Alone and afraid

X

Xarismata

New member
I have tried several times to start this message. Apologies for any disorganization.

I am a Caucasian canadian by birth, and my wife is Japanese. We live in Japan. I have heard that as a genetic profile, CF is rare in Japan, with possibly only 16 people or so in the whole country. My daughter first showed signs at 6 months, and she stayed in the hospital for three months before she recovered. Even after her recovery doctors didn't know what to make of her symptoms. Shea's always having coughs but we didn't pay too much attention until she had her next bout with pneumonia-like symptoms at 4 years old. When she would get sick we'd take her to the local clinic and get some medicine to treat any symptoms like a flu. Finally when she got these pneumonia symptoms at 4 years old and the doctors couldn't find any bacterial or viral cause I had a flash of memory about CF and asked my doctor if it might be this. A few genetic tests later and it was confirmed. My daughter is ccurrently receiving care from doctors that know what they are facing but with zero experience with CF. I hope you won't mind if I come on and ask for pointers that I can give the doctors for direction as they research possible treatment options and encouragement as a couple facing this without support or specialists.

My daughter is currently using a vaporizer with pulmozine(?) daily to break down mucus so she can get it out. It breaks my heart to hear her cough. We moved about 2 months ago and she's still settling into her new kindergarten etc. the last two weeks her coughing at night has been getting worse and she's started to cough blood and have occasional fevers. This is the first time blood has come and I feel so powerless to help her. The doctors say there's no bacteria in her phlegm and she plays very healthily but lacks appetite.

I have broken my usual internet protocol of lurking before I post, but I need to share and ask, what does blood when coughing indicate?
 
R

ryry11

New member
Blood when she's coughing is generally an indicator that she needs some antibiotics, possibly in IV form. It's called hemoptysis. Stop Pulmozyme for a few days to let her airways calm down and make a doctor appointment as soon as possible. If she starts coughing a lot of blood (like a half cup) and it doesn't stop, take her to the emergency room. Hemoptysis is a pretty normal thing for CFers, but it sounds like she's got something brewing and may need a course of antibiotics. You may also ask about getting her on some sort of airway clearance if she isn't already; the vest, 'clapping' her, et cetera.
 
P

Printer

Active member
First let me suggest that your Doctors contact the Cystic Fibrosis Foundation in the US for assistance in dealing with CF. Their web site is cff.org.

Coughing is your daughters best friend. That will help her in keeping her lungs clean.

A small amount of blood (less than a cupful) is normal. A cupful or more means a trip to the Emergency Room ASAP.

Canada has some great CF Centers. Sick Kids Hospital in Toronto comes to mind. Perhaps it could be time to visit family and have an evaluation done at the same time.

Is she experiencing any pain or discomfort after eating, within say 4 hours?

Bill
 
J

JENNYC

New member
First I am so sorry, I know it is quite a blow to find out! And it is so awful watching your child suffer and feeling so helpless. Secondly I think experience with CF is a must when it comes to treating someone with CF, because it is so different than anything else, and everyone who has it is so different. CF doctors have dealt with so much that they are more accustomed as to what needs to be done. I agree with Bill, maybe its time to visit your family in Canada and set up an appointment with a CF clinic to get your precious baby well again. Also like Mariah mentioned airway clearance is so important, the vest is a God send. Also the CF center can get her the right treatment plan for her that you can continue at home. I hope that when you say vaporizer that you mean a nebulizer. I have always been told to never use a vaporizer because it could hold bacteria and also that is not the proper way to get Pulmozyme. Your daughter should be on a set regimen to care for her CF, I just really think that it would help to get that regimen from a CF center and take it home to your doctors. It's so important and I think your little one would get better. I'm not a doctor but maybe just to give you an idea, my daughters regimen ever since she was little is: wake up take 2 puffs of Albuteral(to open her airways so the medicine gets deep into her airways), and then nebulize Hypertonic saline (which moistens and loosens mucus in the airways and sinus') while doing vest therapy (which vibrates and clears the mucus so she can cough it out).......she takes enzymes & vitamins through out the day, then if she is sick she does an extra vest therapy at lunch, if not she at night does 2 puffs of albuteral, hypertonic saline & vest, and then pulmozyme (some do this in the morning). And again I am not a dr but if my child were that as sick as you are describing I'm sure her dr's would have her in the hospital on IV therapy which works wonders!! Again I am so sorry that you are going through that!! Makes me just want to squeeze your baby and you from afar!! Please come on here when ever you have questions or just need a little boost!! We are here for you!! I wish you all the best and please keep us posted!! :)
 
J

JENNYC

New member
Oh wow Ratatosk!! I was typing and didn't see your post!! That would be so helpful!! You might send him a Private Message if he doesn't see this thread.
 
X

Xarismata

New member
Thanks for the responses. I just woke up. It's 3am here now. She's coughing and clearing.i did mean a nebulizer. I apologize for using the wrong terminology because everything is in two languages.

We don't have a "vest". Can you give me a link for a website with information that I can provide our physician?

WRT Canadian centers, my family is in Kamloops, BC. Are there any facilities in that area?

Again, thank you so much for the information. I will make sure to consult with our regular physician about this advice as well.
 
X

Xarismata

New member
I don't know about discomfort after eating. I will ask her again in the morning. She's been complaining about chest and and back pain the last day or so, but I had assumed it was related to coughing. Her appetite hasn't been very good the last couple days though so I will ask.
 
P

Printer

Active member
There are CF Centers in Vancouver and in Victoria. Google CF Canada.

I was asking about stomach pain, to question if enzymes may be appropiate.

Keep in touch with us.

Bill
 
6

65rosessamurai

Guest
Hi Xarismata,

My name is Fred and I've lived in Japan with CF for nearly 20 years. I'm up in the AM nebbing, so I'll have to come back to this post to add more comments.

First of all, if you have national health insurance, as everyone working or living in Japan does, you'll find they don't have the same coverage but do cover a lot.
No, there is no "vest" available in Japan. I've been using those automatic shoulder massages for my PD. (Postural Drainage)
When no "vest" is available, its best to go to the basics and "clap" with your hands to help get the mucus out and keep the lungs clear.

Onigiri, or other foods with Seaweed, has a lot of Vitamin K, which helps to prevent hemopsys.

I'm curious what part of Japan you are living in. I'm in the Osaka area and know of a few hospitals with some "Book-educated" CF doctors...
 
X

Xarismata

New member
Hi Fred. That's great information. I'll look into one of those little massage things. Yes we are on the national insurance plan. We live in Nagoya, and as a child pretty much everything has been covered for us. We did buy our nebulizer ourselves but all hospital stays and medicine has been covered for us so far. Interesting that you mention onigiri. She tends to naturally prefer Japanese foods including lots of rice and nori even when the rest of the family is eating western foods.
 
6

65rosessamurai

Guest
Your post didn't exactly specify the age of your daughter, so keep her age in consideration when purchasing a little massage thing.
Nagoya's a bit aways from Osaka, but not entirely impossible.
I also had to buy my own nebulizer, but the rest is covered.
However, another concern I have is how your daughter's digestive system is doing. Japanese foods agree with me, but I still get occasional "issues".
I use "Wakamoto" as a digestive supplementary because standard enzymes for CF patients, such as Creon, is not available in Japan. (they also consider it a "supplement", not an actual medication)
I only needed a nebulizer since about 5 years ago, and am currently using NAC. I believe Pulmozyme was only recently available in Japan about a month or two ago (very recent considering its been around in the US for quite a while)
 
A

AleksandraKaczynska

New member
Hi, I agree with all the above - but also think about withdrawing your daughter from kindergarden till she has to go to school. Think about AquAdeks vitamins and additional inahaltions from saline. And omegamed - omega 3 and 6 oils.
Hand cpt can be as effective as the vest and you can find alot about this in european centers - webpages - as its most prefered here. Also - since you're living propobly near the sea - esspecially if you have windows to the seaside - it would be great.
Also ask to cheque her elastaze level - usually from a poop sample - frozen just after taking the sample - but not sure if you can get this test be done.
It will show if she is pancreatic sufficient or not - and also a usg of her tommy - in a good center.
http://cysticfibrosis.about.com/od/respiratorytherapy/ss/CPTyoungchild.htm
http://www.cfww.org/ipg-cf/article/195/Physiotherapy_in_the_Treatment_of_CF

but there are few techniques and it would be good to get in contact with some theraupist who knows this as the technique changes accoring to age and symptoms.
And contact a cf center nearest to you - I guess U.S or Canada would be the choice like others wrote
 
X

Xarismata

New member
My daughter is 5. She'll be starting Grade 1 this coming April. (She also has an older sister currently in Grade 2 that does not have CF). Her eating is a real concern for us as well because she's fairly stubborn with foods she will and won't eat at any given time and takes a long time to eat when she does, but it is difficult for us to tell if that is normal childhood pushback or if she's having digestive problems related to CF. Her older sister is happy to eat anything and everything, but she has a fairly limited menu of what she'll eat without complaint. She prefers Japanese foods to western foods but that might be because they are generally less oily... We moved recently within walking distance of a larger medical facility that we had heard has one other patient with CF that visits. As you say, the phycisian is just reading and learning as they go... Pulmozyme was made available this summer the same month we received genetic test results back. Until then we had been using a saline solution but now she has pulmozyme daily. Everything you've shared is really encouraging. Thank you so much. I will look into Wakamoto. (Time for dinner ^_-)
 
A

AleksandraKaczynska

New member
my Daughter is also 5 :) and is in prechool - but in a school fasicility - not in kindergared biulding - I was told it makes a difference :D
We had a cheque up on monedy and this is how it works here:
blood work - also vitamin and mineral levels, USG of tommy and heart - it's close to lungs and it must be tested to see if there are no leaks - ex. my daughter has a natural - at this age - small leak between the two sides of heart (sorry for the bad english :) ) and it needs no surgery but the docs must know cause if something goes wrong in her lungs there will be hudge pressure on the heart and may cause even turning the movemnet of blood around - so the docs must know about this befeore hand
x-ray of lungs
swab from throat
elastaze level - I just give them the sample
a vistit to psychical therapist, diet doc, leading doc

Think about suplementing Omega 3 - best to use omegamed - As I'm told in EU
also probiotycs or symbiotics
and ADEK witamins where AquAdeks is a vitamin made esspecially for cf which need no oil absorbtion to be absorbed by the body
also 1ml per every 2 kg of weight of child of 10%NaCl per day - Asia weighs 20 kg so she need 10 ml 10%NaCl - cf kids need more salt - about one teaspoons a day at least
If she has fever or other problems - twice the dosage of salt
then 2 inhalations of Saline 7% and just after that CPT - we do hand CPTwith huffs per day - morning and before night
and one pulmozyme - at least 4 hours before the night saline inhalation - first CPT - then inhalation from pulmo

those are basics for Asia by cf specialists
but the recomendations are all dependend on the patient and his health
or at least cheque wiatmin ADEK levels and minerals
other parents also add some mineral suplement - I do
and such things as Noni Juice or flavons - those I give - or Manuka honey
Asia's diet and docs know this and I have chequed this with them
and excersise :)
and vacinations - pneumokoks and meningokos, flu, small pocs and others

I think your docs are doing the best they can so you're in good hands and not alone anymore
 
A

AleksandraKaczynska

New member
just a thought - In Poland you need to have a dissabled paper to get more refunds and money help from a national health innsuranse - maybe the same for you?
we get some money for Asia, for her nebs and inhalator and also other benefits in school and so on...
and try asking questions at
http://www.wikicf.com/
or
http://ecorn-cf.eu/
however the second takes ages to give answers :(
also you might ask cf fund like cfeurope or the above to send booklets about cf and newest publications concerning dealing with cf to you and your doc
but maybe you ask the canadian cf center in Vancouver to help and consult your docs _if they are willing - so you don't have to travel with your little girl
 
X

Xarismata

New member
Thank you Alexandra. That's a lot of information to swallow at once but it looks like very useful information coming from Europe since the situation looks closer to what I face in Japan than most of the information I have found online focussed on the US.
 
X

Xarismata

New member
In terms of vitamins we are using a variety of supplements as well as her natural diet consisting of plenty of sea vegetables that are rich in most vitamins and minerals. We haven't done much in terms of "clapping" or vibratory vests, but our physician has said the sound of her breathing is good. With our current physician we are starting to track samples from phlegm and stool with our visits for a number of factors.
 
X

Xarismata

New member
Again, I want to thank you all so much for you responses. Last night it was really overwhelming for me to hear her cough through the night again and it was the first time she coughed any blood at all so I was completely distraught. Her fever has come down and she's not producing blood today. She's taking a course of oral antibiotics this weekend at home this weekend just in case and there hasn't been blood. I was really scared at the trace amounts of blood but you all really encouraged me. Thank you. I will stay in touch through this forum, and I hope that I can help others and maybe receive some more advice.
 
A

AleksandraKaczynska

New member
good news :D then
We are told to use a diet high on witamins, calories and carbohydrate and protein - acctually above 2100 kcal.. and even apart from that use the AquADEK suplements also - but I know of kids who take half the dose for ex. after having their vit. levels chequed - so it would be good just to do the test... I know how kids hate needles and not eating breakfast...
have they done her a lung x-ray - not all comes out just by listening... just ask
when Asia has a virus and cought at night I can't sleep also - I just listen to her all night....but then the caughs go away and her inahaltions keep her in great health so far - I hope the same will be for you
hand cpt is really great and works - try it and do regulary just after saline inahaltions but before! pulmozyne - if your doctors don't say otherwise
this will make her nights easier
 
You must log in or register to reply here.
Top