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neuro's failure to recognize hse

russel
0 Recommendations

i just cant help but think, if our daughter was given iv acyclovir soon enough is it possible that she may have recovered from her hse?

our daughter was hospitalized 07 dec 08
after her lumbar tap (she started to deteriorate/goes to coma)17 dec 08 (ten days after) only then that she was given iv acyclovir...today it has been 8 months and our daughter is still in a vegetated condition...

just want to ask, is there anyone or anyone you know here whose gone to pvs due to e and was still able to recover?

Explore topics in this discussion:

Hysterectomy Seizures Physical therapy Herpes simplex Pain Encephalitis Diazepam Acyclovir

13 replies

IngridGuerci

Encephalitis is a very hard illness to diagnose and most doctors have never seen a case of it. Acyclovir only treats one specific type of encephalitis, the herpes simplex. If your daughter's encephalitis is not this type, the meds would not have prevented her deterioration. Also, acyclovir is a treatment, not a cure.

Ingrid/Tarrytown, NY
HSE 12/95 (I was 45 years old)

Sandy_H

Hi Russel

It took the doctors 2 days to diagnose me and then my Neuro took an educated guess. He decided to triple my dose of acyclovir as I was deteriorating. They also put me into a coma to give my brain time to heal.
The expected me to die and I survived. Your daughter hasn't given up either. Her brain maybe taking it's time to heal or having trouble healing it's self. Never give up hope.

How old is your daughter ? Have the doctors told you what areas of her brain are damaged? Are you able to spend lots of time with her?

You said that it's been 8 months. I was highly medicated over a 2 year period having many medical tests and not really functioning normally. My friends would say "the lights were on but no one was home" That is the impression I gave them. My eyes were open but I was not really there. They stuck by me and with a lot of hard work and time I am now ok.

The doctors are amazed at my recovery, miracles do happen.

My husband spend many hours beside me and he would hold my hand and retell all the stories of our lives together. My good friend would come in and massage my feet cause he didn't know what else to do. The doctors now say that this type of stimulus helps the brain reconnect.

Our thoughts and prayers are with you and your family.
Cheers Sandy

missmariann3

For two years I had lung infections and all kind of hit and miss shots. Had they hit HSE then used acyclovir I wouldn't be like i am today. I would be like I was pre E, I hurts to think that, and I am sorry for your daughters condition and your family's suffering.
Mariann

russel

ma’am Ingrid

thanks for the enlightenment, i guess its really a case to case basis, I’ve read yazmin’s story and the reply’s, being put into iv acyclovir as soon as possible really helps a lot…
our daughter did suffered from hse, I don’t want to blame her neuro, considering our daughter’s case was only the second hse she was able to handle, what bothers me is when we took our daughter to another neuro, she told us a story of a hse case she handle, she immediately put her patient into iv acyclovir and the 2 year old child was able to recover. I just cant help but react, but I guess our daughter’s case is different, she’s been having seizure that lasted more than an hour even with diazepam her seizure persist, in one seizure it lasted almost two hours, her heart beat plummet from 100 bpm to 50 bpm, we almost lost her, a miracle happened, her seizure suddenly stops and her vital signs stabilized, things like this maybe took a lot of damage to her brain.

ma’am sandy

thank you so much for your concern, our daughter is now 7 years old, she’s now under going physical therapy, it’s the left side of her brain that was affected by hse, im so happy for you and for every one else in this site who survived hse, our daughter being on pvs is already a miracle for us so many time she suffered from seizures which persist even with application of anti seizure meds, so many times we thought she would left us, but she survived, although beaten badly by hse were still optimistic things will turn out right for our daughter, its in people like you and everyone else in this site where we get our strength. Again, thank you so much.

ma’am mariann

before her hse, our daughter suffered from primary complex, although her doc’s doesn’t want to connect her primary complex to her hse, we think otherwise, we believe her hse was triggered by her primary complex medication, please correct me if this is wrong…
today, our daughter always shouts, crying without tears maybe she’s in pain we can not really tell, but that’s already an improvement for us, after her discharge from the hospital she used to be so quiet. another improvement she has been seizure free for about 3 months now.

missmariann3

Seizure free for 3 months, sounds good.
I noticed that everything I had wrong with me pre E, it quadrupaled post e. New things popped .example. I had a hysterectomy at 35 years old, the year after E. I think E contributed to a lot of speeding up of problems.
Mariann

jesslaw

Dear Russel,

Hello, I wish you and your daughter the best.
My doctors put me on acyclovir right away, I was in a coma almost immediately after I was admitted to the hospital. However they diagnosed me and put me on acyclovir right away and I did not have much problem with recovery, I went back to work after only one month. My main side effect is that I cannot smell or taste much.
And I was not even in the US, I was in a developing country where the medical costs are not as expensive. ....

Dignity

Dear Russel,

Your story concerning your daughter is a very touching and sad one, and yet, as you said in your messages, with time there seem to be changes and improvements.

When I was put in a coma, my brain was so seriously dammaged that my husband and family where told that I would certainly die, I actually went through death twice and had to be reanimated, and that if ever I lived, I would be in a vegetative state for the rest of my life.

When I finally managed to come out of my coma, I could not speak nor move, and yet I was there, I could see and hear the people around me, and yet I could not communicate with them. I heard them time and time again say that there was no hope, that I was not there, and yet in my mind I would say to them, "yes, I am there, please just try to find a way to communicate with me".

The first year was difficult, and because they did not know how to communicate with me, I tried my best to find ways to communicate. I finally found that I could still move a hand and made signs to them, which at first they could not understand.

In some cases I know, people cry, which is something I did a lot, and sometimes they scream. When my surrounding finally understood that what I was trying to do was communicate, they realised that I was still there and started to find ways to communicate back to me. They started showing me pictures, looking at my eye reactions when they showed me pictures, they also felt my heart beats to see if they would go faster when they spoke about nice memories.

It all took time, but with reeducation, with very strong belief in recovery, I gradually learnt to be more mobile, talk, and deal with all the thing's that had gone wrong with me.

Like Jerseagal, Ingrid and many other members of this site, I strongly believe in the power of the mind and brain to relearn, reroute, and recover from brain dammage, even if certain thing's still stay, certain pains and handicaps still stay, but we learn to live with them, and we actually become different people, but who still have potential to do many thing's.

It is also important for the caregivers, who often suffer as much as the E. sufferers and who often do not know what to do to help, to know that every effort you make is worth it, and will, with time and patience, care and love, bring forth very, very good results, which may even be better than what the Doctor's can bring you because they have less time, less patience and they don't know, like you do, the patient and the patient's real history.

So Rusself, from what you have already said concerning your child, and the progress she has already made, she is actually starting to communicate verbally with you "screaming and shouting", it seem's that there is still hope and that you have been doing good work with her. Carry on like that, show her pictures, show her love, and I am sure that you will carry on improving her condition.

I wish you all the best of success with her and know that with us you will always find support.

Take care!

Dignity

russel

ma'am dignity

thank you so much for sharing your experience with us, i was crying while reading your reply, your story was almost the same with our daughter's situation.
while we are at the hospital her doc's really have a hard time to tell us that our daughter might not survive her ordeal and even though she survives she would have disabilities.

we just prayed really hard so that she may survive. that is why we have been telling, having our daughter in her situation right now is already a miracle for us.

you help us a lot with your reply, i can not find the words to express how grateful I am to you.
you’ve given us renewed hope by sharing your experience, as if its our own daughter is telling us what she is feeling right now, I don’t know what to say.

thank so much im so happy for you and everyone else here who survive hse. by sharing your stories, you become our strength, you’re giving hope to people who needs them.

maialand

Our daughter, Joanna, who we attribute this site to died from Encephalitis, August 5th, 2009, after one week of low grade, cold like symptoms from July 20-27th which we did not respond to. On Monday July 27th my husband took our daughter into her child doctor and he looked for stiffening of the neck (meningitus symptoms) and sent her home with parents instructions to watch for complications. Two days later on Wednesday, July 29th, in the evening she started to loose her balance. We got her into the hospital 3-4am the next morning. The doctors were unable to reverse (what they believe to be a sinus bacteria) that invaded her brain and destroyed it by August 4th. She was our only child. We are devastated.

one_lil_red_hen

Russel, Here at Encephalitis Global we recently had quiet a lengthy discussion on recovery and the after effects of E.

It was the general concenus that no two cases are the same, and likewise, no two recoveries are the same.

My heart goes out to your daughter, to you and your wife. I'd say, keep talking to her. Read to her, hold her hand, bath her, use different textured cloths to brush again her skin. Brush her hair, tell her stories of things that happened when she was born, and other important events in her life, and tell her you're not giving up on her.

Even if she's not responding, I'll just bet she's hearing your every word. She's still in there Russel, and I pray that she will one day come back out and play. Do all you can to move forward from here.

It does us no good to keep looking back at what could have been done or what did happen. It happened. We need to move on from there.

I'm sure it's a nagging thought every time you look at your daughter, what if this was done, what if that was done. What is done is done.

We cannot clearly see where we are going if we're always looking behind us. Map a path forward. God is walking with your daughter, you and your wife.

May he bring you peace each day and fill it with love, and may your goodness shine in the darkest of days.

God speed~

hen

one_lil_red_hen

Maialand, I'm sorry for your loss. I cannot begin to know how you feel.

But know, you are not alone here. We're hear to listen if you need us.

~hen

Dignity

Dear Maialand,

Your story concerning the loss of your daughter is a terrible and sad story for her and for you.

I have spoken with many people who have a child that is gravely ill, or that have lost a child to a terrible illness, and the suffering that they all bear in their hearts is terrible.

To have a sick child is terrible, and to loose a child is terrible. If you have come to us it is because you feel the need to communicate your distress, so please do not hesitate to ask for assistance when needed.

Like you, there are other people on this site that have also lived through the loss of a child, or a loved one to E, and I am sure that they can bring you and find support.

We are all here for you, and will try and do our best to help you, answer your questions when needed.

With my deepest sympathy and understanding

Dignity

russel

ma'am maialand,

im so sorry for your loss our prayers are for your family and your daughter.

ma'am lil red hen,

thank you for your reply, what you said is what i've learned from this site, i'm trully grateful to you and everyone on this site sharing your expirience and teaching caregiver's the proper way of taking care of hse sufferers.

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