Hello everyone. Our daughter Amy is 31 and was diagnosed with infantile battens 7 years ago. On Sunday at 1am she had 2 major seizures the latter of which she could not come out of. She was rushed to hospital and after 3 days in Intensive Care she is off all the life support stuff and able to breathe unaided etc etc. But she is still jerky and no doubt has lost a lot of her abilities. We still wait to see how much she can recover. The doctors talk of the chronic stage etc etc but can abyone out their share their experiences should they feel they may help? I realise every child is different but 1. How many of you are still using sodium valporate? 2. What other drugs help the jerking motions if any? We are in Wakefield England. Thanks Norman,Pam and Amy

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Hello everyone, after a couple of years of trying to figure out what was going on with our son, my husband and I have just received the awful news that our 5yo has Battens Disease. We are devastated to say the least especially because we our son is adopted and before this we had a crazy journey through infertility. We are just trying to come to terms with this also being hereditary because we also adopted his two siblings, a twin sister, and his older brother. They came into our lives about three years ago and my lil boy was walking and talking. He already had seizures and had an intellectual disability, but we didn't think much of it, until he started falling and losing the little words and other milestones that he had. We need lots of support and hoping to get to know other families' stories so that we kind of know what to expect.

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I have just been told that my son has Battens. I'm not sure what to do now. Taking any and all suggestions.

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Hi Everyone! Brandon is almost 15 with JNCL. We have lost him to constant hallucinations on Aug. 31, 2011. Good and bad hallucinations...nothing is real anymore. We have an appointment with a Phychiatrist in 2 weeks. Is this normal in the progression? What are we to expect? What meds are used and work? Also, he has not been in school since 9/1 because we were hoping this would last about a week like everything else usually does. Any feedback would help:) Thanks everyone!! Tessie Childers-Omaha

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Hi Everyone, I miss you guys. Nora's doing alright. Me and the kids are having a hard time. If anyone needs any kind of help I'm good at helping. Please let me. Jess

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Hello. John is 20years and is just beginning to need help on walks. We have pushed him as far as he can go I think. I don't know where to start looking at wheelchairs. What kind is good to start with. He is still very ambulatory but gets tired easily on walks. Any ideas?

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Hi All, Anyone have/had issues with vomiting/g-tube?? Catie 21.5yrs now, is having problems with projectile vomiting. As soon as I put in her meds. or food (small amounts) she is vomiting. Doesn't happen all the time, just randomly. She is still eating small amounts by mouth, but takes all meds and hydration through her tube. We just had an ultrasound that was normal. I would love any input!!

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Hello Everyone, I need your help. I need anyone who is interested in coming in on a project to please contact me. I think it can help and it's VERY important!!!! Please contact me! jl62378@live.com 978-630-4111

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Hi Everyone I wanted to kmow if anyone has experience with body pains. My daughter is complaining of legs pain. We have taken her to an orthopedics he,informed us that she has an inbalance problem not an orthepedic problem, but she is still complaining of leg pain. I was wondedring if maybe someone has had a similar type of situation. I am thinking it could be muscle atrophy because her movements have decreased and she has problems getting up from where she sits. Any suggestions, I have schedule an appointment with her doctor to see if I can get an MRI done on her. Thanks Anny

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Hi, I'm looking for some possible help in the future. I'm inquiring with genetic/biologic companies to see if they can make the enzyme for CLN and CLN2. There is one company that said it is possible..trying to get the specifics. What I need to know is if other parents will be on board for raising money if we can get it going. Jess - Nora's Mom

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Could use words of encouragement/reassurance. . . I'm currently dislocated from my family, supporting GWOT. We have three daughters; two are inflicted with JNCL. During my mid-tour leave, I was utterly shocked and disheartened at the progression of our oldest daughter in the short 6 months I'd already been gone. She recently celebrated her Sweet 16, to which all of us realize what a huge milestone it can be for ANY child, much less a Batten's child. While I physically missed such a momentous occasion, my heart was lifted at how lucid she was on the phone with me and relatively able to communicate in 1-2 word responses. The challenges of being away for extended periods in this line of work, especially given our circumstances at home, often dampen my spirits to the point I ask myself "why am I here?" (meaning "far away" from home)

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Any advice on getting rid of constipation? Mikey has been in the hospital for a few days, they have given two enema's, 5 liquid laxatives and still nothing has come out. Xrays show he is impacted in two locations. Any advice would be great. Thanks

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Does anyone whose child has JNCL experience hallucinations? According to Dr. Mink, hallucinations are very uncommon in JNCL. Kelsey is considered atypical as far as JNCL goes. This may just be part of that classification. We're having a really bad time with the hallucinations and the behavior. Her psychiatrist mentioned Fanapt (generic name: Iloperidone). Has anyone had any experience with this drug? Other drugs mentioned were Haldol (Haloperidol)and quetiapine (seroquel). Any comments would be greatly appreciated. ~Kim Fuller

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Hi, I'm managing. Nora's doing alright with Protein Shakes. ALot of bad things going on here. I miss everyone. Give kisses to the kids. Jess

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Just to let you know Iam still around . Chelseas MOM

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Hi, I noticed with my own child that the doctors and school were pushing the feeding tube ( not our doctors) because they did not want the responsibility at school and the extra the work to make changes to accomidate Nora. Unless about solute failure to thrive it's not recommended (least to me) Also, what Ive noticed witht he "chewing" that they do (Nora was hungry for food not shakes) She chews on her finger or sticks her hand in her mouth. Also, whey protien shakes are remarkable for putting weigh on. Pete my bf told me this and it works wonders. It's all natural and the brain needs protien to work and it makes them hungier. Nora put on 4 pounds in 2 weeks. Also if your school is giving you a hard time it's because they are trying to force you to pull them outta school which is huge violation on their rights and or to cut the budget. Ms Anderson with new diagnosed daughter pls contact me.

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Hi does anyone know if it is common for a child/adult with juvenile to experiance cataplexy / narcolepsy any help on this would be much appreciated Amy is just 17 and has been having these attacks approx 6 months many thanks steph

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I'm writing this in desperation. I very rarely ask for help because my ex-husband is a very cold hearted man. Hei si trying very hard to make sure Nora, Thomas and Alicia and myself have no place to live. He is under order of the courts to what is now a huge amount of back bills, electric, sewer, water, etc.. the worst part being the orgage. Pete, my fiance is and been trying very hard to keep this family together through are troubled and trying times. He gave me $1800 to make a mortgage payment and some bills and Tom took it out and kept it. We now owe $7000 on the house and he will not pay until we get kicked out of our home. Pete has shown Nora more love than TOm Tom ever has because of this Nora has had miracoulous improvements. The Docs want to know what I am doing and my answer is Pete, showsNora love and treats her like a normal kid. You should never under estimate the power of love. Ive been trying very hard but life keeps trying to put us down. I'm ready to give up. Tom wants to let her die so he doesnt have to pay for her medical insurance and 1 less kid for child support. He is a very cold mean man. Now you know why he is my ex husband. Ive tried to organize fundraisers but Im not very successful. We need help very badly Im asking you guys which I didn't want to do because your in the situations. There is no work in our small area and Pete is also disabled. He has been a god sent for us. I don't knwo what else to do. Im ready to back up everyone and drive off and not tell anyone where we are going. I know it's cowardly but it pains me to Pete crying at night because he is doing his best and it is not working. He made us his family, even though we are not and he has done everything he can to help me and the kids. He treats them as if they are is own, when their own father won't lift a finger to help us. If you could organize a fundraiser or something, that would be greatly appreciated. We are in a remote, very poor area. Our car is falling apart and we can barely fit our family into it. Tom owes me more than $30000 but is stalling until we lose the house. Pete is also waiting for his 1st disablity which is Retro from 2008 but they will not come in time. Tom said to me in front of the kids he hopes we all freeze to death than he wont have kid support or medical insurance. PLEASE PLEASE PLSEA help us and keep us in your prayers. mynoraskye.com POB 214 East Templeton, MA 01438

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What type of massage therapy is good for Batten's children?

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Hi. I'm having a super bad time. I have alot to handle and things are too much. TOm is being horrible to me in the divorce. He and his family are harassing us. I can't make anyone happy. My family is playing games with me and and I'm having a very hard time. The bills are so bad and TOm screwed me over really bad. I'm really sad. Nora comes back a vegetable on his weekends and I cry alot. Please help me.

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BDSRA has two Braun lifts that would fit conversion vans or small buses. They are available at no cost with the understanding that they be returned to BDSRA when they are no longer needed, allowing us to provide the lift(s) to another family in the future. If you are interested, please contact Lisa Weston at lisaweston@bdsra.org. Thank you!

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Hi was just wondering if many others with juvenile have experianced atonic seizures Amy has been having these for approx two months since the medications changed she is now on sodium valporate( epilim chrono ) and levitiracetam ( keppra) would be greatful for any experiance of this she always seems to laugh first although the laughing is appropriate ? many thanks steph

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Just me, Im real sad about Nora today. She's doing well, but Im very worn down. I'm having a hard time getting ppl to go to my sight and get donations and financial support from anybody. Tom's trying to get us kicked out of the house so we have nowhere to live. Im just sad today. Ik you guys can relate. Im having a hard time with Nora's condition. It makes me very sad to watch her suffer. She's happy but suffering. You guys don't let me down. Just sad/depressed today. Ppl always say they will help and never do. Good thing I have yout guys, Pete and the kids.. otherwise I don't have anybody. Love, Jess

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Hello everyone, Long time, no chit chat. I have seen how awesome everyone is doing on fundraisers and awareness. You guys are really kicking my butt! :) My Batten's family, you blow me away. You are the sweetest, most loving family I know. I was thinking that we should all try to get together more often or have an active call list posted so we can all talk. You guys are truly amazing on everything that you are doing. From my mind "we need to up the anti and advocate the hell out of Batten's disease and beat ppl over the head with it til they listen." Other ppls fear is a huge set back along with ignorance, so we got to break 'em. I just don't know how. I'm open for a good battle. Will take any suggestions., Sending LOVE to everyone. STAY STRONG and WE CAN DO IT!!! I believe in you.

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My 5 year old son with LINCL has been getting alot of gas and tummy aches. Do your kids also get this? What do you do to get rid of it? I give him Mylicon drops and water to drink but sometimes it doesn't help. He eats all kinds of food.

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We are in need of a donation of a tumble seat for a 3 ½ year old. Please contact Lisa Weston at either lisaweston@bdsra.org or 888/379-2546 if you know of one available. Thanks!

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I just wanted to let everyone who has someone they love with batten disease that its not easy but you can make it. My sister had it for 11 years and just died saturady morning. It was hard losing her but she's not suffering any more. Just stay tough and find someone to talk to. Good luck to all batten's victims and their families!

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Hi all, I am the chairperson of the Chapter Development committee and I would like your thoughts, ideas and feedback on things that the national office can do to help chapters and vice versa.......please contact me at chawk328@live.com with your suggestions.... thanks!

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My son Thomas (Infantile) has been dealing with mucus for about a half a year. We have been giving him Robitussin about every 4 hours to decrease the mucus (sometimes it helps and sometimes it doesn't). For the past week and a half he has been coughing ALOT and has been on antibiotics for over a week incase of an infection. His oxygen levels were about 93 in the hospital until they put him on oxygen. Does anyone have any suggestions as to why we can't get this under control. We are doing Xoepenex nebulizer treatments and also Mucomyst in the nebulizer also, but it only gives us VERY temporarily relief. The doc is not very good on giving suggestions or when I suggest something he is not very open to try new things. Thomas coughs about 75% of his awake hours. It is very hard for him to catch his breath. I am sure that his chest/ribs are very sore due to the coughing. He has constant rattling in his chest/back area. You can hear it and also feel it with your hand. It also sounds like he is breathing thru water. Has anyone ever dealt with this or have any suggestions of what to try next? Thank You.

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Hi all!! It's been a while since I've asked a question on here and all has changed - looks great!! Anyway, my question: When and how do you decided when to cut back hours/days in school? My son Nicholas, has a juvenile onset of INCL. He is still learning and getting around but tires out quickly. At least once every other week he stays home and if it were up to him I'm sure he would be home more often. Since he is still learning I am hesitent to cut back but I also hate the struggle and the daily phone calls home. It's almost like he shuts down half way thru the day and he is just done! Anyway, any suggestions on what you all have done would be helpful!! Thank, Jill

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