Seuizer

Thu, 05/21/2020 - 12:04
Seuizer Triggered Age: 2 years 4 months started with finger flicking and eye ball focused on one side. After a month 1 grand mal onset happened brought the baby to conscious after intervention at hospital. After 5 months of not very bad condition suddenly he developed right side weakness and seuizer with Epilepsy partial continuea. then the case was very sever that he was admitted in hospital and IVIG therapy was given as doctor told the issue is type of brain inflammation called as Rasmussen Encephalitis. Atrophy was seen in MRI scan. No change for next 4 month. Slowly improvement was seen but seuizers continued. Temor in right hand was felt for 8 months. He is in poly therapy drug, 1. Carbamazapine 2. Pednosoline 3. Clobazam 4. levera Since the seuizer continued Medicine was changed to, 1. Carbamazapine 2. Pednosoline 3. Clobazam 4. levera 5. Lamotrigine Seuizer Continued,Carbamazapine 2. Pednosoline 3. Clobazam 4. levera 5. Lamotrigine 6. Sodium Valporate Dose are adjusted and we are planning to eliminate Carmabazapine as the baby is having drop attacks. Now the doctor were telling it might not be rasmussen encephalities as it the date prognosis could have been very bad. Still no improvement in verbal communication. Right side weakness and no movement of hand, hardly take few steps. Now my child is 3 years and 10 months. I am really worried what is it, why i dont have any medical answer to manage? I have kept him in Keto diet which is somehow beneficial for forceful vomiting and steady lazy body and weight management in pednosoline. If any one suffering from similar case please lets have conversation and make our life beautiful together. Mother is a child from developing country Kathmandu, Nepal.

Comments

Hi,Thank you for posting, it

Submitted by Anonymous on Fri, 2020-05-22 - 10:04
Hi,Thank you for posting, it sounds like you all have been through a lot. It’s important that you’re continuing to express your concerns with son’s healthcare team, (that you’re comfortable with), who can help determine what individual treatment plan is best for him. If you feel you cannot talk openly with his doctors or that you all aren’t working towards the same goals, it may be time to get a second opinion. https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions . If you have not already you may want to consider having your son see an epileptologist (epilepsy specialist), who can provide more specialized care for his epilepsy. For help finding a specialist near you and for additional resources in your country please visit: https://www.ibe-epilepsy.org/about/ibe-chapters/south-east-asia/. Additionally, you may want to consider keeping a journal or a diary to help keep track of his seizures, medications, and other therapies by using a diary or a journal. My Seizure Diary, can be used to organize his health issues, record medication side effects, develop seizure response plans, and more, which can be share with his healthcare team: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary . It’s common for those who are in caregiver role to feel overwhelmed. It’s important to remember that you are not alone, and that you’re taking care of yourself and making your health and overall well-being a priority. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdf. It may also be helpful to connect with other parents who may have similar experiences, to ask questions, find & give support to each other, by visiting: https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents 

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