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Camerooskis_Mom
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Preliminary Diagnosis
« on: Jan 4th, 2003, 12:01pm »
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After many months, begging to get 7 yo into specialists earlier, we finally get a prelimanry diagnosis of Cluster Headache with the opinion he has entered an interim within the last (2) weeks.  These last 4 months have been excruciating for him and extremely stressful for us.  I'm breathing alot easier now because I am armed with a plan to help my little guy but I am definately feeling very small & insignificant knowing what he has already been through and guessing what lies ahead.  I am told that the oxygen therapy coupled with antihistamine is very effective but at this point I need a little reassurance.    Any thoughts or suggestions?
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Margi
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Re: Preliminary Diagnosis
« Reply #1 on: Jan 4th, 2003, 1:03pm »
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Aw, I hate it when the Beast attacks little kids.  That's just not right.  Sad
 
Yes, oxygen is the safest therapy for kids, in my opinion.  I'm not sure how effective antihistamines will be for him, other than to help him sleep (if you get the 'drowsy' version)...  There probably are no abortives or pain relievers that he would be able to take though, so maybe they will help him with the congestion side of clusters.
 
If, by 'interim', you mean remission, then that's great news.  That means that he should be pain free now for a period of months or, hopefully, years.  
 
My husband gets clusters and the non-med route we take is oxygen, ice packs on the pain (or frozen peas/corn), lots of cold water (be careful with this treatment for a child though), and dramamine or benadryl to help him sleep.
 
You're not alone with this anymore, at least -- we are here to hold YOU up too, ok?
 
Praying for remission for him.   Hang in there, Mom.
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Mark C
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Re: Preliminary Diagnosis
« Reply #2 on: Jan 4th, 2003, 9:54pm »
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Thanks for your post Mom,
It is so wrong for your little guy to suffer so. I have a seven year old too and I cannot imagine him going through what I do. I hope and pray his last HA is really his LAST one, forever PF. Good luck Mom and God Bless.
Mark
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Camerooskis_Mom
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Re: Preliminary Diagnosis
« Reply #3 on: Jan 5th, 2003, 12:13pm »
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Thank you for the warm welcome and encouragement.  Unfortunately, with so little being published concerning CH and small children I have many unanswered questions.  
 
I feel better because they feel they have identified what he has been experiencing.  Having read many of the posts to the differing boards, I am left remembering those many nights when I was heart sick over his pain with nothing but loving words to comfort him (him wanting so much to be held but not being able to be still), I feel a little guilty because I have little breathing room now.
 
I do have a further concern regarding the Periactin.  Of what I have read it is safe for children so young with drowsiness and weight gain being the worst side effects.  He has been prescribed 4mg twice a day, well within posted parameters.  My question:  Based on personal experiences, when was the optimal time to take the prescribed dose as to not intefere with normal activities (i.e. school, etc...).  My husband and I are also debating how this is going to effect his very bouyant personality over a lengthy period of time.  Of course our follow up appt will be in a month, so I am unsure if they will request the continuation of the meds.  Any thoughts on the longterm usuage?  Maybe, I am really pointing out a question that I obviously forgot to ask, will he be expected to continue to take these meds although he is currently HA free?
 
You are correct, pain reducing meds had no affect and anything stronger they may have tried, they ruled out due to his age.  During his attacks he vomits violently so administration of oral meds at onset would have little effect anyway.  Because of his particular cycle, I was able to predict his attacks and plan for them but the pain meds did not lessen the pain nor shorten the attacks.  We also tried combination decongestant/antihistamine OTC meds, with no results.  I am intrigued by the Dramamine Mark mentioned.
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cecile
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Re: Preliminary Diagnosis
« Reply #4 on: Jan 5th, 2003, 3:45pm »
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I am so sorry for your little boy and your all family. it is so unfair Cry
 
As i am a stranger (from france) I don't understand when there is discussion about meds : the names are differents in here.
 
but I can confirm you that O2 is most of the time a good help. it don't stop the pain but, in my case, it realy helps a lot to deal with it. (it is a kind of anaesthetize ).
Sometime, the pain is so hard that i have the feeling thet O2 do not work that much. So in this case  i get next to the shower and i apply fresh / cold water directly on the pain and it anaesthetize a bit the pain.  
 
send all my love to your little boy, take care
 
cécile
 
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