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Topic: newbie mom with 6 yr old son with ch's (Read 1966 times) |
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crftymom
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newbie mom with 6 yr old son with ch's
« on: Jan 1st, 2006, 8:05pm » |
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I have spent many days going through info on this sight and many others trying to understand what we are up against, and wow am I scared. On dec 18 my son started having severe pains in his left eye and temple. I pushed it off to having a cold and lack of sleep. Two days later he spent from 3-6am crying and screaming in pain. Nothing helped. I took him in the next day. They gave me tylonal W/ codine and motrin. Needless to say samething the next night. They rushed him in for CAT, all clear. Now they believe this is what he has. We saw a neorologist on 12/29, after seeing Dawson's swollen eye, runny nose and extreem pain, he agrees. They just delivered the oxygen yesterday, but wouldn't you know it the headaches stopped. But we still notice the eye swelling and nose dripping. After everytning I have read, and hearing some of the stories on here, I am beyond scared. It is great however to know there are people that know what we are going through. I just hope he is done for now. He turns 7 on Jan 10, and I would love for him to have some peace for his big day. Thanks to all of you for the wealth of information this site and the people on it provides.
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Phil L
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Re: newbie mom with 6 yr old son with ch's
« Reply #1 on: Jan 1st, 2006, 8:22pm » |
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I just can't imagine a child suffering with this kind of pain. My heart and prayers go out to you, your son and your family - as this will affect your family. Sorry that you have to be here, but this is the right place for you to be!
Read everything (check out the list on the left) and also post in CH specific as it will reach more folks and you'll get a larger response.
Hang in there - your really in the right place here.
Phil
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Grandma_Sweet_Boy
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Re: newbie mom with 6 yr old son with ch's
« Reply #2 on: Jan 1st, 2006, 8:48pm » |
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It breaks my heart every time I read of another child that's been diagnosed with CH.
I expect that Helen (LeLimey) will see your post and she will get to you sometime tomorrow. Helen's little boy Jasper suffers CH as well and he's barely 4. Helen has learned some coping skills with him and because she to is a sufferer, she surely does know how to help him.
Please do as Phil said - read the tabs to the left of the main screen - the better educated you are, the more you can help your little fellow.
I have a granddaughter who will be 7 on January 6th. I can't imagine having to watch her or any of our other grandbabies go through this.
You have found the best place for support and education.
Wishing you good luck.
Hugs
Carol
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LeLimey
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Re: newbie mom with 6 yr old son with ch's
« Reply #3 on: Jan 2nd, 2006, 4:14am » |
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My heart sinks every time I see a post in this section. I truly believe this is the WORST part of CH, knowing kids can get it.
You're very lucky you have a neuro who believes that kids can get ch. Many don't.
Oxygen works fantastically and I can't recommend it enough. Its the first choice for me every time and the only choice I will allow for Jasper. Even if your son is now out of cycle (touch wood!) Experiment with the o2 at a low flow rate, get him comfortable using it and the mask and reinforce the idea that it's going to help him.
O2 works, it aborts every hit for Jasper within 5-10 minutes (at 15 litres per minute.) We both use clustermasx which are available from www.clustermasx.com and it is because of the unique design of this mask that you can get a 100% seal thus breathing nothing but Oxygen and thus being able to abort so quickly. You can buy a standard non rebreather mask. You may still need a paediatric one (They are TINY) These are the one's with the bag attached. Jasper took one look at it and wouldn't have it near him but he was only just turned 3 when he was diagnosed. (He's been suffering for more than a year now. He loves his clustermasx however and calls it his magic mask.
I'm in a "luckier" position than you in that I'm a sufferer too so he has seen me getting hit and knows that MY magic masx helps me and it's helped him adjust to it too.
He has quite a unique theory on it. He calls these ha's "Custard Headaches" and he is convinced that the "monster" gets into his mouth when he has to eat dinner's he doesn't like (You have to admire his thinking don't you?! Mum to mum  ) It then works up to your brain and it starts to eat it so if he breathes through his masx he can blow the monster out of his nose!
One of my friends here in England, a wonderful man by the name of Malcolm who is a fellow sufferer wrote a lovely story for Jasper which I'm going to post on a separate thread in a minute and you are welcome to take it and change the names if it will help.
My best advice is to talk to him about it, to let him use his imagination and come up with his own idea's of how to fight it. Jasper is under Professor Goadsby who is one of the worlds leading CH specialists and he has told me that it is quite possible for him to go into a remission period for many years. I know other adult sufferers who started CH at the age of 6, had one cycle and didn't get hit again until they were 24 so don't lose heart. It may happen for us like that too! From what I've seen cycles tend to be shorter in young kids.
Read up all you can here on the different meds available. The only meds available to kids are those which are available to us to and frankly, they are scary drugs for us and I for one will not put them into my little boy until I have no choice. There is little data on what is safe to give to kids and in my experience pizotifen and topomax were all that were offered. pizotifen is completely ineffective and topomax isn't called dopeymax for no good reason! I would look into both on here very carefully so you are fully armed with questions should your doctor recommend it.
Finally please remember this.. we are here for you 24/7. Whilst this will not kill your baby seeing him go through this pain is.. well you know. Sometimes words fail me. This is a horror that is beyond description. We will support you and help you every step of the way. Keep us informed please.. I for one can't get kids with CH out of my head and I worry. So even if he is fine, ESPECIALLY if he is fine .. let us know! Let us share THAT joy with you!
lots of love
Helen
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crftymom
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Re: newbie mom with 6 yr old son with ch's
« Reply #4 on: Jan 2nd, 2006, 2:36pm » |
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Thank you all so much for your support. It's great to know there are so many kind people out there going through the same thing able to give me advice and support, but also very sad too. They told me not set the oxygen over 6ml. Gave me a standard mask and that was it. I have a call for more info from the Neuro. He has only seen one other kid with this and they have sice trasfered, as we will soon to since we are a Navy family. I think that will be the hardest thing about this, moving and trying to find a new Doc. But we are going to San Diego and I am sure our luck will be pretty good finding a good Neuro there.
I am wondering something. I have read on here the people who have tried Prednisone felt a short term relief. That is what Dawson has been on for the last two weeks. Yesterday was his last dose. Should I expect that more then likely, he too will go back to the beast? I am worried now that the info I was given about the oxygen leval to use is wrong and won't help. Well I am off to read more info. It seems as though I haven't left this sight for days, and my brain feels like its in overdrive. But I want to be armed and ready when I go back to the Neuro on the 30th. Oh and Dawson is getting an MRI on the 9th. He wants to rule everything else out just to be sure. Thakn you again for all of your help so far. I will keep you posted.
And thank you Helen, your little one seems like such a character! You gave me some ideas on how to talk to mine.
Margo
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LeLimey
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Re: newbie mom with 6 yr old son with ch's
« Reply #5 on: Jan 2nd, 2006, 3:35pm » |
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Hi Margo,
6LPM sounds way too low. It needs to be higher. Also having the wrong mask won't help, you'll waste o2, you won't get a good seal and thus you'll be breathing normal air taking longer to abort the hit. Its a vicious circle. You NEED a higher LPM and a better mask. The clustermasx is the best option but any pharmacy should be able to get a non rebreather mask for you.
I'm glad he is having an MRI, that will rule out alot of other things. It can be very noisy though, will they sedate him? They did Jasper as there is no way on this earth he could have stayed still.
IF they sedate your son be warned, some kids react badly to it at first and cry and are very disorientated. If you know this and prepare yourself it will be easier to deal with and also gives you the chance to discuss it with Dawson. Nothing is so scary if you know what's coming! I didn't. No other parent won't know now if I can help it.
The pred may have halted stuff in it's tracks.. and it may not. Its anyone's guess hon, normally its only given as a short term thing while preventative meds kick in but I'd urge you not to consider those until you know how long his cycles are going to last. They usually take 2-4 weeks to kick in and they are very strong meds to give a kiddy if you can avoid it.
Look on meds sites such as http://www.drugdigest.org/DD/Home/AllAboutDrugs to read up about Pred. Its a nasty drug. Long term use is to be avoided and you need to know both sides of it to make an informed decision as to whether you give it to your son or not. Yes it works.. but we have one 25 year old here who has AVN from Pred and I myself have steroid induced cataracts. (From Pred)
Good luck on the 9th.. but I sincerely hope we chat again before that!
Helen X
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Azrael
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Re: newbie mom with 6 yr old son with ch's
« Reply #6 on: Jan 2nd, 2006, 5:28pm » |
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The flowrate on the regulator needs to be at least equal to the rate of respiration. More precisely, it should be equal to the rate of inhalation when using a simple mask without a bag, or enough to keep the bag of a non-rebreather mask with reservoir at least partially inflated. If the bag empties completely during use, then the flaw rate is too low and ineffective, and if the bag is still far from empty, then the flowrate is more than necessary.
Try to get a children's non-rebreather mask, and pay close attention as your child is using it (make sure it's getting a good seal around the face, the valves are moving freely and not damaged, the bag isn't emptying completely during inhalation). Make sure to keep your doctor informed of everything and don't change anything without medical approval. Remember that oxygen can be harmful if the proper precautions and proceedures are not followed.
PFDAN..................................... Drk^Angel
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crftymom
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Re: newbie mom with 6 yr old son with ch's
« Reply #7 on: Jan 4th, 2006, 6:29pm » |
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I am going to get a second opinion. I am not really happy with the blow off I seem to get when I have questions about Dawson and his headache. The Neuro has only seen one other child with CH and it was for a short time. I would like to try to find someone with a little more experience. We are in Great Lakes, IL. How do I go about this? Is there somewhere I can contact to find out about experience? I am going to try to hit the phone book but I was hopping there was a better way. Thank you for any help.
Margo
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Azrael
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Re: newbie mom with 6 yr old son with ch's
« Reply #8 on: Jan 5th, 2006, 11:04am » |
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Ya could check the docs recommended by CHers at http://www.ouch-us.org/chgeneral/doctors.htm Hopefully, you'll be able to find one in your area that can help.
Otherwise, call various neurologists in your area, and quiz them on their qualifications and experience. Contact your insurance provider, and see if they have any services available to help you find the best, most qualified doc. Check the phone book, or other local information sources for a nurse help line, or similar service that may be able to help you find a good doc in your area. See if there's a headache clinic in your area and check it out.
PFDAN................................. Drk^Angel
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LeLimey
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Re: newbie mom with 6 yr old son with ch's
« Reply #9 on: Jan 6th, 2006, 7:47am » |
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Hi Margo,
Just thought I'd say hi and see how you and Dawson are doing 
Hope all is going well
Helen (and Jasper of course!)
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crftymom
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Re: newbie mom with 6 yr old son with ch's
« Reply #10 on: Jan 6th, 2006, 11:53am » |
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Hi Helen!
Thank you for thinking of us. Dawson is doing good. Of the past 5 days he has had one day with 2 minor CH. He was at school and didn't tell any one. His teacher noticed his eye and asked if he was having one. He said no. He has a huge crush on his teacher and didn't want to leave! He stopped the Pred. on monday, so I don't know what now. Even though that helped, I don't want to use it again. Too many scary side effects for such a little one. We have practiced using the O2 and he thinks it's cool. His MRI is on monday and he is really excited. We told him that he was going into a tube that makes loud noises and looks like a space ship. Now he can't stop talking about it. How has your little one been? Hope well. It was nice to hear from you and hope all is well. Talk to you again soon.
Margo
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LeLimey
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Re: newbie mom with 6 yr old son with ch's
« Reply #11 on: Jan 6th, 2006, 1:33pm » |
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I think explaining as much as you can has to be good. Jasper gets some.. I hesitate to know what to call them but "phantom attacks" is the best I can do where he gets all the symptoms but doesn't seem to be in any/much pain. If he is in any pain it's the sort that makes him want to push his fist into his eye periodically and not much more. He gets all the autonomic symptoms but that seems to be the sum of it and that lasts for about an hour. He seems to get those at pretty much the same time daily so it would be worth asking his teacher to monitor that and log any activity.
I don't ever ask Jasper how he is feeling if his face "droops" - I wait for him to tell me. Working on the principle of if it's bad he'll tell me and if it isn't I don't need to be reminding him about it.
Good luck for Monday! Isn't it Dawson's birthday on Tuesday too? Keep the emphasis on how exciting the week will be rather than anything else. I don't know about you but exictement is contagious in our house!
Hope you have a great weekend, we all check in so don't feel you won't get an answer if you need one and let us know how you get on with the MRI when you can. I don't know how it works there but here you are very unlikely to get the result the same day, its usually a few days to a week but no news is good news.. you don't want them to be finding anything!
Take care, I'll be thinking of you!
Helen
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LeLimey
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Re: newbie mom with 6 yr old son with ch's
« Reply #12 on: Jan 8th, 2006, 3:30pm » |
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Hi Margo,
Just wanted to check in and say hi and good luck for tomorrow! Hope everything goes well with Dawson's MRI.. we'll all be thinking of you both!
(and I'll be thinking especially of you.. I know how tough it is seeing your kid go through it)
lots of love
Helen X
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outofcommission
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Re: newbie mom with 6 yr old son with ch's
« Reply #14 on: Feb 24th, 2006, 7:17pm » |
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bless you mom
i am 29 yo. i started getting chs when i was 13yo. my mom went though doctors appointments, dentist and sinus specialist visit only to find nothing wrong with me. so my mother did some research and found out about chs. mom bought several books and figured this out on her own. it seems that this condition is rare and hard to find a cure. mom at that time and now my wife seemed to be the only one who understood this. there is nothing in the world better than a mothers love and understanding. i am currenly married, have a home and a wonderful baby boy and i am doing ok. don't be scared of these episodes or at least don't show it. i know it breaks your heart to see him in that much pain. this may be something he may have to deal with and try to explain to people for the rest of his life. i currently haven't had a ch for about five years. just remember mom that he loves you and don't stop searching for answers.
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