Eva is 2 1/2 now and absolutely fabulous! She speaks in 10 word sentences which I love most of the time except when she gets really bosses - I have to keep reminding her that I am queen of this castle. I hope that all of us can get more involved in fund raising to find a cure. I am starting a Hydro Walk in Southern California, in conjunction with the Hydrocephalus Association. They hope to raise $800k-1 million this year in walks and it will all go to research for a cure!
Hi to Michael, KillerAyeaye and Flake777. So glad to hear from you all! Killer, I am not sure about the relationship between Autism and Hydro. It seems they are still learning so much about both conditions, and the brain in general, that I wouldn't be surprised if even the docs don't know the real answer to that one. You might contact the Hydrocephalus Association for more info. Flake, your story does give me hope and I am grateful you shared it! My baby Eva is doing so well.
Hi kluterkruse...I'm 31 years old & I have congenital hydrocephalus along with epilepsy. I've now taught preschool but left teaching a few years ago (Epilepsy Reasons) went back to school for my B.S in Social Work. I finished college in 09 and am working in an office with other adults and all that is ever noticed or mentioned is my Epilepsy since it is most obvious. I took general education classes and a bunch of advanced classes in school. Hope that this gives you hope for your baby girl. Bless
Hi there... I can't tell you how happy I am that you've posted your video. As a patient with Hydrocephalus, a VP shunt, and a medical ID bracelet myself, I feel the more said about this absolutely horrible condition, the better. I just wish there was more I could do to help. Thank you! :)
Hello everyone. I am so glad to get the posts from people with such long lasting shunts! It gives all of us hope for the same! For DaddyGoodFun, I am more than happy to have you use this video. I know it's a bit long but if you can use it all, or parts, that's great! Feel free to email as you develop the site if I can help! Hkkluter@yahoo.com
I know what your daughter is going through, and i was born 2 LBS and 4 oz, and i was diagonsed with Hydrocelphus 1 month after i was born. i had seziures they went away @ 4 yrs. old, but came bacxk @ 16. You're right HYDROCELPHUS can kill! it's not something to joke around or laugh about this stuff is serious! I've had alot of shunt revisions. The doctors told my mom and dad 30 yrs, ago i might not make it past 5 yrs. of age. I've not had my shunt changed since i was 12 yrs. old.
Hello, I am working on a website to raise awareness about the medical diagnoses. Can I use this video as part of our Testimonial page so people can see and here your story?
My head started to grow larger at around one year old in 1972. I was referred to Universty Hospital in Madison,Wisconsin. I too have a shunt in my head the same as your child. My current one I've had since 1983 but I had a few revisions before this . I had an excellant nuerosurgeon and I thankfully turned out very well. May God bless you and your daughter through journey in life.
Count me among those who live with Hydrocephalus. I was diagnosed and had shunt surgery at 8 months. During the past 31 years since, I've been blessed to have only required 2 revisions. I thank God every day that my grandma had the foresight to insist that I be seen by a doctor, and I have suffered very few ill effects from it. I don't wish it on anyone, but it's great to hear others' stories.
Hello Kicknbot! I think your name says it all! I love to hear stories of people doing well with hydro so thank you so much for writing. You could not be more correct about the need for funding. Many of us are lobbying Washinton and fundraising in our own backyards. The Hydro Association is funding some great research so things are starting to look brighter for this community I am hopefu! So glad you are doing well!
But, this is only an option for certain types of hydro and is not typically performed on children less than 2 years old. But ask anyway, at the very least it could be a future option. I hope this helps and email me anytime - hkkluter@yahoo.com. Do your best to get informative information that helps you take ACTION. Try not be get sucked into too many scary stories that are out there on the internet. Your son is unique and his experience with this will be, too. I will be thinking of you!
Many doctors are still using non-programmable shunts. In those cases, if the flow setting needs to be changed, brain surgery is required. I would push for the programmable shunt unless there is some very specific reason the doc recommends against it in your particular case. Finally, ask the doc about another option called ETV. It is a surgical remedy for Hydro and the patients who get this do not require a shunt.
There are not many of these specialists across the country, but it is critical that you get an experienced board cer ped neuro. Also, ask questions if they thnk Elijah needs to have shunt implanted. What type do they recommend - there are VP shunts that drain into the abdomen, VA shunts that drain to the heart, etc. Also, Eva has a programmable shunt, which allows her doctors to change the pressure/flow setting on her shunt within a matter of seconds, completely non-invasively.
HI there. Thanks for writing. I know this is a scary time for you with Elijah, but now that my Eva is 2 years old and flourishing, I can say that you will get through it! My tips: Be very careful about the doctor you choose for Elijah. I am not sure where you live, but be sure to go to a Board Certified PEDIATRIC Neurosurgeon. You can find a directory on the website of the Hydrocephalus Association.
Thank you so very much for posting this video... One week ago I took my son Elijah to his pediatrician for a normal well visit and shots . This visit turned not so normal, Elijah's head growth was off the charts and had grown 3 inches in just 2 months. His pediatrician has scheduled us to go to our local children's hospital on dec. 13th for a cranial ultrasound as they suspect hyrdrocephalus. My husband and I are an absolute nervous wreck, we have been researching it and ran across your video w
Saw your story - I have hydrocephalus that popped up a year ago. I endured 7 months of dizziness, nausea, short-term memory loss, inability to concentrate, loss of balance and weight loss before diagnosis. I had 3rd ventriculostomy surgery 3 months ago. I'm very lucky in that I don't require a shunt and am now nearly recovered.
Sadly many of us with hydrocephalus are not so lucky...
Thanks for sharing your story. Awareness and much more funding is needed to cure this life-threatening illness.
I really gald i see this voide on this i what great morther you are i do hope to see more on here you are right not mean people know about ,HYDROCEPHALUS.
However, in college, I stopped using the disabled student services, and graduated with a Bachelor of Music degree in 2005, with a very respectable GPA. I do things just as any other "normal" person would do, and no one can even tell that I had hydro as an infant. I'm very glad to hear that your daughter has been getting tested and screened from day 1, and my bet is that she'll be able to live a normal to mostly-normal life, and hopefully be able to live on her own someday. :)
I'm also an adult (30), who also had hydrocephalus as an infant. Mine developed when I was about 6 months old. The doctors also were skeptical about my prognosis, predicting that I would have mental retardation. In addition, I did not have a shunt. I was treated with medication, which I took until I was about 7 or 8 years old. Growing up, I did have special education services, related to a learning disability (which may have been partially caused by the hydro.).
What a success story you are - thank you for sharing!! I especially love it when I hear from people who have not had many surgeries - it gives me hope. May you continue to have a beautiful life...
@kluterkruse I would like to thank you for bring awareness of hydrocephalus to the world! I would also like you to know that your baby will do just fine I tell you as I have hydrocephalus and today I'm 25 yrs. old I grew to 5 ft. 2in. and 115 lbs. During my life doctors told my parents that my shunt would be changed every 4 yrs. but the last time I had it changed was 1993 18 long yrs. ago! God Bless You and your baby :)
Anyway, according to my mom, I was born three weeks late, and the doctors discovered my hydrocephalus soon after I was born, and I was given the prognosis of: I wouldn't survive to school age, and if I did, I'd be mentally retarded. I do have some mental retardation, but not a lot, though.
You have a very cute little girl. I'm almost 35, and I have hydrocephalus, too. I've only been fortunate enough to have three brain surgeries in my lifetime: one when I was a week old, one when I was four, and one when I was almost thirteen. I was in the special education classes all through school, and graduated about sixteen years ago. (In fact, my last surgery was before I started seventh grade, and I had to wear hats to school until my hair grew in.)
doctors weren't optimstic bout my hydrocephalus after 4 weeks from my birth, but now even after a brain injury from hydrocephalus i'm working full time aged 25 :D
Thank you! Sorry to be so late to respond - i just now saw your note. Would love to be in touch - I saw your video too! Please do email me when you can - hkkluter@yahoo.com Thanks!
I have hydrocephalus myself, not sure if you are interested but you can catch me on facebook where I can introduce you into a very big community of 'hydromums' like yourself and also others with hydrocephalus like your little girl, would be great ot have you jump onboard :) xx
Eva is 2 1/2 now and absolutely fabulous! She speaks in 10 word sentences which I love most of the time except when she gets really bosses - I have to keep reminding her that I am queen of this castle. I hope that all of us can get more involved in fund raising to find a cure. I am starting a Hydro Walk in Southern California, in conjunction with the Hydrocephalus Association. They hope to raise $800k-1 million this year in walks and it will all go to research for a cure!
kluterkruse 4 weeks ago 2
Hi to Michael, KillerAyeaye and Flake777. So glad to hear from you all! Killer, I am not sure about the relationship between Autism and Hydro. It seems they are still learning so much about both conditions, and the brain in general, that I wouldn't be surprised if even the docs don't know the real answer to that one. You might contact the Hydrocephalus Association for more info. Flake, your story does give me hope and I am grateful you shared it! My baby Eva is doing so well.
kluterkruse 4 weeks ago
Hi kluterkruse...I'm 31 years old & I have congenital hydrocephalus along with epilepsy. I've now taught preschool but left teaching a few years ago (Epilepsy Reasons) went back to school for my B.S in Social Work. I finished college in 09 and am working in an office with other adults and all that is ever noticed or mentioned is my Epilepsy since it is most obvious. I took general education classes and a bunch of advanced classes in school. Hope that this gives you hope for your baby girl. Bless
Flake777 1 month ago
I heard a lot of people/children with hydrocephalus will have a large chance of having autism, is that true?
KillerAyeaye 1 month ago
Hi there... I can't tell you how happy I am that you've posted your video. As a patient with Hydrocephalus, a VP shunt, and a medical ID bracelet myself, I feel the more said about this absolutely horrible condition, the better. I just wish there was more I could do to help. Thank you! :)
michaelmohrmann 1 month ago
Hello everyone. I am so glad to get the posts from people with such long lasting shunts! It gives all of us hope for the same! For DaddyGoodFun, I am more than happy to have you use this video. I know it's a bit long but if you can use it all, or parts, that's great! Feel free to email as you develop the site if I can help! Hkkluter@yahoo.com
kluterkruse 2 months ago
I know what your daughter is going through, and i was born 2 LBS and 4 oz, and i was diagonsed with Hydrocelphus 1 month after i was born. i had seziures they went away @ 4 yrs. old, but came bacxk @ 16. You're right HYDROCELPHUS can kill! it's not something to joke around or laugh about this stuff is serious! I've had alot of shunt revisions. The doctors told my mom and dad 30 yrs, ago i might not make it past 5 yrs. of age. I've not had my shunt changed since i was 12 yrs. old.
KolerikRocks 1 month ago
Hello, I am working on a website to raise awareness about the medical diagnoses. Can I use this video as part of our Testimonial page so people can see and here your story?
Daddygoodfun 2 months ago
My head started to grow larger at around one year old in 1972. I was referred to Universty Hospital in Madison,Wisconsin. I too have a shunt in my head the same as your child. My current one I've had since 1983 but I had a few revisions before this . I had an excellant nuerosurgeon and I thankfully turned out very well. May God bless you and your daughter through journey in life.
1971tuba 2 months ago
Count me among those who live with Hydrocephalus. I was diagnosed and had shunt surgery at 8 months. During the past 31 years since, I've been blessed to have only required 2 revisions. I thank God every day that my grandma had the foresight to insist that I be seen by a doctor, and I have suffered very few ill effects from it. I don't wish it on anyone, but it's great to hear others' stories.
BigSwitz98 2 months ago
Hello Kicknbot! I think your name says it all! I love to hear stories of people doing well with hydro so thank you so much for writing. You could not be more correct about the need for funding. Many of us are lobbying Washinton and fundraising in our own backyards. The Hydro Association is funding some great research so things are starting to look brighter for this community I am hopefu! So glad you are doing well!
kluterkruse 2 months ago
But, this is only an option for certain types of hydro and is not typically performed on children less than 2 years old. But ask anyway, at the very least it could be a future option. I hope this helps and email me anytime - hkkluter@yahoo.com. Do your best to get informative information that helps you take ACTION. Try not be get sucked into too many scary stories that are out there on the internet. Your son is unique and his experience with this will be, too. I will be thinking of you!
kluterkruse 2 months ago
Many doctors are still using non-programmable shunts. In those cases, if the flow setting needs to be changed, brain surgery is required. I would push for the programmable shunt unless there is some very specific reason the doc recommends against it in your particular case. Finally, ask the doc about another option called ETV. It is a surgical remedy for Hydro and the patients who get this do not require a shunt.
kluterkruse 2 months ago
There are not many of these specialists across the country, but it is critical that you get an experienced board cer ped neuro. Also, ask questions if they thnk Elijah needs to have shunt implanted. What type do they recommend - there are VP shunts that drain into the abdomen, VA shunts that drain to the heart, etc. Also, Eva has a programmable shunt, which allows her doctors to change the pressure/flow setting on her shunt within a matter of seconds, completely non-invasively.
kluterkruse 2 months ago
HI there. Thanks for writing. I know this is a scary time for you with Elijah, but now that my Eva is 2 years old and flourishing, I can say that you will get through it! My tips: Be very careful about the doctor you choose for Elijah. I am not sure where you live, but be sure to go to a Board Certified PEDIATRIC Neurosurgeon. You can find a directory on the website of the Hydrocephalus Association.
kluterkruse 2 months ago
Thank you so very much for posting this video... One week ago I took my son Elijah to his pediatrician for a normal well visit and shots . This visit turned not so normal, Elijah's head growth was off the charts and had grown 3 inches in just 2 months. His pediatrician has scheduled us to go to our local children's hospital on dec. 13th for a cranial ultrasound as they suspect hyrdrocephalus. My husband and I are an absolute nervous wreck, we have been researching it and ran across your video w
Greens0607 2 months ago
Saw your story - I have hydrocephalus that popped up a year ago. I endured 7 months of dizziness, nausea, short-term memory loss, inability to concentrate, loss of balance and weight loss before diagnosis. I had 3rd ventriculostomy surgery 3 months ago. I'm very lucky in that I don't require a shunt and am now nearly recovered.
Sadly many of us with hydrocephalus are not so lucky...
Thanks for sharing your story. Awareness and much more funding is needed to cure this life-threatening illness.
kicknbot 2 months ago
I really gald i see this voide on this i what great morther you are i do hope to see more on here you are right not mean people know about ,HYDROCEPHALUS.
mountainbreeze73 8 months ago
However, in college, I stopped using the disabled student services, and graduated with a Bachelor of Music degree in 2005, with a very respectable GPA. I do things just as any other "normal" person would do, and no one can even tell that I had hydro as an infant. I'm very glad to hear that your daughter has been getting tested and screened from day 1, and my bet is that she'll be able to live a normal to mostly-normal life, and hopefully be able to live on her own someday. :)
jfluter 8 months ago
I'm also an adult (30), who also had hydrocephalus as an infant. Mine developed when I was about 6 months old. The doctors also were skeptical about my prognosis, predicting that I would have mental retardation. In addition, I did not have a shunt. I was treated with medication, which I took until I was about 7 or 8 years old. Growing up, I did have special education services, related to a learning disability (which may have been partially caused by the hydro.).
jfluter 8 months ago
What a success story you are - thank you for sharing!! I especially love it when I hear from people who have not had many surgeries - it gives me hope. May you continue to have a beautiful life...
kluterkruse 9 months ago
@kluterkruse I would like to thank you for bring awareness of hydrocephalus to the world! I would also like you to know that your baby will do just fine I tell you as I have hydrocephalus and today I'm 25 yrs. old I grew to 5 ft. 2in. and 115 lbs. During my life doctors told my parents that my shunt would be changed every 4 yrs. but the last time I had it changed was 1993 18 long yrs. ago! God Bless You and your baby :)
sweetsantiago1 6 months ago
Anyway, according to my mom, I was born three weeks late, and the doctors discovered my hydrocephalus soon after I was born, and I was given the prognosis of: I wouldn't survive to school age, and if I did, I'd be mentally retarded. I do have some mental retardation, but not a lot, though.
dustbunee2007 9 months ago
You have a very cute little girl. I'm almost 35, and I have hydrocephalus, too. I've only been fortunate enough to have three brain surgeries in my lifetime: one when I was a week old, one when I was four, and one when I was almost thirteen. I was in the special education classes all through school, and graduated about sixteen years ago. (In fact, my last surgery was before I started seventh grade, and I had to wear hats to school until my hair grew in.)
dustbunee2007 9 months ago
doctors weren't optimstic bout my hydrocephalus after 4 weeks from my birth, but now even after a brain injury from hydrocephalus i'm working full time aged 25 :D
Psionicman2000 10 months ago
Thank you! Sorry to be so late to respond - i just now saw your note. Would love to be in touch - I saw your video too! Please do email me when you can - hkkluter@yahoo.com Thanks!
kluterkruse 1 year ago
Your little girl is absolutely beautiful :)
I have hydrocephalus myself, not sure if you are interested but you can catch me on facebook where I can introduce you into a very big community of 'hydromums' like yourself and also others with hydrocephalus like your little girl, would be great ot have you jump onboard :) xx
tobybelchy 1 year ago