Child Seizure Support Needed, 2.5 Year Old Boy, Newly Diagnosed, Please Help.

medication for several different conditions is often trial and error, especially epilepsy. You will have to be patient and the medication will likely have to be adjusted several times. Certainly seek a second opinion, but most doctors will tell you it is an adjustment period.

My bf's 2.5 year old also has frontal lobe complex partial seizures. She was diagnosed a year ago. They have been working with CHOP. She started on keppra, the brought her up to the max dose & still had seizures. She is now on a different medicine (i don't remember the name) she also has 2 different back up meds for when she has siezures (one is diastat, I don't remember the other). She still has occassional seizures the are doing more tests now to figure out what to do next. She is not yet to the max dose of the new med.
Unfortunately, its all trial & error. As to side effects, they haven' done any testing on children under 4 on any of the meds, so no one knows for certain what side effects little kids will have. I know its frustrating, hang in there. As for diet changes, there is a carb free diet run by Johns Hopkins, BUT it is very difficult. It has terrible side effects (like possible organ failure) and a VERY low success rate for partial complex seizures (it works better for other kinds of seizures).
One more thing... my friend is now going thru a divorce. They were struggling before the diagnosis, but after it the threw all of their energy into their daughter & stopped working on themselves. Make sure you & your hubby take time to still date each other. It is so important! Also, make sure you each get some "me" time. If you are refreshed & happy & destressed you will be much better able to handle anything that comes your way.
Finally, I strongly believe in second opinions, go get one. It can not hurt.

I don't know if this will help A., my husband has seizures grandma ones they are a form of epilesy. He takes the tegretolXR. Until the Docs can figure out what works best for your little boy you have to be patient, I know when someone has a seizure right in front of you you feel so helpless. I try to hold them so they won't hit their head and it has to pass and it will. Their body is totally exhausted after that. Having seizures will not effect your little guy as he grows once his meds are in order he will live a normal life, he should anyways, let him be active let him run, he'll be okay and so will you. Good luck with baby # 2 and stay strong and positive. MichelleC

Dear A. p.

I read your request and my heart goes to you and your family. As a mom i know it's difficulty to see our children go through difficulties. May i as a mom engourage you and your husband to seek our heavenly's father's help through his promises that he has for you in his word. He wants to walk with you through this journey.

May i also encourage you if you are not a member already to bathe yourself on a devotional that i get daily it is called the proverbs 31 ministries you will be bless by mothers who will come along side of you and pray and encourage you as well.

I will be praying for you and your family as well.
In his love a sister in christ, C.

I feel for you and your family. It is tough to see someone you love, so young, go through something like this. There is hope. It can take some time though, so be patient. Switch doctors if you feel they are not giving you answers to all your questions.

My son started having seizures when he was one year old. For us, he kept having them everytime he was sick so they were classifying him as having complex febrile seizures. They were complex because he stopped breathing when he had them. He was having mild ones at home every half hour or so, so we took him to CHOP where, thank god, he had a severe one and stopped breathing for 12 minutes which seemed like an eternity. After that they prescribed me diastat (Rectal valium) to use in cases that he that he did not come back on his one after 4-5 minutes! I have ahd to use it too!

Anyway he started having seizures when he was 2 without being sick and now he is classified as epileptic-complex partial seizures. My mom is also epileptic but she has gran mal seizures. She takes tegretol. It took time to find the right medicine and dosage but she has been seizure free for 25 years. Her only complaint with tegretol is the foggy memory! My son has damage to the left temporal lobe. Through testing they found he has damage there and his left side is smaller than the right. He had a traumatic delivery at birth and they found that he had a mild stroke at birth. HE had several EEG's and differnt types and his activity was always normal. They tell me he could have a learning disabilty or speech problems. So far he has never been behind so maybe I will fall into the 1% for something good!!

I did not want my son on a medicine that the levels needed to be checked regularly. They first placed him on Trileptal but was removed due to speech problems. He was stuttering horribly and really struggling to get words out. He was removed from that med and in the process of getting him on his full dosage of Keppra he had 2 more seizures. He was on Keppra for 4 months. The problem with this med was that it made him aggressive and restless. He mood change was 360 degrees. We tried adding B6 along with the Keppra because that can in some cases counteract the aggressiveness. After four months we decided to try another med, Lamictal. This med took 3 months to get to his full dosage twice a day. Then we weaned him from the Keppra to help him not have anymore seizures. This worked. No seizures and my sons temperment was BACK!!!!!! We see minimal side effects! He has been SEIZURE FREE for 11MONTHS !!! YEAH!!!! With all of the meds his was on he never had to have levels checked which was great! He will be four at the end of next month and if you were to see him, you would never know that anything was wrong with him. He is in preschool 5 days a week and is on track with all the other kids. I also know this because he is a twin and him and his sister are developing the same. He does have a lot of energy and am told that their brains are always going!!!! Once he gets waund up it is hard to get him to calm down. The school knows to pull him aside and give him an activity to work on ex. coloring, puzzle to stop him from running. It has worked. The key is communictaion!

If he needs help when he is in school I will get him help. You just need to be your sons advocate and question EVERYTHING. There are a million drugs out there and you know your son. Trust your gut and if you feel the drug is not right for him, demand another one. It never can hurt to get a second opinion either. At the end of the day just try your best to do want you can and give him a chance but HE CAN FUNCTION IN THIS WORLD AND BE NORMAL!!! (WHATEVER THAT WORD MEANS)!!! Good luck to you and your family and stay strong for him! I am confident that you will eventually get there.

WHen I was 11 years old I was having partial complex seziures, and the doctor also put me on Tegretol. My mom, like you, was not comfortable with it. She talked with her mother and found that it could be caused by a magnesium deficiency. I started taking magnesium and B-12 and the seizures stopped immediately. After a year or so, I stopped taking the magnesium every day. I am now 34 and have never had another seizure. It's worth a try, and can't harm him the way the meds do! My prayers are with you, A.!

My son also have seizures but thankfully he does not get them frequently. When he was first diagnosed they put him on Keppra. I didn't notice one single side affect from that medicine. I did end up taking him off of it just because he doesn't have seizures that frequently. I along with a doctor at CHOP felt that it was not necessary to medicate right now.

My mother also currently is taking Keppra. I am not 100% certain, but she has not mentioned any side affects.

The only advice that I can give is basically that I think Keppra may be a good alternative. I was told by doctors that it is a newer medicine with fewer side affects. But most medicines for seizures are trial and error. You have to find the one that works and doesn't have side affects that are unbearable. If you think that the side affects are too much, call the doctor right away and tell them. You do not have to keep your child on a medicine that you don't approve of.

I hope that everything works out and that you find the best treatment. You can always go to another doctor. It never hurts to get a 2nd (or 3rd or 4th) opinion.

I don't really have any input, I just wanted to say that I will keep you and your family in my thoughts and prayers! Also, go online if you can (keep in mind sometimes you learn more than you need to know!) on the aap.org (american academy of pediatrics) or something like that and see what you can find!
Good luck and give that baby a kiss from all of us mommies! :)

Hi A.,

Ask your pediatrician for a referral for a second opinion with a pediatric neurologist.

Good luck. D.

Content with trial and error on a suffering child?!?!!!! *insert virtual slap on the doc's face HERE*

Radical idea that just might work: do EXTENSIVE research and investigation on epilepsy, and natural alternatives to these harsh chemical treatments (which actually do more harm than good in the cases of a child, or so far that I've seen, with no variation), and then drop the drugs and approach the problem with an effective but gentle solution, like a gluten free diet, distilled water instead of flouridated/chlorinated water, and juices instead of sugary artifical compound-loaded snacks.
Another radical idea: question what your doctor tells you and go investigate things for yourself before comitting to their counsel. They are only human, and therefore they are fallable. They are not the ones ultimatelty responsible for the life and health of yourself and your progeny, YOU are, and their decisions affect YOU and yours, not them. Their word is not the word of God, they are only there to give you their professional counsel and reccomendations for treatment - YOU are the ultimate decider though, and YOU pay THEM for a SERVICE.

Hi A.,

You should ask your doctor to explain everything from A-Z, or atleast give you some information to read about the pro's & con's. I have find some information on the internet if you are interested.

http://www.epilepsy.com/epilepsy/medicine_use

http://www.webmd.com/drugs/mono-5-CARBAMAZEPINE+-+ORAL.as...

Every person react different to the medicine!! If the medicine they gave him is not working for him they will change it.

Also, it takes a while for your body to get adjusted to the medication. If for some reason his seizure double then phone your doctor. If you do not feel good/happy about your doctor get a second opinion.

Good Luck!

I would recommend that you see DR. Vivian Faircloth. She is in Lemoyne, PA. ###-###-####. She is a pediatric neurologist and she is wonderful. She can explain this to you in a way that you would understand. She is very patient and will take her time with you. Good luck

My infant is also suffering from seizures. Everyone responds differently to medication, there really isn't an alternative to trial and error. Switching doctors like others have suggested will only prolong the process bc you'll have to start over with someone new who doesn't know your child. And LOL to the changing diets post. Bc gluten is causing abnormal activity in his frontal lobe - of course. I hope you guys get it all under control soon.

it must be very frustrating but finding the right balance of medications is really a trial and error process. i'm a pediatric nurse and i can tell you that you start with a dose based on a child's weight and see how it affects him. you then raise or lower dose according. there are also a lot of different drugs. some work better/have less sideeffects but this you also don't know until you try them out. again different things work better for different kids. are you seeing a pediatric neurologist?

Dear A.

I can totally sympathize with you. My daughter started having seizure like activity at 2 months but was not diagnosed until 8 months. Gracie started on kepra and had progressed to try 4 different types of meds to contrl her siezures (myoclonic which stopped right away but then atonic started and were not able to control, I'll explain further down) which we continued to search for what the source of her seizures was as her case was atypical.

Trial and error is unfortunately a part of seizure control. It is so heartbraking to watch your little one struggle on any medication, especially such a mind controlling/altering one. At any med change or increase, Gracie would be fine for the first day, the second would be a bit hazy and dizzy and the 3rd-5th would be really difficult with sleepiness and increased dizziness. Then she would settle in but I started to learn when she was getting to many meds for her little body and I found I had to be her best and only advocate with any concerns over meds. I am shy by nature so I learned that I had to stand up for her and make medical decisions as it seems to be a bit of an art with siezure control. A doctor has recently told us that a 50% decrease in seizures on meds or the ketogenic diet is considered a success in the medical field but not to us parents.

Each child is different and each seizure is different which does make it difficult to get the right med and dosage. Some may work and some may not, causing more siezures. Stay strong, informed and impowered.

Allow your doc to look for a "source" of the seizures too. We saw many speicalists until 2 yrs later when Gracie was diagnosed with a very rare genetic disorder called GLUT1-ds which caused her seizures. She is now on the ketogeinc diet and has not had any seizures for almost 1 year!! Not to say that our struggles are over but atleast we know what we are dealing with and can now treat the source instead of the seizures.

I hope you are able to get things under control for your little one and for your family.

SIncerely
Joanna