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6 year old with CH (Read 2190 times)
sbuti
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6 year old with CH
Sep 17th, 2012 at 12:49pm
 
Hi.  My name is Sarah.  I am posting on here looking for some answers or solutions to my son's CH.

He started getting headaches back in February 2012.  Initially when he started getting them he would break out in a 103 degree fever and rash.  I had him at the doctor's a few times a week trying to figure out what was going on.  He has been tested for diseases/illness that have headaches as a symptom and all have come back negative.

His pedatrician sent me to see a pediatric nuerologist.  The nuerologist quickly diagnosed him with migraines and treated him as such.  The migraine medication did not work so we were right back to square one with finding out what is wrong with him.  I explained to the nuerologists that he is getting 5-6 headaches a day, they are accompanied by a runny nose, eye pain, droopy eyelid, on the right side of his face.  The nuerologist ordered a MRI of the brain to make sure it was not a tumor.

The MRI came back negative and he was then diagnosed with cluster headaches. The doctor perscribed him prednisolone (to take over a 5week period), Imitrex, Melatonin, Oxygen and this was supposed to stop the attacks.

Unfortunately, all of these medications have not seemed to even phase the headaches.  They continue as strong as when first surfaced.  They are like clock work down to the minute same time everyday, they do not miss a beat.

My son is in terrrible pain when he has the episodes, he screams on the top of his lungs as if someone was slowly torturing him to his death, he cries and looks as if he were going to push his eye right through his skull.

It is so heartbreaking to see him in so much pain.  I have spent countless hours looking into means of preventing/stopping the CH.  I have changed his diet, used the water treatment, tried herbs and other natural means.  Nothing is working to alliviate his pain.

I am just here looking for answers or help for my son.  I am in the process of looking for a GOOD nuerologist.  My son's seems to not have the time of day, were just another number to push through the door. 

If anyone could possibly help me, give me advice, a name of a good doctor, I would greatly appreciate the help.  I don't care if I have to travel to the moon to see the doctor.  I just need to get help for my child.
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Brew
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Re: 6 year old with CH
Reply #1 - Sep 18th, 2012 at 9:52pm
 
Not sure how to approach this from a pediatric perspective, but many around here have found great relief by boosting their serum 25(OH)D level. It happens by taking larger than normal amounts of vitamin D3.

Read through the following thread, make some notes, and talk to your son's neurologist about it.

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Tussilago
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Re: 6 year old with CH
Reply #2 - Sep 19th, 2012 at 2:28pm
 
Poor child is all I can think :S

And poor mother...

For what it's worth... I'll pray for you.
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sbuti
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Re: 6 year old with CH
Reply #3 - Sep 20th, 2012 at 1:06am
 
Thank you for your thoughts and prayers.

Yesterday I was called to come pick my son up early from school around 1:30pm, he was having a CH.  I brought him home and administered oxygen.  We got the headache to subside and he fell asleep.  No sooner did he fall asleep he was up screaming with another CH.  We repeated the process, this continued throughout the afternoon and night.

I became extremely worried about the amount of headaches he was having in that time frame.  He had a total of 6 within a 9hr span.  This is very unusual for his normal (not saying CH are normal) cycle of attacks.

Finally, at 11pm my husband and I decided to take him to Children's Hospital emergency room. (This is where we typically go to see his neurologist)  Of course as I figured they pretty much told me to go home and call back in the morning.  I refused to leave bc I couldn't bear to see my child continuously in that much pain.  The attending doctor tried to administer what they were calling a migraine cocktail, which turned into another fight.  Because we have been down the treating as migraines road. 

The hospital staff eventually got the neurologist involved and decided to administer him Indocin.  It was not a pretty reaction to the medication almost immediately he was doubled over in pain screaming his stomach hurt.  I just sat there thinking to myself what on earth more could possible happen to my son.

We were told just to sit and wait to see if he had another reaction to the medication, we waited and waited after another hour of we finally were allowed to go home.  My son slept the hour car ride home and was completely zonked out when he was carried up to his bed.  I was finally able to unwind and fall asleep myself.  I woke up this morning to the sun shining on my face, I have to admit I panicked a little bc it has been 8 months since I have gotten more than 3 hours of solid sleep a night.

I checked on my son and he was still sound asleep.  I just stood there in disbelief and almost cried tears of joy, bc he to finally has gotten one night of sleep in 8 months.  I hurried and got on the phone to call practically every pharmacy around to find this medicine they administered to him last night.  We got the prescription filled and administered it and just anxiously waited and waited for a headache to come.  Well it is 1AM my time and he has yet to awaken with a headache.... it has been 24 hours without any pain. Smiley  I am in shock and disbelief and just keep telling myself not to get to excited.

They would only give him a two week prescription and that is all he can take.  If it doesn't work then they are going to put him on another round of steroids.  I was just curious if anybody has tried the Indocin and if you have, have you had any positive progression with the CH using it?
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idorko
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Re: 6 year old with CH
Reply #4 - Sep 20th, 2012 at 12:59pm
 
God. These kind of headaches in anyone is unfair. In anyone who is 6 is just down right cruel. :/ I hope that you and your family can keep your hopes up in the face of these horrible headaches.

When I joined this forum I got a PM from someone telling me about the condition called Chronic Paroxysmal Hemicrania. I did some research, and it's like cluster headaches in the area of pain, but has no neurological symptoms. It also totally responds to Indocin (indomethacin the NSAID that they gave your son). I'm not sure if your son is having neurological symptoms with the headaches as I'm not a doctor, but it's worth bringing up to your neurologist about CPH to see what he thinks.
Best of luck. I know you're in my thoughts.
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Re: 6 year old with CH
Reply #5 - Oct 4th, 2012 at 3:14am
 
Sbuti,

How is your son doing? I see your last post was around 2 weeks ago, but I wanted to reply because I have some knowledge about Indocin.

I was on it for a while and they helped my clusters, a little bit... not much. My headache specialist, however, had put me on it at the time because he told me for one condition, Indocin is basically a magic bullet. Paroxysmal hemicrania can manifest itself very similar to clusters, but I believe tends to come in even more attacks over the course of the day, which sounds very much like those 6 in a 9 hour span your son had before going to the hospital. Anyway, from what I understand, Indocin is first-line treatment for Paroxysmal hemicrania and should work WONDERS whereas it does little for CH because it is only a strong anti-inflammatory.

So, I don't know where you are right now with the searching and learning and medications, but I wonder if it's a possibility your son has paroxysmal hemicrania rather than clusters. Of course, I'm not a doctor, but it's amazing the response he had to the Indocin after the time he's been having. Just something to think about, and maybe ask a good HEADACHE SPECIALIST (better than neurologist!).

Please let us know how you're getting on; you're in my thoughts.
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« Last Edit: Oct 4th, 2012 at 3:15am by N/A »  
 
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Tim in Texas
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Re: 6 year old with CH
Reply #6 - Nov 20th, 2012 at 12:06am
 
Damn, such a sad story.I wish I could unread it. Oh you poor family. I hope his cycles end soon. And as much as you don't want to hear it, he will be dealing with them for a great deal of his life. Everyone here is scrambling, beggeing, and pleading for that Magical treatment for these dreadful head aches. I PRAY that I'm wrong about his cycles. Please keep him in a dark room he will NOT want to lay down. Try not to talk to him much. He may or may not take a cold compress and it will take awhile to teach him breathing exercises. Its heart-wrenching know that a little boy is having to endure this kind of pain. The one other thing I do is apply pressure at the base of my neck and right between my eyes on thebridge of your nose. They will hardly give him any "real" relief like what you would hope for. Sometimes they help me a little, but most of the times they don't. Everyone who lives with these has adifferent methods of managing with them. I hope my information but you probably are already aware of them. I have a 4 year old boy too, my biggest fear is that he will get them someday. I wish you and your family the best of luck in finding your son relief.
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