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mir
by hkjordaan, Jan 25, 2008 11:59AM
jade had a MIR yesterday and all was alright. saw the scan today and feel a bit worried. they will be doing a EEG n wednesday. theyo say they are then going to change her meds. i worried, the scan she had at age 1 did not look to bad. this one not so good. i am no doctor, and cant read it bt js have this feeling. can the brain get worse?
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You are right in thinking that the brain can get worse over period of time if not taken care of resulting in abnormal changes on EEG.
Your son's EEG report which was normal earlier does not necessarily mean that it would be normal now.
I assume you are getting EEG report for your son due to seizure episodes.
Are you getting a 24- hr Video EEG done which is the gold standard to recognize seizure activity in pediatric age group.
Keep me informed regarding the EEG report.
Bye.
I am not sure as to what is the clinical state of your child, but your description suggests that the poor soul is suffering.
Which place do you belong to?
It is always necessary to do 24- hour EEG to pick up those subtle seizures which are common in infants and children.
There is also concern regarding giving sedative and doing EEG as the readings on EEG could be masked by sedatives.
I appreciate your idea of taking the previous scan and discussing the entire pathology with the doctors. I would suggests that you should be taking the previous EEG study, his previous inpatient or outpatient file with you.
Hope for the best and always be positive in spite of being in critical condition.
Keep me informed if you have any queries.
Bye.
I know what you mean with the 24 hour EEG, I fought long and hard for one but to absolutely no avail. It's apparently only standard in children that are candidates for brain surgery (to remove the part that fires??) I suppose it is a medical aid thing since you need special authorisation for it. Keep up your strength, don't give up hope. I think if I could have 1cent for every time we were convinced this was his end, I would be pretty rich by now! They are more resilient than we think. About the screaming thing, midwifemom has suggested that it could be GI problems. It makes a lot of sense and I have found that when Nathan hasn't had a bowel movement yet that day, the screaming is worse. But then I was also told it was purely neurological irritation. I don't know. At least I am sleeping now for the first time in ages. Viva Melatonin.
I wish I could console you. Just make a list of questions first before you go see the doctors. It helps so you don't forget the things you really wanted to know, because the wind were taken out my sails so often that I started crying before they finished their story! Keep me posted, I would like to know what this all means?
The melatonin works after the third night. You give it to her at the time you want her to go to sleep (not too early otherwise she won't sleep through). Start with 1/2 tablet ( The tabs we got are 3mg from Dischem) for two nights and on the third night a full tablet. I crush it and mix with a bit of water because he has a feeding tube. And... he is sleeping. Apparently it is classed as a feeding supplement so that makes me happy - don't like these drugs I have to give him.
We do have birthday parties for Nathan. His first birthday he was home for the first time in six months and was still weak after being drugged, sick and what not. So we had a family party. I baked a cake and had a candle and the other kids sang happy birthday. We made a huge fuss of him.
For his second birthday, we invited two friends. One is a little gril with some seizure disorder (teriibly sad story, she has about 30 drop-attacks a day and she is 5 now. Still haven't found a drug or combination that works. Her parents are going to try the ketogenic diet now) and she adores Nathan (She walks around with a photograph of him all day long!), and one of his brother's (7 yr) friends who love him to bits. We had balloons, party hats the works and I baked a huge chocolate cake. We gave Nathan icing sugar to lick and played his favourite CD and danced with him. He thoroughly enjoyed himself.
As gift, I usually get him a new CD (stuff like mother goose, or humpty dumpty, he even loves Il Divo) and dancing teddy bears. (You know those that you put batteries in and it sings a song and dances when you squeeze it??!) We also tell friends who want to buy him gifts to stick to soft, noisy toys that you can hang up in front of him or place on his table of his chair. This way, we don't get gifts like stacking rings!!!
Have a party, a huge celebration of another year granted with Jade. Nathan wasn't "supposed" to live until his first birthday, but hey, we are coming up to nr 3 now and every year we celebrate the blessing of still having him around.
When is her birthday??