thanks for the tips

[Guest guest]

Hi Lynley,

This group is a tremendous support, but you need a really well

informed Dr now to help you further. If you like I could contact my

Dr for any contacts he has in NZ.

Goodness, you sound very mature about all of this for one so young-

it worries me a bit that you are keeping your return of symptoms from

your parents!! Are you still living at home?

Will your Havelock Nth Dr be helpful in seeking other medical help?

Is (s)he receptive to your need to seek further advice/referral?

You do need up to date facts of this illness and treatment options

explained in relation to YOU and YOUR personal symptoms and medical

history.

Where are you planning to go to uni? Auckland, or one of the smaller

cities? Auckland may be your best bet for finding a specialist with

some knowledge/experience in this condition - given that incidence is

appx 1 in 10,000, and that NZ has national centres of excellence for

specialist operations. (For some rare procedures, NZer's get flown to

Australia for their ops these days). And keep in mind that you will

need follow up care - even after surgery, at least an annual check.

I had a laparoscopic heller myotomy in July 1999 and have been great

since then. There does seem to be good evidence that the op is most

successful in younger patients and those who have not had their

oesophageal muscle repeatedly damaged by mechanical stretching

(balloon dilations) or bacteriological chemical treatment (botox

injections).

For a good long article that gives in depth descriptions of treatment

options (but is biased towards surgery) go to:

www.aalaparoscopic-surgery.com/achalasi.htm

Keep in touch, and take care - drink plenty of water and if you take

a liquid food supplement like ensure or complan - choose one that is

already fortified with vitamins and minerals.

Keep smiling! Jeanne.

> Thank you everyone that has replied to my last message with advice.

I

> hadn't noticed that heated food was easier to swallow, and I have

> found some foods that I can eat with minimal regurgitation if I eat

> them very slowly. I found that hot mushy weet-bix goes down well,

and

> probably better for me than chocolate which also goes down well. I

> have also found that I can get some liquids down if I drink warm

> water a little bit at a time from a water bottle rather than a

glass.

> Other liquids seem to be more difficult. I plan to try

> vitamin/mineral supplements when I can afford it, or prehaps I will

> hint it to my parents. This will hopefully keep me in reasonable

> health until I work out what I am doing as treatment.

> I then plan to investigate doctors in New Zealand that may know

more

> about my condition than the local doctors. I have just realised

that

> if I act it is important that it is done this year, because next

year

> I will not be covered by medical insurance (this is my last year at

> school, and there is no local university). I also realised that

> because I already have achalasia that even when I get my own

medical

> insurance it will probably not cover achalasia-related

> surgery/treatment. Because of this I think I will probably have to

> have surgery, but I will find out more first. Alongside

investigating

> New Zealand doctors, I also hope to do some research on achalasia

and

> put together some information in a project style so that I can help

> others to understand achalasia. When I have found out what I am

> doing, I will then tell my parents that my achalasia has come back

> again.

>

> Thank you everyone, I have found all the information very useful

>

> Lynley

[Guest guest]

You are right, I should probably tell my parents sometime. I am still

living at home (my last year), but I want to find out more

information first. They never really found out what the condition was

about last time, and I always got the feeling that they thought it

partially to do with my concerns with my weight. When I tell them, I

want to not just tell them but show them some information and tell

them what I plan to do about it. If I tell them before this they will

probably send me back to my previous specialist. Unfortunately

without my parents knowing I can't afford to go to the doctor because

I have spent all of my money this month, but I am going to try and

borrow some money off my friends. Although the specialist I dealt

with wasn't great, my GP is good and will probably help me find other

specialists that I can contact.

I have found a way to get some liquid down by drinking it slowly and

warming it, and already my skin is slightly better for it. I still

have to ask my mother to buy some vitamin/mineral supplement. I have

already asked her about university and medical insurance, and she

said that she might look into having me covered while I'm at

university, so I might have more time to get surgery. I plan to go to

University, which is in Wellington. If there are any good

doctors you know of in Wellington, next year I'll be living there and

I won't have to travel.

Thank you again to everyone in this group

Lynley

[Guest guest]

Thanks to those who sent me the tips to my cat who thought she would dip her

paws in my parafin bath for these arthritic joints. Have a nice evening

everyone.

in orlando

---------------------------------

[Guest guest]

Thanks for all the tips . I checked out your website and all the info. I will keep you posted on the STARband. I loved your girls' bibs. Did you have those made? I would love to get some for Boulder when he is wearing his band. We ordered a blue band and now I wish we would have gotten white so we could put stickers on it. I guess we can just decorate the blue one. Thanks, <monicash@...> wrote: hi ,Welcome to the group. Boulder is at a great age to see correction.

I imagine he will be in his Starband 3-5 months. I live in SC and I hear you about it being hot. Both of my girls were banded in the fall/winter months. We do have some good tips for keeping cool. I hope you have A/C. Here are some other tips to help you get ready ...Ceiling fan or regular oscillating fan (not pointed directly at him but on in his room)dress in less - i.e. just diaper or onesiecool car down before he gets in (if you can't and it's a short trip take the helmet off)get a reusuable ice pack - keep it in a cooler in the car during errands, when you get out of the car put it in his car seat and cover with a towel - this will keep his seat coolno socks!!limit outdoor adventures to the cooler timessunscreen is not good under the band so get a big floppy hatbands/helmets can't go swimmingkeep his head dry - take the band off numerous times a day and dry it and his head with an

absorbant towelYou will need some sweat smelling shampoo to mask any stinky sock smell - the sweat and bands create a "wonderful" smell. Keeping everything clean is key. Get some 91% alcohol to clean it with. Every day or possibly twice get a rough washcloth damp with alcohol -rub rub rub the inside of the helmet. Get all the sweat and microscopic bacteria out (that's what leads to the smell). You can even use an old toothbrush. Now let it dry thoroughly before putting it back on - drying in the sun works great. Cleaning is usually done at bath time or during the hour off time each day. Some folks split it up into two 30 minute sessions.His body will adjust it's internal thermometer however, Georgia summers are just hot so expect sweating.Severe plagio and mod brachy will not correct on it's own. Mild cases can and do correct with aggressive repo, moderate cases may even see enough correction. You are

doing the right thing by going ahead now while he is at a wonderful age for correction. There are some studies which say there can be some function issues later - chrinic ear infections, eye site problems, TMJ, migraines, etc. They are not definitive but maybe hearing about them would help your husband. Also, with severe plagio it would be difficult to find sports equipment that fit properly - football helmets, bike helmets, batting helmets. Ask you husband if Boulder has crooked teeth will you get him braces? Have him think of it that way - he has a crooked head - he's going to wear "braces" to fix it. Look on the bright side these bands don't hurt like braces (a properly fitted band does not hurt at all!) and they don't last as long (on the down side they do cost as much - bummer).Good luck - we'll help you get through it.na, DOC Grad Feb 04, Tort ResolvedKiersten, DOC Grad Apr 06, Tort

Resolvedwww.thefilyaws.com/plagio/plagio.html>> Hi, My name is Staqcy an my son, Boulder, is 7 months and will be > getting a helmet on July 14th for severe palgio and mod Brach. I am > super concered and worried, We saw a neurologist at 4 months and he > said that Boulder would grow out of it and that his platelets were not > fused so he should be ok. Well his head did not correct so we went to > a cranial specialist and he does qualify for the helmet - I don't have > his measurements on me right now, but will post them later.> > We live in Georgia and it is HOT - we have major concerns about the > helmet and the length of tim he will have to wear it.> > My usband is super against it,

but I think it is best so we are going > to go for it. He will be wearing the STARband. > > Any advice is appreciated.>

Music Unlimited - Access over 1 million songs.

Try it free.

[Guest guest]

: Chase has the blue STARband and we couldn't be happier with our choice! The white just looked so clinical to me and the blue really stands out well! We've had a ton of compliments on his cool blue head. Check out his head on his webpage. I've found the white stickers or clear backed ones work well - however, we've had cat and dog stickers on the back. They only lasted a few days, but it's fun to be creative and change things up! Good luck! Nikki from Chicago - Mom to Chase (8 months) coarc repair, tort, plagio and STARbanded 06/22/06 http://babiesonline.com/babies/c/cwl/ stacy stroud <stacystroud@...> wrote: Thanks for all the tips . I checked out your website and all the info. I will keep you posted on the STARband. I loved your girls' bibs. Did you have those made? I would love to get some for Boulder when he is wearing his band. We ordered a blue band and now I wish we would have gotten white so we could put stickers on it. I guess we can just decorate the blue one.

Thanks, <monicash@...> wrote: hi ,Welcome to the group. Boulder is at a great age to see correction. I imagine he will be in his Starband 3-5 months. I live in SC and I hear you about it being hot. Both of my girls were banded in the fall/winter months. We do have some good tips for keeping cool. I hope you have A/C. Here are some other tips to help you get ready ...Ceiling fan or regular oscillating fan (not pointed directly at him but on in his room)dress in less - i.e. just diaper or onesiecool car down before he gets in (if you can't and it's a short trip take the helmet off)get a reusuable ice pack - keep it in a cooler in the car during errands, when you get out of the car put it in his car seat and cover with a towel -

this will keep his seat coolno socks!!limit outdoor adventures to the cooler timessunscreen is not good under the band so get a big floppy hatbands/helmets can't go swimmingkeep his head dry - take the band off numerous times a day and dry it and his head with an absorbant towelYou will need some sweat smelling shampoo to mask any stinky sock smell - the sweat and bands create a "wonderful" smell. Keeping everything clean is key. Get some 91% alcohol to clean it with. Every day or possibly twice get a rough washcloth damp with alcohol -rub rub rub the inside of the helmet. Get all the sweat and microscopic bacteria out (that's what leads to the smell). You can even use an old toothbrush. Now let it dry thoroughly before putting it back on - drying in the sun works great. Cleaning is usually done at bath time or during the hour off time each day. Some folks split it up into two 30 minute

sessions.His body will adjust it's internal thermometer however, Georgia summers are just hot so expect sweating.Severe plagio and mod brachy will not correct on it's own. Mild cases can and do correct with aggressive repo, moderate cases may even see enough correction. You are doing the right thing by going ahead now while he is at a wonderful age for correction. There are some studies which say there can be some function issues later - chrinic ear infections, eye site problems, TMJ, migraines, etc. They are not definitive but maybe hearing about them would help your husband. Also, with severe plagio it would be difficult to find sports equipment that fit properly - football helmets, bike helmets, batting helmets. Ask you husband if Boulder has crooked teeth will you get him braces? Have him think of it that way - he has a crooked head - he's going to wear "braces" to fix it. Look on the bright side these

bands don't hurt like braces (a properly fitted band does not hurt at all!) and they don't last as long (on the down side they do cost as much - bummer).Good luck - we'll help you get through it.na, DOC Grad Feb 04, Tort ResolvedKiersten, DOC Grad Apr 06, Tort Resolvedwww.thefilyaws.com/plagio/plagio.html>> Hi, My name is Staqcy an my son, Boulder, is 7 months and will be > getting a helmet on July 14th for severe palgio and mod Brach. I am > super concered and worried, We saw a neurologist at 4 months and he > said that Boulder would grow out of it and that his platelets were not > fused so he should be ok. Well his head did not correct so we went to > a cranial specialist and he does qualify for

the helmet - I don't have > his measurements on me right now, but will post them later.> > We live in Georgia and it is HOT - we have major concerns about the > helmet and the length of tim he will have to wear it.> > My usband is super against it, but I think it is best so we are going > to go for it. He will be wearing the STARband. > > Any advice is appreciated.> Music Unlimited - Access over 1 million songs. Try it free.

Want to be your own boss? Learn how on Small Business.