New School New Nurse

My son is 14 and a freshman in High School
We have a new school nurse, which means we have to re-educate the educated
They had on his health plan to call 911 for a paper cut, this was a hard sell but I was able to convince them to allow us to pick him up in stead
No seriously they honestly felt that he was that much at risk , so spend the extra time to talk to them have your child show them how he infuses and so on
there are many sources out there for informtion or even in person inservice days with the school
your HTC, homecare and or yourself
remember knowlege is powerfull, share the wealth
others may want to share thier stories

Crazy Things

I have spent the week in and out of the ER and doctors office with my 14 year old. Cody has severe hemophilia A. Sunday he woke up with a very stiff neck that continued to get worse as the day went on. We did factor at home and contacted the hemotologist. We went into the ER to check for a neck bleed and to make sure all was ok with the airway. Things did not get better over the next few days so they ended up admitting him to the hospital. Cody's neck was causing him quite a bit of pain and his head was always off to his left side. Many tests and imaging were done. What we found shocked us all! He has a clot in his jugular vein. Yes, my son with severe hemophilia had all of this pain from a blood clot! And guess what the treatment is? Several weeks of blood thinners....but he has hemophilia and if there is one thing we have all been told over and over again is you do not give blood thinners. We are trying to give daily infusions of factor with his daily injection of blood thinner. I am wondering if any of you moms out there have experienced anything like this? I've been searching the internet for days without much luck so I thought I would reach out to all of you!

Looking forward to hearing from you all!
Lori

Broken bones

Hello to all. I was just curious to find out if any of you have experienced any broken bones with your child/children. Was there a bleed when it happened and how bad? I have not and hopefully won't experience this but, it's a question that I've wondered about and that's what blogging to eachother is all about.
Thank you,
DeAnn

Getting ready for School

Hi everyone,

School is just around the corner, for those of you with children in school, maybe you can share some of the things you do to get ready for the school year with the school staff

Hello Michigan

Lori and I are in Michigan today sharing the Hemophilia Moms's blog site. We would like to invite everyone to say hi to our new friends .

The Hemophilia Moms are made up of 8 Hemophilia moms across the United States. We have moms with grown children, college kids, High school students, Jr High as well as little ones.
We hope that you will join us in supporting each other and sharing experinces with other families.

Rhonda

who can be a hemophilia carrier?

Hemophilia is a genetic disorder and is usually carriers through the women
if you are a daughter of a man with hemophilia you will be a carrier
if you are a daughter of a women that is a carrier you have 50/50 chance of being a carrier

there also is mutation of the gene when it just shows up with no family history

would you like to share your experiences with others

How do you become a hemophilia carrier

Hemophilia is a genetic condition. This genetic condition is carried on the X chromosome in women. A women is a carrier when her father has hemophilia or when her mother is a carrier and she receives the X that has hemophilia. There are tests available to be tested if you think you may be a carrier, check with your doctor.

There also is mutation of the gene, that is when it shows up out of now where.

I know that some of you carriers out there may have many questions, and feelings that you might want to share.

Being in Charge

It comes a time that you need to allow your child to take control of the situation.
That is so hard. By the end of high school I want my children to be incharge of thier health
make doctor appointments, juggle scheudles, order thier factor and supplies. I want them to be confortable with making the decisions. So when the time comes and they are really incharage it will be old hat for them

Welcome

Good morning ladies, I am so pleased to see that we all could get together this morning and enjoy a Mom to Mom's event here in Portland, Oregon

Today the Hemophilia Moms is hosting a brunch on the river inviting moms to come and enjoy each others company and stories

I hope to see you blogging with us in the near future

Making infusion time less stressful

Hello to all you wonderful mothers. I have a 4 year old that has a port. I'm still having a very hard time infusing him. He's very scared of the needle for one thing and he won't lay still. My husband and I have to hold him down. He yells, "don't hurt me" with tears running down his face. Needless to say it's very stressful. He has a brother that's 6 and he watches him get his infusions with no problem. Does anyone have any good ideas to help make this less stressful for him and my husband and I.
Thank you,
DeAnn

Portland Moms

CSL is having a Mom to Mom event this Saturday July 12th , if you are interested please reply
Rhonda

Traveling Safe

We are thrilled to have so many of you join us in our chating and sharing information. That is the main reason we are here...to connect and share ideas, stories, and encouragement. Any time you have a new question or comment please feel free to add it so we can talk about it. Again welcome to all!

I just want to mention a few safe traveling tips in view of the upcomming Holiday. Many will be traveling for the 4th of July and celebrating. BBQ's, swimming, and summer fun are a part of many plans. First of all make sure you have your factor "to go" pack with you. (Factor and all the supplies that you need just in case an infusion is necessary. You may also want to include instant ice packs.) Nothing ruins the fun like an injury and being unprepared to deal with it. If you have your supplies...you can just infuse and continue to enjoy the festivities. Next make sure you apply and re-apply your sun block throughout the day. As well as keeping yourself and the children hydrated. Water is really good but you may want to consider some Gatorade or Powerade if you will be out in the heat the majority of the day. If hiking, biking, or other sports are on your agenda make sure the proper protective gear is used. This will help cut down the chances of injury.

I know many of these things are common sense things...but sometimes in the excitement and planning things can be forgotten. May you have a wonderful Holiday as you celebrate the Freedom of Our Great Country. Happy 4th of July!

Meet and Greet!

There are some moms that would like to introduce themselves. Please feel free to introduce yourself here! Also...let us know what subjects you would like to discuss. New blogs can then be started. This site is for all! We want it to be beneficial for you...Mom2Mom!

To PORT or not to PORT

I recently met a new mom who is trying to decide if a port is the right choice for her and her son. She will be checking in on this blog so please share your thoughts about ports. Also maybe you could share your story of how you decided to have a port or not.

I have three sons with severe hemophilia A. At the present time none of them have a port as they are 24, 13, and 11. They all have had a port at one time. My oldest did not have a port until he was about 11. My other two had their ports placed between 10 months and 11 months. I was not a believer in them at first.....but boy did I change my mind!

A port may not be right for everyone. I did find it easier and less stressful to infuse my sons who always presented a challenge to start an IV for infusion.

Thank you all for sharing!
Lori

Babies Babies

Contratulations to all you new moms, I have heard of 2 babies in the last week

We are all about You

Hi Moms,
Tell us what you would like to talk about, or need information about. This blog site is what ever we want it to be. Let us know what you would like to hear about.

Enjoy your April Fools Day.

Camp is right around the corner, do we want to talk about camp?
Signing up for Kindergarten for next year ?
The first family vacation away from home?
I am a carrier and looking at having a child?
How do we treat our children the same when one has hemophilia with an inhibitor?
What is an inhibitor?

These are a few ideas to think about it, let us know what you would like to talk about?

The ER - again.

Hi Moms,

Just a note to add to the information already provided on ER visits.

• Be prepared to have to explain just "how long he has had hemophilia".
Do this without anger or frustration - right or wrong you may vey well find there are medical folks out there that know "NOTHING" about bleeding disorders, including the inheritance aspect!

• If asked to leave the room so an iv can be started - don't be afraid to refuse. This is your child and it is your right to be there.

• Share w/ the med staff what you know:
- the best site to try for a vein
- your 3 stick policy (if someone on staff can't setup your child in 2 tries, someone else has to be called in. We often would request the IV team on call)
- that you are going to pull out the bubbles as this quiets your child

• Point out the "Treat a person w/ Hemophilia First" poster in the waiting area if you are sitting for more than 15 minutes before you are triaged. If there isn't a sign in the ER let us know, there will be one the next time you have to "visit".

• Present an "in charge and in control" demenor to the ER staff. They listen when you speak with a sense of knowledge and authority. Never be afraid to tell them you are taking your child to another facility if the care is not up to your standards. Call your insur. co. from the waiting room or outside on your cell phone and let them know what is happening. They want your child treated quickly to avoid costly complicaitons as much as you do!

I know many moms can add to this list - so come on ladies - let our new moms know what to expect and what to do!

Kris

Emergency Room Visits

My son has Hemophilia ..he is factor VIII severe less than 1%
I have his factor and doctor orders with me
We need to be seen right away
This is my opening line at the Emergency Room

I have not had to visit the Emergency Room for some time and I do not miss that
Being prepared for the visit makes everyones life less stress full
Make sure you inform them as you walk in the door that your child has hemophilia
Discuss with your treatment center the best procedure for you at the emergency room
Ask lots of questions so you can focus on your child at this time and not on learning the hospitals procedures-- such as bringing your own factor.

Does anyone out there has some suggestions or emergency room stories they would like to share?

Ports & Fevers

I am hoping you all are aware of the following information. If your child has a central line (port-a-cath, hickman, PICC) and they are running a fever...some lab work should be done. My son has had a port now for over 7 years and this still is something I deal with. He was running a 103 fever yesterday afternoon, and just because his sister had one too, I questioned wether or not I should have the blood culture and CBC done. After contacting the HTC they assured me that the tests should be done. Better safe than sorry was their encouragement. So I went ahead and got the lab work completed. And as I had hoped his white blood cell count was normal.

But there was a time when I did not know to have a culture done when he had a fever. When his port was first placed at 8 months of age, I was very uneducated about how to care for it. All I knew was that it needed to be flushed once per month if we did not use it. I did not know about much else. A couple of months later he did get a 104 fever, but the next day it was gone so I didn't think much of it. It happened again a couple weeks later. But again left so quickly that I thought he was fine. About a week after the third time he had a high fever one day and gone the next, I happened to be chatting with the HTC nurse. It was regarding another matter but I mentioned the mysterious fever and that it was the third time it had happened. She asked me what the cultures said...And I said "cultures? I didn't know anything about that." She was very insistant that I take him immediately in for blood cultures and a CBC. Sure enough it was an infection in his port. He was hospitized until the daily cultures turned negative.

Infection in a central line is definately something you don't want to mess around with. So any sign of a fever it is a good idea to notify your HTC so you can receive instruction as to what your doctor would like to have done. Even if you think it is nothing, a cold or ear infection it is always better to be safe than sorry!

Have a blessed day!

Strength in Unity

Good Evening!

I have just been reading the blogs posted in the last weeks - and I am thrilled that Mom's across the US and beyond are posting on the site!

Each comment I have read brings back memories of what my family experienced - and my sons were babies over 25 years ago! Yet, one thing remains constant - our need to share. And as all of you contributing to this blog have found - with sharing comes a true sense of support across the miles.

Kudos to the Moms' who have been so faithful in their oversight of Hemophilia Mom's Forum - you are great!

I can share this with you all and that is there are days I feel just as I did almost 30 years ago - a small feeling of panic wells up inside when Peter is going to do something: travel - race motocross - without me. He is an adult, and he is my child. He is mature, and he is my child. He is knowledgeable, and he is my child. He could be 60 and he will still be my child.

The needles, the helmets, the fear of discrimination, learning to walk, going to school - you will get through it and when you look back the tough times fade and the memories you recall are happy ones and even if it has been 27 years, he is "still your child".