PM
lovleyruhl lovleyruhl is offline
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Join Date: Jan 2011
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Default another mother

My daughter is nine months and has hydrocephlus.I noticed her soft spot was getting bigger.doctor sent her for a ct scan.we found out she had a aracnoid cyst.it was blocking the ventricals.this caused the hydrocephlus.she had four surgerys and now has a shunt.At first it was all really scary.but wait till they get the other test done.i know when its your perfect baby and then they tell you bad news its really scary.I am in alberta and i know across this country we have the best doctors.The best thing we ever did was get a pedatrician.hope you can do the same. I cannot give you answers to medical questions .I am just another mother who has been through this maybe just different.we are stronger than what we know.I hope everything works out.
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  #4  
Old 02-07-2014, 04:10 PM
novasparker novasparker is offline
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I know that you are scared...there is nothing more frightening than finding out that there might be something wrong with your baby. My brother's son was diagnosed with mild hydro and he's five now and doing well. There have been a few bumps in the road, but my advice is to take a deep breath and know that your child is in good hands with the doctors. You need to do your own research, but you also have to trust that your doctors have your child's best interests at heart and will do whatever it takes to ensure that everything goes as well as possible. It's scary, but you can't let your fear paralyze you. The best thing you can do now is to take the advice of your doctors and be there for your child.
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  #5  
Old 07-15-2014, 08:20 PM
Determined2014 Determined2014 is offline
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Quote:
Originally Posted by Hydroma View Post
Hi Everyone! I thought I would post in the hopes of finding some sort of peace. My 3 month old baby boy has been diagnosed with "mild hydrocephalus", he's only had 3 ultrasounds on his head which is unusually large. I am waiting for his MRI and Neurosurgeon consultation with Dr. Singh at McMaster Children's Hospital. I know that I need to be strong, and that worrying does not solve anything, but I can't stand this situation. I don't quite understand what "mild" hydrocephalus means - mild - is there even such a diagnosis? My doctor says my son may or may not need a shunt. He does not have any symptoms other than a big head (19 inches circumference at 3 months - off the charts), and he cannot lift his head the way a baby his age should be able to do so.

For those with Hydrocephalus, or parents of hydrocephalus, what sort of infant symptoms did you have? How did the diagnosis come about? What signalled the condition? Just head circumference?

Greatful for any responses. This looks like a fine organization with many strong and caring people.

Hydro Ma
It is always a disturbing situation for any parent ,especially an infant who can not utter a word, making it difficult to know exactly how they are feeling, but do not loose hope, you have to be optimistic, that the condition will ease up, the most commom symptom is the enlarged head and having difficulty raising the head, but even with that with right treatment , your baby will be okay.
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  #6  
Old 07-15-2014, 09:43 PM
Profit5500 Profit5500 is offline
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Quote:
Originally Posted by Hydroma View Post
Hi Everyone! I thought I would post in the hopes of finding some sort of peace. My 3 month old baby boy has been diagnosed with "mild hydrocephalus", he's only had 3 ultrasounds on his head which is unusually large. I am waiting for his MRI and Neurosurgeon consultation with Dr. Singh at McMaster Children's Hospital. I know that I need to be strong, and that worrying does not solve anything, but I can't stand this situation. I don't quite understand what "mild" hydrocephalus means - mild - is there even such a diagnosis? My doctor says my son may or may not need a shunt. He does not have any symptoms other than a big head (19 inches circumference at 3 months - off the charts), and he cannot lift his head the way a baby his age should be able to do so.

For those with Hydrocephalus, or parents of hydrocephalus, what sort of infant symptoms did you have? How did the diagnosis come about? What signalled the condition? Just head circumference?

Greatful for any responses. This looks like a fine organization with many strong and caring people.

Hydro Ma
All you can do is pray for a miracle from God and talk to him. I do hope the doctors can help your 3 month baby. Did you get the MRI results yet or are you still waiting on those?
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  #7  
Old 07-20-2014, 12:10 PM
elmarianexx elmarianexx is offline
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Hello! Firstly you should calm down a little I know that you're a mother and you're worried about your only child, but you just must wait for further diagnosis.

Best regards,
Elizabeth
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  #8  
Old 07-23-2014, 04:45 PM
elmarianexx elmarianexx is offline
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Also if you're that much worried maybe you should enroll your child to a private clinic? If you can afford it of course.
I think that it's a solution worth considering.
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  #9  
Old 07-25-2014, 06:01 AM
Profit5500 Profit5500 is offline
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Quote:
Originally Posted by elmarianexx View Post
Also if you're that much worried maybe you should enroll your child to a private clinic? If you can afford it of course.
I think that it's a solution worth considering.
I think the private clinic would be her solution. You just have to hope that the doctors there are any good.
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  #10  
Old 08-28-2014, 09:27 AM
GemmaRowlands GemmaRowlands is offline
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It is absolutely understandable that you are scared, however you have to trust in the medical team and understand that they know what they're doing. They will almost certainly have dealt with identical situations many times before, and this means that you will be able to get the care that you need for your child. If you have anything that you need to ask, book an appointment, as it is important that you get the information that you need. I would urge you not to Google too much, because chances are you'll find horror stories that you don't want to hear - you need information that is specific to the case of your child here.
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