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  #1  
May 6th, 2009, 04:20 PM
joandsarah77's Avatar Platinum Supermommy
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Location: Australia
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We came back from seeing the specialist again. Really a waste of time. She told me she didn't know much about the listed things that can go along with PH such as possible artery problems or infections and that she will read up. Gee would have been nice if she had 'read up' before my appt. Genetic testing is apparently $2,000 a pop, to test one gene when there may be three or more genes or not that are the cause. Basically its too rare a condition to warrant any public health money into research. I'm not impressed. I know its a lot of years away, but I can't help but think what if Sarah does have this and has her first seizure is while driving. (The teen years are apparently the 'normal' starting point in developing sezures with PH) I would be less likely to think of this if I didn't think she has learning difficulties, but I'm sure she does. I think it was better before they diagnosed my PH.

Apart from all that we are still doing the usual. Sarah still goes to dance and kids club. We now go to a music program for Daniel. Were still getting over our last lot of colds and coughs and had days off, so I guess its a heap of revision once again.
The best thing over the summer was that Sarah pratically taught herself to swim. Hopefully next season there will be an opening in the privet swimming class program just down the road from us so she can learn the proper methods.
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  #2  
May 6th, 2009, 04:54 PM
Butter's Avatar Heather the Mama Duk
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Sorry the appointment didn't help. I'm glad life is continuing as normal for y'all.
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  #3  
May 6th, 2009, 05:23 PM
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That stinks they didn't offer any more information. That's cool that Sarah taught herself how to swim.
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  #4  
May 7th, 2009, 03:57 AM
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I'm sorry. Is there any ways to still get the test without paying so much, at least all at once? A payment plan or something maybe?
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  #5  
May 7th, 2009, 05:27 AM
Jenneve's Avatar Mega Super Mommy
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I'm sorry it didn't go as well as you'd hoped. Sometimes I wonder what doctors went to med school for. It seems that 9 times out of 10 their answer is "I don't know..." Anyway...sorry got off on my own little rant there. Good for Sarah teaching herself to swim though!
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Happy Homeschooling Mom to:
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  #6  
May 7th, 2009, 06:31 AM
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Im sorry it didnt go well for you. Is PH Pulmonary Hypertention?

I know what you mean with doctors though. Everytime I have gone to the hospital for my POTS symptoms, I have to explain to the doc what POTS is.....
Makes me feel comfortable in my treatment...
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  #7  
May 7th, 2009, 10:42 AM
Jenneve's Avatar Mega Super Mommy
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Quote:
Makes me feel comfortable in my treatment...
Yeah, or when they say "What do you think?" Ummm, if I knew I wouldn't have to come to you!
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Happy Homeschooling Mom to:
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  #8  
May 7th, 2009, 06:09 PM
joandsarah77's Avatar Platinum Supermommy
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Quote:
Originally Posted by Tropicgal10 View Post
Im sorry it didnt go well for you. Is PH Pulmonary Hypertention?

I know what you mean with doctors though. Everytime I have gone to the hospital for my POTS symptoms, I have to explain to the doc what POTS is.....
Makes me feel comfortable in my treatment...
Lol that's like my regular GP, when I mentioned my recently diagnosed PH he goes huh?

Well some maybe slightly better news! My Nuro rang me up this morning and said this other Dr she knows is interested in finding out more about the condition and that we may be able to get Sarah in for an MMR with a child's specialist.

Sorry only now saw the question Is PH Pulmonary Hypertention? No it's a brain condition called Periventricular Hetrotopia
http://ghr.nlm.nih.gov/condition=per...larheterotopia It's a rare condition which is why getting answers hasn't been easy.
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Last edited by joandsarah77; May 7th, 2009 at 07:45 PM.
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  #9  
May 8th, 2009, 09:26 PM
MissyPrincessEha's Avatar Platinum Supermommy
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Jenn, I am cracking up! "If I knew, I wouldn't have come to you!" Sad...but funny!

Jo, HUGS!
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  #10  
May 9th, 2009, 09:29 AM
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I hope you are able to get sarah in and that you'll be able to get the answers you need.
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  #11  
May 9th, 2009, 05:08 PM
~hsingtreehouse~
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How did I miss this? Sorry to not reply sooner!

I am sorry the specialist was of no help. That stinks! I know you aren't as concerned for yourself as you are for Sarah and I am glad your neuro has found someone who is taking an interest in this!
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  #12  
May 9th, 2009, 11:48 PM
joandsarah77's Avatar Platinum Supermommy
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Well I hope so, the Nuro didn't know if it was going to cost or not yet. So nothing is definite, but I'm hopeful. I also don't know if an MRI would be too much at seven. Kids can be funny though and take things better then adults some time. I explained it to her what it was and she said "Cool!" lol.

That's ok Rebecca, there are a lot of 'update' posts lately.

Chelita, *hugs back* Hope you are feeling a lot better.
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  #13  
May 11th, 2009, 01:06 PM
Momma Jo's Avatar Monsters Ed
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Location: South Africa
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I'm so sorry you aren't getting the information you need. I have the same problem with Duncan and his Hirschprung's disease. Can you not get a referral to a doctor that specializes in PH (or at least knows what PH is all about)?
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  #14  
May 12th, 2009, 08:12 PM
joandsarah77's Avatar Platinum Supermommy
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As far as I know, the neurologist is considered the specialist for PH. It's just too rare to warrant interest or to be allocated any public health money. So not that much is known about it. I'm guessing my Nuro is the main specialist for my state as she is in the capital city. (Brisbane) She told me I was her forth patient with this condition. If there are only 20-30 of us in the entire country they're not really going to care. I haven't heard back from her since that phone call, but I will post if I do.
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  #15  
May 12th, 2009, 11:12 PM
docsmomma's Avatar Platinum Supermommy
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Quote:
Originally Posted by joandsarah77 View Post
Well I hope so, the Nuro didn't know if it was going to cost or not yet. So nothing is definite, but I'm hopeful. I also don't know if an MRI would be too much at seven. Kids can be funny though and take things better then adults some time. I explained it to her what it was and she said "Cool!" lol.

That's ok Rebecca, there are a lot of 'update' posts lately.

Chelita, *hugs back* Hope you are feeling a lot better.
David had an MRI last year at 6. he handled it great and got to watch a movie for the MRI, which lasted an hour (an extensive MRI). You could always ask for an MRI that has a movie for kids. They usually let you bring a DVD or have a selection.
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