MJ update: Epilepsy, autism and spastic diplegia/hemiplegia

[MommytoMJM]

Well, we're back from the neuro, she has epilepsy, and spastic diplegia and hemiplegia (meaning three limbs and all of the muscles on her left side are affected) he confirmed my suspicion that that is why she can't eat all of the muscles on her left side are affected, including face, larynx, esophagus, etc. And she's autistic. I have suspected it for a long time, but everyone always told me that she is too social, turns out that on the autism spectrum there are some kids who are inappropriately social in that they are hyper social (have to hug and kiss everyone, can't discern dangerous people, love everyone....it is cute while they are young, but becomes a big problem later in life) it is nice to have it confirmed and we can get SSI for her easier and more services for her, so it is one of those good news bad news things.

He put her on some meds for mood stabilizing, sleeping and meltdowns, gave us an emergency med for her seizures and is consulting our pharmacist on which seizure med she can take as a preventative. She has to have an MRI and an EEG under general anesthesia.also the Dr said that ADHD may very well become a problem for her and that her intestinal stuff and allergies could be a part of the autism too. It's a lot to process.

We overslept and missed MJ's OT appt it has been rescheduled for next week and in a way, it is better that we have her diagnosis. I am sure there is more that he said that I have forgotten to put in here, my head is still swimming......Feel free to ask any questions.

[dclfun]

Thanks for the update and I'm glad you have the diagnoses under your belt. Was the OT visit to determine services for her? Just wondering - I was an OT before deciding to homeschool my children and having my special needs foster boys- 6 children under the age of 6 was enough! She should qualify for any early intervention programs and therapy out there, special needs preschool, etc. As I'm sure you know it's essential to get an early start with treatment while she's so young. It may be a bumpy ride getting the meds adjusted and I'll continue to offer my P and PD for her. Did you end up liking the neuro? :-) Kathy

[SueM in MN]

It probably worked out better that you won't see the OT unitl after the neurologist - she'll have more to go on.
At least you have some places to start now.
Prayerrs an Pixie Dust continue.

[coinkc]

Just curious...were you at Epcot this past Saturday? I saw two wheelchairs (one looked more like a stroller type as it was a little girl) hooked together. I remember reading your posts about how you hook your chiars together to make it easier for your husband to puch.

[SyracuseWolvrine]

Hi Bonny, Andrew, and MJ

It's good to hear that you have a diagnosis, and that now you'll hopefully be able to make some progress on some of the issues. Tell MJ I said hi, and I hope to get to see you guys again soon (sadly, free time on weekends doesn't happen too often for me)

[MommytoMJM]

Just curious...were you at Epcot this past Saturday? I saw two wheelchairs (one looked more like a stroller type as it was a little girl) hooked together. I remember reading your posts about how you hook your chiars together to make it easier for your husband to puch.

Yup, that was us! Where did you see us? I really gotta figure out a way to attach lime green to my chair....

[Joanna71985]

Hey Bonny. I just read your post about MJ. Here's a :grouphug: and I'm sending lots of P and PD your way. I just know things will get better. I am off Friday and Saturday. I am pretty sure I will be at MK on Friday, and I might be at AK/MGM Saturday. If you plan on going to any of those parks those days, let me know. Maybe we can meet up.

Joanna71985

[dclfun]

Me again....what days do you guys visit the parks as I'd like to meet up too? I don't think anyone can miss either of our chairs and for you guys they'll see MJ's happy glow! I don't get days off on the weekends either ( by choice- I love to work those days) but am off on Tues/Wed/Fri. Went to AK yesterday but I can't take more than a few hours due to the heat right now. By the way, you mentioned the other OT saying MJ was "functional enough". What does he/she mean by that? From what you've said, she is unable to do ADL's appropriate for a 4 year old, she lacks gross motor skills ( you haven't talked about fine motor) and she needs oral motor stimulation since she can't eat/drink orally - I would push for maximum therapy for her to maximize her potential. Have they offered speech therapy also? Sometimes when I worked in the school system we had to be "creative" in wording things to get a child's therapy approved, but where there's a will, there's a way.
Meanwhile hope you guys are filled with magic on your MK visit coming up! Kathy

[Belle1962]

Thanks for the update. Please keep us posted.

[coinkc]

Yup, that was us! Where did you see us? I really gotta figure out a way to attach lime green to my chair....


I thought it was you! We were right outside the restroom before you start the World Showcase. (We were crossing from the Land over to Mission Space.) Your little girl was wanting to give someone a sticker I think. I was going to say something but the last time I asked someone if they were a DIS'er they looked at me funny and moved away...like I was a freak or something! :rotfl:

[MommytoMJM]

Me again....what days do you guys visit the parks as I'd like to meet up too? I don't think anyone can miss either of our chairs and for you guys they'll see MJ's happy glow! I don't get days off on the weekends either ( by choice- I love to work those days) but am off on Tues/Wed/Fri. Went to AK yesterday but I can't take more than a few hours due to the heat right now. By the way, you mentioned the other OT saying MJ was "functional enough". What does he/she mean by that? From what you've said, she is unable to do ADL's appropriate for a 4 year old, she lacks gross motor skills ( you haven't talked about fine motor) and she needs oral motor stimulation since she can't eat/drink orally - I would push for maximum therapy for her to maximize her potential. Have they offered speech therapy also? Sometimes when I worked in the school system we had to be "creative" in wording things to get a child's therapy approved, but where there's a will, there's a way.
Meanwhile hope you guys are filled with magic on your MK visit coming up! Kathy

Hey Kathy! We'd love to get together. Typically we go on weekends, but Andrew often takes an hour or two off work so we can make a few hour trip on a weekday. He works Swings, so we go early and then leave in the afternoon so he can go to work. :)

I will continue to fight for therapy for her. What they mean by functiuonal enough is that she can communicate (although it is only one word at a time a very limited), she can walk (altho her gait is way off and it is only for 20 minutes or so) Her right side fine motor is very good, left side stinks (the sied more affected by the CP) They all agree that we will see her get worse as she continues to grow but some want to wait until she gets worse before they do anything about it. Let's not even get into her daily living skills....sigh.....I will persevere tho. Ironically, these new diagnoses "should" help her get services.

What really frustrates me is that I have been describing her all of her life as having autistic tendencies and everyone has been saying "Oh no, she's too social" Now we find out that she could have been in therapy and getting treatment all this time. It isn't like we didn't know she was going to be born with problems for crying out loud.......Sorry, rant over.

[MommytoMJM]

I thought it was you! We were right outside the restroom before you start the World Showcase. (We were crossing from the Land over to Mission Space.) Your little girl was wanting to give someone a sticker I think. I was going to say something but the last time I asked someone if they were a DIS'er they looked at me funny and moved away...like I was a freak or something! :rotfl:


I remember that! The boy thought we were nutso I think! LOL. People don't know what to do with how over friendly she is! I ask people all the time if they are on the boards, I have only met a couple, but it is cool when it happens! I'm sorry we missed you, hopefully next time!

[Pinnie]

Blessings to you and your child. Having a diagnosis and getting a treatment plan is the first step in getting the best results for your child. I am a former teacher of severely mentally and physically impaired (currently doing a type of early intervention k) and know how difficult it is to hear what is going on, but it is a step in the right direction.

Please keep us updated with her progress!!


pinnie

[spotdog]

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. :earsgirl:

[MommytoMJM]

Hey Bonny. I just read your post about MJ. Here's a :grouphug: and I'm sending lots of P and PD your way. I just know things will get better. I am off Friday and Saturday. I am pretty sure I will be at MK on Friday, and I might be at AK/MGM Saturday. If you plan on going to any of those parks those days, let me know. Maybe we can meet up.

Joanna71985

I PM'd you did you get the message?

[Lou-Ann]

Just wanted to wish you well in your attempt to get SSI. I know you will prevail. Know you are in our prayers. :wave:

[minkydog]

I remember well getting those first awful diagnoses on Christian. It was so dire; I thought i'd never stop crying. A very astute PT explained to me that they needed to present Christian as being dependent as possible in order for him to recieve appropriate service. In a way, it did help to know exactly what we were dealing with. And things didn't turn out nearly as badly as teh origianl predictions!

As far as the autism diagnosis: Our docs also refused to call Christian autistic, saying that his MR label superseded it. WHat?? The thing is, the autism affects him far more than the mental handicaps do. Anyone who ever met him knew immediately what they were dealing with--all the flapping, lack of eye contact, humming,hooting, twirling, etc. Christian is also very social when he wants to be. He gives a lot of hugs and demands cuddles, head scratches,kisses, etc. Sometimes he will go up to strangers and take them by the hand and walk off. Once in a while the stranger will react badly, but usually they know right away that Christian is "special". :love:

I'm glad you missed your OT appt. You needed a day to rest after all that. Be good to yourself in the meantime. :earboy2:

[Joanna71985]

Yeah I got your message. I'm going to call you sometimes today and tell you what I'm doing tomorrow. Hopefully we can run into each other.

Joanna71985

[Joanna71985]

Sorry. I was writing back to MommytoMJM. I didn't put it in my last post.

[MommytoMJM]

Yeah I got your message. I'm going to call you sometimes today and tell you what I'm doing tomorrow. Hopefully we can run into each other.

Joanna71985

Great!

[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 :flower:

[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) :sunny:

[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 :grouphug: 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. :earsgirl:


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 :flower:

[roseprincess]

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

www.SSA.gov


Rosemarie :flower: