10 replies to this topic

[Kolleen]

Hope everyone is doing well. My daughter Erica was born with a rare blood disease called Mastocytosis. Right before Erica turned 8 she was diagnosed with complete partial seizures caused by the temporal lobe. Now again a few weeks shy of Erica's 9th birthday Erica has been diagnosed with Narcolepsy. I'm so thank full to have some answers but also a bit overwhelmed with it all as well. I joke with my friends and family by saying God mistakenly thought Erica was a steak and hes made her rarer then rare. I try to find humor even if its warped thats what keeps me going day after day. Erica was diagnosed by a spinal tap, She had a 24hr sleep study done and we are getting the results on March 25th. We have taken Erica out of school, mostly due to the lack of cooperation from the school. The doctor had told us to let Erica sleep until shes ready to wake up (b4 the spinal tap results came in) so right now Erica is sleeping 16-20 hours a day. He said we will go over and start a stricter sleep schedule when we have our appointment on the 25th. I want to thank Michelle from Narcolepsy Network, I email them for information and I got a email and phone call in less then 24 hours. Thank you again. The support is amazing as is your daughter

[merrymom1013]

Glad you are finding some support here. You aren't alone. My daughter (now in college) developed narcolepsy symptoms at 10. There was a period where she slept 20 hours a day, and we found even home instruction from the school was stressful because I couldn't always ensure she'd be awake when they came or she'd nod off on them. It gets better. Feel free to vent or ask questions.

[sleepless sleeper]

if your daughter is able to be awake for longer periods of time after your visit with the doctor, will you put her back in school?

[Kolleen]

Thank you Merrymom. Its so nice to be able to chat with people who have survived the hell we are currently in right now. Sleepless sleeper, it all depends on how the school is with the new orders from the doctor. They have gotten so bad that we now have a lawyer just to over see that the school does what they need to do. The lawyer thinks they are trying to get me irritated so we school choice Erica to another school but living out in the country a school that is truly equipped to handle Ericas medical needs the best is about an hour away. Erica hasnt been in school since 2/17/11, my kids had the week after off for winter break and I call every other day to find out when Erica will start getting a tutor at home but so far nothing. We have been doing the work with Erica and shes almost caught up but its the fact that they are obligated to provide it for my daughter yet they are not. The original reason why we took Erica out of school was the doctors office wrote a rx and did all the proper paper work saying that Erica was to sleep in the morning and go to school when she got up. She was getting to school around 12 which is just over the half day mark and the principle said they would not give credit for her being there at all not even partial. With the doctors note and the change in ericas 504 by law they need to honor this. I was then told if shes not up and ready to go to school by 10am to not bother bring her. We tried for almost 2 months to work with the school on just this issue never mind all the others and also ones from the past. The doctor called the school him self as they were supposed to call him for 2 weeks and by the time he got off the phone he said shes not going back to school until we get things situated. We are supposed to address the school issues when we go back 3/25 but I have no idea then what will happen. I appreciate any input or advice anyone can offer. This is still very new to us so any things we should or shouldnt do is appreciated as well. Hope everyone has a great day
Kolleen and Erica

[merrymom1013]

Kolleen,
Sounds like you have good support- an attorney & the doctor on your side. What state are you in? Does your attorney know how to appeal & look for assistance at the state level? Your due process rights aren't as strong with a 504 as with an IEP but they do exist. And as 504 is federal law, you can always file a complaint against the district. Often, knowing you are prepared to follow through with those steps is enough to get action.
www.wrightslaw.com is a great website that gives examples of how to write a letter to the school, etc. Narcolepsy Network's pediatric advisory board can also talk with you & your attorney & offer support. I have served on it as a social worker/educator- there are also physicians, attorney & other parents happy to help you. You can call NN- the contact info is on the website. I'll also see if I can find contact info for you on this board & let you know how we can talk or email if you desire.

[merrymom1013]

I checked your profile & your email is private. If you'd like me or anyone else from Narcolepsy Network to contact you or vice versa, contact the office & let them know.

[Kolleen]

We live in Massachusetts. I did go in and change a few of my profile settings. Thanks again for any information anyone has to offer. Hope everyone is having a great week
Kolleen and Erica

[ImSleepin]

I was just curious if you had an update, or if Erica has had any relief/partial relief of her symptoms. Hopefully she'll be able to go back to school soon and be with her friends again.

[Kolleen]

Things continue to be crazy but hopefully settling down. We had an incident with our doctor which is being looked into by stanford and also Childrens Hospital Boston. He has been known to be great for others but not so much for us. Our insurance wont pay for provigil so we tried adderall XR 10mg which made her wired. The good thing with that is I had my active loving caring daughter back, the bad was she was now only sleeping 2 hours a day. We now have a new RX for adderall XR 5mg and shes sleeping all the time still and incredible nightmares. Ive emailed the dr and they arent much help. I am going to the support group meeting in Boston and I hope someone there might be able to suggest another doctor. Erica is still out of school. She had her neurophysiology exam April 11 so we are still waiting for the results. The school is in no hurry for us to come back but they keep digging them self a bigger hole. They are refusing to meet Ericas IEP needs. Our lawyer has a advocate working with us and will go over the results with me before we have a meeting with the school. We have already told the school in writing that as soon as we have the results we will be notifying them and re question a meeting with in 5 days of the letting. Should be interesting. What bothers me is how many parents arent fightings and give in to there games. All those kids who suffer because people want to get paid with out working hard. We did meet a principle in a school close by and she has been a huge help with information and dos n donts. She said they would love to take Erica as a student but I dont think its fare that she would have to commute over an hour a day to go to school when we have one 10 minutes from here thats just being lazy. Ive been shocked by how many of her friends parents are no longer allowing there children to come over. Nothing has changed over the last 6 mths besides another diagnoses but they arent comfortable. I understand a little but I also understand that this is life, we have no choice but to accept it and learn how to better things for Erica not with drawl her from things. Hope everyone is doing well

[hizmom]

Things continue to be crazy but hopefully settling down. We had an incident with our doctor which is being looked into by stanford and also Childrens Hospital Boston. He has been known to be great for others but not so much for us. Our insurance wont pay for provigil so we tried adderall XR 10mg which made her wired. The good thing with that is I had my active loving caring daughter back, the bad was she was now only sleeping 2 hours a day. We now have a new RX for adderall XR 5mg and shes sleeping all the time still and incredible nightmares. Ive emailed the dr and they arent much help. I am going to the support group meeting in Boston and I hope someone there might be able to suggest another doctor. Erica is still out of school. She had her neurophysiology exam April 11 so we are still waiting for the results. The school is in no hurry for us to come back but they keep digging them self a bigger hole. They are refusing to meet Ericas IEP needs. Our lawyer has a advocate working with us and will go over the results with me before we have a meeting with the school. We have already told the school in writing that as soon as we have the results we will be notifying them and re question a meeting with in 5 days of the letting. Should be interesting. What bothers me is how many parents arent fightings and give in to there games. All those kids who suffer because people want to get paid with out working hard. We did meet a principle in a school close by and she has been a huge help with information and dos n donts. She said they would love to take Erica as a student but I dont think its fare that she would have to commute over an hour a day to go to school when we have one 10 minutes from here thats just being lazy. Ive been shocked by how many of her friends parents are no longer allowing there children to come over. Nothing has changed over the last 6 mths besides another diagnoses but they arent comfortable. I understand a little but I also understand that this is life, we have no choice but to accept it and learn how to better things for Erica not with drawl her from things. Hope everyone is doing well

[hizmom]

Hello, My 9 year old son is also being managed by the doctor at Stanford. He is on Zyrem/Provigil and doing really great. I am pretty much the only person that notices any symptoms. He still has very mild cataplexy sometimes first thing in the morning (slight knee buckeling), and he has some residual tic behaviors that I notice when he is very tired (hand in shirt, opening mouth wide), and I really believe he zones out occasionally at school (based on some tests, or written work). But for the most part, he has returned to his old self, since he started taking Zyrem. He was originally in private and we put him in public school after the diagnosis, hoping to have more resources. School is working out great for the most part, although it took all year to get to this point. He has a 504 plan, which allows him to nap at noon, take breaks as needed, have water and walk around even during tests if needed, sit at the front of the class, and be used to run errands for the teacher as often as possible. I'm beginning to think that he would do much better learning from home, and using the school and some other local agencies for extracurricular activities and socialization, so we have enrolled in a public homeschool program and will start soon for summer school.