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Posted in Untitled on 26 Aug, 2010 - 1:14 pm

Hi Martine,
The differential diagnosis that we are currently undergoing with Jack is between CH and Paroxysmal Hemicrania, not chronic though. According to Dr Goadsby, PH does not respond to O2 which is the easiest and safest way to make the distinction between the two. Though of course not all CH sufferers respond to O2 either. Unfortunately the meds for one can impact negatively on the other, so it's important to try and get the correct diagnosis before attempting any prophylactic treatment.
Hope this helps
Al ;^)


Posted in What age did you get CH? on 13 Aug, 2010 - 5:04 pm

Thanx David,

I appreciate the support of you and all the others on the site who have posted messages.

While not wanting to trivialise CH, the visions I had when Jack had his first attack involved watching my child waste away with a brain tumour, so, from that perspective, it could be much worse. Yeah, Mums always think of the absolute worst scenario.

We are very lucky that we have a paediatrician who is completely on top of CH. Even being aware that it can strike children, which many medical professionals dispute. We are still waiting for a definitive diagnosis as it could possibly be one of the others in the TAC group. This means for safety's sake the only treatment we are considering at this stage is O2 as the drugs that are most effective for CH can have a negative impact on the other option.

We are also lucky that it was caught in his first bout period, though that means that it hasn't settled into any kind of routine yet. Currently, he only has the attacks at night which makes it much easier to manage. We'll have to wait and see what happens as it progresses. Hopefully with the the major advances being made by people like Dr Goadsby, we'll get better, more effective treatments sooner rather than later.

I wish you and every other CH sufferer pain free days.

Cheers
Al ;^)


Posted in What age did you get CH? on 13 Aug, 2010 - 11:42 am

Hi Shell,

It was the BBC article on Dr Goadsby's team's findings that led me to contact him. I wanted to check the relevancy and the availability of the test for Jack. He is no longer in London, but is not much closer. He is head of neurology at UCSF, but was in Australia for a short visit and very kindly offered to see Jack. Being Australian he has maintained his registration in Australia, so there were no problems there. We saw him in tandem with Dr Zagami who is at the Uni Of NSW Neurology Dept at the Prince of Wales Hospital in Sydney. Dr Goadsby speaks very highly of Dr Zagami, so he may be another option for your partner to see. There is another doctor in Melbourne, Dr Stark, that Dr Goadsby speaks highly of so I guess it depends which direction you want to travel. lol.

Hope this helps

Regards
Al ;^)


Posted in What age did you get CH? on 12 Aug, 2010 - 5:02 pm

Thanx Shell.
I appreciate your support, and your kind words. This site and the members of it are a fantastic resource. I am so lucky to have found it.

All went well yesterday. Jack got 2 certificates from the hospital for being so good, so he thinks he's pretty special right now. lol.

Cheers
Al ;^)


Posted in Have a laugh on 10 Aug, 2010 - 6:01 pm

Made my day. Thanx for posting. ;^)


Posted in Untitled on 10 Aug, 2010 - 2:25 pm

Thanx for that Shell. I will pass on to my son's neuro. No one dealing with CH needs to be given a hard time over getting their O2. Hopefully he'll start recommending BOC too. I know where I'm going.
Cheers
Al ;^)


Posted in Untitled on 09 Aug, 2010 - 10:51 pm

Jack is also seven. Born just over 6 weeks prem. Thought he might be a lefty early, but he has settled on his right hand. Has some fine motor issues but otherwise developed normally.
He did have night terrors when he was a toddler but grew out of them. His blood group is O+.
No smoking or drinking, though his father and I both do. Didn't smoke or drink when I was pregnant though.
Hope this helps with your survey.
Cheers
Al ;^)


Posted in Untitled on 09 Aug, 2010 - 10:40 pm

http://www.airliquide.com.au/

This is the mob recommended by my son's neuro and all that was required was a letter of supply from the doctor. They are in all states.

Cheers
Al ;^)


Posted in Untitled on 09 Aug, 2010 - 10:17 pm

Hi Martine,
I have a seven year old son who is in the process of a diagnosis between CH and one of the others in the TAC group. The onset for my son has been much milder than what you are describing, but I do know that we have been exceedingly lucky in that. Can't help much - being so new to this myself - other than to offer my support. The other people here are incredibly helpful, with a wealth of knowledge. Ask any questions you have. Someone will have the answer.
Good luck
Al ;^)


Posted in What age did you get CH? on 09 Aug, 2010 - 9:59 pm

Thank you all for your posts. We were very privileged to have a consult with Peter Goadsby last week who is confident that Jack is suffering from either CH or one of the other TACs (some godforsaken 50+ letter name that has left my brain). We have an MRI on his brain and pituitary gland Wednesday that will give more info, and will start O2 as well. I'll keep you posted on how we go. I must say that we have been very lucky in the way these have manifested in Jack. Short in duration and well spaced. Reading some of the stories posted on this site is heartbreaking. I wish you all the maximum pain free time possible.
Cheers
Al ;^)


Posted in What age did you get CH? on 01 Jul, 2010 - 9:25 am

Thanks Barry.
He is seeing a specialist paediatrician and we are investigating other conditions as well. He has an MRI in a couple of weeks to rule out any biological causes. I had never heard of them until his paediatrician mentioned them yesterday so I am just trying to get as much info as possible. I was curious that they were being offered up as a likely possibility when I could find no records of cases in a child this young‚ hence my query. Thanks again.
Cheers
Alison ;^)


Posted in What age did you get CH? on 30 Jun, 2010 - 10:15 pm

Thanx Matt and Heather‚
I have trawled the site pretty extensively since leaving this post and have found some great info‚ including the name of a specialist not too far from me. Thank you for responding to my call for help. I appreciate your good wishes.
Cheers
Alison ;^)


Posted in What age did you get CH? on 30 Jun, 2010 - 6:57 pm

Hi‚
I have joined this group as just today it was suggested by my 7 year old son's paediatrician that he may be suffering from cluster headaches. I knew nothing about them till today‚ and this is one of the first few sites I have investigated‚ but I have seen no information on people suffering them this young. Can anyone tell me if they started to have CH this early in their lives‚ or knows of others who have ?
Thanx
Alison ;^)