Living with Hydrocephalus <l-w-hydrocephalus>
"HELP US RAISE AWARENESS AND JOIN. THANKS XXX"
|PLEASE SPONSOR ME||6/17/10|
| I am going to be doing a Zip Slide 132ft high from outside the Xscape Centre in Braehead, Glasgow on Sunday 22nd August 2010 in aid of Scottish Spina Bifida Association. I would be so grateful if you could sponsor me. Thankyou xxxxxxxxI'm fundraising for The Scottish Spina Bifida Association using JustGiving's website. Check out my page at http://www.justgiving.com/Louise-Hen...|
Nathan's Mum Louise xxxx
|Brain 'wash out' may help premature babies - from BBC News/Health||3/10/10|
| A technique that "washes out" the brains of severely ill premature babies may aid survival, a study suggests.|
Bleeding in the brain is one of the most feared complications for the most premature babies as it can lead to brain damage or death.
The Bristol University study of 77 babies found the technique - involving draining the brain while introducing new fluid - could reduce the risk.
The therapy, pioneered at Bristol's Southmead Hospital, is carried out over a couple of days and requires close monitoring to ensure the pressure in the baby's brain does not rise too high, researchers say.
Experts have described the findings as encouraging.
It would be used only on the most premature babies with large haemorrhages, which cause the brain and head to expand excessively - a condition called hydrocephalus.
Standard treatment currently involves repeatedly inserting needles into the head or spine to remove the build up of fluid over a number of months before a shunt is inserted to drain fluid into the abdomen.
But the study, published in the Pediatrics journal, found the new treatment called Drift was more effective.
Of the 39 babies to receive the treatment, by the age of two 54% had died or were severely disabled, compared with 71% who were given the standard treatment.
Paediatric neurosurgeon Ian Pople, one of the lead researchers, said he hoped the technique would soon be used in the NHS.
"This is the first time that any treatment anywhere in the world has been shown to benefit these very vulnerable babies."
One of the first babies to be given the treatment before the study took place was nine-year-old Isaac Walker-Cox, from Yate, near Bristol.
He was given a 1% chance of survival when he was born 13 weeks early.
His mother, Rebekah Walker-Cox, said that while he has mild paralysis on the left-side of his body, he is living a normal childhood.
"Mentally he has no problems at all, he has an above average reading age and is very good with computers. He just gets on with life and is an outgoing, happy little boy."
Andy Cole, of Bliss, the premature baby charity, said: "This is a very interesting piece of new research and we always welcome anything that has the potential to improve outcomes for babies born sick and premature.
"The early results of this technique are encouraging and we look forward to seeing how these findings might be translated into treatments that could ensure better outcomes for these vulnerable babies."
|CAN YOU HELP?||9/17/09|
|Do you or someone you care for have Hydrocephalus? If yes, then your knowledge is invaluable to this group. No-one knows what its like to have Hydrocephalus unless they have it themselves and no-one knows what it is like to care for someone with Hydrocephalus unless they are a parent/carer |
This is why I need your help. Would you like to support someone who is in similar circumstances to you? For instance, you are a teenager and would like to help another teenager who is needing advice or to just ask a question about Hydrocephalus or you are a parent/carer of someone who has Hydrocephalus and would like to help another parent.
If so please leave a comment at the end of this blog explaining your circumstances, whether it be that you have Hydrocephalus or you are a parent/carer, along with your or your childs age.
Thankyou once again for your help.
|Please could you fill in this questionaire when you have a minute. Thankyou for your help.|
1.Who is affected by Hydrocephalus?
2.When were you/they diagnosed?
3.How old now?
4.What caused the Hydrocephalus?
5.Do you/they have any other condition ie Spina Bifida?
6.What sort of shunt do you/they have?
7.Is this your/their first shunt?
8.How many surgeries have you/they had so far?
9.What hospital/s have you/they been treated in?
10.Are you/they sensitive to certain noises?
11.Do you/they have problems with mobility?
12.Do you/they have problems with fine motor skills?
13.Do you/they have any visual impairment?
14.Do you/they have any hearing impairment?
15.Do you/they have speech & language problems?
16.Do you/they have balance and co-ordination problems?
17.Do you/they suffer from any related conditions ie Epilepsy?
18.Do you/they receive adequate support?
19.Do you/they see any other health professional?
20.Do you/they feel that there is enough awareness of Hydrocephalus and if not what do you/they think could be done to highlight this condition?
If you can think of any more questions, please let me know. Many thanks, Louise
|SYMPTOMS OF HYDROCEPHALUS||7/3/08|
|The symptoms of hydrocephalus can vary depending on your age, how the condition has developed, and other conditions you may have. |
In children, because the skull is still forming and the skull bones are not yet fixed together as in adulthood, hydrocephalus can cause the child's head to enlarge. You may notice that your child's head has noticeably increased in size, or seems unusually large. Infants with hydrocephalus may experience symptoms such as vomiting, delayed growth and development, poor feeding, irritability, and less movement than normal. Many children with hydrocephalus also display symptoms that can be mistaken for naughtiness, such as verbal aggression and swearing, hyperactivity, not paying attention and generally unusual behaviour. They may also experience learning difficulties at school.
In adults, the skull is fixed and cannot adjust to changes in pressure. Therefore the symptoms of a fluid increase can include:
* headache followed by vomiting,
* downward deviation of the eyes (the eyes look downwards),
* urinary incontinence,
* poor coordination, (clumsiness)
* difficulty walking,
* irritability, and other changes in personality.
In older people, normal pressure hydrocephalus can sometimes be mistaken for Parkinson's disease or Alzheimer's disease, because the symptoms are similar, and these conditions are very common among the elderly. It's important to get the correct diagnosis as hydrocephalus can be treated, and the symptoms can often be reversed.
|Updates of Nathan's Progress|
24th February 2009
Great news!!! Nathan is able to stand now He is still a bit weak on his left leg but he can pull himself up using the sofa or up at the window. He just loves it now that he can climb onto the sofa or stand up to the window to watch all the cars n lorries pass (his fave). Hopefully it wont be long before he takes his first steps. Well done Nathan. You're my wee star!!!
14th October 2008
What a month so far!!! Nathan turned 3yrs on the 2nd. Can't believe where the time has gone. Since the last update Nathan has mastered the stairs and he is so delighted with himself as are we. He is also trying to use the sofa to pull himself up. He is quite strong on his right side but struggles a bit with his left, but what an achievement. We're all so proud of him. He had an eye test on the 9th which went really good. He was supposed to be tested every four months but now he does'nt need to be seen again until next year. He is still enjoying nursery and after a couple of hitches, he has settled in well. Just love seeing his little face light up when I come to collect him. I've never met anyone as strong and as determined as Nathan and I'm so proud that I am his Mum. Just want to say thankyou to all members for all your support. It really means so much. xxxxxxxxxxxxxxxxxxxxxxx
|PLEASE SHARE YOUR STORIES HERE.||5/27/08|
|Nathans Story |
It was in October 2005 that our little star was born. Due to pregnancy complications Nathan was born 10 weeks early. He weighed 3lb 4ozs and proved from the very start that he was a wee fighter. After five weeks in SCBU we were allowed to take him home to join the rest of our family.
In Nathan's first year he was reaching most of his developmental milestones and his paediatrician seemed happy with his progress. We knew that with him being premature that certain things would take him a bit longer to achieve. We then noticed that he seemed to be gradually slowing down. He could crawl but he was making no effort to stand/walk and we noticed that he was reluctant to use his left arm more and more when playing with his toys. He was also losing his balance alot and he would get tired and grumpy easily as he was having headaches. Obviously we were very worried about all these symptoms so we took him to see his paediatrician to see what was wrong.
The paediatrician checked Nathan over and then referred him to Raigmore Hospital for an MRI scan. It was Friday 31st Aug 07 that Nathan had the scan and on the following Tuesday we got a phone call to tell us to come to hospital for the results asap. Naturaly we were worried because of the urgency of the appointment but nothing could have prepared us for the shock of being told that our wee boy had Hydrocephalus.
We were told by the consultant that Nathan had significant fluid on his brain and this fluid was not being reabsorbed back into his body. This meant that the fluid was building up causing pressure on his brain and if he didn't have a Shunt put in asap, then his optic nerves could be damaged and brain damage could also occur.
Arrangements were hastily put in place and the following week we took Nathan down to Edinburgh Royal Hospital for Sick Children. He was admitted on Mon 10th Sept and then had the operation the next day. He stayed in hospital for eight days and we were so amazed at how quick he was coming back to his old self again.
We have been warned that Nathan may have setbacks in the future,ie shunt blockages and that time will tell if he has been left with any long-term problems but we'll cross that bridge if we come to it, as the saying goes.
It has been over nine months since he had his Shunt put in and his recovery has been brilliant. He is using his left arm more and he is alot happier in himself. He is still not standing/walking yet but the doctors have said the pressure on his brain would have affected certain nerves, so it would take a while longer before he will manage to walk. He is getting extra help with physio and play therapy to help him catch up. Words just cant explain how grateful we are that he is getting better all the time. We are all so proud of him. He's our wee hero.
We'd like to take this opportunity to thank everyone who supported us through Nathans low points. Your kind words and deeds will never be forgotten.
|CSF: Cerebrospinal Fluid|
CSF is a clear colourless fluid that bathes the brain and spinal cord. Most of CSF is in the ventricles of the brain, which are large cavities within the brain which produce and reabsorb CSF.
VP Shunt: Ventriculo-Peritoneal Shunt
VP Shunt is a procedure for removing excessive CSF in the brain. A surgically placed tube is connected from the ventricles of the brain and deposits CSF into the abdominal cavity to be reabsorbed. This is the Shunt that Nathan has.
VA Shunt: Ventriculo-Atrial Shunt
Same as above only the CSF is deposited into the heart to be reabsorbed.
NPH: Normal Pressure Hydrocephalus
This type of Hydrocephalus usually occurs in adults over the age of 55 years
|CAUSES OF HYDROCEPHALUS||5/27/08|
|The condition Hydrocephalus can occur in anyone, at anytime in life, for a number of reasons. Below are a few examples.|
At least 80-90% of people with Spina Bifida have some degree of Hydrocephalus.
Rapid changes in blood pressure can lead to bleeding in the brain and the blood from this haemorrhage blocks the sieve-like CSF absorption system leading to Post-Haemorrhage Hydrocephalus.
In Adults (Stroke)
In-utero infection which involves the central nervous system can lead to impairment of CSF flow. Mumps, Meningoencephalitis and Bacterial Meningitis
also believed to be possible causes of Hydrocephalus.
CSF pathways can be blocked by debris and pus in acute infections of the membranes surrounding the brain.
Hydrocephalus can be due to cysts in the ventricles.
Babies infected in the first or second trimester may be born with Hydrocephalus, brain damage or epilepsy. If Toxoplasmosis is caught in the third trimester then babies may not suffer such severe and obvious problems.
Tumours can block the flow of the Cerebrospinal Fluid.
Genetic or family Hydrocephalus
ie Bickers-Adams Syndrome
|WELCOME TO HOLLAND BY EMILY PERL KINGSLEY||5/26/08|
|I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel - It's like this .....|
When you are going to have a baby it's like planning a fabulous vacation trip - to Italy say. You buy a bunch of guide books and make wonderful plans. The coliseums, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation the day finally arrives. You pack your bags and off you go. Several hours later the plan land. The stewardess comes in and says "welcome to Holland". "Holland!!!" you say, "what do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy! all my life I've dreamed of going to Italy"
But there's been a change in flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible disgusting place full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books and you will learn a whole new language, and meet a whole new group of lovely people you would never have met otherwise.
It's just a different place. It's slower than Italy, less flashy than Italy but after you have been there for a while and you catch your breath, you look around and you begin to notice that Holland has Tulips, Holland even has Rembrandt's.
But everyone you know is busy coming and going from Italy and they're all bragging about what a wonderful time they had there. The rest of your life you will say "Yes, that's where I was supposed to go. That's what I had planned".
The pain of that will never go away, because the loss of that dream is a significant loss. But if you spend your whole life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.