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Supporter's Corner >> Children and Cluster's >> newbie - mom of 12yr old girl http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1485538823 Message started by MumB on Jan 27th, 2017 at 12:40pm |
Title: newbie - mom of 12yr old girl Post by MumB on Jan 27th, 2017 at 12:40pm
Hi All. I have an 12 yr old daughter who suffers with ch.
I didn't know at the time, but looking back I'm sure she was born with this. I remember her, tiny, in her cot, sound asleep, like an angel. Then as if a demon or satan himself had entered the room, that only she could sense, she would wake up screaming with an inconsolable cry that I couldn't take away or understand, no matter what I tried. As suddenly as the demon would come, so he would flee the room. She would, without memory, fall back to sleep in a turn of a second. Please no judgement or crazy thoughts of me, although through reading all your posts, I think I'm safe. I inquired about an exorcist, as that is how 'freaky' it was, how it would come and go and months/years in between of it happening again, and there was no repeatable pattern, or so I thought at the time. As the years have passed her ch has morphed from different patterns to different lengths of time in between attacks, with different meds and tricks along the way. Off topic, this is the first time I have been able to use words (all learnt on here) to explain this, and i know it will be understood. Must mention how 'weird' it has been explaining this to teachers, friends, family. If I didn't have a daughter with ch... i don't think I would ever have known about it. I have not met anyone, or know of anyone who suffers from this here. The was a message somewhere that newbies should let 'you' know the history and story of a new ch sufferer, but not sure where to post or write this? Just reading through the message boards, all the links.... I have already learnt LOADS!!!!!! She has been in a cylce, having an attack for the last 6 days, the worst she has had in over a year. I think its close to the end now. During this last attack i have been close to this forum and the posts. Her and i have discussed the Kip scale and terminology we can use so I can understand how she feels, when she feels, and basically do what I can to 'fix' her. I actually can't explain how awesome it has been talking with her about this after being on here. We understand each other so much better now when she is going though this. MumB |
Title: Re: newbie - mom of 12yr old girl Post by Peter510 on Jan 27th, 2017 at 6:25pm
Hey MumB,
Welcome to CH.Com. We love and respect supporters here. Your post is very moving. I can't imagine what is was like to have a baby you are constantly worried about and not knowing what the problem is. Yet here you are, still searching, learning and caring. That's why we love supporters here. Give us details of your daughter's treatment and medications history. There is a world of experience here to help but we need to know what has been tried and, therefore, what hasn't. Things will get better. Peter. |
Title: Re: newbie - mom of 12yr old girl Post by jon019 on Jan 27th, 2017 at 7:31pm
Hi Mum...Welcome! You done found the RIGHT place....and you already know it!!!
First...what Peter said...absolutely... This one made me cry...I'd rather jump in a wood chipper than see a child with CH... and exorcism sounds about right...we call it "the beast" for a reason...it seems alive, evil, and otherworldly............... Best Jon |
Title: Re: newbie - mom of 12yr old girl Post by MumB on Jan 28th, 2017 at 11:56am
Hi Jon and Peter.
THANK YOU FOR REPLYING. This is a bit surreal, had to go to a few places before i even found your replies. Still trying to navigate my around this site. lol. Ok, so to start. It was only when she was 6, that a friend and I 'diagnosed' her through research. However I knew when she was 4 that something was horridly wrong and it wasn't a once off thing or just co-incidence or a migraine (as many doctors said), or dehydration or etc..... Bearing in mind she was so tiny, I was hesitant to try the 'hard stuff'/adult meds, so i tried every pediatric med possible. Nothing. Against all their advise I started trying Nuerofen, Mybuelen, Stillpayne, and then eventually Myprodol. The myprodol worked but it took forever. When i say it worked, it lessened the pain, but the cycle would still run it course for about 4-5 days. Attacks at mid morning about 9-10, late afternoon about 3-4, and then at night at about 10-11. This pattern lasted for about 4 years, occurring every 4-6 months or so. She would get nauseous only during the attacks - figured out later.. it was the meds not the headaches (all the meds). But we had a treatment down pat by then. Feel the shadow (she would say: my eye is twitching and feels too big for my head), almost within seconds went to an 8 (what she would described as someone stabbing and punching her eye from inside her head). Reaching a 10, when she would hit the bed, throw the pillows, kick her legs and generally just scream and rant. Even though it's uncommon for ch's to seek quiet and dark, she says it is unbearable in any light, even the faintest of light. We would usually catch it at the first shadows, having figured out that the myprodol takes too long to dissolve on its own, I would open the capsule and dissolve the powder in water and syringe it into her mouth, giving her a slice of dry bread so to keep away the nausea. We managed. It seemed that the cycle would still run, but with less intensity during majority of the attacks. We thought we had won a small battle. |
Title: Re: newbie - mom of 12yr old girl Post by MumB on Jan 28th, 2017 at 11:57am
Part 2 (wasn't sending)
She would often miss school because of ch. A definite trigger each and every year was sports day and gala. Bear in mind we are in SA so temps reaching 38 deg on average days. So my thinking, heat, dehydration, screaming and shouting, over exertion etc. So i banned her from participating. The rotten school insisted she still be present on the side lines. This didn't work.. her friends were dancing and signing their war cries, friends needed encouragement, excitement was there... how could we expect her to sit motionless and not get involved. Each time i wrote to say she will not be attending, each time they responded it was COMPULSORY!. So of course, fingers to them! I moved her the following year. I eventually found a great Pediatrician, at about age 7, who agreed that she had the symptoms and did indeed suffer from Cluster headaches. Explaining there was no 'test' as such for CH, basically they would take the history. This would form a patter/symptoms to indicate CH. Other options to look at was a brain tumor (can you imagine what went through my mind). That's it!!! She has a brain tumor!!!!!!! I am going to loose my child!! Injecting myself with a pretend, calm the F down injection, i listened further. The likely hood of her having a brain tumor vs ch was of course extremely low. He suggested we get a CT and a MRI. Not having medical aid, we couldn't afford the private hospitals, and of course a government hospital visit was usually followed shortly by a funeral, and you were only going to get those scans if it was life threatening. One day out at the shops, age 10 plus, and it started. I didn't have any Myprodol on me. Off to the drug isle, there was a selection of Disprin, Ponado and Grandpa. Fearing in the back of my mind this wasn't going to work, disprin was week, she had tried most adult meds, there was no way this disprin was going to work. We won't catch it in time, she's going to have a full blown attack for days, miss school, miss her concert. She couldn't deal with this again! So with disprin as the best choice of drug available, I opened the packet and the 'not yet paid for' water, and I gave her two tabs. We of course left the shopping and headed home to Myprodol. As much as I was trying to stay calm, and seemed successful at doing so, I could see her anxiety was building. The look in her eyes, fighting the acceptance of what she knew could well be coming. The anxiety was peaking, the pain was coming, she was freaking out because we weren't getting home soon enough, it reached a 6/8, couldnt really tell between the fear or the pain. I could NOT BELIEVE IT... by the time we where were home she said she was feeling tired but the pain had subsided. She lay down and passed out. She woke up at a 0......????? No..... it couldn't have worked?? and so well??? The attack did come again a few hours later, mild, about a 4/5. Then with even more hours in between, another one, at a 3. By this time I had come down to 1 Disprin. Then it disappeared. OMG. Disprin!!!!!!! As elated as i was that a seemingly harmless drug, cheap, available, was actually working, I had a very opposite motherly feeling. This many years I had pumped her with stuff that no child should have. My chest would be bruised from crying from seeing her in pain, never mind the pain she was experiencing all this time. And it was Disprin! Why hadn't i tried it before? Why did i just dismiss it? If i had just tried Disprin, something so common..... ( i have been told since by another GP, that Disprin given to kids can be super harmful - which is against what almost every mother from the 80's would tell you - ie. my mother. Apparently that's all she ever gave me, swore by it. Go figure? |
Title: Re: newbie - mom of 12yr old girl Post by MumB on Jan 28th, 2017 at 11:59am
Part 3
Anyway, feeling like the shitiest stupidest mother that had lived, we get up and move on, learn and grow. So for the last year plus, we have been using Disprin. It was almost like a miracle drug. It broke up her patterns, took an 8 to a 4/5 within 15 min. (although this was once, as afterwards she was talking them when she felt a 1/2). Also bearing in mind by this stage she was 11, with a much better understanding of what was biologically going on, she knew what her triggers where, she knew the routine. She could self medicate as soon as she felt a 1/2/3. And the Disprin just seemed to keep it right there and take her back to 0. Attacks threatened to come almost monthly, meaning she said she would get the shadow, take her disprin and that would be that until a couple days, weeks later. I would call this remission for her.? Well it has felt like it. Anywho - this new school was amazing, also not understanding CH, however were prepared to assist in every way. Here she would feel a shadow coming, let the teacher know, take her tab, taken to the library to lay down on the couch. She would generally fall asleep (yes, the shadow would leave and not come back, but she would need to have a nap, although there is no side affect of drowsiness with Disprin, not sure ifs its that or her body needing a nap from even 15 min of the anxiety of thinking an attack coming just exhausting her). She is allowed to sleep for as long as she wants or needs. Usually about 30min-60min. She wakes up and joins class again. And similarly at home. When we are out, it's a bit trickier, but we handled. We have been in bliss for over a year!! |
Title: Re: newbie - mom of 12yr old girl Post by MumB on Jan 28th, 2017 at 12:02pm
Part 4
Then recently - last week - Sunday through to Friday the demon returned!! Disprin wasn't working. Through research I found dividing doses and giving it over 10 min intervals, works. It takes longer, has the same end result, but is actually less medication overall, saving her tummy lining. So this last attack we have experimented with different doses of migril and disprin and the combinations and the time intervals. It has helped manage the pain fairly quickly, but the cycle was set and in full force and back to previous patterns of three times a day. It reached its peak on Thursday night - reaching an 8, fearing a 10. It backed down, with Friday getting better and today nothing!!! The cycle has stopped. Not 1 shadow today - we are back at zero. I hope! Something i need to mention, not to grose you boys out, medically I am concerned it is linked, and if it is what it may mean for her. She has matured very quickly at got her first period six months ago. So basically at 11yr 6 mnth she matured. No attacks for the last 6 months, so all was cool. This last attack, she started her period on the Wednesday, the ch started late Saturday night. Days apart.... but though it was worth a mention. On that splendid note, it has been awesome to splurge this all out.....p hhheeeww. If you have gotten all the way to this part - THANK YOU so much for reading our story. xoxo Wow, didn't think I had so much to say. |
Title: Re: newbie - mom of 12yr old girl Post by MDR on Jan 28th, 2017 at 6:07pm
MumB,
You should Talk to Batch on the vit.D3 regement for your daughter. Mark |
Title: Re: newbie - mom of 12yr old girl Post by MumB on Jan 29th, 2017 at 3:56am
Hi Mark
Thanks! Have been reading about the vit D3, need and will read more, thank you for your suggestion. |
Title: Re: newbie - mom of 12yr old girl Post by MumB on Jan 29th, 2017 at 4:10am
HI Peter.
I think you are my new best friend!!! A dad of two girls... aaahh, how old are they? A mom on here has ch as well as her son. Can't imagine that!!!!! (wood chipper situation for sure) Do your girls suffer from ch, or anyone else in your family? We tried the oxygen once or twice. This was during an attack at the GP rooms. I suggested it based on what i had read and the GP didn't have an issue. It didn't seem to bring much relief, and then it was shortly followed by by an injection that would make her sleep, can't recall the name, both times i was in a bit of a state. But not sure he had the Litre ratio right, which I have read makes a difference. I found an agent here who rents them out. Thank you for that...... The preventative sounds great, I just need to research more about the long term affects they may have. You play this dance between pain relief at any cost, but then the constant push at the back of your head knowing its not healthy. Catch 22. DO you know of anyone or posts that talk about natural remedies (i know... laughable that this demon would respect a leaf)... but i thought it was worth a try...... Wow, its so great to hear people are getting 'better', or at least are understanding it better and them selves. She can get better, this won't be like this forever, we just have to find what works. Going to read up on some links. Thanks Peter. |
Title: Re: newbie - mom of 12yr old girl Post by MumB on Jan 29th, 2017 at 4:23am
Hi Peter.
Sorry, the most important was the Neurologist. Yes I have been searching, and saving. This is on the cards asap. Thanks |
Title: Re: newbie - mom of 12yr old girl Post by maz on Jan 29th, 2017 at 7:14am
Hi MumB
It's such a tragedy when kids have CH. I can't begin to imagine what a baby goes through when they can't even tell you what hurts. As the others have suggested, pure oxygen delivered at a rate of 15 litre a minute minimum, with a non rebreather mask will be a godsend at home. The high flow rate and the correct mask are vital here. Seriously get your daughter on the vitamin D3 regime. If you send a PM to Batch he'll tell you all you need to know. A good abortive - the best in fact, is sumatriptan auto injections. The pills are not mauch good as they take too long to work, but the injections are brilliant and work in 5 - 10 minutes. Not nice, but a walk in the park compared to CH. Has your daughter tried Red bull energy drinks. Easy to get and easy to carry around. At the very first sign of pain - don't wait till it ramps up - drink it down really fast in a few big gulps. It's the combination of caffiene and taurine in a sudden hit that does the trick, so any energy drink with those ingredients will do. It doesn't work for every one, but many of us have had success, so worth a try. Do keep coming back as you will learn all there is to know here. I really hope you find something soon that helps. Maz. |
Title: Re: newbie - mom of 12yr old girl Post by Peter510 on Jan 29th, 2017 at 1:14pm
Hi there,
My girls are in their 30's now.....just spent the afternoon swimming with my 2 grandchildren.....that's what I meant by " it gets better". Nobody in my family has CH and I come from a large family. There can be a heritary connection but not in my case, thankfully, because I wouldn't wish it on them. Our good friend Batch, a fellow sufferer, has spent years devising the anti-inflammatory plan and it certainly worked for me and many many others here. Anti-inflammatory, D3....it's the same thing and best described in part 2 of the link I sent you in my earlier post. That's why you see his named referred to by so many. I would ask you ask your Doctor about home Oxygen. Again, it has to be taken at 15 litres per minute flow rate, but it is a standard abort for CH. Keep the posts coming. Peter. |
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