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Guestbook
WELCOME TO ALL VISITORS!!
Perhaps you have come here to find a person or family in a similar situation,
or you’d like to make a post to share with all of us. HOWEVER, should you
read a post and wish to make contact with the writer, please use his/her
personal e-mail address, which is listed on the post entry. Please, do not
make a reply to that person by using the guestbook as many times people do
not re-visit it on a regular basis.
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| Name: Heather Stewart |
Posted: 2008-09-05 10:28:00 |
| E-Mail: willmakel19@yahoo.com |
Location: Abereen Mississippi |
| Hi My Name Is Heather ,im 23 years old I have a 2 year old little boy,who was born at 6 months (3months early)I remember the day he was born like it was yesterday. My OB Doctor told me my baby would never survive that he was just to little. (With Man things are impossible with God all things are possible)They gave him 72 hours to live after birth and praise God he's still here. About 2 1/2 months after birth he became ill and was dagnoised with Congenital Hydrocephalus about 2 weeks after that we went to UAB in Birmingham Alabama, where he had his first shunt put in. he did good from August 23rd,2006 in August 2007 he was very ill. Janurary 2008 he had his first shunt revision the valve on the shunt stop working.We got a scare 2 weeks after that surgery we where sent back to jackson we thought the shunt had stopped again but everything was fine. That lasted until June 2008 before his first scare healed his shunt stop working again and he underwent another shunt revision.he is now a very active full of life BAD little boy. He still can't walk but I now that one day he will we work and pray on this eceryday. He will be starting daycare Monday which is a blessing that he is doing that well because I was afraid that the other children would hurt him but now with his grip i'm afraid that he will hurt them. Blessed better than Blessed. |
| Name: B. Tanner |
Posted: 2008-09-04 19:37:32 |
| E-Mail: BTanner60@yahoo.com |
Location: Fort Lauderdale, FL |
| My daughter has an isolated case of hydrocephalus, found at 36 weeks gestation. She was shunted at day 1, she got an infection at 3 weeks old, then re-shunted at 4 weeks old. Her prognosis seems to be a good one. Many of the hydrocephalus cases I have heard about have other medical issues along with it. Does anyone have, or have a child with an isolated case of it? |
| Name: Anambra Imo Abia |
Posted: 2008-08-31 10:05:02 |
| E-Mail: eze@yahoo.com |
Location: lome |
| pls i am hrer |
| Name: Duncan Salloway |
Posted: 2008-08-24 20:29:11 |
| E-Mail: grizz1ywired@yahoo.ca |
Location: Southern Alberta Canada |
| 48 year old married to a wonderful women we have 4 children from a your mine and ours situation all of which have grown and moved away except our 15 year old daughter. I was living in Calgary, Alberta, up until 7 years ago when I had enough of the busy live style and also the hectic printing and graphics industry. We moved to a small town about 1/2 hour south of the city. For the last few years I was having difficulty with various things from tendinitis to bad a hip, none of which seemed to be getting better I walked like a man of 80, I was starting to trip and fall so I finally told my doctor to find out what the cause is. He sent me for an to a Neurologist and an MRI 2 months later I was in a Neurosurgeons office and being scheduled for Brain Surgery which happened the same week. That was back in April 2008 since then I have had 5 adjustments to my shunt which apparently is working fine, I am still off work with major headaches and balance issues, the NS keeps saying there must be some other factor so I think "well your the brain surgeon figure it out" LOL. Pretty much that is my story and I hope I didn't bore you with it. I took over as moderator of the Yahoo Hydrocephalus support group to give me something to do and try to meet people in the same situation. |
| Name: Pamela Miller |
Posted: 2008-08-21 09:55:35 |
| E-Mail: tdimiller@hotmail.com |
Location: Mineral, VA |
| My husband and I have a Hydrocephalus grandson. He was born 02/06/06. His mother has done everything possible to provide for Joshua and as anyone with any type of special needs child knows that is not an easy job. He has developed seizure type episodes. One of hospitals had him hooked up to an EEG when he had one of these episodes". They have ruled out seizures. The episodes are basically: no breathing or heartbeat. With CPR he is revived. We are working on his verbal skills so that he can tell us what or when they are happening. He is currently under the care of MCV in Richmond, VA. Currently they have no answers to the cause or prevention of further "episodes". If anyone has a specialist they would recommend or know of a child/person who is having the same issues it would be greatly appreciated if you would contact me. This has been very difficult for Joshua due to the fact that MCV appears to be reaching to figure it out. They have said that he is to have nothing in his crib with him when he sleeps. He is hooked up to an Apnea machine when he is sleeping. They tried having him wear a pulse/oxygen monitor 24/7 but needless to say it won't stay on his toe. They also have a ecardio device that is placed on his chest to record his heartbeat either before, during, or after an episode. God knows we need help with this. Thank you in advance for any and all information provided. |
| Name: Saad |
Posted: 2008-08-19 14:28:34 |
| E-Mail: husain_saad@hotmail.com |
Location: Toronto, Canada |
| I'm 19 and i was diagnosed with hydrocephalus soon after i was born. i've had 11 surgeries related to hydrocephalus. Unfortunately the ETV procedure didn't work for me so I'm back to relying on the shunt to work for me, and it's working really well. |
| Name: Tru |
Posted: 2008-08-18 18:23:54 |
| E-Mail: true_b27@hotmail.com |
Location: Australia |
| Im just wanting to know some info about hydrocephalus my hubby has it and im wanting to know if it is hereditry???? |
| Name: Kayla Breimel |
Posted: 2008-08-11 18:48:44 |
| E-Mail: kaylaelise986@yahoo.com |
Location: Louisiana |
| We had no idea our son had hydrocephalus until the day after he was born. I had him November 28, 2007 in the evening and all they could tell us was that something was wrong with him. It was a parents worse nightmare. My pregnancy went fine. I never dialated when i went into labor which was a godsend because he probably wouldn't of made it. The c-section was horrible because they had to press on my ribs so hard to get him to come out. The doctors came in the next evening and told us that our baby had suffered a stroke in utero which in turn caused the hydrocephalus. They done surgery two days after he was born which took all of 45 minutes. Everything went great. He only spent 8 days in NICU. He's 8 months old now and so far, no revisions or malfunctions. The Neurosurgeon is probably sick of me because i'm always calling or going get CT scans of his head or to make sure he has enough tubing in his stomach! Because of the stroke his left side doest work as well as his right. He can't crawl, hold a bottle or pull up because of his hand and leg. But it is getting better with physical therapy. He also has a lot of problems with his eyes. He's had Nastagmus in both eyes since he was born. That is where the dart back and forth real fast. But it is improving. His left eye also crosses. He has to wear a patch on his right eye to strengthen the left one. Its sad but honestly, he is the cutest thing with his little patch on!! He also has a stigmatism and is near sided in his right eye which will probably have him wearing glasses when he gets a litle older. But at least he can see. Thats all that matters. Other than those things he is a healthy, normal boy. A little slower than some, but he's our little angel. My husband and I have grown so much since we had him. We've learned so much and are greatful for everything. He's a blessing to our lives and I thank god every day that He gave him to us. I wouldn't change him for the world! |
| Name: Jessica Greif |
Posted: 2008-08-07 08:25:23 |
| E-Mail: |
Location: Pennsylvania |
| My daughter was two years old when she as rushed to CHOP for brain surgery. She had been diagnosed with a large brain tumor in her cerebellum. After back to back surgeries to remove the tumor we were sent to recoop in their in-patient rehab. We were there for six weeks. Finally we were able to go home but with a feeding tube in place. So the day after we got home I was driving 40 min. to an outpatient rehab facility and my daughter started vomiting like crazy. I called CHOP and they said to bring her down, so after a spinal tap they told us she needed a shunt. So far it has been 3 years and no revisions needed!! |
| Name: Marisol Hernandez |
Posted: 2008-08-06 16:51:30 |
| E-Mail: marisol.hernandez9@verizon.net |
Location: Los Angeles |
| Hello. I am so glad I found this site. My sister was born with Spina Bifida and has hydrocephalus. She has had her shunt replaced once at 5 months. Up until the beginning of this year she was fine. In February she began having difficulties with her speech. She was stuttering and her hand would shake as if she had Parkinson's disease. She is still experiencing these problems but with more severity. In addition, she is having problems with her balance, she has difficulty remembering things, and has killer headaches. Doctors have done test but can't find anything through the MRI. I have heard that a malfunction does not always show. Can anyone give me insight to this? My sister is suffering so much and I do not want to see her like that anymore. Please help. Thanks. |
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