Encephalite HSV1 - retour d'expérience sur un enfant de 22 mois

[Titio]

Bonjour à tous,Mon petit garçon a contracté une encephalite par les virus herpes simplex HSV1 et eipstein barr il y a bientôt 1 mois, il avait 22 mois et demi.

Nous sommes aujourd'hui sortis de l'hôpital, il a été traité par aciclovir et eu de l'immunoglobuline.

Quelqu'un dans ce forum a t'il eu cette expérience à l'âge de 22 mois?

Quelles ont été les conséquences même si chaque être humain est différent?

L'IRM révèle des lesions cerebrales sur la substance blanche du cerveau côté gauche du lobe temporal et une partie du lobe occipital.

Il a un peu perdu en mobilité mais sait marcher tout seul, sasseoit, danse quand il entend des musiques. Le langage a régressé même si a son âge il ne faisait pas encore de phrases, il disait quand même pas mal de mots et en dit aujourd'hui 4 ou 5.

Quelles sont les types de conséquences dûes à ces types de lesions cerebrales?

Merci de vos retours et bon courage à tous

[RainthenSun11]

Hello, I'm sorry to hear you are going through this with your little one. He is young and hopefully slowly with therapy he will be ok. 🌻

[HSE_Survivor]

Hi Tito . Is it possible for you to write in English with this link?

translate.google.com

[Titio in reply to HSE_Survivor]

Hello everyone, my little boy contracted encephalitis caused by the herpes simplex viruses HSV1 and Eipstein-Barr almost a month ago. He was 22 and a half months old. We are now out of the hospital; he was treated with acyclovir and immunoglobulins. Has anyone on this forum experienced the same thing at 22 months old?

What were the consequences, even though everyone is different?

The MRI revealed brain lesions in the white matter of the brain on the left side of the temporal lobe and part of the occipital lobe.

He has lost some mobility, but he can walk independently, sit up, and dance when he hears music. His speech has regressed, although he wasn't yet able to speak sentences at his age. He still spoke quite a few words and now only says four or five.

What are the consequences of these types of brain injuries?

Thank you for your feedback and good luck to all.

[HSE_Survivor in reply to Titio]

encephalitis.info/story/cov...

Use translate.google.com to read this .

[Paula-38 in reply to Titio]

Hi Titio, I can write in both languages but it would make it easier for everyone if I write in English.

I had Herpes Simplex Encephalitis the day after my first birthday and I was diagnosed with status epilepticus at the same time. I didn't have an MRI because I don't think it was out at the time, but I had CT scans and EEG's so my dad said, otherwise I wouldn't know. I had similar speech problems to your little boy, I couldn't form a full sentence without stopping and starting even when I was a teenager, but I think it improved by the time I was in my 20s although disinhibition has always been a massive problem for me when I was growing up, although I still have it, I don't think my disinhibition would go away completely but I have to learn to deal with it. I still have aphasia although its now only expressive aphasia, there are different types of aphasia. I haven't been diagnosed with aphasia but by listening to other people who had encephalitis talking I say " it looks like I might have had aphasia ".

I wasn't even diagnosed with an acquired brain injury until 2021,

I have got chronic disabling Obsessive Compulsive Disorder -OCD, so nobody medical has really mentioned what part of my brain has been affected but I assume it may well be the frontal lobe and a area of the frontal lobe called the pre frontal cortex and maybe the hypothalamus.

My Story is on the Encephalitis International website under Your Stories - then select Paula's Story.

[Kekupua]

Bonjour Titio, merci d'avoir partager avec nous votre situation, c'est fort de vous. On espère que ton petit continue de progresser. Le site Encephalitis International présente de nombreux témoignages de jeunes qui ont contracté l'encéphalite à HSV1 et qui se sont très bien rétablis. Cependant, à mon avis, cela dépend de l'agressivité de la maladie. Épilepsie, coma, séquelles sévères, la durée d'hospitalisation peuvent annoncer une convalescence longue et difficile. Ma femme a contracté l'encéphalite HSV1 à 44 ans, traitée par acyclovir, mais elle a été gravement malade – elle est restée dans le coma pendant cinq jours et à l'hôpital près d'un an avant de pouvoir revenir. Cinq ans plus tard, notre vie a radicalement changé, et elle est de plus en plus independent, malgré les pertes de memoire et périodes difficiles. C'est si incroyable, si je me souviens les jours au debut, apres la coma. Pour ma part, j'aurais aimé passer moins de temps à m'inquiéter de ce que les médecins ne pourraient pas m'expliquer. Je vous conseille de rester vigilant quant aux signes de crises qui pourraient encore survenir et de vous assurer que les médecins de votre enfant prennent en compte ce risque. J'espère que la situation continuera de s'améliorer. Bon courage.

[Lilster79]

Hi Titio, I am sorry to hear about your son. My daughter had HSV1 encephalitis when she was 3.5 years old almost 6 years ago. She too regressed with her speech but it did recover and she is doing well now and is in main stream school. It hasn’t been easy and school has been a bit difficult for her with reading and writing but she is a lovely girl and enjoying life. Wishing you all the best.

[KLPE in reply to Lilster79]

Hi, would you mind if i PM'd you, my son had encephalitis at a similar age to your daughter, and looking at your other posts it sounds like you had a similar experience to what we are currently having. I'd love to connect if possible. Kay

[KLPE in reply to Lilster79]

Thank you so much i will drop you an email

[Lilster79 in reply to KLPE]

Of course

[Titio in reply to Lilster79]

Thanks Lilster79, which kind of lesion in the brain she had? And now, she can write and read? It's so confused this sickness, and we have not information, its hard to understand Thanks for your help

[Lilster79]

Hi, the mri showed lesions on the left side of the temporal lobe. She can read and write but she is behind her peers. Having said that she is getting better all this time. It is a horrible illness and it can feel very isolating as it is so rare which is why this forum is good. She has a very good memory for some things but reading is just hard for her.

[Titio in reply to Lilster79]

Ok i unserstand. I suppose that lots of things will be known later. Whan you have this illness at the age of 2 years its difficult to know what will happen. Yes it's rare, that is incredible.

Very glad to know that your daughter is better now