Anyone out there has a child with hydrocephlaus that want to talk

Sharlene - posted on 10/07/2011 ( 5 moms have responded )

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I have a little girl thats 18 months old when she was first born she came into the world at 32 weeks weighing in at 1400grms. Her weight and head were issues and just recently got diagoise with hydrocephlaus and delay devedolpment especially teething so if there anyone out there thats in the same situaition please sent me a message

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Amanda - posted on 10/21/2011

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Just remember every child develops at their own rate. Abs just because she's a little slower now does NOT mean she isn't capable. I'm actually kind of slow in learning & in motion but I still was able 2 do all the normal things that people/kids my age did. So Honey don't worry about it. It may just take a little more 1 on 1 time. And I'm glad I could help u. Any time u need anything even if it's just someone 2 talk 2 about what's going on with ur daughter, urslef, or just a shoulder I'm here. I may not have all the answers but I'll help u with what I do know.

Amanda - posted on 10/21/2011

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Hi. Neither of my children have hydrocephlaus do I don't think I can be of much help on that front. However I have it along with 3 brain tumors. 2 of the tumors have been removed & test. They came back with no signs of cancer or any other problems. However the 3rd tumor is attached wrapped around the veins that are attached 2 my brain stem. Therefore it's inoperable and of course that tumor is believed 2 be cancerous. I have a 2 daughters ages 9 & 6 yrs old. My ex-husband left me when I was diagnosed with this because I didn't know about any if it until I was 22yrs old. At that point my oldest was 3yrs old & my youngest was 3 months old. When he 1st left me he left me my girls & i moved in with family that was in another state (4hrs from him) then after a few months his mother convinced him 2 get the girls 4 the "weekend" only 2 NOT let me have them back. I tried fighting 4 them but the judge said I was in no shape 2 be a good mother. So for then next 5 yrs I only got 2 see them every other weekend & I had 2 be supervised. Then about 8 or 9 months ago he just up & decided he no longer wanted the girls. His gf gave him a choice either her or the girls. So I got them back full time. Which ALL 3 of us are OVER JOYED about. When I got them on my weekends & it was time for them 2 go back 2 their dads they both would cry saying how mean he was 2 them. Because the ONLY thing he would do with them is yell at them or punish them. But now back 2 they effects that the hydrochealous has has on my life. I have a VP SHUNT, along with other hardware in my brain from the tumors that they removed. Since I 1st found out about my condition yes my life has changed. But 4 the most part my life is pretty much the same as it was before I found out. The main differences is I have more frequent headaches then the typical person. When it 1st gets cold outside I have intense pain where the surgarys were done. Granted it's maily where the titanium plate was put in on the left temple area. I've noticed that when I look up or look up & lean my head backwards for any more then a few seconds I get overly dizzy. When I needed my 1st shunt replacement surgery the warning signs that I needed it done was I just could NOT stay awake 4 more then 15-20 mins at time,I had horrible headaches that I couldn't get relief from, I had nauseua, & when I was walking I felt like I had 2 fight 2 keep my balance & that 1 side of my body felt weaker them the other. But like I was saying 4 the most part my life hasn't changed much. Now when I go 2 get my hair cut I have 2 tell them about the VP SHUNT because other wise I get ask a thousand questions & so that the areas that all the hardware is in they know 2 be kinda easy with. Because the areas that have been operated on is still tender & from what I hear it ALWAYS will be. Now don't get me wrong it can be touched with out causing pain but at the same time I've noticed that u can't apply as much pressure in those areas as u can 2 the rest of my scalp. Like I said I'm not going through this with my children so I can't imagine what it has 2 be like on u. All u can offer is info on things I went through since I have it myself. Just make sure u have GOOD DRS that KNOW what their doing & have a GOOD bedside manor in the very least. Bacuse ur trusting this dr 2 perform BRAIN SURGERY on uR child. Although I'm not much help as 2 what it feels like 2 watch ur child go through this I'll still be willing 2 anwser any questions that I can that u may have. Fell free 2 contact me anytime u have a question that I can help u with. U can contact mr at coffinfun4asher@aol.com. Just please if u do choice 2 email me put something in the subject part so that I know who is trying 2 email me & I'll actually read it. U & ur child will be in my prayers, & know God would NEVER give us ANYTHING that he didn't feel we could handle. I wish u the best of luck & I'll try & anwser any questions u have.

I wish I could do more 2 help u.

Amanda

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Sharlene - posted on 10/21/2011

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Hi Amanda, I was so touched by your story it actually brought tears to my eyes,Im Sorry just abit emotional,My fdaughter has been shunt yet but fortnight visits to measure her head at childreens hostipal theres has been talk so far no.She is delayed in devolpment and gross motor skills.Thank u so much for contacting me I have defininly kept your e-mail ,All the best

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