Absent seizures and disability

Amanda - posted on 10/10/2010 ( 30 moms have responded )

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I have been recommended by numerous people to apply for disability for my son. He has absent seizures and migraine issues. Having so many appointments with him is starting to hit the bank account hard. Has anyone decided to apply for this type of disorder?? If so, what had you decide to apply and what did social security say when you applied?

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Christine - posted on 10/15/2010

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I tried it for my daughter, she has absence seizures, and I was denied because they said her limitations were not severe enough. I am going to try again because she started having tonic clonic seizures now.... Good luck

Shawn - posted on 10/23/2010

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I have applied for disability when my seizures became so problematic that I needed to stop working until they sorted my meds out. Your son will need to have paperwork filled out by a doctor. I am not sure where you are living but each state/province may have different requirements. You will need to find out for the type of funding you are asking for. I applied through my work benefits once and EI before but I know in Canada you can get benefits through CPP.

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Amaki - posted on 12/11/2012

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my son is 4 months old with seizures i apply for disability in nov.2012 hope they approve him

Amaki - posted on 12/11/2012

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my son is 4 months old he had 5 seizures lasting 5 mins i apply for disabilility in nov 2012 hope he get approved

Mary - posted on 07/30/2012

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my 2 year old has had seizures. do to hight temp.. can she get ssi for this.....i know i have seizures. to and i get ssd from my dad if she get's it will it come off my dads ssd

[deleted account]

I am on SSI because I am disabled do to seizures. Fill out an application at the nearest social security office. They will want the basic information proof of address, ID, etc. They will also need a note from the physician assisting your son. It may take a month or two before being approved, but if approved your pay begins on the day you applied! GOOD LUCK!
): o ) Beth

Brittanie - posted on 11/07/2010

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my daughter has Infantile spasms (x2), interactable epilpesy, devolmental delay and a few other problems were still looking in too. when i applyed for her in 09 it took them 6 months to get back to me and they ened up denying her bc she dint meet the right standerds i have had many ppl including the person working her case that told me reapply. they look in to tons of diffrent thing like how it affects your life and so forth every state is diffrent, i dont see the harm in trying to apply it usally is a long wait tho!

Amber - posted on 11/05/2010

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My son has absent seizures and autism. I applied back in January and was approved about 2 months later (never denied just took a little while to process) I sent all his medical records from birth to the day i applied ($22 in postage and i'm guessing they didn't read them all) but when he was approved we got a check with back payment from the date we applied.A lot of paper work but well worth it.

Lisa - posted on 10/27/2010

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i guess you have had a EEG. My son was in hospital (uncontrolled fits) when i applied for his DLA

Melissa - posted on 10/26/2010

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I AM APPLYING FOR DISABILITY FOR MYSELF I HAVE HAD THEM ALL MY LIFE AND BECAUSE NOTHING IS SHOWING UP ON THE EEG THEY KEEP TELLING ME THEY ARE NOT SEIZURES. BUT YET STILL THEY HAVE ME ON 2500 MG OF SEIZURE MEDICINE A DAY. I AM NOW 40 YEARS OLD AND THIS IS NOT GETTING ANY BETTER IT IS GETTING WORSE. SO IF YOU KNOW WHAT YOU ARE DEALING WITH IT WOULD NOT HURT TO TRY AND APPLY. THEY MAY DENY YOU AT FIRST BUT KEEP TRYING IT WILL HELP YOU IN THE LONG RUN.

Lori - posted on 10/25/2010

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There is a program thru Medicaid that helps pay for medical expenses... its called Children's Special Health care Services. Ask your son's doctor for the info. Most of them have it. Otherwise contact your local health department, they have it. It helps!!! My daughter has Absent Seizures and she receives disability. Its not that hard of a process to apply. Good Luck!

Inez - posted on 10/22/2010

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Amanda, I have a daughter who was diagnosed with having Atypical Petit Mal Seizures (meaning she is border line epileptic) a few months ago. And I feel you when you say that it has become very expensive to try to treat her condition. The answer to your question is, Yes, you should try to get any type of help that you can from the government. I applied for disability for my daughter. The only thing you need to prepare yourself for in doing so, is being rejected the first time. After Social Security denied my daughter benefits, I decided to have a lawyer handle her case. We are now in the process of going before a judge to determine the outcome. I hope this helps.

Brandi - posted on 10/21/2010

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i myself have been wondering about getting some kind of financial help for missing so much work over my sons epilepsy. i have a son Logan who is 2 1/2 yrs old and started his terrible ordeal at about 1 yr old with his first febrile seizure , he had like 2 more (one about every 3-6 months) every time we took him to the hospital where they poked and prodded only to determine that he has some random viral infection that there was no side effects of other than the fever. Then about 4 months ago he started having seizures with NO fever and it has been a nightmare eversince. he was admitted to the hospital for eval. and sent home. then a week later he started having them again so i got an appointment for that day and finally while he was in the dr.'s office he had one that they saw (i guess if they don't actually SEE them have one that YOU are making it all up or couldn't possibly know what a seizure looks like)so that was our first trip (by emergency ambulance from jonesboro AR to little rock AR) to arkansas childrens hospital (who by the way i can't possibly say enough good things about) while we were there he had 16 seizures in 24 hrs. they put him on Keppra and sent us home after 4 days . everything seemed fine for about a week and then he started having them again so we went to our local hospital again where they stuck him with needles like 11 times trying to get an IV (because no one would listen when i tell them he is a big 2 yrs and you are gonna need 5 people to hold him so he jerks out of them every time) well they load him up with adivan (sp?) and after much argueing between the er on call doc and his pcp doc they sent us home , we made it just outside the er waiting room doors and he had another one so we went back in and they had to REDO his IV (which the nurses were livid about and said that the pcp doc should be made to come back and do himself for letting us go) so he gets admitted again and the next day we take another emergency ambulance trip to ACH in little rock where we spend 6 days this time and he had so many seizures i lost count (over 30 in 2 days) so they trippled his Kepprato 6 mil's twice daily and put him on 75 mg of Topomax twice daily(which i have since had to call and have increased to 100mg )he had since not had any seizures in 2 1/2 weeks but every time he wakes up from sleeping he does this thing for like an hour where every 2-3 min he kinda rolls his eyes almost falls down and (almost has a seizure but never does ) . sorry my story was soooo long i am just curious if anyone has any advice or a similar story that could give me some useful hints. also between his Keppra ($197.00 /month) his Topomax ($450.00/month) and his Diastat ($396.00 for 2 doses) if i didn't have medicaid there is no way i would be able to afford his meds its crazy expensive. also on top of everything else my work has not been understanding AT ALL and has even went so far as to cut my hours to i guess punish me for having a sick kid and the manager said to me one day (after i walked in{the day after being in LR for 6 days} i waved to her and she just shook her head at me so a few minutes later i was trying to i guess make peace so i jokingly said to he "Jackie do you have any idea how unbelieveably expensive it is to sit in a hospital for a week?" to which her only reply was "do you have any idea how shorthanded we have been this week?" and the only thing i can think of to do was to video one of logans seizures and the next time she gives me a hard time about it i am gonna make her watch it and tell her "now that you have seen one the next time you want to be a b%^*h about this maybe you could try having some compassion cause this is what i have been dealing with for the past 4 months. THANKS FOR READING and again sorry i was so long winded.

Michelle - posted on 10/20/2010

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My son has seizures and we applied for ssi and we receive it but just to let you know they go by your income.

Liza - posted on 10/14/2010

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Please apply on line first, this will lessen your wait time in the actual office. You should get approved just make sure you include all of his medical information, doctors and their contact information. They just want to confirm his diagnosis. The medication is like whoaa!!!! I couldn't afford it if she didn't have medicaid. Her diastat (valium) cost $780+ for two vials!!! Please apply.

Deedee - posted on 10/13/2010

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I also have applied and was told it was based on income. We were not able to get any of the services that comes with SSI.

Tammy - posted on 10/13/2010

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Social Security Disability (when I applied for my daughter) is really determined by assets and income of family as well as the child's diagnosis. Even when we had two junky old cars and very low (below federal poverty level) income she did not quality. I was told Epilepsy was not considered a disability, although I find that hard to believe.

Amanda - posted on 10/13/2010

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My office is too small and does not qualify for FMLA. I asked. I am going to start talking with neuro about papers to turn in for disability. The least I can do is apply. They can always say no.

Nicole - posted on 10/13/2010

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My son is 5 with myloclonic epilepsy and on Depokote since he was 2. He is now 5 and on Lamictal. I have been home schooling him and noticing a possible learning disability. Does anybody know about that? I am glad to see the info about SSI disability. Is any of that gonna hurt him for the future?

Leslie - posted on 10/13/2010

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FMLA or the Family Leave Act go to your human resource person at your place of employment and they will be able to give you the paper work you will need to fill out.Make sure you ask when you turn them back in what their policy is on approval. Will they contact you or do you need to check back with them ect. Best of luck

Gina - posted on 10/13/2010

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check into something with your work as well about the time you have missed. my sister went thru and i cant remember what its called, sorry, but it helped her with the time off. her son has asthma real bad and she had to take off alot for work. i wish i could remember the name of it....if i remember i will let u know

Jo Ann - posted on 10/13/2010

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My son has seizures, Agenesis of the Corpus Callosum, Dandy-Walker Variant and Pierre Robin. I looked into getting him disability but was informed that disability is based on your family income. Although my son has a disability, he won't be entitled to funds until he turns 18.

[deleted account]

Our medicaid in NH has a transportation program so I just have to have the doctor sign a form each time and we get reimbursed for the costs of driving G to her appointments. There's also a program in NH to reimburse us for the costs of our primary insurance - it's called HIPP in NH. look into that too! :)

Beth - posted on 10/12/2010

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yea i know how it is about gas and appts.some of my sons specialist dr's are like an hr and half from where we live. i hate the long drives but the drs are good. my son currently takes zonegran but hes close to the max dose on that and we will trying the depacote next. hes had a few new seizures that we dont have a diagnoses yet. his dr wants us to get it on video so he can figure out what it is. well i hope you have good luck with the disability

Amanda - posted on 10/12/2010

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So far, he is on depacoat, abilify, guanfacine, and a new migraine medicine. I forget the name. He has medicaid now. So, meds are free. But the appts and time off work are what is killng my pocketbook. Gas is expensive when you are all over town.

Leslie - posted on 10/11/2010

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Chances are when you apply for disability you will get approved for the medicaid part before you are approved for the check. You can do almost everything online now. So as far as driving and having appointments with ss office you can do most all by phone. Good luck it should be fine.

Beth - posted on 10/11/2010

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if you get approved for the disability the medicaid that comes with it should pay for all his medicines too. i know they can be expensive. i have seen the prices on my sons medications and if i had to pay it out of pocket every month i know i would be in serious debt. what medications is your son currently on?

Amanda - posted on 10/11/2010

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Thanks Beth.... I am just glad to hear it has worked for someone before I go waste time trying to get it. I am ok withmedical expenses but the gas for all the appointments and coverage for medicines not covered gets hard on my budget at times. I have had to put some bills on hold for his medicines and that scares me. I am not one to pay bills late if I can help it. But his medical comes first.

Beth - posted on 10/10/2010

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i applied for my son who has infantile spasms and another type of seizure we dont know what kind it is yet. it took them about 6 months but they approved him for SSI disability. you just have to have proof from the doctors of your sons medical conditions and contact information for them. i was told by many people that he would probably get denied a few times before they approved him but they didnt deny him not once. you just have to fill out alot of paper work. and with the SSI i've been told the medicaid is a little different than the other medicaids that have CMO"s and its easier to get any tests or procedures approved. hope this has helped some.

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