Hi, I have a 2 1/2 year old son with severe brain damage following a hypoxic injury when he was almost 5 months old. He has been for numerous tests, treatments etc in the beginning and was on more anti-seizure medications than I could care to remember. He suffered frequent aspiration pneumonias and was finally fitted with a feeding button. He has been weaned of most of his anti-seizures meds (apart from one) and has been out of hospitals for a year now. We care for him at home. He gets PT but despite our best efforts, still hasn't regained head control. Apart from some movement in his arms, he is mostly paralised. He is extremely floppy and has spinal deformities already. Anyway, long story short... He is a social kid and laughs and babbles in baby language and smiles often. He is however very moody and moans and complains about something most of the time. He also hardly sleeps. Any advice (drug therapies for sleeping is currently only Chloral Hydrate which occasionally works) will be appreciated. Sleep is a problem as well as his irratibility.
I am sorry that your child has to go through all this.
I would like to know what that one medicine he is continued for seizure is. Is it phenobarbitone? If yes, I think that needs to be stopped as this causes hyperactivity in child.
As for his sleep you can use Trichlofos, it’s given orally and it’s available easily.
I am not sure whether you would get it without doctor’s prescription.
I would be interested to know about your child's disease progression and treatments.
Thank you for taking the time to reply to my question. The only anti-convulsant he takes now is Sodium Valproate (Epilim) 5ml three times daily. He hasn't had a seizure since February. He was on phenobarbital early on in this whole ordeal but it was weaned shortly after it was started ( He was on a 90mg dose and was nearly comatose!!!) I put up a fuss and it was changed to Epilim, later added Lamicten and Sabril. It seems as his brain started to "settle" the seizures subsided. I will ask for a prescription from our GP and give it a try. Please hold thumbs, I haven't slept in weeks (Starting to see spiders )!!
Maybe you could try benedryl which is also an antihistamine. We have a medication (for colds) here called Dimetapp. It really snows my other kids, but I would check with the physician first. Is there anyone that can come over and give you a break so you can get some sleep?? It sounds like you need some support and down time for you. Do you belong to a church that could ask for volunteers? Where do you live in South Africa? Is Rustenberg close to you? Is there any respite care services there? Any family members that could assist you? Good luck. You are in my thoughts...
Yes we do have Dimetapp. I will suggest that to his paediatrician (dosages etc.) I work fulltime and he has a nanny that looks after him in the day. Nightimes however, he is my problem. No, that sounds terrible. The problem with volunteers is that because Nathan gets seizures and has a feeding tube due to the fact that he cannot swallow and the fact that he also can't swallow his spit and phlegm, makes him a bit difficult to look after. He regularly require suction and nebulising and off course the bowel movement issue!. You don'n need to be a rocket scientist to feed him, butit does take some practise to get it right. Very few people offer a second time to look after him and frankly, I don't blame them. My mother-in-law runs away at the sound if his cries so no help there and my own mother cannot deal with the emotion that goes with it. I have approached the Hospice to ask if I could train there staff in caring for him and I am awaiting their decision. Problem there is a staff shortage and respite care are priviledged to those actually dying! Anyway, thanks for the advice. I have sent an email to our paediatrician and will let you know if it works. I live in Cape Town and Rustenburg is about 1400km from here.
hi thoght i had problems. do yo see doctor shlegel in cape town. i live in sedgefield and i have a 4 year old that is cerebral palsy in 4 limbs, and has started with fits in her sleep. now she is screaming when she is not asleep. love to talk to yo more. greeting from the s/cape
Yes, she was amongst the doctors we saw. We are not with her anymore though. I am sorry to hear about your daughter. The seizures are terrible I know. The sad thing is that you get used to them after a while and it seems just another normal activity! It has now been two years since my son actually slept at night and stimulation is difficult during the day because something is forever bothering him. His good times do make up for the bad ones and he makes my heart melt the minute he flashes me a smile. Anyway, it helps to know that there are other people also living this way!
Saw on the post you are sleeping!!! YEAH!! Hope you and nathan are well. Grant is hainging in there. We go to a specialized CP clinic next week. I am in counseling and trying to cope with the diagnosis, it has been almost 6 weeks since the final verdict! I guess it is getting easier. I have learned, Life goes on....... Michele
I saw that you said when your son was on phenobarbital he was on 90mg at the age of two and he seemed comatose? I have two daughters with CP and not once was any of my kids on 90mg. That is just way too much, there both on 20mg and my oldest is almost 4yrs. My youngest daughter also has a G-tub and is on many medication, she is about to have her third surgery (hip surgery) and we just found out today that she has sleep apnea and she is only 2 1/2. So I know what you are going through times two, but you know what it does not matter cause they are my girls and I love them to death. It's like you said you don't have any one to help you take care of him, so think about it this way when those days get too hard, if I don't do it who is? Remember your not the only one going through this. And I know your son you said is not sleeping, I know you tried a lot of different medication but how about you try some soft bedtime music ( MY KIDS LOVE IT), a bath before bedtime (or just a wash up) with lavender sent, and a teady bear to hold (another favorite of my kids). Those are just some things you can try if you haven't already. Good Luck
I love my son to bits. And yes, I still have a prescription for Phenobarbital 90mg nocte - never filled it out a second time. His lung problems started there. Aspiration pneumonias from trying to feed him while comatose. He was on the phenobarb at the age of 6 months, shortly after the incident when seizures just started.
I have bedtime routine (warm bath, supper, hugs and cuddles, story time, baby einstein CD and his blanket) withou this he doesn' t even sleep the three hours he does. I realise I am not the only one going through this. It is just very difficult having to cope with Nathan, a full time job, two well kiddos and their school activities, housework, suppers, laundry etc when only sleeping the bare minimum.
thanks for the reply and the input, I take my hat off to you for doing this times two.
I am sorry if I came off a little strong, I NEVER EVER wanted to make you feel any less of a mom because I have two girls with CP. I know it's hard, it's hard for all of us and we need to be there for each other to keep each other SANE. Again please forgive me for any misunderstanding.
No offence taken. sorry for the delay in response, we had a sleep study done and I was "offline" for a few days. Yip, hard is putting it mildly sometimes and I still take my hat off to you for raising to differently abled kiddos. Good luck to you too!
Hi i have read the stories posted and i would like to ask advice. I gave birth in 2009 to a beautiful boy, the only thing is he was diagnosed with servere HIE. He was in ICU for 2-3 weeks and wsa on very good medications. He had the fits only but for a day and was on phenabarb for that period. He spent three months in Hopital and after he was released things seemed fine. His growth then was a bit slow but now that he is eating cereal and drinking he is gaining everyweek with out throwing up. What i am curious about is, is there a problem with my kid still cause what he does now is he lifts his head when lying on his tummy, he sits with support, he grips whatever he sees, tries to keep his bottle with his feet and hands. has no more relux, very alert, he isnt stiff or floppy but he drools alot and doesnt smile as yet. please advise my email address is gaironesa.***@****
my 4 month old son is in the hospital right now with hypoxic brain injury they say he will never walk or talk and me and his father are having a hard time making the decision wether to pull the plug or have his trak and g tube put in and take him home they act like it is so hard to take care of children in his position i was just wondering if it really is so bad we have a 5 year old and a 2 year old as well i guess the queston i was wanting to ask is if you could go back in time would you have made the same decision if you was faced with it again. please get back with me as soon as possible. thankyou so much...
Hi. Most children with cerebral palsy develop sleeping disorders due to seizures or tremors at rest, painful movements while tossing and turning complicated by stiff joints and muscle pains, anxiety, and wrong sleeping schedules (e.g. no afternoon naps, late morning waking hours and late sleeping time). Physical and behavioral therapies, and medications (e.g. mild sedatives, melatonin, antihistamines or anticonvulsants if with seizure episodes) may help address sleeping problems and irritability brought about by his condition. However, it is important that you always ask your doctor’s opinion before trying any drug or regimen for sedation. Hope this helps.
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