-
My daughter needs your help!
- Aug 24, 2009 at 9:27 PM
- By
- Comments (25) Total Views (4127) Everyone can see this journal post.
My daughter, Nadia. A very fun, sometimes gumpy three and a half year old needs help!
Nadia was born normal via Csection. At one month old got GBS Meningitis. Because of it, she got brain damage, seizures, along with many other disabilitys. She went on to get it again two more times before she turned a year old. We noticed the weight packing on at about 5months old.. around the 2nd meningitis.
At a year old Nadia had a VP Shunt put in at UCLA Medical Center by the wonderful Dr Lazaref. Before then she was being treated at Valley Childrens Hospital of Madera, CA. Which in our opinion sucked! They never did anything about the fluid build up in her brain. All this pressure in her brain was making her very fussy baby. Thank goodness the VP Shunt was a sucess.
Still gaining weight, seizure controlled, and mentally developing, extremly slow. But she was progressing mentally and physically non the less!
Around fall of 2007 my husband and I noticed these weird twitchy movements .. almost like starteling jerks? We called our UCLA neurologist. Dr Hanson and made an appt. She put her on a number of meds.. Keppra, Pheno, etc. all along with her usual Trileptal. These were for seizure control. Dr Hanson believed these werent seizures, but more like twitches.. like OCD.
After months of trying Dr Hansons treatment. with no success. and these odd jerks and spasms only getting worse and worse. on Jan of 2008 I called the ULCA oncall pediatric neuro. He called me back shortly and heard what I was discribing.. then told me he was going to get us in ASAP. And he did. Nadia was addmitted to UCLA about a week later.
During her stay they did a Video EEG. They captured these odd spasms episodes. Sent her for CT Scans, and after speaking with the neuro team. Aggreed she had IS (infantile spasms). We knew it... and it hurt so much to hear. These seizures are deadly. They don't appear horrible on the outsides, but they damage the brain fast if untreated.
Before leaving the hospital they had a neurosurgons nurse come and speak with us. Telling us about a possible surgery that could help if the meds didnt.
After we made a fallow up appt with our neuro (now changed to Dr Cho.. we don't know what happened with Dr Hanson.) At this appt they contiued to add and up her dose on anti seizure meds. All which didnt work...
A couple months passed...
One day, while relaxing from a long day at the doctors office in Los Angeles ( We live an hour away) We put the kids for a nap. Some 15min later I hear my younger daughter(she was 1 then) screaming, crying.. I go up to check whats going on.. shes looking at her sister. I go to Nadias bed. And she was unresponsive. She wasnt breathing. We rush to the hospital which thankfully only is 2 or 3min away.
There she was intabated ( had a ventilator on her to breath for her) and sent down to UCLA.
We felt asthough the spasms were damaging her brain so badly to the point she would stop breathing and she couldnt balance her body out.. she'd tip over while sitting, which wasnt normal.
Hemispherectomy. This was the name of the surgery that could save my daughter. We spoke with the neurosurgon regarding this possible surgery to help the spasms stop. He have her a 60% success rate after reviewing her medical records. He told us, it wouldnt be a win win situation... she would have her right side (arm, legs, feet and hands) paralized. Because he would be removing the left side of her brain. This was my daughters only choice..so it wasnt a hard dicision.
Her surgery was set for July 18th of 2008.
Before this she went on to desat (stop breathing) about 5 more times. We kept pushing the doctors to move the date earlier.. but it wasnt possible.
The date had come! It was July 17th (we had to admit her a night before surgery for prep) We had a hospital prist come and baptise her the night before. We arent religious people. But this wouldnt hurt her either.
July 18th... they rush her into the operating room. And we wait... and wait.. 14hrs go by. I would get updates from the doctors and nurses.. after such a long wait the man of the hour comes out! Dr Mathern, her surgon says surgery was done. We were so thankful full of hugs.
A week goes by.. and they tell us she'll need to have a trach put in because she cant get off the ventilator. We had no idea what this was.. but oh did we learn so quickly!
We realized the heart breaking truth that we wouldnt hear our daughters voice. Not with out a leak anyway.
Months pass... Jan 2009 comes along and WOW SPASM FREE!!! Although she did have a big seizure (not a spasm seizure) and the doctors decided to put her on a ventilator at night; or anytime shes sleeping.
At this point her weight is still getting higher and higher. We've talked with every dietitian and endrocrinologist at UCLA. she had testing done over the past few years. and everything.. i mean EVERYTHING comes back normal! Which normally is great! But we want something negative.. we want a cure for her.
So we're now at the point where she is 4years old next month, and weighs just about 100lbs.
We are very scared for our daughter. And no one we've seen can help her..
Please if you can offer any help.. email me!!!
We are soo desperate =(
Thank you.
Comments:
I saw your siggy in a post and had to come see your profile and I see this journal...how heartbreaking for you and yours. I hav no clue as to what it is or anything about what you've described but it sounds like something I would see on "Medical Miracles" or something like that. I know you guys aren't religious but I'm saying a prayer anyway although she has already overcome so much!
damn girl, i didn't know all this was going on with your daughter. i'm so sorry! i hope you all have an answer soon, i bet you guys are jsut so frustrated. and yes, i'm here crying...and it doesnt help that i'm preg too! lol if you guys need anything, please le me know. i can't help with alot, but i'll try to help somehow. hope your lil girl gets better soon!
RIP Nadia, may God bless and watch over you and your family.
May God hold her and keep her!! RIP baby!!
I read your journal posts and saw your pics. You were an awesome mom to Nadia. I am so sad for your loss.
I have a severely disabled son who needs total care, so I know what that part is like.
You should know that you did everything a human being could. Try to rest and take care of yourself and your family.
Nadia is in a better place. In her photos you can see she was always surrounded by love.
Un abrazo,
Maria
I could not say that I know what it feels like but Im sure you all are strong....im know its really hard! So i leave you this:
The Lord will give strength to His people; The Lord will bless His people with peace! I promose Im here if you ever wanna talk momma
I am so sorry for your loss. My heart goes out to you and your family. She is in a better place where she feels no pain. This little angel has spread her wings.... RIP Nadia, you are very missed and loved.
I saw your post in one of the groups. I am so sorry for your loss, you have my deepest sympathies - I wish I could reach through the screen and give you my shoulder.
sweetheart you are in my prayers , RIP beautiful girl. your mommy has a sweet angel to watch over now .
Already a member? Click here to log in
My son was diagnosed with infant spasms. I was told that almost all cases of infant spasms go away around a year of age. I am hoping this is true. I am sooo sorry about what is going on with your daughter. It must be so hard for her and you as well! My heart goes out to you.
- gagegang
Message Friend Invite