Need advise for 2 year old with Epilepsy
Posted , 4 users are following.
Hi I'm looking for some advise. My 2 year old son was diagnosed with Epilepsy back in December. Since then our Consultant has put him on several medications and nothing seems to be working, in fact I think the seizures are getting worse. He's currently on 500mg of Eplim, 5ml or Zarontin and 1 frisium tablet in the morning and 1 at night. Some of the medications have driven him mad and I'm getting worried it could effect him in the long term.
The doctors and consultants are saying not to worry about this at the moment but I'm not to sure. His developmental skills were fine until he was diagnosed. Since then i feel his hasn't progressed anything further. He is 27months already and still cannot say Mam, he can say a few words but nothing that stands out.
they keep saying they have seen this hunrdeds of times before, if so why is it taking so long to get the right medication.
i keep thinking am I being told the truth. Both myself and my wife are very worried for the long term effects it will have on our little man.
your advise on this is great greatly appreciated, anything at all.
1 like, 9 replies
ianDerby declan67117
Posted
Really sorry to hear about your lads problems mate. Must be very hard. I suffer seizures myself, recently diagnosed. I've avoided the meds as I've seen people in a right state because of them. I'm trying to control mine using cannabis and an attempt at what's known as a ketogenic diet.
If you search for "Charlottes Web" , there's a kid in the US who was having multiple seizures a day and someone developed a cannabis that doesn't get people high but has other oils and chemicals in which they gave her and stopped her seizures almost completely. Don't know your circumstances, but there are places in other countries where people are having success with alternative therapies like this.
The ketogenic diet is a low carb high fat diet that they give to kids as some sort of milkshake type thing. The lack of carbs makes the body use fat for energy and this produces chemicals that can reduce seizures.
Hope the little fellas OK.
Ian
Emis Moderator comment: I've added a couple of links below re the ketogenic diet and epilepsy if it helps.
http://www.epilepsysociety.org.uk/ketogenic-diet#.VO2pI_msV7w
http://en.wikipedia.org/wiki/Ketogenic_diet
declan67117 ianDerby
Posted
yea also heard about the cannabis testing in the US also.
thanks for the advise anyway.
Dec
Winnie143 declan67117
Posted
I have had epilepsy since 14 now an OAP !! lol
Seriously your son, all I can say my sister had 3 boys 2 had epilepsy. It is scary to see them like this and you must worry. But all my sisters boys grew out of theirs.
The youngest was the one who was on stronger medication and he was the quiet one. Ask Docs if they would put their loved ones on the drugs your son is on. I wish you well and speak about your fears for your son. Good Luck to you All
Win x
declan67117 Winnie143
Posted
i hope ope your doing ok and not suffering to much with it. The Docs keep saying that he should go out of it, which is always good to hear but at times I look at him and feel he's going backwards and not forwards.
yea I must ask the docs next time I'm in there.
thanks again for the advise.
Dec
Winnie143 declan67117
Posted
I can hear people when I have a seizure, can your son?
All you can do is show him he is okay, take a pillow in case and always lay him on his side and if he has a temperature get cold cloth (cold and wet his sweat points ie forhead, neck arms and fan him)
He will be okay I wish you all well xx
declan67117 Winnie143
Posted
Dylan is 2 years and 4 months old. He hasn't started talking yet, and this is what sort of started us to get concerned about him.
He has an older brother Seán, who was born at 29 weeks (2ibs 11ounces) and spent 10 weeks in hospital, the Docs said he would be well behind in his developmental skills, but he hasn't he's so far advanced it's scary. He's 4 in May and he's like a little old man. He was able to put sentences together at 18months.
We sort of based Dylan's development around Seán and though he would be the same. Then after 24months we got a bit worried that he wasn't talking. Everyone was saying he would be grand and not to worry, then in December he had his 1st seizure.
He is averaging about 30 seizures a day at the moment, lasting 2 - 3 mins, the medical team are saying it's gone from Focal Epilepsy to multi focal.
steve1951 declan67117
Posted
I’m sorry for your son and what he is going through. The cannabis med. ianDerby mentions is in experimental stages in Colorado, where pot is legal, and being developed by GW Pharmaceuticals, a British company. The drug is called Epidiolex and it is a liquid. It is a pharmaceutical grade cannabis consisting of chemical CBD (98%), the non-high compound of cannabis and less than %1 of the high compound THC, which is too low to have any effects of getting high. It’s in a limited experimental stage mainly on children with a serve form of epilepsy known as Dravet Syndrome, a rare and severe syndrome of infantile-onset, genetic, drug-resistant epilepsy. Epidiolex was made famous by the news coverage of a girl name Charlotte with Dravet Syndrome. The special strain of marijuana used to make Epidiolex became known as Charlotte’s Web. Charlotte was 5 years old and undergoing up to 300 grand mal seizures a week. Epidiolex brought it down to once a week. But in another similar case, it wasn’t effective. I don’t know if other studies will follow with meds. varying in concentrations of CBD and THC. I don’t know if Epidiolex trials are being done in the U.K. In the U.S., marijuana is still listed as a schedule I drug along with LSD and heroin so government interference has vastly hindered marijuana research.
The study groups taking Epidiolex are limited in number and being tested only on people 18 and younger. I don’t know why. I’m 63 and would like to be part of the study group. Right now my seizures are under control by two meds. Levetiracetam and Lamictal. For me, they cause insomnia and depression, so I take another med, Mirtazapine, an antidepressant and for sleep with more undesirable side effects.
I can find liquid marijuana on line in CA, where I live, and medical marijuana is legal with a note from a Dr. But the highest concentration I can find on the web is 35% CBD (liquid) and it is not listed as pharmaceutical grade. It also doesn’t list the amount of THC. I’m not interest on getting high. I have an appointment with my neurologist next month and will ask him about it. A few years ago before medical marijuana was studied as a med., I asked my Dr. about smoking it (high concentration of THC, little or no CBD ). He didn’t think it helped. I have an appointment next month and I’ll bring the subject up again with the increasing news of med marijuana but I don’t expect him to change his view.
Sorry I can’t directly comment on your son and the meds he is taking. I’ve been on so many meds over the years. Some have worked for a while before switching to another med. Some of them had side effects I couldn’t deal with so I’ve changed to another med. Your son is too young to tell you what he’s going through. So you can only tell your Dr. what you observe and see if the effects dissipate over time. Time may be a factor. The dosage may be changed? One of my meds had to be increased last year. I would rather have increased the dose of the other med, but I’m already 100 mg over the recommend limit.
ianDerby and the moderator also mention the ketogenic diet which has been beneficial for some. I’ve never tried it but may be worth looking into. It seems to have worked for others.
I wish your son the best. Take care.
Steve
Winnie143 declan67117
Posted
You must be sick with worry, have they looked at foods as Ian has mentioned?
Good luck to All
Win xx
suku declan67117
Posted
The doctors are telling you the TRUTH. Yes he will be slow in progressing than other kids, he may have learning difficulties (I do) . Otherwise he will be a healthy boy. Don't let his health come in way of him having a normal life.
My parents cocooned me. When I got married and my husband allowed me to spread wings they realized their mistake. Today I work for sainsburys and have done for 14 years.
I am a pharmacist counter assistant and soon to go on a dispensing course. So see your son will achieve higher heights and make you proud you will see ark my words.