Awesome assistance for a medical issue with DD

[MommytoMJM]

6-30-05

Well, I never thought it would happen, but the last half of our day at Disney yesterday was truly horrible, tho made better by some awesome CM's....

We went to AK with Dani (CM celebrating her 21st bday) She had never been and that part of the day was awesome. We got to take her backstage at LK and TR!, she got to take MJ up to dnace at LK, took her on the safari, they paid special attention to her in the parade. (I'll type my story about MJ and the parade later) It stared to rain....we walked out to the busses, we were going to go to MK and Dani had to go back home. MJ was very upset about her leaving so instead of Andrew leaving us on the bus and taking the car round to MK he rode with us. Things semed ok, but MJ was growing increasingly agitated (she has had some personality changes occuring that have been very troubleing lately) we tried to take her on the train (she said she wanted to go, then didn't for a few minutes) a nice CM (Gabe) spent soem time with her and she decided to go. We struggled with her on the train for the whole ride, she just wasn't happy at all and now she was starting to hit me, bite me, hit herself, etc. We got on the ferry and I struggled with her the whole way, I was holding her on my lap as I didn't want her to be scared and strapped in alone, but she was really clocking me. (She had no control over herself at all and it was so hard to watch I was in tears) At this point I realized that it was unsafe to take her on a bus with other people, so we had someone call for a manager. At this point she had really hurt me, so I had to give in and strap her in her chair, so she was really upset now and was hitting herself a lot. The manager (Terry) had a nursing degree (Thank G-d) so when we described what was happening he called for a private van to take us to AK to our car. We talked to him a lot about MJ and he gave her a pin (a bus transportation pin, she loves all WDW transportation) We got us all loaded in the van and met Dan, (our driver) he was awesome, he gave MJ a stuffed toy snake to play with and made us feel so good about this. I hated having to call and ask for help like this, normally she is soooo good in the parks, but since the seizures have started she has been very different. I was soooo grateful that if it happened anywhere it was there, the CM's were amazing all around. I don't know how we would have been able to deal with it otherwise. I am really scared about what MJ is going through and it helps so much to be surrounded on the boards and in the parks with people who are so worried about us and are praying for us. Once we got all loaded in the car, I gave Dan a hug and a CMA card (gave Terry one too) MJ was fast asleep by the time we hit 192 and has been ok today, I am sure her body is sore from the events (I know mine is) of yesterday, but she seems back to herself, July 13th (her neurology appt) can't come soon enough..... Thanks for caring everyone!

 

[Talking Hands]

6-30-05

Well, I never thought it would happen, but the last half of our day at Disney yesterday was truly horrible, tho made better by some awesome CM's....

We went to AK with Dani (CM celebrating her 21st bday) She had never been and that part of the day was awesome. We got to take her backstage at LK and TR!, she got to take MJ up to dnace at LK, took her on the safari, they paid special attention to her in the parade. (I'll type my story about MJ and the parade later) It stared to rain....we walked out to the busses, we were going to go to MK and Dani had to go back home. MJ was very upset about her leaving so instead of Andrew leaving us on the bus and taking the car round to MK he rode with us. Things semed ok, but MJ was growing increasingly agitated (she has had some personality changes occuring that have been very troubleing lately) we tried to take her on the train (she said she wanted to go, then didn't for a few minutes) a nice CM (Gabe) spent soem time with her and she decided to go. We struggled with her on the train for the whole ride, she just wasn't happy at all and now she was starting to hit me, bite me, hit herself, etc. We got on the ferry and I struggled with her the whole way, I was holding her on my lap as I didn't want her to be scared and strapped in alone, but she was really clocking me. (She had no control over herself at all and it was so hard to watch I was in tears) At this point I realized that it was unsafe to take her on a bus with other people, so we had someone call for a manager. At this point she had really hurt me, so I had to give in and strap her in her chair, so she was really upset now and was hitting herself a lot. The manager (Terry) had a nursing degree (Thank G-d) so when we described what was happening he called for a private van to take us to AK to our car. We talked to him a lot about MJ and he gave her a pin (a bus transportation pin, she loves all WDW transportation) We got us all loaded in the van and met Dan, (our driver) he was awesome, he gave MJ a stuffed toy snake to play with and made us feel so good about this. I hated having to call and ask for help like this, normally she is soooo good in the parks, but since the seizures have started she has been very different. I was soooo grateful that if it happened anywhere it was there, the CM's were amazing all around. I don't know how we would have been able to deal with it otherwise. I am really scared about what MJ is going through and it helps so much to be surrounded on the boards and in the parks with people who are so worried about us and are praying for us. Once we got all loaded in the car, I gave Dan a hug and a CMA card (gave Terry one too) MJ was fast asleep by the time we hit 192 and has been ok today, I am sure her body is sore from the events (I know mine is) of yesterday, but she seems back to herself, July 13th (her neurology appt) can't come soon enough..... Thanks for caring everyone!

Could some of these changes be seizure activity? I had one student who would act this way. She would become very aggitated, sometimes for no reason at all and would bite and hit both herself and others. She ended up having to wear a soft helmet and arm restraints to keep her from hurting others and herself. At those times we couldn't hold her but had to place her in a protective enviroment which was a large soft sided corral that OT/PT provided. This could last for up to an hour or more and then she would exhaust herself and sleep for several hours and be back to her normal sweet self.
Also we found that when she started hitting herself in the head giving her Liquid Tylenol as soon as it started would cut it short (doctor ok'd) We always wondered if she was getting headaches and couldn't tell us what was happening.

Hope the neurologist can get to the bottom of all this. Hugs to you and MJ and can't wait to see you all again.

 

[SueM in MN]

Sorry to hear about your bad day, but it sounds like you ran into some angels.
Good luck on the neurologist appointment.
Two thoughts I had (which may have nothing to do with your situation).
First, I don't remember how old your DD is, but mine got more "owly" when she hit puberty and she is usually in a bad mood for a day or 2 before her period. She also is usually not "herself" a few days to a few hours before a seizure.
Second, she started hitting all of a sudden when she was about 8. The school said nothing had changed and they couldn't figure out what was happening - just that her behavior had changed. Then, one day I visited school to pick my DD up for a doctor's appointment and saw a new boy who had started in her special ed class. He was about 5 or 6, kicked, screamed, pinched and hit. He also swore with a variety of words I had never heard before. He needed to be in special ed, but he did not belong in that classroom. My DD picked up on some of his behavior and some of the other kids in the class were medically fragile (one girl was almost unable to move and I was concerned about what would happen if he hit or kicked her). The second thing I noticed in the class was that another girl was pushing my DD's wheelchair - it was clear from DD's demeanor that she did not want her wheelchair touched. The teacher's response was "B--- is just trying to help your DD."
So, anyway, my DD had another child who was being allowed to annoy DD and she had a child who was patterning aggression as a way to deal with conflict. Since my DD is not verbal, she couldn't tell anyone what was bothering her, but she's very observant and saw that what the boy was doing certainly got results. The teachers never did "get it".

 

[MommytoMJM]

It certainly could be seizure activity....her behavior has changed ramatically since the Grand Mal a few weeks ago and she has been having several petit mals during the day and night. MJ is 4, so I hope it isn't puberty yet....but there is one other thing it could be that terrifies me....

Both of MJ's birthparents have genetic (not drug induced) schizophrenia.....she was already exhibiting OCD behaviors as young as 17 months.... It could be early indicators of this.... I do hope that they have something I can give her when this starts to help her calm down...it terrifies me that she can't tell me what she is thinking or feeling, she looks so scared when it is happening. She know something is wrong, because she keeps saying sorry the whole time she is doing it, but can't seem to control it at all. It is heart brekaing to watch.

She isn't in school, so it can't be other kids...the only thing that has changed is that she is having the seizures and getting older.....I am going to try to push for a PET scan with the Neuro, I'd also like her to see a neuro psych.....

Thank for all of your support, I really need it right now, things are so scary and uncertain....New wheelchairs, questions as to if this is as good as she gets, new IQ evals, new psychology evals for an Axis 1 Dx......I am sooo overwhelemed....

Lisa, I can't wait to see you again too! It was sooo great to meet you.

 

[Nik's Mom]

Just wanted to send a hug to you. My ds is autistic and has had meltdowns in public. I can only imagine what you went through! WDW staff really came through for your family. What a blessing!

 

[MommytoMJM]

Just wanted to send a hug to you. My ds is autistic and has had meltdowns in public. I can only imagine what you went through! WDW staff really came through for your family. What a blessing!

She had never melted down in public before, I sure felt like all the other parents were judging us.....sigh.....I haven't been able to shake it yet today, I am still crying on and off.......

 

[Nik's Mom]

Yup, I've been there. Lot's of staring people, shaking their heads at us, comments of "brat" whispered under their breath. It's hard enough going through such a thing, but then you have to deal with the stares. Hang in there!

 

[leise]

hugs

I hope you get some answers soon, it's so hard when you don't know what you're dealing with.

I'm with you on the staring people; I have an autistic son and I swear sometimes you can feel the judgement in people's looks. But I do think alot of the time people are just gawping out of curiousity, wondering why, and not necessarily passingthe judgement I feel they are. Some days I find I can just ignore them, and that's great. Other times it gets to me, too. Usually after a bad night

I'm glad the CM's helped. A Bus transportation Pin!!!! That would be worth a mint in this house!

 

[spotdog]

I am sure that the Disney staff recognized that your child was NOT just being a difficult brat and that there was something seriously neurologically wrong going on.

I know that seizures can cause a lot of unexplainable behaviors. If your local hospital has an epilepsy surgery program with 24 hour EEG monitoring available that could save you alot of heartache in determining an accurate diagnosis.

Don't ever give up. There are advances in medications and treatments for seizures, mental illness and autism every day. The brain is not yet very well understood.

 

[Nanajo1]

Sorry your family had such a trying day. I was so glad to see that the CMs came through
I hope you get some answers after your MD visit.

 

[dclfun]

Just wanted to add my support and also say how nice it was to meet you. Your daughter is a real cutie! I was wondering too about seizure activity and thinking it might be best ( although perhaps stressful for you) to not do the WDW visits and to keep her out of the heat until the neuro appointment. This way it's easier to keep a "diary" of sorts as to what seems to trigger the unusual behavior and also easier to restrain her comfortably so that neither of you gets hurt. Thank goodness you had the presence of mind to ask for a private van. Whew. I'm not a medical professional but I used to be an OTR....this really doesn't sound like a manifestation of schizophrenia but more like something truly neurological. Hopefully the neuro will be thorough and perhaps he could make a referral to a a good early childhood program she can participate in. Not only would this be fun and therapeutic for her but also would link you up with some other Mom's also in the similar situations- she should receive any necessary therapy at no cost to your family. I'm not familiar with anything in the Orlando area ( we are in Lakeland/Polk County) but through my involvement with Challenger baseball I do know alot of parents who have availed themselves of these services and bonded together as a group to lobby for their children's futures. They have even secured funding to build accessible homes. I really feel for you to be going through so much and hope you get some answers soon and help for MJ. Cyber hugs coming your way! Kathy

 

[eeyore45]

adding my hugs and prayers!! May you all find peace!! I get so sad when I hear that you feel "judged" Next time you see people staring, maybe consider they want to reach out and help, but dont know how, they are there as understanding onlookers, not judgers!! (not that its true, but you deserve so much!

 

[MommytoMJM]

Kathy, we thought about not going to WDW so much, but her Dr's said that she is as safe if not more at WDW due to their superior medical training and their great accomodations for keeping her cool. They said that it might make her more depressed if we take away the one thing that truly makes her happy....so we'll stick with our plan for now....It was so neat to meet you and Skye last week, hope we see you more often! I am glad to hear that you got accomodations for the busses, makes me feel better about having to ask for special dispensation.....

Thank you all so much for your support, it means so much to us. I'll keep you all updated.

 

[dclfun]

It's good that her Dr's gave their approval- I was mostly worried about the heat, humidity and crowds this time of year- I know sometimes I get overwhelmed and stressed out ( and don't realize it until we get home!) by even a few hours at the parks....and I'm an adult. If I get dehydrated I'm in big trouble and since I don't usually get thirsty I have to remind myself to go add a large water bolus several times a day.
I hope to see more of you guys too- I don't get to the parks as often as I'd like because of my work schedule followed by exhaustion on my days off and lately due to the incessant rain. Let us know how the neuro appt. turns out and if they have some answers and help. There's nothing worse than "not knowing" and seeing your child suffer.
By the way, I've had lots of special accomdations made so never worry about asking for help when you need it. We've been driven to/from the parks in the lift van and I was told anytime I want to use it to just go to Guest Relations and let them know what time to send it. One time during a lightning storm they rushed a bus over to return us to our resort so I wouldn't have to wait outside at all...several CM's accompanied my family to the bus to see that we were boarded safely and even gave us an extra poncho to cover my vent since mine had somehow blown away. Then there's my trips to First Aid to get a new t-shirt when my PEG became disconnected ( you know what that's like!) and a CM with an electric air compressor who showed up in the resort lounge one night to fill my tires- they always go above and beyond and I'm always amazed at the level of assistance offered- makes me never want to visit/vacation anywhere else since I'm so spoiled.
Kathy

 

[KTink14]

So Sorry to hear about your day, glad that those CM's could make your day just a little bit better! My little cousin has seizures, hes 4 also, turning 5 while we are in Disney on July31st! Anyway, he hasn't started hitting himself or anything extreme like that but lately ive noticed when he wants to do something and can't he throws a fit, which he never used too. Reading your account of your day ,made me think of him and this because my mother read an article about a seizure medicine he is taking and it stated that it could make him aggresive or even go crazy, so it made me think maybe if your child is on medicine, there are some side effects like the one my cousin is taking. He has an appointment with his neurologist in August and since this medicine, unfortunately that last children's seizure medicine available isn't working we can get him off of it, hopefully we have other options though!!!! You are in our prayers~~~!!!