MJ update: Epilepsy, autism and spastic diplegia/hemiplegia

[MommytoMJM]

She can't be autitic becasue she's ......... I will SCREAM!!!!!!!!!!! Argh. What part of SPECTRUM do people not understand......ok, sorry, just had to get that out....

 

[goofyandmore]

Don't know if you are interested, but our daughter's MRI's have been done at a pediatric radiology place that just sedates my daughter so she falls asleep which I like better than a general. My daughter was born with brain damage (tiny cysts in white matter) caused from lack of oxygen at birth. We have lots of issues, some very similar to autisim. Lately, we have been having a lot of GI concerns and put her on a fruit, veggie, fish, soup, and whole grain diet. It has seemed to help her all around, cognitively, sleep wise, and GI wise. She has also had a couple of seizures when she was sick. She actually turns blue from not breathing. But Thank God, comes right back to us. It is difficult, but I feel blessed right now that she is healthy and happy. carolyn from NJ

 

[MiaCasa]

Hi, My baby son (19months) was diagnosed with Hemiplegia few months ago, as hard as it has been for me, i finally realise when I accept it, i can take care of him with confidence .

I want to start doing some kind of exercise or something (physio, o/t, splint - all happening) like instructed. MRI still to come, next month - Botox option in October.

I just feel like his a little baby, and this would be the best time to do something alternative... like my own type of exercises or something... trying to find if maybe i can put a wet towel on his ankle area when im exercising, would warm or cold be more affective? (maybe a stupid question).. just a thought.

He is have issues with his VERY NEW first splint, which i know/how he'll be ok with soon.

But i want to do more...

He apparently has mild hemiplegia on the right side - but his 19 months and not walking yet (which is ok i supose)... i just want any advise on anything i can do to help him not walk with too much of a limp (if there is a possability)..

Like i mentioned, im new to all this, please forgive my stupidity if thats what i sound like Im trying to read as much as i can to learn about this.

any comments will help as I havent spoken to anyone who is in any position like me.

Thanks

Mia (sydney Australia)

 

[MommytoMJM]

Hey Mia- It is really late here now, but I read your post and watned to let you know that I will respond with what I did with MJ when she was a baby when I am a bit more concious. HUGS!

 

[nwdisgal]

Hey MommytoMGM,well first of all Do you have Ready Start (Early Intervention) preschool in your school district geared towards Special Needs kids? It is a program where they also blend in Mainstream kids to give your child social skills exposure to typically developing peers. This program is a lifesaver if you have it available. My son's favorite room was the large motor area where they worked with him on his motor skills and it was also a favorite retreat when he needed to have a quiet spot, too.

 

[disneyobessed]

It sounds like the SSI should not be a problem for your daughter. If it is continue to fight for it. The system seems to be set up to fend off "cheaters" better than it is to get quickly get benefits to those who need and deserve them.

I went through all of this at one time. I am now able to support myself, except for sometimes needing help with medical bills. Don't even get me started on health insurance issues.

Good luck and keep enjoying the Disney parks.

what exactly is SSI/ I have a 5 year old son that has cerebral palsy and things are getting very expensive. we just spent $7,000 on a 3 week/4hr a day intensive therapy program.

 

[dclfun]

SSI is supplemental security income- it is related to your family's income which cannot exceed a certain limit based on family size. Most people with SSI receive Medicaid for medical expenses although Medicaid doesn't always approve every treatment, etc. School programs and therapy though are mandated by law and MJ ( and your son) should be entitled to early intervention services which is at no cost regardless of family income. Kathy

 

[disneyobessed]

SSI is supplemental security income- it is related to your family's income which cannot exceed a certain limit based on family size. Most people with SSI receive Medicaid for medical expenses although Medicaid doesn't always approve every treatment, etc. School programs and therapy though are mandated by law and MJ ( and your son) should be entitled to early intervention services which is at no cost regardless of family income. Kathy

My son recieved early interventions until 3 when he entered the public preschool. through the public schools he recieves speech, OT, PT.

How do we know if we qualify for this? He does have a supplemental insurance other than his primary which i believe is a form of medicaid that we have to pay for.

 

[roseprincess]

disneyobessed,
When you apply for benefits at your local Social Security office for a disabled child, there are 2 different kinds of benefits. There is SSI (supplemental security income) and SSDI(social security disability insurance). I am not familiar with SSDI at all. A friend of mine I think has that since she has MS and her dd is low-functioning autistic and her and her dd collects either SSDI or SSI or both. I don't ask my friend questions on this b/c her mother had set this all up for her-her mom is the representative payee for both my friend and her autistic dd.
I do know about SSI, since we had been on it for awhile-my dd has a complex congenital heart defect and had a lot of complications when she was an infant. Anyways, SSI has to be approved in 2 categories. The disability itself and by income. There are 2 different reviews for SSI. The one review is for approval for the disability, that gets done about every year and a half to 3 yrs each time. The other review is the income review. Your SS caseworker you are assigned to asks you to come in or does a phone review on everything you , your dh, and dkids own. It is a very extensive review of everything financial. The caseworker checks all your bank accounts, how many cars you own,what kind of stocks and bonds you own, etc. And this is all legal. They have to do this. and they also want you and your dh to send in all your bank statements and monthly paystubs. And as dclfun stated,there is a limit income that SS goes by. If your family makes above that, they cut you off. The maximum income can change yearly(not by much), to meet the increase in living.

Believe me, it is not fun at all to be reviewed all the time, esp. the financial review. Unfortunately, my dd's SSI caseworker is a stickler. She seems to find everything under the sun to deny us benefits. Oh, I forgot to mention, that for the income part of SSI, there is also a limit of how much can be in your bank accounts. These SS people do have ways of finding all this info.
Thankfully, my dh got a promotion recently, so right now, we don't get the monthly SSI checks, we went over the income limit.

You may want to call or visit your local SS office to get a booklet that explains how and what the income limit is in your area for benefits.

As of getting certain therapies paid for by SSI, I don't know if medicaid will pay for the therapies or not, I doubt it. To get medicaid while getting SSI in my area, the family income has to be an extremely low income level.

If you have any more questions on SSI, feel free to PM me.

Rosemarie

 

[roseprincess]

If anyone is interested, here is the national Social Security website, to get info on overall benefits, paperwork, etc.

www.SSA.gov


Rosemarie