Hi there!

Jennifer - posted on 04/15/2010 ( 11 moms have responded )

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I created this group because there doesn't seem to be many places online for mothers whose children have survived bacterial meningitis.

Our daughter fought for her life in the ICU and then neurology main floor at Children's Hospital in DC due to group b strep bacterial meningitis. We lived with her in the hospital for a month and were so blessed to be able to bring her home. She has since been able to begin bottle feeding and no longer needs a feeding tube and we've been working with PT, OT, and vision therapists to work on building back her strength after all that she's gone through. Her hearing is intact, but we know that she definitely has vision issues. We've been working on tummytime, teaching her how to roll over and play with her toys. As a result of the meningitis, she has a handful of health issues including diabetes insipidus (which is an inability to produce ADH which tells your body to hold onto its fluids). She also takes anti-seizure medications and we've been weaning her from her hydrocortisone to see if she can produce cortisol.

If you're a Mom who had to go through bacterial meningitis with your child, it'd be great to hear your story, where you're from, and the challenges and health issues you're child is facing.

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STEPHANIE - posted 5 days ago

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This was like looking in a mirror! I know there are no answers to my questions.... but it's do hard to not ask and I believe I will never stop wanting all the answers. My Daughter was diagnosed with bacterial meningitis at 3 days old and is now a few months shy of 13. She looks "normal" but has soooo many struggles. She sounds so much like your daughter it made my heart stop! She can't read or write and I know realistically she will never drive a car etc. But as a mother I want the world for my kids! It's amazing the peace I feel right now knowing I now have other mothers that know what's it's like to turn to!!!

STEPHANIE - posted 5 days ago

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Hi Jennifer I just found this site and it's encouraging! My sweet little girl was diagnosed with bacterial meningitis at 3 days old due to group B strep. She is now almost 13 years old and is very special little girl and any time I ask any doctors anything about her future I never get a straight answer EVER! We live in Utah and I have yet to ever meet a survivor so I often ferl alone. I now know I'm not I'm look forward to reading all the posts and telling people about my very special little girl!

Cassie - posted on 05/14/2014

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So I am not a mom of a child that has had meningitis, but I am a survivor. I was born dec. 1984. I was a pretty fussy baby, and for awhile it was chalked up to colic, my formula was changed, and the drs. said, she'll out grow it. In Jan. of 1985, one morning my mom noticed I was extremely hot (and after taking my temperature it was 103 degrees F), I was limp, and my soft spot did not feel right ( I can not recall if it was sunken or bulging). My dad was about to go to work, and she stopped him as she called the drs office, who insisted that I be brought in immediately. My dr. took one glance at me and told my parents to rush me to the hospital, not to go to the ER but to go right to the pediatric floor, as he was calling to let them know that they were on the way with me. (Sadly, he was able to recognize the signs that I had meningitis because a 5 year old girl had passed away a few weeks earlier from bacterial meningitis, and had similar symptoms.). A spinal tap confirmed my drs. suspicions. I turned 2 months old in the hospital, and after a few weeks and intense antibotic therapy, I was discharged to finish my recovery at home. My parents had asked what my prognosis was for life, and the drs. told them probably the same thing that you have been told. We wont really know until she's older to know the lasting effects. Well, For me elementary school, was a struggle, as was middle school. I was overly sensitive, but athletic and I was your typically developing girl. Things finally began to click in high school, and school was less of a struggle. I graduated high school, making the principals list both semesters my senior year. I took mainly honors classes, and finally math really clicked for me. I was accepted into and attended hood college my freshman year of college ( and ultimately enjoyed the freedom a bit too much). I ended up coming home and attending community college, and made the deans list the majority of my time there. During my time at community college I was diagnosed with depression and anxiety. I was given an antidepressant, which I found helped some but not to the degree expected. I transferred to Towson University, and graduated with my degree in Elementary Education. Before I was able to obtain my state certification, I found out I was pregnant with first child, which even though I wasn't married yet was a relief, infertility most likely wouldn't be an issue for me. That being said, my pregnancy was not the easiest. I managed to have very light morning sickness that subsided at the 3 month mark, we found out we were having a boy, and until May things we're rather uneventful, when I went into preterm labor at 30 weeks, thankfully the contractions stopped, and after a week of bedrest I was allowed to return to light activities. I was than diagnosed with gestational diabetes, which was thankfully controlled with my diet. My oldest son was born at 35 weeks, spent 12hrs in the nicu, and had to stay an extra day due to jaundice. About a year after he was born I wsa diagnoused with adult onset ADHD, but looking at my symptoms it's likely that I have had it my entire life but was never diagnosed because I am female and a genetic link doesn't exist. Fast foward 2 years later, and I become pregnant with my second child, I was given P17 shots to help keep me pregnant, since I had preterm labor and birth with my oldest. I had extreme morning sickness. At 27 weeks, I began cramping, I was told it was ligament pain, but I was dialated a centimeter and a half, so i probably was in preterm labor. At 31 weeks I was put on bedrest for 3 weeks, before being allowed to return to work, with strict instructions to move as little as possible. At 34 weeks, I thought my water had broken...thankfully it had not, at 35.5 weeks, I began to have signs of pregnancy induced hyper tension and was told I was allowed to work, but would require bi weekly NST's and ultrasounds to monitor my youngest son. I received my last shot at 26 weeks, and at 27 weeks, and 2 days my water broke while I was at work. I drove myself to the hospital, and after 14 hrs of labor, my youngest was born. He spent 5 hrs in the nursery, to monitor his breathing, and than was returned to me. So present day, I am the mom to an almost 4 year old, and a 5 month old. I work as a receptionist, am married, have ADHD, but am living a productive, self sufficient life. I'm not saying that everyone will turn out like me, and that there weren't struggles along the way, just hope that your child will be ok too. I hope my story is reassuring.

Shanna - posted on 02/01/2014

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It is comforting and disheartening to hear all of your stories. I am also have a child who had bacterial menningitis. She was 3 weeks old and when i took her to the hospital she was in sepsis shock and having seizures. The dr said if i had waited another hour she would have passed away. They rushed her away from me and took me to the chaplain's room where i sat alone with a stranger in shock devastated and fearful of whether my new baby would be ok. Why was i sitting with a chaplain...was my baby dying? It was horrible. It still produces horrible anxiety today 13 yrs later.
My daughter is now 13 and the struggles have been exhausting. Your stories have brought back memories of everything I have been through. The worst part is not being given answer by the doctors. I never got a heads up or support of the challenges to come. As a result of the menningitis she is hearing impaired, vision imp, brain damage, epilepsy, adhd, learning disabilities, and the biggest obstacle we are now facing is the short term memory loss. The hardest part is she looks normal but the gaps have gotten worse over last few years. She is in special ed which seperatea her from her peers and is realizing she is different. I could go on and on. I have tried to be her strong for her and not made excuses for her w her disabilities. I just recently came to the realization after a discussion with the neurologist that its time to realize her limits and make her aware through counseling that she is different. The school just labeled her intellectually disabled. It just breaks my heart. I was hoping the gaps would decrease and things would get easier as she got older. Everyday is struggle to stay positive and hopeful. Is she gonna be able to go to college? Drive a car? Live alone? I am trying to figure out these answers from a parent who has been through this. Sadly there isnt much to find on the internet. If i can answer any questions for what to expect on the days to come for any of you please contact me. Parenting a child with disabilities is very isolating because nobody understands what you are going through.
I would like to add my daughter is my heart. Although there has been many struggles and heartache ...
She is such a blessing and has taught me much in life about preserverance and determination!
I want the best for her as I know you want the best for your children! I am glad i found this forum I hope i can connect with some of you to have a person that understands, to encourage, cry, laugh, and just understand this.

Stacey - posted on 11/28/2013

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I'm so happy I have found this I have been looking for so long. Last year on October 23rd my daugther was only 19 days old and she was very Pail looking and not acting like herself. I took her to the ER and I only live about 20 minutes away. By the time I got there she had stopped breathing ( which I didn't know) They had me wait in the waiting room as well. By the time we got in and looked at her brain was telling her to breathe. She was starting to turn blue around her eye and under her arms. Her blood pressure went down to 10 and heart beat went to 230. They couldnt get a I've in so they had to go through the bones in her legs and they he to pump fluid into her that way.
When we brought her in she was 5lbs 13 ozs ( she was also 5 weeks early) they pumped so much fluid in her 4 days later she weighted lil under 20 lbs. she was soo big she was shiny her tounge could go in her mouth. And her ears were going in (like a boxers ears)
Long story short the doctors said she had meningitis and it went to her brain. They done so many ultrasounds and mri's. They have said there is brain damage and a lot of fluid. After 6 weeks in the children's hospital 4 different antibiotics 2 blood pressure meds. They finally let her go home.
We really haven't had any major problems with her. We did have to bring her in for surgery to get a shunt put in and that was in July. Other then that she been good. She turned 1 past cot and she in now 13 months old. The only thing that bothers me when I hah her two other family members
Had babies as we'll and they always tell her that their babies are crawling and talking lots, but my daugther just learned how to sit up. And this bothers me. I feel like I'm not doing enough for her. We are now starting a program at the hospital they are starting up for her. How long Did it take for others to get the crawling and walking down path?

Kristy - posted on 07/30/2012

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I had twins In June of 2010 they were born three months early, and had to be Place in nicu for three months till they were full term pretty much. Two weeks after they were born the doctors were worried a out them because they weren't getting better, but worse. They tested my kids and found bacterial meningitis is one of them, they treated both for the same thing even though they didn't find it in the second one (brendon) they went through hell the next three months. I was told over and over that they weren't going to make it. My instincts told me the doctors were messing up, and I did my research and caught them doing just that. I had to force them to retest brendon cuz no matter what they did. Otho g was helping even though my other son (mathew) was slowly getting better. I literally had to force the doctors to retest. They didn't want to. My sons ended up on jet ventilators it got so horrible. Finally after months it looked to be getting better. My son mathew was ready to go home and brendon, although he was struggling was slowly getting better. And then it all turned south again. When they were finally ready to go home they were put on hospice. The had p.t, o.t, speach therapists( to help with there eating) the had a plethora of medicine from ceasure to pain including morphine even stool softener. Brendon had to go through two surgeries. One for hernias both in the belly button and both testicles and a shunt. The "Meningitis" had Litterally eaten his brain. A weeks or so after he got the shiny we went in for a check up to make sure it was working right and to adjust it. I had complained about his breathing and they said it was nothing to worry about. They wouldn't even do an X-ray to make sure. A day later after all he went through. My son passed away. I hurried him the day before he turned 7 months old. Mathew just turned two. He is the happiest kid I have ever known. He is finally starting to walk and is learning to talk. He has a p.t, o.t, speach therapist, eyes specialists, and hearing specialists and he has to wear a leg brace. His right side doesn't work right because of the abscess in the left side of his brain. I thank god every day for him.

For all the moms out there whos kids survived I am sooo happy for you. It is the worst feeling to lose your child I still live with it everyday of my life. You r truly blessed
I wish all the families all the happiness in the world

Thank you for this chance to speak

Ashley - posted on 07/28/2010

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It's pretty amazing to see others who went through this as well

My son was 2 weeks old when we started noticing that he was very warm, very irritable, wouldnt sleep and would scrunch his face in pain. I took him to the ER where they took his temp. It was 39.9 which was super high and he was very close to seizing. They had him hooked up to IV's right away and had a spinal tap ordered. Once the spinal tap was done we received the terrible news...he had bacterial meningitis. They didnt know how bad it was, wasnt sure if he was going to make the next 24 hours. They did an x-ray on him and couldnt find the infection anywhere in his body. A couple days later they did an ultrasound on his head where they found the infection as well as brain damage. Our 2 months in the hospital was devestating. He hd 4 spinal taps, 3 MRI's, 11 IV's which they eventually put in a PICC line. Everytime they'd think he was ready to go home..he'd take a few steps back. His blood pressure was starting to rise from the 3 different antibiotics he was on. They told us we were very lucky that he survived and if we would have waited a day longer we would have lost him. He is 2 now. We arent sure how the brain damage will affect him but he's doing amazing!. He just started daycare and a happy healthy 2 year old. Everyday i think of what would have happened if i didnt listen to my mommy instincts when they were tellin me something was wrong. Everyone kept tellin me he was just Colicy and he'd be fine, meanwhile my baby was dying right in my arms. It's great to see everyone else's success stories!!!...

Jennifer - posted on 05/19/2010

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Evie, I had sent you a message through Facebook after your posting - hopefully it went through okay? Sometimes I have to step away from the computer in the middle of typing or emailing because my daughter is crying for me and so I can't remember whether I sent the message or not. I'm hoping you and your son are doing okay. Just wanted you to know that I've been thinking of and praying for you and your son.

To answer your questions, our daughter came down with the bacterial meningitis at one month. I started noticing her vision issues when I saw that her pupils weren't responding to light the way that they should. I also noticed that if I snuck up on her crib and waved my hand in front of her, she wouldn't notice. This has improved though and her vision seems to be getting a little better with time. The best way it was explained to me was that by the time her brain processes whatever is in front of her (a camera flash, a quick moving hand, or something else that's there and then gone in an instant), it's gone by the time her brain may have processed it. We know she can see some things though by her response to them, like her toys when they're hanging above her. Things that are more stationary and stay there in front of her, she has an easier time seeing.

Vanessa, I'm so sorry that I'm just now responding to your post! We've had a crazy few weeks with our daughter with labs, tests, appointments, and what not. I know exactly how you feel when you talk about the flashbacks to when it all first happened and feeling so angry and sad. I feel so angry that this happened to our daughter and so sad by how much harder it is for her because of it. We had friends of a friend who just last week lost their 18 month old daughter to meningitis and when I heard of their loss, it reminded me of how lucky we are that our daughter is alive. I just wish she didn't have to go through all this - the constant labs, tests, etc. I'll keep you both in my prayers. Sending a big hug your way!

Vanessa - posted on 05/03/2010

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.My son was diagnosed at one week old. He wasn't eating and was crying all the time. Couldn't comfort him or get him to go to sleep. The last test they did was the spinal tap...it was bacterial menengitis. My son was in the hospital for three months. On a respirator for the first month. It seemed that everytime he took one step forward he also took two steps back. My son has partial brain damage from the infected fluid sitting on his brain. He has hydrocephalus which required a VP Shunt to be placed at about two months old. That one collapsed and he needed it to be revised at about three months of age. My son developed two different types of seizures, the infantile muscle spasms were the worst. We tried every typr of medicine and dosage. For his first year of life he had a seizure every hour on the hour. The only time he was at peace was when he was sleeping. Every day I took him to the pediatrician to get a shot to try and stop the seizures, on the weekends I gave the shots. The ER docs refused to do it for me because the dosage was for adults. It didnt help. The neurologist said she would give it another week and after that she was going to refer him for trial meds. A few days later he woke up at 6:50am and had his first seizure of the day..it was his also his last. My son's seizures went away and he was off meds until the end of kindergarten. Since then it has been an ongoing battle. My son had seizures every couple of months. He has also had to have his shunt replaced 5 times in the last two years. My son is now on a combination of meds and he has been seizure free since June 25, 2009. This is the longest he has gone since they began again. My son is going to be 13 in a couple of months. He is mentally delayed, at the age of about a 6 or 7 year old. He has always been slower at reaching his milestones as a baby and toddler but it is more obvious now at school age what this ugly disease has done to my son. I worry about his future, who will take care of him when I am gone? Will he ever be independent? It is heart breaking. I have flashbacks of those days when he was sick, I am haunted by menengitis...I am trying hard to accept that this is the hand god has dealt us. I am angry and I am sad for my child. I pray that medicine advances quickly so that other kids will not have to suffer.

Evie - posted on 04/21/2010

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Hi Jennifer



Our son contracted bacterial meningitis (Pseudomonas Aeruginosa) a few days after he was born whilst still in hospital. He spent a week in ICU where he was fed by a gastric tube and after having sleep apnea he was also ventilated. After his week in ICU he was then moved to the Special Care Baby Unit where he was giving antibiotics for 3 weeks through a central line. We were able to bing him home for a week but then had to readmit him as he developed Hydrocephalus as the infection in his brain left behind some debris which got blocked in one of his ventricles so he had to have surgery to put a shunt in to drain away the excess fluid.



We're not sure if our boy will have any challenges as the Doctors say it is too early to tell as he is only 7 weeks old, so far he doesnt seem to have any hearing issues as loud noises always startle him.



The Doctors at the hospital can't shed much light on what challenges may lie ahead for our boy as the 'bug' he contracted is quite rare and the Doctors haven't seen it in a baby before.



How old was your daughter when she got meningitis? What was the tell tale sign that she has vision problems? I worry our boy may also have vision problems but I guess it will be sometime before we will know as his eyes aren't fully developed yet.



Thanks for starting this group!

Evie - posted on 04/21/2010

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Hi Jennifer



Our son contracted bacterial meningitis (Pseudomonas Aeruginosa) a few days after he was born whilst still in hospital. He spent a week in ICU where he was fed by a gastric tube and after having sleep apnea he was also ventilated. After his week in ICU he was then moved to the Special Care Baby Unit where he was giving antibiotics for 3 weeks through a central line. We were able to bing him home for a week but then had to readmit him as he developed Hydrocephalus as the infection in his brain left behind some debris which got blocked in one of his ventricles so he had to have surgery to put a shunt in to drain away the excess fluid.



We're not sure if our boy will have any challenges as the Doctors say it is too early to tell as he is only 7 weeks old, so far he doesnt seem to have any hearing issues as loud noises always startle him.



The Doctors at the hospital can't shed much light on what challenges may lie ahead for our boy as the 'bug' he contracted is quite rare and the Doctors haven't seen it in a baby before.



How old was your daughter when she got meningitis? What was the tell tale sign that she has vision problems? I worry our boy may also have vision problems but I guess it will be sometime before we will know as his eyes aren't fully developed yet.



Thanks for starting this group!

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