hello.

Bruce - posted on 04/18/2013

Also Tina take your child to a children's hospital if your local hospital is of no help. Also check into the top rated hospitals in your area with a good neurology department. Mine was done at Saint Francis in Hartford Connecticut with a great neuro surgery team. In the mean time spinal taps will help take some of the pressure off your child's brain. That only helps for a very short time though.

Bruce - posted on 04/17/2013

I'm not a mom or have kids. I do have a shunt though. At the end of 2011 I went 2 weeks of massive headaches. Finally was diagnosed. I ended and up getting rushed to locale er and later to Saint Frances. The neurosurgeon who put it in did a great job. By the way I was 33 at the time. Anyways they found a lesion on my brain and in a area they don't like to touch. I still get headaches caused by over exerting myself or stress. It still takes the wind out of me and knocks me down. I am about due for a replacement soon. My thoughts and prayers go out to all you moms with children with hydrocephalus. I know what their feeling and going through. I can't imagine how much worse it is for a child. Stay strong and just watch them for signs the shunt is failing.

Kaye - posted on 01/17/2013

Tina Fono, are you in the U.S.? You need to get another opinion from another neurosurgeon. Don't give up!! Praying for you and your son!

Tina - posted on 01/17/2013

hi, my 2 month old son has hydorcephalus and I feel hopeless after the doc told us they cant do anything and he cannot be treated due to the size of his brain :( I believe hydrocephalus can be treated but this doc is confusing me .. please help i need advice my son is dying :,( he needs treatment

Victoria Kaitlyn - posted on 11/28/2012

I'm not a mom but I just wanted to post on this I was born with hydro and I've had my shunt since I was 8 months old and I'm 16 I have no problems so far but I've had two brain surgeries and heart surgery when I was four but other than that I'm pretty good I am legally blind in one eye but its all good I go to Morgantown in West Virginia and I have some of the best doctors there I love life and I have a lot of friends there is a lot that could have been wrong with me but I thank god that the things that r wrong r the only things any questions just ask

Carli - posted on 11/28/2012

When I was 20 weeks pregnant during a routine ultrasound, the tech found that my son had an arrachnoid cyst on his brain. Once he was born, he had quite a few tests run in the hospital that came back and showed that the cyst currently wasn't causing any problems. At one of many check ups with his neuro surgeon at 4 months old, a MRI showed that he started to develop hydrocephalus. 4 days later he had his shunt placed...it was an extremely scary time for our family. He's now 9 months old and we couldn't be happier with his development!! He works with a PT from First Steps Indiana weekly and is meeting all of his milestones. He's very strong and smart. It's hard not to think and sometimes worry on a daily basis about his shunt malfunctioning and causing problems. God gave us a miracle and everyday his shunt is saving his life!!

Chris - posted on 10/23/2012

Hello,



I have just read your message about your son who has hydrocephalus. I also have hydrocephalus. When I was four years old I had the operation to have a shunt inserted. I am now in my fifties, so when I was born little was known about the condition. Do not panic as there have been great technical advances in the treatment of this condition.

Where I live I know of no one who has hydrocephalus.



Chris

Tracy - posted on 10/22/2012

My daughter received a VP shunt at 4months due to complications from prematurity in 2006. Her shunt had to be replaced in 2010. She has developed an extremely itchy scalp near the shunt site. Has anyone else experienced this problem? How did you treat it?

Sharlene - posted on 01/07/2012

Hi Jodi ,thats fantastic she making progress like that Me to. Ive being on Com for a while but found this group I think 3 / 2 months ago and Chole doing the same as your little angel rolling standing and crawling LOL. Not much really happens here but I check this everyday to see if any other mom with the same problems .If you want to chat anytime please PM me anytime .

Jodi - posted on 01/07/2012

Thanks, I've been on moms for a while but just found the hydro group. its good to see that others go through the same stuff. Aly my littlest is doing great. she's just now rolling over and holding her head up more on her stomach. it might take her a while to crawl b/c she stops to rest her big head ever few sec. but other than that she seems fine cognitively. her story seems so mild compared to some of the others i've read, she just has excess fluid no tumors or hemoriging, and now seizers. i was kinda worried about her eyes for a while. she might have to have her tear ducts unclogged, their pretty bad. we just joke that all the drains out of her head or blocked up. but shes a sweety and so happy all the time. does anyone else have a problem with clogged tear ducts and hydro.? i just wondered if theres a correlation between the two?

Sharlene - posted on 01/07/2012

Hi Jodi ,welcome firstly ,And the poor little darling ,And how is she now? My DD she hasn't being Shunt as yet but I think she will soon ,she also has slow motor skills and see a OT theraphys as well

Jodi - posted on 01/07/2012

My second daughter was diagnosed at 2 months old at her well child check ( she's now 8m). we went to the mri that confirmed it and down to Children's the following week for shunt #1. after we came home we noticed leaking around the stichtes. so we went back had an external drain to watch for infection then her shunt #2 was put in at the end of the month. total we were in the hospital her 2nd month of life with 3 brain surgeries. fun. now she does PT a few times a month for slow gross motor. hopefully it won't affect anything else. she's still young.

Sharlene - posted on 10/11/2011

Hi there my daughter is 18 months old has hydrocephlaus we have noticed her muscles and joints are sore some days is that what happened to yur daughter

Sharlene - posted on 10/11/2011

Hi there sharlene I justg read yur story your son will fine my daughter had a MRI 4 weeks ago and she has hydrocephlaus plus delayed in certain area please if you ever to talk get back to me all the best good luck

Sharlene - posted on 10/11/2011

Hi Sharlene here my little girl was premie at 32 weeks the only prolems she had was her weight size and soft spot on her head. Her weight and head size is the issue now she 18 months old she weights 8kgs and her head is 52cm shes only saying dada not crawling but draging her self rolls doesnt really hols her head up she can but it looks like she gets tired respons to name but we have noticed her muscles and joints get saw as well she sleeps alot any ideas please to help

Debbie - posted on 06/25/2011

Hi my son is now 29 yrs. old and he has just had to have a revison and they have used a new shunt that is called Codman Programmable Shunt I was just wondering if anyone has had this one and how do you feel it works any pros or cons on this type of a shunt. Thanks in advance for any informantion and if you have any question on my son's progress I would happy to answer when he was young we didn't have acess to this type of forum you guys are very lucky to have a place to go and ask each other questions and share concerns and joys.

Lacy - posted on 06/06/2011

I know this post has been up for a minute, but I would like to share my story. we found out my son had hydrocephalus after he was born. It was caused from me getting punched in the stomach at rfd nursing home I worked at. He had internal bleeding in his brain. He had surgery at 4 days old and will be one at the end of this month. Wehave had no complications, thank the lord! He has pt and ot once a week. Isn't crawling, but will roll to where ever he wants to go. I know it will take time but I can already see the drive in his eyes to not let anything hold him back!

Sarah - posted on 02/08/2011

hiya i found out my daughter had ventrigomegly at my 20 wk scan which they said was hydrocephalus.. i was adviced 2 abort the pregnancy which i refused i said all the time my babies heart was beating i wasnt goin 2 abort her.. they kept a close eye on both of us and her head kept growing and even at 30 odd wks they stil told me 2 terminate but again i refused i was referred 2 alder hey and saw a fantastic surgeon.. my daughter was born on the 18th jan 2010 by c section and was perfect.. she has been doin so well and as yet still no treatment she has fortnightly head measurements which is way above the top centile but surgeons r still not worried.. she is a bright happy little girl and knows wat she wants..

Courtney - posted on 10/16/2010

I found out that my son Jaron has hydro at a 35 week ultrasound, I was told by the doc that if he lives he will be a vegetable ( no compassion what so ever) He has had five surgeries one to clear up an infection and two shunt placement one EVD placement and a third ventricularostomy. He is slow on his milestones but he is reaching them!!! We feel so blessed that he is alright we suspect that his left eye has visual impairement but are looking into having his looked at. Other than that he is a very smart and very happy little man!!!

Heather - posted on 01/21/2010

Well my son just turned 5 months old tuesday. Tuesday night I had to take him to the ER b/c he was actting like he had a headache (grabbing and clawwing at his head). The dr checked his HC andcame back and said that his HC was in the 90th% and his weight and length were both in the 10th%. The next day we followed up with his ped who checked him and out and noticed when he is laid on his back and not being held his arms go straight out to his sides and very stiff and up in the air. She asked if he was like that all the time and I thought about it and realized that he is. She also asked if he could pass objects from hand to hand (no) and if he was rolling or sitting up unassisted at all (both no's). She said that she would be right back she had to find out what to do to get a MRI sooner then later. Talk about worrying a mom. My baby boy goes for his MRI tomorrow, I have no idea what to expect or anything. Any advice would be appreciated. Im worried and stressed out. Thanks everyone, your stories have been some what reassuring but I dont really know how severe the hydrocephalus was in most of the babies. I also dont know if all hydro babies recieve shunts/meds/etc.

Kate - posted on 12/31/2009

Hi! I am Kate - and I am 28 weeks right now and about 8 weeks ago they diagnosed our baby boy with hydrocephalus. Looking through this page it is sometimes encouraging and sometimes scary to read all your stories. I will probably be asking lots of questions in the future!

Stephanie - posted on 10/11/2009

Hello my name is Stephanie and I am from NY. I have a 23 year old daughter that has hydrocephalus. I was 17 years old and about 7 months preg. when the Dr.'s told me the ultrasound showed she had hydrocphalus due to aquaductial stenosis. The Dr.'s all told me to give her up for adoption because there could be a chance that she would not live long and if she did she would have a lot of medical problems. Of course I did not listen to them and I had a planned C-Section and gave birth to Catalina early. She was shunted at 2 days old and had gotten a shunt infection while still in the NICU. The Doctors than shunted her a few weeks later after the infection cleared. Catalina stayed in the hospital for 3 months, she also started getting grand mal seizures at the age of 10 months old. She attended early developmental program as an infant than was able to attend a "regualr" school but in specail ed classes, up until she was 21 years old then she graduated with an IEP diploma.
As far as shunt problems, she had one when the distal end just needed to be cleaned out when she was about 6 years old. Than when she was 19 she needed a full shunt revision. The only symptoms Catalina ever showed was when I took her to the Eye Dr. and she had papaladema (sp?)
My daughter also has mobility problems and wears a AFO brace, uses a walker and uses a wheelchair for long distance. She is developmentally delayed and attends a Day Hab prgogram. She also has had several operations on her knee and foot and also has multiple seizures. She was seizure free for 10 years and than after her shunt revision she started having them again. Thank GOD for Diastat!!!!!
We have been lucky in the fact that we went 19 yrs. without needing a complete shunt revision. I also have a very SUPPORTIVE and LOVING family! My hubby is a great step father, he knows as much as I do about her whole medical history.
It is hard now that she is adult age due to the fact that I can no longer use her Pediatric Doctors, Neurosurgeons, Neurologists etc....
Like all of you my daughter is my life and my love and I am so happy to have her in my life and I am very happy I never listened to the Doctors before she was born :-)

Andrea - posted on 07/28/2009

Hi my name is Andrea & I'm from PA. I have 2 children, oldest is Anthony, 7yrs who's lucky to be healthy as a horse. 2nd is Rowan who is 15months old & was born with Hydrocephalus. We found out approx. between my 6th & 7th month of pregnancy that she was going to be born w/ Hydro.. my obgyn sent me to speak to several Neurologists & Neurosurgeons.. some were helpful & optomistic, others were negative & told us our daughter would probably NOT live through the birth, & if she did she'd most likely be braindead.. *awful I know!* So we had a planned Vertical C-Section at exactally 39 weeks, with a head circumference of 45.5cm. & approx. 4 hours after birth the women's hospital I gave birth to her at, transfered her to the Children's Hospital of Pittsburgh. When she was 3 days old her Neurosurgeon went in & attempted the ETV procedure (Endoscopic Third Ventriculostomy) then she was monitored for 10 days & her head size went up a cm. so her Neurosurgeon came to me on the 10th day & said he was going to consider the ETV procedure "un-successful" & he wanted to get a VP Shunt put in ASAP, so the very next A.M. she had her shunt put in, & THANKFULLY it's been 14 & 1/2 months later & we've had ZERO shunt issues, however at around 4 months she took her 1st seizure, then a month & a half later she took another, so she was then diagnosed w/ Epilepsy also & takes a medication called Keppra 2Xdaily for it.. she's had 6 seizures total & the SHORTEST one lasted 49 minutes! - they have ALL been at least an hour long, it takes either us or an ambulance getting her to the hospital & them getting an IV in her then dosing her with Ativan before her seizures will subside.. SO THEN *as if the Hydrocephalus & Epilepsy wasn't enough* her eye doctor & Neurosurgeon went together & ordered a "3 slot MRI" for her in November'08 - the eye doc wanted to see how much CSF was laying on her optic nerves, & her Neurosurgeon had a "feeling" she had other, underlying issues.. So as it turned out, she needed glasses, & she was diagnosed w/ Cerebral Palsy as well.. Her leg muscles are SO tense & tight - she has AFO's & knee immobilizer's to wear daily to help with the straightening of her legs. & she WILL NOT keep her glasses on to save my soul! lol So we actually JUST had a check-up w/ her Neurosurgeon yesterday & he said while looking at her last CT Scan results that she will most definately be delayed for her entire life, HOW delayed..? No one will know until the time comes, but the way her brain is forming & all the fluid that damaged it while in the womb has shown that she'll continue to have problems.. BUT, on the brighter side, she is THE happiest baby I've EVER seen, if you look at her & smile, she'll smile back at you no matter WHO you are! She NEVER fusses unless shes extremely tired or extremely hungry, PLUS she gets the best care she can get, her Primary Care Physician is specialized in special needs children, she gets P.T. 2X/week & O.T. 1X/week (but we'll be adding speech therapy 1X/week as well as a "Developmental Specialist" within the next month or 2) & also, her Neurologist, Neurosurgeon, & Eye doctor are all located in the Children's Hospital of Pittsburgh, so they can all keep track of her progress in all 3 areas & as I'm sure all of you other "Hydro mommy's" feel, I wouldn't trade or change her for the world! She truly IS our miracle baby! So thats our story, sorry it's kinda LONG lol but if NE1 ever needs or wants to talk I'm always here!

Thanks again for reading & I pray for all of you AND your children :)

Alicia - posted on 07/19/2009

Hi, my son was diagnosed with Hydrocephalus at 5 1/2 mo. His head was enlarged and we were asked to get an ultrasound done to see if it was a tumor. We found that he had Hydro and were sent to the Children's hospital for an MRI. Instead of a shunt tho, he has had a 3rd Ventriculostomy. They have drilled a small hole at the bottom of his brain for fluid to pass through. We had the surgery in December (and let out 2 days before Christmas...Yay!) and since he has had 2 more MRIs to make sure the surgery is still working and the brain has not healed the hole. Our last MRI in June shows the op still working and we can now drop down to yearly progress visits as opposed to 6 weekly.

He will be 1 in a couple of days and is still not crawling but is doing a very cute bum shuffle across the floor. We have monthly physio for Chase, however we have come to the conclusion that he will probably not crawl. He is starting horse-riding tomorrow with a Hippotherapist to concentrate on developing his balance so that we can progress him on to walking. Having the 3rd ventriculostomy as opposed to the shunt, his head is still quite large and his balance is a little off. We will have to wait for his body to catch up with his head basically as it is a very slow draining of the fluid. Fortunately we won't have to worry about shunts breaking or dislodging, however we will always need to be wary of headaches, crossing of the eyes, etc as he grows up as the brain may decide to heal the hole at any time.

I would be very interested in hearing from anyone else who has a child that has undergone this procedure instead of the VP shunt. I understand that not many Hydro patients are eligible to have this procedure and that the success rates are not always good for those under 2. Has anyone's child had this procedure and then had to go back for a VP shunt to be placed? I am told that this is something we will need to look at if the brain does heal. Thanks

Eliza - posted on 07/15/2009

My daughter was diagnosed with hydrocephalus prenatally at 26 weeks. I am a 25 year old single mother with a 6 year old son as well. Alana was born on February 17th, 2009 at 37 weeks via c section due to her very large head. She had a VP shunt placed at 9 days old.She is amazing and sweet and loved more than any other baby in the world. Unfortunatly her hydrocephalus is extremely severe bordering on hydranenchephaly. She is quite far behind developmentally but I still love her exactly the way she is...she is perfect to me. I have faced a lot of challenges and criticism from doctors and others. We live in an elitest society and even those who have vowed to save lives sometimes don"t see the value in EVERY life. I have had several doctors includeing my orinigal OBGYN encourage me to "take care of it" as they put it. Personally I feel like if god did not intend for her to be part of this world and didn't have a purpose for her then she would never have been born. I am unsure of what the future holds for her but am enjoying every single second I have with her.

Heather - posted on 05/19/2009

Hi my namde is Heather. I had my son Chase 11-08. He was 32 weeker. When they did a emergency c-section the bio-chem ultrasound minutes before that showed he was a 2. Which ment his heart was beating and that was about it. I had pre-clampsia and PIH. We were in the Nicu over 2 months. They waited until he was 2500grams to operate he got his first shunt Dec 9th. He is now 6 months corrected 4. He has tested at two months and most likely will have CP. He is bi-laterally deaf. He did have ROP but is resolved on its own. I am pretty excited to find other stories. Most I come across are more NICU stories then hydro. Right now his catherdar is out of the ventricle and were just waiting until the Nerosurgeon says it is best to operate. His left ventricle is larger...but stable. He goes through a few projecticle vomitting....or sleep periods. He is a very happy baby delayed or not. I am thankful that he is hear. I look forward to talking to others. I do have a myspace which has all the blogs on Chase if intrested just let me know. My thoughts are with you all!

Mindy - posted on 04/21/2009

Thank you Nicole for your story. I just took my son in for a shunt check up. He is 3 1/2 months old. All the Dr.s were impressed with how well he is developing. Then we went to see genetics and she was full of doom and gloom. She told me not to get my hopes up because hydro children are severly retarded. My son is not that far behind the other children his age. It is nice to know that other children are doing so well. It gives me hope when other people try and take it away. Thank you

Nicole - posted on 04/16/2009

Wow Ladies, It has taken me 19 years to find stories of children with hydrocephalus, and Mom's so willing to share their stories. My son Michael is now 19 1/2. He has a twin sister (without hydro) and was born 5 weeks early. He was born naturally and my daughter C-section. His head was just a little funny shaped as they were a few months old but we all assumed it was because he had went through the birth canal and she did not. When they were 8 months old,I took his SISTER to a doc appt one day and the doc started telling me all of these things that were wrong with Michael, just abruptly and out of nowhere. He even suggested Downs Syndrom. They ran a series of Genetic testing and detemined hydrocephalus. They sent us to a "specialis"t when Michael was a 1 1/2. He basically put Michael down, told him to walk, he did and then he said, theres nothing wrong with him mam. Well, my gut was not settled with that so we took him to Chilren's in Chicago where they confirmed that he most likely had a small tumor in his brain blocking his aquaduct and not allowing the CSF to flow properly. The tumor was not visible and not operable. We were afraid of the shunt and opted for medication instead. It, however left my son lifeless, and laing on the couch drueling. When he was 2 we had the 1st shunt placed. They hit the hypothalamus in the brain and 3 hours after the surgery he was completely paralyzed on his left side. To make a very long story a bit shorter for you all, he ended up having 7 and an EVD before he was 4. It was horrible. Then he was good until he was 7. We went for a routine eye check up and he was diagnosed with Papoladima. Which meant that the CSF was building again and the shunt was broke. He has had 19 altogether, the most reent was April 5th of 2007 and May 9th of 2007. He has led an amazingly normal life. Played soccer, football, is an extremely athletic kid. He went through physical and occupational therapy to regain and rebuild his muscle skills after his paralysis. Overall, the shunt has saved his life and more importantly, given him a quality of life. He is a little bitter about his health hardships over the years but He graduated with an above average diploma and he is trying very hard to get through a pre-med program in the hopes of becoming a Doc who can really help the kids out there. He would be perfect at that.

Amanda - posted on 04/12/2009

hi every one, we found out our son had hydro while my husband was at baic training for the army. i was about 34 weeks pregant . we did a c section and his shunt was placed when he was two days old. so far we have had two revision, the first was the day after his sisters third birthday, we were brought by amblanuce from fort hood tx, to fort worth tx, to cooks childrens hospitail were his nerosurgen is based out of. everything was going great untill we came up for a checkup when he was 10 months and we had to have another revision, this time they moved it the other side of his head and we have not had a problem since, he is a crazt two year old that is a little behind in motor skills but we are doin therpy for it. his neruosurgen was just featured on NBC Dateline for the surgey they did for another child.

Lacey - posted on 04/04/2009

We found out when I was 36 weeks pregnant that my son had had an intra ventricular hemorrhage during an ultrasound. We opted for a c-section to get him out so he could be treated, so at 38 weeks he came out. He was monitored for a little over a week in the NICU, was sent home for a week, then when we took him back for an appointment we were told that he wasn't allowed to go home. The doctor never told us exactly what was wrong with him when he was born, and finding out after a "appointment" with a neurologist (which we weren't really sure why we were going there) was slightly devastating to say the least. After much arguing and many many tears, we all finally came to the conclusion that we (the parents) had no idea what was going on as the previous drs never told us. After explaining all to us, he was admitted to hospital, monitored for another week, had a VP shunt installed, and spent another week or two before finally being allowed to come home to stay. We have been extremely lucky thus far and have had no complications with the shunt and have not had to have any revisions. He is now a busy 6 year old who enjoys driving me insane. We started physio therapy with him when he was a few months old and it was a fight the entire way, but we got him walking, and running, and now he gives me small heart attacks all day when he thinks he should be allowed to jump off things or slide down the stairs. He also has underdeveloped optic nerves, which affects his vision to a degree, but we have worked with the CNIB to learn tricks to dealing with this and keeping his attention in school. Also, he is hemipeligic (spelt?), anyway, his motor control on his left side is impaired, he can walk and run, but his arm is not overly functional for him because it takes much concentration and work to get it to do anything, although we still try to make him use it to help dress and other daily activities. He was(is) epileptic as an infant. I say was because after being medicated first on Dilantin for a year, then Valproicacid for another year his seizures have not been apparent and we have had no further occurrences, though we still watch for it because as far as I know, epilepsy isn't curable. Riley is also slightly developmentally delayed in some instances and others he is right on track with his age group. Thankfully we have an awesome school that accommodates him into the regular school curriculum and doesn't need to modify much at this point, thanks to his wonderful EA who works so hard with him.

Christine - posted on 04/04/2009

ah ok too far. good luck tho! i wish they had a support group out here!

Justina - posted on 04/03/2009

well i live in Detroit  so within like a 35 mile radius from Detroit would be good.

Christine - posted on 04/03/2009

Quoting Justina:

Hello i was wondering if there are moms who live in michigan and if so know any support groups for kids with the VP Shunt if not would like to start one with me and my son?

I'm just curious- where in MI? I live in WA now, but I'm from Kalamazoo Michigan and I go back there a lot.

Justina - posted on 04/03/2009

Hello i was wondering if there are moms who live in michigan and if so know any support groups for kids with the VP Shunt if not would like to start one with me and my son?

Naomi - posted on 04/03/2009

My son was born at 24 weeks. He weighed 1lb 9oz. Two weeks after his birth, he was diagnosed with Intraventricular Hemmorhage grade 4. Then a few weeks later he developled Hydrocephalus. The neurosurgeon explained to us how the VP Shunt works. And on November 14th 2007 he has a VP Shunt placed in. He didn't need a revision until January of this year then he needed another shunt placement because the old one had stopped working. He is 19 months old and he is just great. We're treating his has normal as we can. The hospital I take him to in NYC are now doing a procedure called Endoscopic Intraventricular Neurosurgery. Which is for people with hydrocephalus and is NO SHUNT REQUIRED!! Not too many neurosurgeons perform that. But my sons doctor does. Im trying to see if down the line if my son can be a candidate for the procedure because its a one time thing. No surgeries after the procedure and it only takes 15 minutes to do.

Laura - posted on 03/25/2009

Yeah, I'm not sure if he's trying to wink or if he's getting a headache.  Sometime I think he's trying to be silly but others he doesn't look to comfortable.  Going to ask his doctor about that one.   Thanks:)

Christine - posted on 03/08/2009

Quoting Laura:

Hi, my son was diagnosed with hydro at birth due to a brain bleed.  His vp shunt was placed at 8 days old.  He also has a rare orthopedic condition known as amyoplasia (means missing muscles) & is only affected in his arms, this condition is a type of arthrogryposis. Also has hydronephrosis(water in the kidney), which we think he is finally growing out of this condition & will now soon with testing.

He is now 2 years old.  We haven't had any problems with his shunt (knock on wood) but I have noticed that he makes a few strange faces at times.  Has anyone else experienced this with their child?  He just started speech & has had PT & OT from 4 weeks old. 

 

Thanks for starting this circle:)

My son makes some weird faces too, but then again his dad makes weird faces sometimes too so I assumed it's just b/c they're both silly heads...

Laura - posted on 03/07/2009

Hi, my son was diagnosed with hydro at birth due to a brain bleed.  His vp shunt was placed at 8 days old.  He also has a rare orthopedic condition known as amyoplasia (means missing muscles) & is only affected in his arms, this condition is a type of arthrogryposis. Also has hydronephrosis(water in the kidney), which we think he is finally growing out of this condition & will now soon with testing.

He is now 2 years old.  We haven't had any problems with his shunt (knock on wood) but I have noticed that he makes a few strange faces at times.  Has anyone else experienced this with their child?  He just started speech & has had PT & OT from 4 weeks old. 

Thanks for starting this circle:)

Melissa - posted on 02/27/2009

Quoting Kaye:

Justina and other moms, I'd like to encourage you all to have your children tested by someone at some type of child development facility. My son started therapy - physical, speech and occupational when he was about 5 or 6 months old. It's best to start early to be sure that each child gets the best chance at any help that they might need.
In Jonathan's case, his head was a little heavier and he had a hard time sitting and walking on his own. He also had a high palate which caused feeding problems. He had both fine and gross motor delays. As a young mother, I had no idea what to look for and to help him. We were blessed to have all the help that we did to help and encourage him to work on these skills. Look and ask for help in these areas before it's too late.

Hi Kaye, I was wondering what kind of feeding problems did your son have due to his high palate? To make a long story short... my son used to have a G-tube because he was aspirating. Now he no longer has the G-Tube, but we still have to use food thickening powder to thicken his liquids. I've always wondered what caused the aspiration.. besides hydrocephalus, he also has other congenital issues (heart defects, two extra hemivertebrae in his spine, a sacral dimple). At his last gastroenterologist appointment though, the doctor mentioned about his palate being alittle high and commented that that may cause problems with his drinking and eating properly. Anyway, I was just curious since I noticed you mentioned that with your son! Thanks!

Christine - posted on 02/27/2009

To the person who asked about vision problems, I just wanted to say that thats how we found my son's hydrocephalus. He never had an enlarged head or anything like that but he kept looking straight down and couldn't look up at anyone. When we took him to the pediatrition, she said it was probably nothing, but to do a head scan just incase. And that's when they found the hydrocephalus.

He started the Early On program at about 6 or 7 months old when we started noticing the motor delay. We moved to WA at the end of last yr and now he does Speech, and Physical therapy, and starts OT next week. The base did a developmental eval on him, and he's had many other developmental evals. He's also been tested to see if his hydrocephalus is genetic or not, but we haven't gotten the results back yet.

It's definitly good to get your child in OT, PT, and speech as soon as you can if they need it b/c we had to wait a few months just to get our son in speech b/c of the wait lists in WA.

My son's speech therapy is going ok, he doesn't vocalize much, but comunicates some but sign language. His physical therapy is going really well. He doesn't walk yet, but he can crawl, walk on his knees, and stuff like that. He doesn't stand on his own yet w/o leaning on something b/c he curls his feet and might end up needing braces for his ankles/feet. He hasn't started OT yet, but at 18 months old he can hold his own sippy cup, and feed himself. :)

Justina - posted on 02/27/2009

Quoting Kaye:

That's great that they already evaluated him. I only had one child and I guess to some parents, it seemed a little strange to be worrying over little stuff like that when they are so young but if those things are caught early, then it will help for a lifetime. They even made home visits for my son for a while to keep him away from other children and sicknesses. We have a great Child Development Center in our town. They recently started shredding old records and I was able to get my sons file - he's 18 years old now and those records are up to age 3. I've enjoyed reading through them.
I hope that your son stays healthy. Thanks for sharing your story with us.

Yes thank you and the same goes out to your son.

Justina - posted on 02/27/2009

how did you know that the Shunt had snapped? Were there certain signs that need to be watched for?

Heather - posted on 02/27/2009

Hi. My son had a vp shunt put in on Jan 26, we knew from the beginning he had hydroceph (he was born Jan 6) the docs thought maybe his body would start decreasing the fluid on its own. We are so glad now that the shunt is in. No more sunset eyes. Now that I read the posts, what did you guys notice when it came to vision problems? He also has spina bifida so we are at the doctor a lot. He is doing so well, he has movement in his legs and we don't even have to cath him much. I was just wondering if while we were at home there were other things that I should be watching. Thanks!

Kaye - posted on 02/26/2009

That's great that they already evaluated him. I only had one child and I guess to some parents, it seemed a little strange to be worrying over little stuff like that when they are so young but if those things are caught early, then it will help for a lifetime. They even made home visits for my son for a while to keep him away from other children and sicknesses. We have a great Child Development Center in our town. They recently started shredding old records and I was able to get my sons file - he's 18 years old now and those records are up to age 3. I've enjoyed reading through them.
I hope that your son stays healthy. Thanks for sharing your story with us.

Justina - posted on 02/26/2009

Yes thank you actually one of the nurses that took care of him in the hospital revered him to this program in Detroit called Early on, Where its ran by the school system. They evaluate him and determint what kind of assistance he would need based upon the results of his evaluation. They came out and even though he is 6 months when it came to his Fine motor skill, gross motor skill,...etc he is at a 2-3 month old. So now i'm just waiting on the representatives to get back with me to start. they went over some goals that they are setting for him like sitting up on his own and grasping toys and reaching for things.

Kaye - posted on 02/26/2009

Justina and other moms, I'd like to encourage you all to have your children tested by someone at some type of child development facility. My son started therapy - physical, speech and occupational when he was about 5 or 6 months old. It's best to start early to be sure that each child gets the best chance at any help that they might need.
In Jonathan's case, his head was a little heavier and he had a hard time sitting and walking on his own. He also had a high palate which caused feeding problems. He had both fine and gross motor delays. As a young mother, I had no idea what to look for and to help him. We were blessed to have all the help that we did to help and encourage him to work on these skills. Look and ask for help in these areas before it's too late.

Justina - posted on 02/26/2009

Hi my son is 6 months old. He was born 3 months early due to a placenta seperation which cause me to go into labor.  10 days after he was born i was told that he had hemorrage of the right side of his brain and was classified at stage 4. From then they observed that it was not getting better.When he was less than a month old he first had a reservoir put in where they would tap it every day to pull off the extra fluid. It seemed to get better but then it got worst. All while this was happening he had a breathing and feeding tube and so many IV's running through him. At about 3 months old on Nov.7, 2008 he had the VP shunt but in. everything seems to be going good. I was able to bring him home on Nov.23, 2008 which was my actual due date. he came home on oxygen and an apnea monitor and on 6 different medications. I am happy to say that by the grace of God, on Jan 8, 2009 his oxygen and apnea monitor where removed and 3 of his medications are gone. Im glad i found this community to hear stories that are similar to mine. being a mother in her 20's i just don't know what to expect about my sons development. Whether the hemorrage has affected anything or even will the Shunt cause its own ?

Melissa - posted on 02/25/2009

Hi, my son is 19 months old and has a VP shunt. He was born with heart defects which were corrected through open heart surgery when he was two days old. After his surgery, they did a swallow study because he was not eating enough and found that he was aspirating. After that, they did an MRI on his brain and found the enlarged ventricles. At first they said it was hydrocephalus, but then said he may have brain damage due to lack of oxygen at birth.. well, after two months of monitoring, we found that he did indeed have hydrocephalus. He had his shunt put in at 3 1/2 months old and so far we have not had any problems! He does have motor delays, which after reading the other posts, I see is pretty normal with hydrocephalus. My son has hypotonia and decreased muscle strength. He gets physical, occupational, and speech therapy. He isn't walking yet, but is starting to talk up a storm! He is just a happy little guy and I just hope everything keeps going smoothly! We have been through so much with our little one, but he is just the light of our lives. It's good to read about others' stories... although, I do feel alittle anxiety now after reading so many stories of shunt revisions.. I've learned that worrying doesn't solve anything though, so I'm going to just pray and enjoy everyday with my little one!

Kaye - posted on 02/22/2009

Quoting Theresa:

my son is now 5 and calls his shunt his special pipe.

I like that - "special pipe". I'll have to tell my son about that. Jonathan is 18 and has had his shunt (with a few revisions) since birth...he never was clever enough to name it though!! Had to tell ya how cute that sounded.

I hope that he does well and stays healthy.

Theresa - posted on 02/22/2009

hi my son had a brain tumour removed in feb 06 he was 2yrs old day after sugery he had a vp shunt fitted it stuck out alot at the side of his head which was worrying but the doctors said it was fine, all went well till july 07 when my son had another tumour removed and 2weeks later had to have a new vp shut fitted, i was then told by the surgon my son's shunt had snapped in 2 places and a piece of valve had been lost in my son's head (which they could not find) the doctor said it had most likely snapped ,due to him knocking his head so much, my son had very poor motor skills and his balance was also very poor  he was always falling over his head was the 1st thing he would hurt, since having the second shunt in he has had no problems and this shut is hardly noticeable compared to his 1st my son is now 5 and calls his shunt his special pipe.