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Title: A small child with clusters (IMPORTANT) Post by don on Aug 10th, 2004, 3:18pm Brought this over from the other board. Its important. Quote:
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Title: Re: A small child with clusters (IMPORTANT) Post by Leesa on Aug 10th, 2004, 3:25pm OMG!!! This just SUCKS a 3 yr old with CH!!! I cant even think of what that little one is dealin with. My God in heaven............its bad nuff in adults but a child? Im ballin now!!! Yet Im mad as hell!!!! Leesa :'( >:( |
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Title: Re: A small child with clusters (IMPORTANT) Post by Jeepgun on Aug 10th, 2004, 3:28pm OMG, this sucks.... That poor little girl... :'( |
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Title: Re: A small child with clusters (IMPORTANT) Post by don on Aug 10th, 2004, 3:28pm Hope your mad enough to do some internet searching to get this kid some help. I am. HEY GOD! WHAT THE FUCK? |
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Title: Re: A small child with clusters (IMPORTANT) Post by Mark C on Aug 10th, 2004, 3:30pm [smiley=frown.gif] |
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Title: Re: A small child with clusters (IMPORTANT) Post by JDH on Aug 10th, 2004, 3:30pm That's just hideous. Wish there were a way I could take the h/a's instead of her having to deal with it. Jim :( |
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Title: Re: A small child with clusters (IMPORTANT) Post by echo on Aug 10th, 2004, 3:31pm So far I havn't found anything for anyone under the teenage years. Three ?? That's just not fair! How, as a parent you could cope is beyond me. :'( |
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Title: Re: A small child with clusters (IMPORTANT) Post by Gator on Aug 10th, 2004, 3:38pm This disease is bad enough for an adult who knows what is going on. A small child like that getting hit is beyond comprehension. I can't imagine watching my children go through an attack. As a parent how do you deal with something like that? Gator |
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Title: Re: A small child with clusters (IMPORTANT) Post by pubgirl on Aug 10th, 2004, 3:40pm It is beyond the realms of fair. Poor, poor kid and family. Goadsby reported a one year old CH sufferer but I have no idea what the treatment was. If all else fails, we can email him and ask for advice Wendy |
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Title: Re: A small child with clusters (IMPORTANT) Post by Margi on Aug 10th, 2004, 3:42pm um, Don? I posted a link to the OUCH page on kids with clusters in that thread, just before you posted. There's some excellent info available. |
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Title: Re: A small child with clusters (IMPORTANT) Post by Jayne on Aug 10th, 2004, 3:46pm Hey the man upstairs.....we will all take our share of a few more headaches if you take away this little girls headaches, why don't you start with me!!!!!! I think that is a great idea if someone from England could contact Dr Goadsby to find out how to go about treating a 3 year old. I am so sorry your child is going through this, Love Jayne |
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Title: Re: A small child with clusters (IMPORTANT) Post by don on Aug 10th, 2004, 3:48pm http://www.chhelp.org/children.html |
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Title: Re: A small child with clusters (IMPORTANT) Post by catlind on Aug 10th, 2004, 3:52pm I've sent an enquiry, will try to do anything I can to help this little one. This is NOT right. No child should have to suffer this. Cat |
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Title: Re: A small child with clusters (IMPORTANT) Post by catlind on Aug 10th, 2004, 3:54pm Everyone, write to ACHE - Dr. Jan Brandes, AHS - Dr. Todd Rozen, NHF, WHA and anything else you can think of. We need to get some serious attention to this little girl and any other small child suffering. Cat |
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Title: Re: A small child with clusters (IMPORTANT) Post by Carl_D on Aug 10th, 2004, 3:59pm :'( :'( :'( :'( :'( :'( No small child should EVER know this kind of pain. Seems everyday I lose a little more faith in a loving, merciful, just God. Peace, Carl D |
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Title: Re: A small child with clusters (IMPORTANT) Post by pubgirl on Aug 10th, 2004, 4:00pm Jayne and Cat Message asking for advice winging it's way this side of the pond. Will reply as soon as I hear something Wendy |
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Title: Re: A small child with clusters (IMPORTANT) Post by notseinfeld on Aug 10th, 2004, 4:10pm Whew. I remember writing to a woman who posted here about a year ago in regards to a 7 or 8 year old boy diagnosed with CH. It would probably be helpful to contact her to see what, if anything, she discovered. This situation is horrific Paul and I think I speak for everyone when I say that we'll do whatever is necessary to help you and your daughter. UPDATE: Her login name was Camerooskis_Mom and last contact was in November, 2003. Let's see if I can contact her. nots |
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Title: Re: A small child with clusters (IMPORTANT) Post by klp on Aug 10th, 2004, 5:19pm i haven't stopped crying since i read this post. my son is 3 and i cant imagine the horror of watching any child suffer like this. Paul, anything you need just ask. krista |
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Title: Re: A small child with clusters (IMPORTANT) Post by Becky on Aug 10th, 2004, 5:28pm OMG, that just sucks pond water. I would put it another way but I am trying to be polite. I am sitting here crying my eyes out, how can it happen to a child that young. Just give me her hits, I will take them with pleasure. I will be praying for her daily and for the Dr.s so they can come up with something to help her FAST. Prayers and hugs to her and your family Bec |
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Title: Re: A small child with clusters (IMPORTANT) Post by E-Double on Aug 10th, 2004, 6:14pm I can't believe this!!!!! Beyond unfair, just plain wrong. What I wouldn't so to help this child and her parents. So difficult for us as adults to function with this but a child!!!!!! I'm pissed!!!!!!!!!!& Still crying Eric Where do they live again?? |
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Title: Re: A small child with clusters (IMPORTANT) Post by ShariRae on Aug 10th, 2004, 6:27pm OMG... that is just soooo wrong...Looking to see what I can find to help.. Shari |
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Title: Re: A small child with clusters (IMPORTANT) Post by UN_SOLVED on Aug 10th, 2004, 7:12pm on 08/10/04 at 15:54:22, catlind wrote:
Todd Rozen is my neurologist. He is now at MHNI. He can be reached by their website at www.mhni.com or by calling (734) 677 - 6000. If anyone knows how to treat a child with CH, he's one of them ! Unsolved (I'd take the pain for her if I could ... i'm already used to it) |
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Title: Re: A small child with clusters (IMPORTANT) Post by farmboy on Aug 10th, 2004, 7:37pm That is just way to bad. No child should be afflicted with this. It is at time like this i begin to wonder why god would let something like this continue. I feel for the family. This child has to suffer it is not fair. |
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Title: Re: A small child with clusters (IMPORTANT) Post by Charlie on Aug 10th, 2004, 7:59pm It's hard to imagine a three year old having to deal with this horror. I believe there are a few posts about children but no one so young. I'm not sure what to do for her. I suppose you have to be very careful drugs for someone so young and I don't know if other ideas are feasible at that age or effective. My suggestion is to keep tabs on this thread and others as I'm sure we will find something for you in time. So very sorry for her and your family. Charlie |
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Title: Re: A small child with clusters (IMPORTANT) Post by Annette_Emond on Aug 10th, 2004, 8:01pm It causes me great pain to think of a small child having to deal with the horror of clusters. I pray for answers for her and her family. But it pains me more to see people cursing the very God they recently begged for help for another sufferer. Why the sudden change in respect for the only one who will be really able to help? Annette |
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Title: Re: A small child with clusters (IMPORTANT) Post by don on Aug 10th, 2004, 8:15pm Can we keep this thread about the kid who needs help? We can tear each other up with philisophical opinions and view points at any time later. Lets help the kid first. Heres a little more I found. Quote:
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Title: Re: A small child with clusters (IMPORTANT) Post by alleyoop on Aug 10th, 2004, 8:53pm Here are a few links, some better than others: http://www.postgradmed.com/issues/1997/05_97/winner.htm http://www.cnn.com/HEALTH/library/DS/00487.html http://www.achenet.org/kids/children.php http://www.fpnotebook.com/NEU167.htm http://pedspain.nursing.uiowa.edu/GenePain/CLUSTEnt.htm Other than the info, if they haven't already, the parents need to start a headache diary. It will be a great help to the treating doctor. I will post more as I find it. ..................................alley |
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Title: Re: A small child with clusters (IMPORTANT) Post by purpleydog on Aug 10th, 2004, 9:03pm on 08/10/04 at 15:28:33, don wrote:
There is no god. This really sucks. I am sooo sorry... :'( pd |
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Title: Re: A small child with clusters (IMPORTANT) Post by E-Double on Aug 10th, 2004, 9:15pm At 3 years old this poor child can not even describe the enormous amount of pain that she is in. We can atleast be descriptive. The teacher/therapist in me would have the parents teach her to describe via color. 3 yr olds tend to know them. I wonder if a possibility.. The Killer ones= "Mommy it's red" Pacers = "Mommy it's pink" Shadows = "Mommy it's yellow" I actually chart my headaches in color codes to give a visual display of my attacks for Docs to see and for me to learn. It might be a way for them to learn the differences whrn this poor thing can't describe what a "burning ice-pick is" Eric |
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Title: Re: A small child with clusters (IMPORTANT) Post by Little Deb on Aug 10th, 2004, 9:25pm This is a bummer. I hope my daughter doesn't end up with ch. She had similar symptoms her first year in life. I just sent this gentleman a note. I hope he finds help for his daughter. Prayers and Vibes to her. LD |
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Title: Re: A small child with clusters (IMPORTANT) Post by don on Aug 10th, 2004, 9:44pm The headache diary can be found here. Right hand side about half way down. Its a PDF file. http://www.headaches.org/professional/educationindex.html |
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Title: Re: A small child with clusters (IMPORTANT) Post by Dave_Emond on Aug 11th, 2004, 5:15am Don, Thanks for the post about Paul's daughter, I'm not supposed to be here, but this kind of news will bother me forever until we can find a way to help this child. Your last link you posted is a good one. I've been working on a link for the OUCH site for a diary, log and information booklet called: Parent's Guide For Teens & Children With Cluster Headaches Had some early copyright rules that held it up for a while, then trying to convert my old files into my newer MS Word was a nightmare! But tonight, for some reason, it just came together and is ready to go. I'll need someone to convert it to PDF files as well as the MS Word format I have. Hope this will at least help parents of children with CH in many different ways. Could help some adults as well. The logs I made up are similar to the last link, but I hope more in-depth. I'll link the site here for input and suggestions. (I have already gone through and fixed the spelling and grammar problems that are on the draft.) I'll get in touch with Paul and see if he thinks anything here can help him at least see what medications might be doing and other factors to watch for to hopefully find anything that can bring this poor child out of her misery. I have this booklet ready to go for easy printout now and will send it to OUCH. This is a heart breaking situation! Dave (This link is just the rough draft to view for now, plus AOL put the pepper remedy up there ... not me! This will all be formatted properly for print without AOL.) http://hometown.aol.com/explodingeye/index.html |
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Title: Re: A small child with clusters (IMPORTANT) Post by pubgirl on Aug 11th, 2004, 6:00am We got an instant answer from the Prof last night who was probably working late as usual, poor man. Unfortunately there was a confusion and he said that as this was very rare he would see the child personally straight away at Great Ormond Street Children's Hospital (he didn't realise where the child was living) This was a wonderful response, but we are now requesting a more 'theoretical' rather than practical one! Will post again Wendy |
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Title: Re: A small child with clusters (IMPORTANT) Post by OneEyeBlind on Aug 11th, 2004, 6:44am Life is so unfair sometimes. Healing vibes coming your way. |
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Title: Re: A small child with clusters (IMPORTANT) Post by alleyoop on Aug 11th, 2004, 7:28am on 08/11/04 at 05:15:24, Dave_Emond wrote:
Hell of an information packet you put together there Dave! No doubt, it will be a tremendous help to Paul and his family as well as many others. You never cease to amaze me! Now, as hard as it may be, you need to concentrate on YOUR HEALTH. There's no doubt that your intentions are golden and the fruit of your labor is truly exemplary. But I think I speak for the rest of our family when I say that right now you need to take care of YOU! You've got a lot of people here pulling for you, and I'm sure a single post or a PM or two will rally all the support needed for anything you would like done. I, for one, will do anything I can, at any time. Just ask! .........................................alley :) |
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Title: Re: A small child with clusters (IMPORTANT) Post by Paige on Aug 11th, 2004, 7:54am I have had clusters since I was 10 years old and that was 26 years ago. Imagine sitting in a class room with all of your friends and getting hit. All of the sudden you are freak and the teachers are sure you are faking it all. You don't want to go to out of the house because you are afraid you will get hit and then go through the embarassment of what everyone thinks. It is hard on a child! First you don't want them to suffer, but on top of that children are so concerned about what others will think about them. Any little condition that makes them feel "not so normal" is crushing to them. I can't imagine what it is like for a 3 yr old. |
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Title: Re: A small child with clusters (IMPORTANT) Post by Peppermint on Aug 11th, 2004, 9:19am Eric, There is a pain scale used for children in particular (has to do with faces), but I think the color coding might help better because the child is so small. I have a pain scale link... I"ll come back and post it here, if that will do any good. EDIT: Just found it: Wong-Baker FACES pain rating scale http://www3.us.elsevierhealth.com/WOW/facesPermission.html#FACES That might be a good link to include on your page Dave. Good job Wendy, you never know, maybe those parents are willing to go to Goadsby in the U.K. The thought of any child having to go through this nightmare is inconceivable and sad. |
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Title: Thanks for all the responses! Post by tanenterp on Aug 11th, 2004, 11:20am Hello Everyone, My wife Susan and I are “blown away” by the number of people that have responded to our inquiry, and the depths of your concern. We wanted to provide a little more information about our 3 year old daughter. Besides having Cluster Headaches, she also has a rare genetic condition called Mucolipidosis Type IV, or “ML4”. Persons with ML4 are unable to walk, unable to speak, and go blind by age 20. There is currently no cure or treatment for ML4. (If you would like to know more about ML4, please visit the web site www.ml4.org.) Lily started having what we called an “eye-nose thing” when she was 18 months old. This is what we called the Cluster Headaches, because one eye and the corresponding half of her nose would turn bright red, and she would scream in pain for 5 to 20 minutes. This would happen as rarely as a few times a week, to multiple times a day. When we got the diagnosis of ML4 last year, we assumed that this “eye-nose thing” was part of the condition. However, NONE of the other individuals with ML4 had this reaction. Last month, they started her on Tegretol to treat the attacks. This seemed to work for the first few days, but after that, the pain/symptoms returned. Yesterday, we went to some pediatric neurologists at Johns Hopkins. She had an attack during the visit, and the doctors all said it is a “Cluster Headache”. We had not heard of this term before yesterday, so I did a search on the net, and found you! We will be having a follow up appointment in six weeks to discuss other treatment options. Until then, we are hopeful that someone (doctor or affected individual) will be able to identify another child with Cluster Headaches, so we can talk to them. Thank you all so much! You are a wonderful source of support and information. Best Wishes, Paul and Susan Tanenholz tanenholz@hotmail.com |
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Title: Re: A small child with clusters (IMPORTANT) Post by don on Aug 11th, 2004, 11:29am Quote:
Its what we do. Stay with us here and we can learn from each other and be able to effectively help the next kid who is suffering. |
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Title: Re: A small child with clusters (IMPORTANT) Post by E-Double on Aug 11th, 2004, 11:36am Ditto!!!!! Eric |
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Title: Re: A small child with clusters (IMPORTANT) Post by pubgirl on Aug 11th, 2004, 11:42am Dear Paul and Susan I am really very, very sorry to hear about how much your little girl suffers, and cannot think how hard it must be for you. I have a 4 year old, and any pain or illness he goes through puts me through torment too. I am humbled by what you describe. One of the world's leading headache experts is hopefully coming back to us with some information, and I know he has treated several children with serious headache conditions including CH. One thought does occur immediately though. If the attacks can be short-lived and very frequent, if it hasn't already been tried a non-steroidal anti-inflammatory drug could be worth discussing with your doctors (an NSAID) I have heard that there is a syrup version of one of the NSAID's recommended for children (not the standard Ibuprofen syrup you can buy, it is a stronger version of a different NSAID) It was discussed by a parent with a 6 year old who was having excruciating short-lived headaches with the eye and nose symptoms as well, the pain was so bad it made him literally fall to the ground. They had been told it was CH, but the shorter attacks made this less than likely. I will find out what I can and repost when I find some useful information. My best wishes to you Wendy the Brit |
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Title: Re: A small child with clusters (IMPORTANT) Post by Jayne on Aug 11th, 2004, 11:42am hello Paul and Susan and welcome I am sorry to say. We are all here for both of you. If Lilly is still getting hit, I would call up the nuerologists and demand to be seen sooner than 6 weeks. Clusterheadaches are a medical emergency. I wish, wish wish that I could take on those headaches for Lilly. I feel so helpless here. (((((((((((((((Paul,Susan & little Lilly))))))))))))))))))))) |
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Title: Re: A small child with clusters (IMPORTANT) Post by don on Aug 11th, 2004, 12:30pm Lilly. What a great name. If you wish to provide some type of mail contact I will put a "Be Happy Lilly" card in the mail today. |
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Title: Re: A small child with clusters (IMPORTANT) Post by Big Dan on Aug 11th, 2004, 12:37pm Quote:
If she starts getting real bad... call the Doc back and tell them you need in for an "Emergency Appointment"... ... I've been able to get into the Neuro same day for that... .... Saving the good prayers for her... -Daniel Boyce |
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Title: Re: A small child with clusters (IMPORTANT) Post by Svenn on Aug 11th, 2004, 1:37pm Crying my heart out for this little girl :'( :'( :'( :'( :'( Usually small children has priority when things are happening to them.All i can do is say a prayer for her Svenn |
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Title: Re: A small child with clusters (IMPORTANT) Post by Filbert on Aug 11th, 2004, 2:28pm Just to add that my best wishes and hopes also go out to Lily and her family at this time. Hope the situation improves soon! Also thanks to Don for posting this up. All the best Filbert |
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Title: Re: A small child with clusters (IMPORTANT) Post by Little Deb on Aug 11th, 2004, 7:43pm Glad you found the thread. Please hang out with us...we are always here. And I agree with everyone, 6 weeks is too long to wait. Call them now, and get an order for oxygen for Lily. She can suck down oxygen at every hit and maybe get some relief that way. Demand that the docs see her sooner for pain management. Also, try ice packs during a hit, or put her right in front of an air conditioner to suck up the cold air. Avoid the common triggers......like heat, smoke, colognes, or ink smells. We all have different triggers. Some avoid things like hot dogs and stuff that contain nitrates or whatever. All you melatonin people...can a 3 year old take that before bed??? I have never researched it or used it. If she gets hit at night, ask the doc if you can give her benedryl before bed. Good luck and please keep us posted. vibes to Little Lily...............Little Deb |
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Title: Re: A small child with clusters (IMPORTANT) Post by E-Double on Aug 11th, 2004, 7:56pm Quote:
Yes but the pediatician should be consulted especially since this little girl may have additional health problems. I have had 2-3 -5 yr old students whose doctor had the parents give them melatonin because of sleep issues. Eric |
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Title: Re: A small child with clusters (IMPORTANT) Post by Gator on Aug 11th, 2004, 9:50pm I must say I have the utmost respect for you and what you go through. I don't know how I would have handled it if one of my children had had to suffer ch so young. And as if that were not bad enough, the ML4 as well. My heart goes out to Lily and to you as parents. If you could imagine a big grizzly bear sobbing his eyes out, then you would see me when I read Lily's story. No way I would be able to wait 6 weeks. Where my kids are concerned I am definitely that grizzly bear in protection mode. I would ask for and then demand sooner treatment. Like was said before, 100% oxygen is a God-send to most of us. It might help. Don't take no for an answer. I'd also ask about the melatonin. A lot of people use it with great effectiveness. There are some people who do the non-medication thing. They use combinations of vitamins and melatonin and such. Thomas - what is your regimin again? And have any of you from ClusterBusters ever heard anything about using the shrooms in young children? As much as I hate for there to be a reason to...welcome to our little family. Hang around and keep us posted and we'll try to help as best as we can, even if it is only to try to give comfort and re-assurance. I will close this now as I can hardly see to type. Lily and you are in my prayers. Mike Editted to add: Since I know we all have basically adopted her in our hearts, could you post a pic of Lily? I'd like to see the newest member of the family. We all post pics of our kids and grandkids all the time, but I'm sure we would all understand if you don't feel that is appropriate. Send me a message or an email if you need help. |
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Title: Re: A small child with clusters (IMPORTANT) Post by Carl_D on Aug 11th, 2004, 9:59pm Welcome Paul and Susan. I'm glad you found us. I had been thinking about Lily and wondered about o2 therapy. It might work to ease the CH and maybe abort, I'm not sure. The thing about o2 though is you have to catch it right as it is coming on, but not sure if it would work with Lily, as you said with the ML4 she is unable to communicate. My heart goes out to your family. I will be keeping you in my thoughts and prayers and please let us know what the neuro says. I would try to get the appointment moved up too, as 6 weeks is a long wait, especially for CH pain. Blessings, Carl D |
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Title: Re: A small child with clusters (IMPORTANT) Post by ExPat_jac on Aug 11th, 2004, 11:21pm on 08/10/04 at 15:38:15, Gator wrote:
THANK GOD the parents know what it is at least.... I started at age 7....my parents first started to try to identify the problem..then when no one knew what gave, finally figured I was just seeking attention... By age 12, I was being pumped full of anti-depression meds...and finally ignored...and learned to just keep my mouth shut and deal with it on my own.... Bless this poor childs heart....I feel for her...and am so glad at least her parents know what is going on at least...maybe she will be able to get some help... If I could, I'd take this child burden myself.... My heart goes out to her...if her parents or her EVER need someone to talk to...I will always be here.... Boy...did THIS bum my day out :( ExPat_Jac |
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Title: Re: A small child with clusters (IMPORTANT) Post by Drk^Angel on Aug 12th, 2004, 1:58am I wish I had any information about how to treat the CH at such a young age. I'm glad that you didn't have to go through the BS my parents did with doctors dismissing the symptoms and telling you "Children don't get headaches." Luckily... That bone headed attitude seems to be getting less popular these days. Hopefully, you will find a viable treatment very soon. She definitely has enough on her plate without CH adding to it. Good luck! *hugZ* PFDAN.......................................... Drk^Angel |
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Title: Re: A small child with clusters (IMPORTANT) Post by Pinkfloyd on Aug 12th, 2004, 2:49am on 08/11/04 at 21:50:13, Gator wrote:
Nothing that I know of. I imagine there was some of that back in the 60's but not for treating clusters. I'd be very concerned about the additional medical problems. Especially that there may be some ampa kaniate receptors involved. An additional concern with treating clusters along with ML4 is the optic nerve involvement. Sorry to say I can't imagine a more complicated situation and a suitable regimen should be devised by someone (or a team) that is very aware of all the complications involved. That's not to say there isn't a very "uncomplicated" treatment plan out there that will show good results very quickly. It's just something that needs to be looked at by people that can evaluate the entire picture. It is certainly something that shouldn't wait 6 days let alone 6 weeks. I'd hope that if nothing else, a call from Goadsby to the docs on the case now would be in order if Wendy can get that handled...( I know you can Wendy ;-) if not Goadsby, there have been several other very good docs mentioned in this thread that hopefully will respond. Oxygen sounds good but we have to remember that these are still developing lungs we're dealing with and dosages would have to be monitored closely and would require someone that knows how ALL developing organs will react with higher oxygen/blood levels, to make a call. Periactin is one of the most often used and very successful treatments for children. Again though, this young age and added concerns need to be taken into account. I have a feeling the 6 week appointment may have something to do with these docs wanting to do some homework themselves. Either that or they have put the cluster diagnosis on back burner due to the ML4. If that is the case, they don't fully appreciate the pain and suffering involved with clusters, IMHO. Best of luck and prayers coming, PF |
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Title: Re: A small child with clusters (IMPORTANT) Post by don on Aug 12th, 2004, 12:09pm You are probably already aware of this but I figured I'd cover the bases anyway. www.ml4.org |
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Title: Re: A small child with clusters (IMPORTANT) Post by alleyoop on Aug 12th, 2004, 12:35pm on 08/12/04 at 02:49:38, Pinkfloyd wrote:
Good Post! Researched and well thought out! |
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