After effect after discharged 1 month - Meningitis Now

Meningitis Now
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After effect after discharged 1 month

ryanhuang614
ryanhuang614

My daughter got a bacteria meningitis after her 12 days, she stayed 1 month in hospital treated with Linezolid and Penicillin. After another one month discharged from hospital, we realized she drink very little infant milk 400~500 ml daily, 57 cm height and 5KG body weight, in a very bad appetite, we changed the milk brand once and it improves nothing, her body rejects all sorts of food. We took her back to hospital but the doctors cannot tell what's really going on. We're very worried !!!

Is there anyone who has any experience in this situation and what suggestions I can get, and most importantly, is there any way to improve her appetite ? She's less than 3 month old, we really don't know what to do and from where can we get help.

9 Replies
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Hello there Ryan❣️. It is a little after 2am here in the state of Colorado, USA😋, so I've been getting ready to go to bed, but when I switched the lights off I noticed I had left my cell phone open, and the bright glow of the screen was distractingly bright😳

So I reached over to power the phone down, and noticed that I had left the Health Unlocked app open...and as luck would have it, the app was open to the page where your text was posted😃

But once I read through it, I knew that my plans to turn in for the night would have to be postponed for the time being, because once I read your heartbreaking and poignant story, I simply couldn't bear the idea of allowing your message to go unanswered; in cases like yours, in which you and your family have been through more than two months of high stress, tremendous fear and worry, weeks of little to no sleep, and subsisting on a diet of skipped meals or hospital food, even eight minutes of waiting for advice and feedback in reference to your precious daughter's recovery from a devastating illness undoubtedly feels like eight hours (or even eight days!) to her traumatized and terrified parents😢

Alas, when I took a closer look at your post and the attached thread, I noticed that no one had yet replied to it (maybe everyone in the forum lives in an area where it's also 2am😉), but knowing how much you and your baby girl have been through, how terribly worried you are, and how desperate you are for answers, I just had to flip the lights back on and start writing ASAP😋

I might have to temporarily stop writing for the night, and save the remainder of my feedback for tomorrow (I get a little punchy and incoherent when I'm really tired, and I don't want to put you through that😄!--you've already endured more than enough drama and trauma without having to be faced with more of it, especially from a total stranger in he middle of the night🤣

So alrighty then, here's the information I've gleaned from my own experiences that I believe will be the most relevant; I hope and pray that it proves helpful for you, and ideally gives you some much needed and well deserved comfort and peace of mind😍

To begin with, I haven't had any children myself yet, nor am I three months old anymore🤣. But I HAVE had meningitis--many, many times (SO many, in fact, that I have actually lost count). The total as of today lies somewhere between 40 and 50 cases (!😳!), which have been an alphabet soup of viral meningitis, aseptic meningitis, encephalitis, and a disease that combines the two called meningioencephalitis.

Long story short, I don't make antibodies to the shingles virus (VZV), so my system can't suppress it or keep the numbers below outbreak levels; it's also missing the ability to "recognize" the virus, and therefore doesn't ever remember how to recognize and attack the virus in subsequent infections, which results in seemingly endless bouts of the numerous disorders that VZV can cause, from VZV meningitis to shingles to VZV endocarditis.

I also have an immunodeficiency that requires weekly infusions of immunoglobulin, but I seem to be extremely sensitive to it; because unfortunately, every infusion triggers a case of aseptic meningitis, which takes an average of 5-7 days to recover from😳😆

For the most part, all forms of meningitis are essentially the same as far as symptoms go--the main difference is the cause (e.g., bacterial, fungal, viral, and aseptic, which means that the disease results from either infection with a bacteria of some sort; infection with a fungus; infection by a virus; or illness resulting from exposure to something like a particular class of medications, or the dyes used to enhance colors in breakfast cereals or candy like Twizzlers licorice or the candy coating on M&M's😳

The second (and most frightening) difference amongst the various firms of meningitis is the prognosis. As you've no doubt heard by now, the first two forms of meningitis I mentioned above (bacterial and fungal) tend to progress quite quickly, and the patient can move from being perfectly healthy on a Saturday morning to a coma and life support by Saturday night, with a very real risk of shock, multiple organ failure, severe disability, or death occurring within 24-48 hours.

Conversely, the viral and aseptic forms are very rarely fatal, and their trajectory tends to unfold quite a bit more slowly, with the worst of the symptoms reaching their peak in about 3-5 days, and lingering another 2 to 10 days on average. They are usually considered more benign, with the more dangerous and disabling symptoms such as shock, organ failure, coma, and/or death that are such a devastating risk in the bacterial and fungal types of meningitis being much more rarely seen in the viral or aseptic forms.

But no matter what the cause or the type of meningitis, one detail they all share is the fact that they inevitably cause the patient to feel exceedingly ill, with most cases presenting with fever, body aches, nausea or vomiting, stiff neck, sensitivity to light, ataxia, severe fatigue, and the symptom that is its namesake (inflamed meninges, which is the membrane that encases the brain and spinal cord) being common features amongst all four types of meningitis.

Throughout the course of my many experiences with meningitis, friends and family and hospital staff alike often ask me what this "meningitis headache" feels like, and unless they themselves have endured a "spinal headache" (such as in the aftermath of s spinal tap; in fact, the headache from iiAthat procedure is the closest I've ever come to duplicating the severity, duration, location, and type of head/neck/back pain), they can't begin to understand or imagine just how agonizing that headache can be, which is saying something

aving experienced it so many times myself, I'm extremely sensitive to

Besides the catalyst/am more delighted than words can express that your baby girl made it through that terrifying and heartbreaking illness, with little to do hto

We're Chinese, we couldn't get help from our doctors because they told us they don't know how to deal with the situation.

I tried several hospitals already but all in vain. I merely want my baby to grow up as a normal person. But now, after discharged from the hospital for more than 1 month, she seems like refused to get bigger, she eats very little, 400~500 ml infant milk daily, sometimes even less.

What should I do ? We tried very hard to get her eats more but no matter how many ways we try, she just stays the say, if we feed her more, she vomits. Without intaking, how she grow up ?

In your post I read through, I only can imagine you're so brave. And my daughter is too young and small to be brave. We couldn't read / explain or explicate what she really needs or wants, her little face shows so little for this deadly illness.

Oh, my lord !

Ooooooo, sweet Ryan, I Feel your pain and worry, and my heart breaks for it😳 But sit tight just a little bit longer, Ryan!, the cavalry is on the way😋. I'm almost finished typing up the rest of that information I promised you (it's taking such a long time because there a lot of information I had that I thought might be of great help to you😍❣️, plus I myself had an infusion the other day that's made me very ill, and it has affected my ability to see or read or coordinate my typing😳 But those side effects are receding bit by bit, and in the meantime I'm typing up as much helpful detail as I can😁. Your family is our family here on Meningitis Now, and we care about all of you very very much😍 So just hang in there a little while longer; I'm working hard on typing up my own

Information/advice/personal history details that might be helpful, and I know some other fellow Meningitis patients will provide comfort and advice and support as well 😍. You are surrounded by light and love and concern and compassion and caring, from patients all over the world, and we wish you well♥️ I'll be back in tough very very soon 😋

Thank you so much for your effort !

Hello there Ryan❣️. It is a little after 2am here in the state of Colorado, USA😋, so I've been getting ready to go to bed, but when I switched the lights off I noticed I had left my cell phone open, and the bright glow of the screen was distractingly bright😳

So I reached over to power the phone down, and noticed that I had left the Health Unlocked app open...and as luck would have it, the app was open to the page where your text was posted😃

But once I read through it, I knew that my plans to turn in for the night would have to be postponed for the time being, because once I read your heartbreaking and poignant story, I simply couldn't bear the idea of allowing your message to go unanswered; in cases like yours, in which you and your family have been through more than two months of high stress, tremendous fear and worry, weeks of little to no sleep, and subsisting on a diet of skipped meals or hospital food, even eight minutes of waiting for advice and feedback in reference to your precious daughter's recovery from a devastating illness undoubtedly feels like eight hours (or even eight days!) to her traumatized and terrified parents😢

Alas, when I took a closer look at your post and the attached thread, I noticed that no one had yet replied to it (maybe everyone in the forum lives in an area where it's also 2am😉), but knowing how much you and your baby girl have been through, how terribly worried you are, and how desperate you are for answers, I just had to flip the lights back on and start writing ASAP😋

I might have to temporarily stop writing for the night, and save the remainder of my feedback for tomorrow (I get a little punchy and incoherent when I'm really tired, and I don't want to put you through that😄!--you've already endured more than enough drama and trauma without having to be faced with more of it, especially from a total stranger in he middle of the night🤣

So alrighty then, here's the information I've gleaned from my own experiences that I believe will be the most relevant; I hope and pray that it proves helpful for you, and ideally gives you some much needed and well deserved comfort and peace of mind😍

To begin with, I haven't had any children myself yet, nor am I three months old anymore🤣. But I HAVE had meningitis--many, many times (SO many, in fact, that I have actually lost count). The total as of today lies somewhere between 40 and 50 cases (!😳!), which have been an alphabet soup of viral meningitis, aseptic meningitis, encephalitis, and a disease that combines the two called meningioencephalitis.

Long story short, I don't make antibodies to the shingles virus (VZV), so my system can't suppress it or keep the numbers below outbreak levels; it's also missing the ability to "recognize" the virus, and therefore doesn't ever remember how to recognize and attack the virus in subsequent infections, which results in seemingly endless bouts of the numerous disorders that VZV can cause, from VZV meningitis to shingles to VZV endocarditis.

I also have an immunodeficiency that requires weekly infusions of immunoglobulin, but I seem to be extremely sensitive to it; because unfortunately, every infusion triggers a case of aseptic meningitis, which takes an average of 5-7 days to recover from😳😆

For the most part, all forms of meningitis are essentially the same as far as symptoms go--the main difference is the cause (e.g., bacterial, fungal, viral, and aseptic, which means that the disease results from either infection with a bacteria of some sort; infection with a fungus; infection by a virus; or illness resulting from exposure to something like a particular class of medications, or the dyes used to enhance colors in breakfast cereals or candy like Twizzlers licorice or the candy coating on M&M's😳

The second (and most frightening) difference amongst the various firms of meningitis is the prognosis. As you've no doubt heard by now, the first two forms of meningitis I mentioned above (bacterial and fungal) tend to progress quite quickly, and the patient can move from being perfectly healthy on a Saturday morning to a coma and life support by Saturday night, with a very real risk of shock, multiple organ failure, severe disability, or death occurring within 24-48 hours.

Conversely, the viral and aseptic forms are very rarely fatal, and their trajectory tends to unfold quite a bit more slowly, with the worst of the symptoms reaching their peak in about 3-5 days, and lingering another 2 to 10 days on average. They are usually considered more benign, with the more dangerous and disabling symptoms such as shock, organ failure, coma, and/or death that are such a devastating risk in the bacterial and fungal types of meningitis being much more rarely seen in the viral or aseptic forms.

But no matter what the cause or the type of meningitis, one detail they all share is the fact that they inevitably cause the patient to feel exceedingly ill, with most cases presenting with fever, body aches, nausea or vomiting, stiff neck, sensitivity to light, ataxia, severe fatigue, and the symptom that is its namesake (inflamed meninges, which is the membrane that encases the brain and spinal cord) being common features amongst all four types of meningitis.

Throughout the course of my many experiences with meningitis, friends and family and hospital staff alike often ask me what this "meningitis headache" feels like, and unless they themselves have endured a "spinal headache" (such as in the aftermath of s spinal tap; in fact, the headache from iiAthat procedure is the closest I've ever come to duplicating the severity, duration, location, and type of head/neck/back pain), they can't begin to understand or imagine just how agonizing that headache can be, which is saying something

aving experienced it so many times myself, I'm extremely sensitive to

Besides the catalyst/am more delighted than words can express that your baby girl made it through that terrifying and heartbreaking illness, with little to do hto

Hi Ryan😍❣️, it's SqueakMouse again😋 Please forgive me, I tried to send the reply I wrote last night many hours ago, but when I just logged in to finish it as promised, I noticed it didn't post(?) I'm so sorry😳!, I had stayed up writing into the wee hours so you wouldn't have to wait a long time for a reply, and then I ended up making you wait a long time anyway😬 But I'm about to get to work on completing it; meanwhile, I hope that your little girl will continue to regain health and strength and happiness with each passing hour😍. Though the road to recovery can feel frightening and unfamiliar, you aren't alone in this; there are many fellow meningitis sufferers in this forum, and they've accumulated a lot of wisdom and insight along the way😉--they also have big hearts, and I know your family is surrounded in support and hope for your daughter's speedy recovery😍 I'm going to get started on typing up the rest of the information I have for you now, and I'll post it as soon as I can😁

Hi! I just came across your post, and although I am from the United States I have found the Dr.s are at a loss everywhere in treating after effects of meningitis. I have no medical background, and have no experience with babies or children that have had to endure this terrible disease, but I contracted bacterial meningitis this past April and am still experiencing pain and other problems associated with it. Including loss of appetite. I have terrible headaches, neck & spine pain and general nerve and muscle pain. stimuli from social settings, loud TV & music, having to concentrate too much, too many people talking to me at once... intensifies my symptoms and I seem to overload and shut myself down. In the beginning the headaches were the worst things I was experiencing. They were excruciating! I'm sure a baby is feeling the same, they just can't tell you. I know at 3 months ols a baby is suppose to be on formula only, but in this case, would your Dr. consider letting your baby take a couple bites of runny rice cereal, baby applesauce or other baby food throughout the day to get something in the belly that tastes good and may stimulate the appetite? Also would they consider an infant pain relief? The pain will make you give up on eating and thriving. Until you can find out these answers, treat your baby as if she has the worst headache in the world. Keep the lights & noise low, and stimuli to a minimum (people coming over oohing and awing and holding and making noise). Try to keep her wrapped securely and her neck secure so her head and neck doesn't have to move or bob any more than necessary. Keep car rides to a minimum. 6 months later they still hurt me. I don't know if it's the vibration, or what it is, but I come home feeling really bad. And I can't call because it's an international # & long distance for me, but Meningitis Now has a toll free hotline for those in the UK that has experienced people you can talk to that can answer many of your questions.

Hi there, some of your suggestions are very reasonable. I tried to communicate with the doctors. Maybe it's worth to try. I don't know.

Yes, it's really difficult to judge how the baby felt cause she's too little to talk and express herself, moreover, I don't know if she digests other food than formula milk. Don't know how risky it is to try.

I feels like a total mess.

But thanks for your idea.

Hello there, Ryan😍❣️--it's SqueakMouse here (I was one of the members posting on this thread several weeks ago in reply to your questions and concerns about meningitis and your sweet baby girl😊). I just wanted you to know that the two of you remain in my thoughts and prayers, as often now as was the case when I first "met" you😉. I hope with all my heart that your daughter is doing better and getting back to the healthy happy self that you're both familiar with and accustomed to, and that you both deserve to experience once again in ever increasing percentages, and in ever increasing amounts of time😍 I'm here for you if you need a shoulder to cry on or someone to bounce ideas off of or to get confirmation from ("Is this symptom normal?" "How long does full recovery take?" "Why does her condition occasionally regress after weeks of positive progress?", and other common questions and concerns😋). Sending you lots of love, and best wishes for a healthy happy holiday season😍❤️💚❤️💚❤️💚❤️💚❤️💚❤️💚❤️💚❤️💚❤️💚

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