Hydrocephalus

Jessica - posted on 08/30/2009 ( 41 moms have responded )

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I am trying to get to know other people with children with hydrocephalus. My son is almost 10 months old and was born hydrocephalus.

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Brandy - posted on 11/17/2009

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Hi my name is Brandy.Im a 30 yr old mother of 4 and my 5 yr old son has hydrocephalus and dandy walker syndrome.If I can help you with any questions i will try.O ya and he has already had 2 shunt surgerys.

Sherri - posted on 03/09/2011

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Hi My son is now 17 and way bigger than me! He was born 12 weeks early had a grade 4 head bleed. Had a vp shunt placed in at 3 wks old. He has had to have revisions but he's thriving. He has hearing loss but other than that typical teen. He has straight As taking honors courses.If you treat him as he has no limitations he won't. Love that little boy for the person he is and let him be a boy. Let him run, jump, and climb like little boys do. My family was so afraid that he'd fall and mess up his shunt. Let him have fun and Mom join in. I'm in Cincinnati where are you located??

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Hi Jessica, my name is Jennifer. My two year old daughter, Kaylynn was born with Hydrocephalus. She had her first VP shunt placed when she was 4 months old and the other two followed it very close. The first mal-functioned, the second caused a bacerterial infection in her spinal fluid, and the third was placed over a year ago and it doing great. My daughter also has Down Syndrome which Hydrocephalus is not a common symptom of. They believe that she may of had a stroke while I was pregnant with her. Except she shows no signs of a stroke. She can walk and talk, it just took longer to there. I would love to chat, if you ever need to talk. God Bless you and your family on this amazing journey. Take care

Virginia - posted on 09/19/2009

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im here for you my daughter is 3 and was born with hydrocephalus she is sever but the happiest little girl ever she knows who people r and will smile and laugh at you all the time she is in aj wheelchair and on a feeding tube but she loves life in her own little wayshe just started school this yr and is loving all the new people if u want to talk im here i been looking for people to talk and share with about there experieces too

Rhona - posted on 01/12/2010

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My daughter is 21 and was born at 28 weeks had 3 intercranial bleeds at the time of birth [natural birth, my blood pressure too high for C section].
She was diagnosed with Hydrocephalus at five days old but was too small for surgery so cerable fluid was drawn off using a hyperdermic needle.
She was shunted at two and a half.
I was told by one doctor that she would never sit up unaided never mind walk, at this point she had also been diagnosed as having cp as well, told the doctor he was an idiot and that he shouldn't be in such a hurry to write off a childs chances.
She sat unaided at 17 months, stood at furniture at 19 months and began to walk at 22 months i attribute this to the intensive physio.
She has gone to a mainstream school though has needed assistance throughout her school years
She is my greatest joy in my life and at times the biggest pain in the butt, that is life, you take the rough with the smooth

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Misty - posted on 01/18/2010

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my daughter had a shunt put in when she was about 6mo old she is doing great now and she is 3 they can cause seizures and she has them but she also has an underlying medical condition good luck

Melanie - posted on 01/18/2010

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Hi guys
Had my son back in 1994,undiagnosed with hydro,shunted at 24hrs old has C.P and spastic quad.Told he wouldnt amount to much.Took him home and after about a year noticed he was a very determind young man.May have been behind the eight ball in regards to milestones but he got there with determination.Didnt talk until about 6yrs old so we taught him thru sign language first.Best thing we ever did.Has had to have another shunt about 2yrs ago but Im a firm believer if your strong in your ideas for what you want for your child and work along side them anything is possible.

Kathleen - posted on 01/14/2010

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My daughter is 10 years old with Spina Bifida and hydrocephalus. No shunt. Instead, she had a third ventriculostomy performed when she was about 1 year old. While her ventricles are still enlarged, the surgery has sufficiently addressed her hydrocephalus to this day. I am so thankful!

Amber - posted on 01/14/2010

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My son is 2 yrs old and has spina bifida with hydrocephalus. VP shunt placed at 3 months of age.

Amy - posted on 01/14/2010

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I have a 10 yr old with hydrocephalus. For awhile I belonged to a support group in my area for hydro. It was great. Knock on wood, I have been very blessed my daughter has not had any trouble with her hydro. She also has seizures which is where she has all of her trouble.

Randi - posted on 01/13/2010

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My daughter is now 3 years old and was diagnosed at about 10 months old...it is a long road but if you need to talk message me!!

Jennifer - posted on 11/22/2009

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My youngest daughter has hydrocephalus along with a whole bunch of other issues. She was born missing 30% of her white brain matter. It has been a long hard road and some doctor's said she would never walk, talk and be on a feeding tube the rest of her life. I'm here to said she is turning 5 next sunday and she has been walking on her own for just over a year now and starting to talk and has never been on a feeding tube. But it is a fight for her to gain weight so we keep close eye on it and we look foward to the next 5 years and a long time after that.

Jennifer

Becca - posted on 11/17/2009

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hi! my daughter was diagnosed with hydrocephalus when i was 20 weeks pregnant. but other than that my pregnancy was uneventful until i delivered my baby at 33 weeks. after she was born we found out she has complete agnesis of the corpus collosum (it's not there). but!! other than that, she is a happy baby! she was born august 29th 2009, has a shunt placed at 5 days old, had a surgery for reflux at about 2 months old and got a g-tube (for burping purposes only), and finally came home on october 30th. she is amazing! and i would love to talk to you more.

Kathleen - posted on 11/16/2009

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When my daughter was born with hydrocephalus and had her shunt placed at two months my husband asked if she could ride dirt bikes with her sister. The doctor laughed because Madison was only two months old and told him she do anything except be a professional wrestler.

Kathleen - posted on 11/16/2009

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Quoting Debby:

My son's hydrocephalus was tentatively diagnosed by ultrasound a couple of weeks before he was born. It was confirmed by MRI immediately after birth. At 18 days, we met his neurosurgeon, and at 22 days, a V/P shunt was installed. The shunt had to be redone at 14.5 months, and he's had no problems with it since. He's 16 years old. He visits his neurosurgeon every two years, and when he gets flu-like symptoms, we have to remember to consider the possibility that it's not flu but shunt failure. So far, it never has been. The only restrictions his neurosurgeon placed on him because of the shunt were: 1) if he plays football, he must wear a helmet, and 2) discourage him from taking up Acapulco cliff diving. We can live with that!!! :-)


 

Kathleen - posted on 11/16/2009

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Quoting Debby:

My son's hydrocephalus was tentatively diagnosed by ultrasound a couple of weeks before he was born. It was confirmed by MRI immediately after birth. At 18 days, we met his neurosurgeon, and at 22 days, a V/P shunt was installed. The shunt had to be redone at 14.5 months, and he's had no problems with it since. He's 16 years old. He visits his neurosurgeon every two years, and when he gets flu-like symptoms, we have to remember to consider the possibility that it's not flu but shunt failure. So far, it never has been. The only restrictions his neurosurgeon placed on him because of the shunt were: 1) if he plays football, he must wear a helmet, and 2) discourage him from taking up Acapulco cliff diving. We can live with that!!! :-)


 

Jennica - posted on 11/05/2009

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hi my son what born with a few brain abnormalties. 2 which are along the lines of hydrocephalus... ventriculomeggaly and narrowing aqueduct. he has not yet needed a shunt but neuosergeons have been disscusing that as a treatment option.. hope to get to know u better

Debby - posted on 11/05/2009

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My son's hydrocephalus was tentatively diagnosed by ultrasound a couple of weeks before he was born. It was confirmed by MRI immediately after birth. At 18 days, we met his neurosurgeon, and at 22 days, a V/P shunt was installed. The shunt had to be redone at 14.5 months, and he's had no problems with it since. He's 16 years old. He visits his neurosurgeon every two years, and when he gets flu-like symptoms, we have to remember to consider the possibility that it's not flu but shunt failure. So far, it never has been. The only restrictions his neurosurgeon placed on him because of the shunt were: 1) if he plays football, he must wear a helmet, and 2) discourage him from taking up Acapulco cliff diving. We can live with that!!! :-)

Jenny - posted on 09/25/2009

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Hi my son has hydrocephalus too. He is two and half. He has come long way but has alot a head of him. Is your son getting Early Intervention or something like that?

JoeAnna - posted on 09/25/2009

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Hi! I have a little boy who will be 3 in Jan. He also has hydro and a feeding tube! He also just loves life!

Angela - posted on 09/16/2009

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Quoting debora:

i have a cousin who is a bible college graduate who was born with what is known as water on the brain,he was shunted at 4yrs old so it shows they can be come employed he works for a cell phone company ....Oh yes, absolutely, Hydrocephalus is the medical term for water head babies. My son is amazing, he is an honor student with excellent social skills. Nobody even knows he has a shunt except for school officials. It's some of the other underlying health problems that cause them to be dissabled and that just breaks my heart. My heart and prayers go out to all the mothers who live day by day with a child struggleing from this disorder.


 

Angela - posted on 09/16/2009

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Quoting debora:

has your son had the fluid removed yet? He has a VP shunt that drains the fluid on a daily basis. Unfortunately he has a Chiari Malformation that doesn't allow the spinal fluid to drain on it's own.


 

Sherri - posted on 09/16/2009

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Hi my wonderful son is 15 years old. He was a preemie born at 28 weeks having a grade 4 head bleed.They had to wait 4 weeks before putting in the VP shunt because of his weight. He has asthma and hearing loss, he wears hearing aids. The docs told me all kinds of things for what they saw for his future. I saw differently. They saw CP and slight mental retardation, I saw a baby boy that would soar. We did the PT, OT, speech, had 4 revisions. By Gods great grace he is thriving. He is a sophomore in high School and has straight A . All while taking some honors courses.He has an IEP for school but in reality doesn't need. I NEVER let teachers or anyone else baby him or get away with things you wouldn't let other kids get away with.We encouraged him and told him repeatedly how smart he is and how he can do anything. I treat him like I treat my other son. My son is older so if there is anything I can help you with please ask. Words of advise: let him do normal boy things- climbing, falling. Go to the doctor with a written list of questions and hand it to him, and especially love and enjoy this baby has God has given you. Sherri

Stephanie - posted on 09/15/2009

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My son Bridger is now 11 years old and doing fairly well. His hydrocephalous was discovered on a routine 16 week ultrasound and confirmed @ 20 weeks. After many ultrasounds, 2 amnio's and 4 weeks of bed rest for me, he was taken by csection @ 35 weeks. His first shunt was placed @ 3 days of age and went home @ 13 days of age. Being a nurse, I was able to do much of his care myself and he went home w/ nasogastric tube for feedings. We started w/ Haberman nipples and were using a regular bottle by 3 weeks old. We have been very lucky w/ his VP shunts. His only revision so far was @ 3 years old for sifoning. That revision was @ Primary Children's in Salt Lake City by Dr Jack Walker who is absolutely fabulous. Our biggest dificulties have been overcoming developmental delays both physically and scholastically. We have been very aggressive w/ physical, speech and occupational therapy and we feel that it has paid off. Bridger has struggles daily, I think related to the short term memory problems and the side effects of the partial complex epileptic seizures that he developed 3 years ago which also threw a wrench in the works. Right now he is pretty stable and doing fairly well. It is a lot of work, deffinitely worth it though. He is probably the happiest kid you could ever meet and doesn't know a stranger. Hang in there, these kids have so much love to offer and so much to teach us!

Debora - posted on 09/15/2009

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i have a cousin who is a bible college graduate who was born with what is known as water on the brain,he was shunted at 4yrs old so it shows they can be come employed he works for a cell phone company

Debora - posted on 09/15/2009

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my child whose now 10 soon to be 11 in nov had it removed by dr taking a needle to top of head and did not have to be shuntted but the sooner its done the better the outcome ,we have one of the best specailest at bassett hospital in cooperstown he is still there ,he save my life since i was run over at 6 and had to have my jaw wired together.

Angela - posted on 09/15/2009

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My son was diagnosed at 6wks with acute hydrocephalus and has had many revisions in his 9 years. At age 7 he had a malfunction unlike any other. After a month in the hospital, 4 emergency surgeries all caused by hemmoraging and finlly and MRI for the first time in 7 years, we discovered the Chiari Malformation which is causing the hydrocephalus...We still have the VP shunt but will be going for another MRI in Oct. of 2009 to see if the Chiari Malformation is still visible...How did this get over seen? Why CT scans for so many years and never an MRI. Overall I can't complain, he is a normal little boy, very smart, excellent social skills, you would never know unless he told you and showed you his scars.

Carol - posted on 09/05/2009

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Hi my daughter was born at 35 wks with hydro the dr.'s did not place a vp shunt until the age of 10 months, before the age of 10 months she was developing fine, learning to walk holding onto furniture feeding herself talking, the at 10 months when the vp shunt was placed she didnt wake up Dr.'s never explained why exactly but my guess is that they just waited too long, she didnt wake up for almost 2 months was having seizures blind now no head or trunk control, did have a g-tube, but is now seizure free, eating with a spoon, drinking with a bottle, & learning to drink with a sippy cup & straw. She is not verbal anymore. I do think a lot of her improvements came from the HBOT treatments we have done, she has had 160 treatments now. Although she has made tremendous improvements she still has a lot of issues. Hope everyone the best & you are all in our prayers....

Felicia - posted on 09/04/2009

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Hi. My daughter was exposed to bacterial meningitis at the age of 2 months and because of the disease, she has hydrocephalus, CP, seizure disorder, gastric reflux just to name a few. Because of the hydrocephalus, the doctors placed a VP shunt to help with the fluid drainage. My daughter is now 16 years old and still have the VP shunt. If you have any questions, please do not hesitate to email me.

Shauna - posted on 09/04/2009

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My Daughter is 7 and was a 24 week premie and had a bleed in her brain and now has hydrocephalus with a shunt! She does reallly well...if you have any questions please ask. I really wish I would have had someone with a child with similar health issues to talk to 7 years ago! My daughter is also shunted and has cp and seizure disorder and is delayed physically and developmentally. She is still unalbe to walk without her walker or holding your hand. please feel free to ask anything!

Donna - posted on 09/04/2009

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My son is 10 yrs old and has spina bifida with hydrocephalus. Would love to talk to you anytime.

Bliss - posted on 09/03/2009

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My son was born with hydrocephalus 21 months ago. He was placed in the Nicu for the first 30 days of his life because of respiratory distress which cause a host of other problems. His doctors told us he may never walk or talk or be normal...only time would tell. They decided to wait to place a shunt in just to see what the fluid would do on its on considering he was having no effects from the excess fliud. He was eating well and was having no seizures or any other symptoms. So when he was 3 months old he had a ct done again and the fluid was stable it has remained that way and he is 21 months old and still has not had to have a stunt put in. He was physically delayed and now he is developementally and speech delayed. He is deaf in his right ear and they THINK it is a result of the hyrdocephalus. How is your son coping though this?

Jackelyn - posted on 09/01/2009

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my son AJ was born with hydro on Jan 2,09 his head was 44cm when he was born and had a vp shunt placed at a week old. He is a bit behind but doing far more then the drs ever expected. He also has craniosyntesis which means his skulls bones have already fused together so he will be getting surgery for that in 3 weeks. If you ever need to talk or share stories im here, our sons are pretty close in age so maybe we can compare.

Maureen - posted on 08/31/2009

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Yes, it does show on ultrasound. With Clint we didn't do any ultrasounds until toward the end of the pregnancy. The pregnancy itself was uncomplicated. My OB was getting ready to go on vacation and decided to do an ultrasound to help better determine due date. Clint's head did not fit on his portable ultrasound's screen! Thus, began the ultrasounds and testing at the hospital. You know on ultrasound bone is white and organs/brain matter is grey. On the ultrasound you saw the skull and where the brain should be was mostly black. It was one of the hardest things to look at. Of course, once the shunt was placed later CT scans did show brain matter. Clint's head was 50 cms and Jonathan's was 54 cms! Yikes!! I'm glad I didn't even try to have either of them naturally. When I got pregnant with my second son, Ben, we did ultrasounds from the beginning. I had to see the high risk OB every other month just to make sure he was not developing any type of neurotubular defects. With Jonathan I had my first ultrasound at 10 weeks...just to see the heartbeat. Then again at 16 and 20 weeks. At 16 weeks, nothing showed, but at 20 weeks they could see the defect between the 3rd and 4th ventricles and the beginnings of hydrocephalus. X-linked only affects boys and girls are carriers. No one in my family had ever had boys with this problem. The genetisists told us this was extremely unusual, that most families who have these boys have it in many generations. The good news for my family is that it began and ended with me. I have no girls to pass the trait onto and my healthy son is not affected. Since my brother is unaffected so are his kids. I firmly believe God gave me the children He did for a reason. I may never know why while I am on this earth, but I will have my answer once I reach heaven. I know my boys have taught me so much and I continue to be amazed by them.

Jessica - posted on 08/31/2009

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I understand what you mean about head-size Brayden's head was 40 cm with a all natural childbirth. There was no signs of any problems until he was born. I believe it had alot to do with the birth because I was induced and during labor his heart rate dropped into the 70's and lower with every contraction and it lasted about 15 hours; with contractions every 3-4 minutes and for some crazy reason the doc never called for a c-section. My son also has a VP shunt. The neurologist says we will not be able to tell if he will have any problems until he reaches milestones. So I am hoping for the best for him. I also hope the best for Jonathon. I will pray for your family! God bless you! So with that form of hydrocephalus it was evident on an ultrasound? I am still so baffled what caused my sons...because there was no evidence of it before the birth.

Maureen - posted on 08/31/2009

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For my boys, the hydrocephalus was severe. It began early in pregnancy and did a lot of damage. I often compare their headsize at birth with a basketball. Both have VP shunts, placed at 3 days, both have feeding tubes, both are legally blind although with cortical blindness the eyesight improves with age, both are in wheelchairs and considered to have quad CP -- involvement of all 4 extremeties -- but are not paralyzed, both have seizure disorder, Jon more so than Clint and both have sensory issues. The biggest difference in the two medically is that Jonathan has not had all the respiratory problems Clint had. Both were on oxygen after birth, but Jon required it only for about a week. Clint required oxygen even after we went home from the hospital after 23 days (Jon came home after 16 days). Clint outgrew his need for oxygen, but after scoliosis surgery and placement of Harrington rods he once again began requiring oxygen. This began the progression in the decline of lung function requiring breathing treatments and therapies that Jon does not require. Their disability was immediately apparent. We lived in Texas when Clint was born and he was able to start an early intervention 1/2 day program in our local school district at 8 months of age. In Texas, deaf or blind children can go to school from birth! The program was heavily therapy oriented with PT, OT and Speech and they also had Vision therapy. Clint made more progress than many doctors thought he would. It was slow to develop, but he eventually learned and enjoyed sitting unsupported...he was about 3 years old. Neither of the boys talk, but Clint did learn sounds at an early age and said guh, guh for go and everyone was mama when he was little and could say uh-huh and un-uh for yes and no. After he went through puberty, he began to say new words, but you had to know him to understand him. He had a thick and uncooperative tongue like many with Down's Syndrome. He would call people by his version of their name and my mom became Gah-Gah for Grandma. Clint had a very strong go get them, opinionated type personality which benefitted him greatly during his life. He achieved so many things we never thought possible. Jon on the other hand has a very laid back, take it as it comes personality. I can honestly say that even with early intervention his progress has been slower than a snail's pace, but there has been progress. One other reason his progress may be slow is the severity of his seizure disorder. It is now controlled better than ever, but when he was still less than a year old he began to have severe seizures and he had them often. He is my happy, joyful child who almost always has a smile on his face. Well, that's alot to digest! I adore my boys. I know my experiences are vastly different from your own, but at the same time quite familiar. I'm glad I am here for you and other moms...I know how difficult every aspect of raising a child with a difference is. And, it is very nice to meet you, too. If you want to *speak* more privately, my e-mail is mnm3boys@cox.net.

Jessica - posted on 08/31/2009

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I am sorry about your loss, no mother should ever lose one her babies! If you do not mind me asking what kind of disabilities do your boys have? Was it evident at a young age? Are their many more advancements in Jonathon with the changes with medical technology since Clint was born? My son has been a little slow at things. He just began doing the army crawl like a month ago. He also has severe allergies with alot of foods. I am not sure if that is common with children with this disability or not. Thanks for replying it is nice to know that I have someone I can talk to! Nice meeting you!

Maureen - posted on 08/30/2009

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My oldest and youngest sons were born with a genetic form of hydrocephalus called x-linked acqueductal stenosis. My oldest, Clint, passed away in 2007 at 18, the youngest, Jonathan, will be 11 next month. While their disabilities are severe and profound both mentally and physically, they both have brought tremendous joy and strength to our lives. There are many children who have hydrocephalus who go on to lead very normal lives, but not my boys. I'm here for you and any other moms who would like to get to know me or ask questions. I am more than willing to share experiences and try to answer questions.



Maureen

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