When my daughter and I first got diagnosed with a Platelet Storage Pool Disorder, I was overwhelmed and scared out of my mind. We were hearing terms we had never heard before, told precautionary tales that the rarity of our disorder was going to cause and the restrictions our lives would have.
Looking back, These are the 6 Things I wish someone had told me when my child first got diagnosed with a bleeding disorder. .
1-Being prepared is the best defense. Have a game plan. I may seem over prepared but I've learned the best way for me to dodge anxiety attacks, where our bleeding disorder is concerned, is to feel totally prepared for any emergency.
My most important form of defense is our Emergency Bag. I can't believe there was a time we went without it. I carry that thing everywhere, and there's rarely a time I don't feel like I have everything I would need in case of an emergency.
In our backpack we have:
And I also have a write up about Scarlett and her bleeding disorder. In this write up I include emergency numbers, protocol, authorization forms, quick tips and lists of medication options.
I've also learned the importance of wearing our emergency bracelets at all times, having our emergency information laminated and placed on the inside of our dash board, to always carry our Dr's phone #'s with us and to always have disposable ice packs with us. When traveling or sending Scarlett on sleepovers with relatives, I try to be aware of local hospitals, make sure to have the emergency bag filled and inform our Dr's we are leaving the area.
2-Take pictures and document everything...Document when it happened. How it happened. What your child's reaction was-cried a lot/didn't cry. And if medicine was given or not. When you take a picture, put a quarter next to it so you can compare the sizes, and draw a line around the border of the bruise to decipher how much it's growing.
Soon after Scarlett started her play years and was constantly getting hurt we learned the importance of documenting. Questioning whether or not Stimate was needed after injuries seemed to be a day-to-day event and taking pictures to document the size and color of her bruises helped the Dr's determine if her medicine was needed. Now we are able to make that call on our own and previous injuries to look back on always helps in that decision.
3-Lean on your bleeding disorder community.
I didn't start reaching out to others and getting involved with the bleeding disorder community until about a year after our diagnosis. Had I known then, how much I would lean on them, and how much they would teach me, I would've gotten involved the day we got diagnosed.
Facebook groups have become a huge part of my support system. There are many groups out there geared towards individuals diagnosis' that lend a great resource to vent and bump ideas off of. (Platelet Storage Pool Disorder-A touch of Scarlett Women Bleeders Glanzmanns VonWilebrands are some of my favorites.)
Getting involved with our local chapter has changed our lives and I would recommend doing so to anyone that hasn't. My local chapter, HFNC has become a huge part of our lives. It's an amazing way to meet with individuals in a local format and surround yourself with others that don't make you feel alone. Every time I'm with my bleeder buddies a sense of calm comes over me that I can't explain. They give me support, guidance, and understanding, in a way I can't get anywhere else. We've had so many unforgettable moments with our local chapter. (An Unexpected Haven, Physical Fundraising, Dear HFNC campers)
NHF and HFA also offer so many resources and personal stories that can guide you through the process of getting diagnosed and where to go from there. . . these would've been so useful, had I heard about them upon the diagnosis. Their annual events offer opportunities to meet with others from the bleeding disorder community, sharing similarities and differences, all while being provided with an educational seminar about the latest news and hot topics. Last year I went to HFA's symposium and it was something I'll never forget. HFA Symposium/2015
5-Teach your child to be THEIR OWN advocate.
Now, all though I said you know your child better than anyone else. . Your child will begin to know themselves, even better than you. I've learned to trust my daughter and let her help in the decisions with her medicine and even her IEP and 504. She knows the side effects of her meds, she knows how it will help her heal quicker, so she helps us decide the bruises that need Stimate and which ones she could go without.
6-It does get easier.
When your child gets diagnosed with a bleeding disorder and they still have to learn how to walk, run and climb. . . it can seem like a daunting task to keep them safe. But over time your child learns to be more aware of their surroundings, be more cautious and hopefully gets less and less injuries the older they get.
Looking back, These are the 6 Things I wish someone had told me when my child first got diagnosed with a bleeding disorder. .
1-Being prepared is the best defense. Have a game plan. I may seem over prepared but I've learned the best way for me to dodge anxiety attacks, where our bleeding disorder is concerned, is to feel totally prepared for any emergency.My most important form of defense is our Emergency Bag. I can't believe there was a time we went without it. I carry that thing everywhere, and there's rarely a time I don't feel like I have everything I would need in case of an emergency.
In our backpack we have:
- LOTS of bandages (big, small, butterfly, all different kinds) I've also found having the bandaids with characters on it makes a big difference when the kids are younger.
- Scarlett's Stimate spray and Amicar for oral bleeds
- Gauze, tape, neosporin
- Disinfectant wipes and hand sanitizer
- Bloody nose clamp
- Tylenol because Scarlett can't take any other medication for pain and Benadryl in case someone has an allergic reaction
- Water
- Paper Towels
I've also learned these items come in handy with unexpected trips to the emergency room or long visits to the doctor. . .
- Packaged food-granola bars, protein bars, nuts, crackers, raisins, apple sauce (This has come in so handy with unexpected trips to the emergency room or long visits to the doctor.)
- Coloring Books/Crayons/Pens
- Search and Find Book
- Stickers
- Deck of Cards
- Notebook
- Sodoku (for me)
And I also have a write up about Scarlett and her bleeding disorder. In this write up I include emergency numbers, protocol, authorization forms, quick tips and lists of medication options.I've also learned the importance of wearing our emergency bracelets at all times, having our emergency information laminated and placed on the inside of our dash board, to always carry our Dr's phone #'s with us and to always have disposable ice packs with us. When traveling or sending Scarlett on sleepovers with relatives, I try to be aware of local hospitals, make sure to have the emergency bag filled and inform our Dr's we are leaving the area.
2-Take pictures and document everything...Document when it happened. How it happened. What your child's reaction was-cried a lot/didn't cry. And if medicine was given or not. When you take a picture, put a quarter next to it so you can compare the sizes, and draw a line around the border of the bruise to decipher how much it's growing.
Soon after Scarlett started her play years and was constantly getting hurt we learned the importance of documenting. Questioning whether or not Stimate was needed after injuries seemed to be a day-to-day event and taking pictures to document the size and color of her bruises helped the Dr's determine if her medicine was needed. Now we are able to make that call on our own and previous injuries to look back on always helps in that decision.
3-Lean on your bleeding disorder community.
I didn't start reaching out to others and getting involved with the bleeding disorder community until about a year after our diagnosis. Had I known then, how much I would lean on them, and how much they would teach me, I would've gotten involved the day we got diagnosed.
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| Holiday Party 2015- HFNC |
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| Family Camp 2015 HFNC |
4-Be your child's biggest advocate. You know your child better than anyone else. . . including the Dr.s.
I'll never forget when they first diagnosed Scarlett. . They gave me some pamphlets about helmets, emergency bracelets, activities she couldn't do and a letter stating she wouldn't be able to participate in any contact sports. That was it. No information on support group, my local hemophilia chapter, HFA, NHF. . .nothing!
It was made abundantly clear that I was going to have to be her biggest advocate when I met for a specialist for the first time. . . Help Wanted:Dr. Who Gives A Shit and I've been fighting for her ever since.
I'll never forget when they first diagnosed Scarlett. . They gave me some pamphlets about helmets, emergency bracelets, activities she couldn't do and a letter stating she wouldn't be able to participate in any contact sports. That was it. No information on support group, my local hemophilia chapter, HFA, NHF. . .nothing!
It was made abundantly clear that I was going to have to be her biggest advocate when I met for a specialist for the first time. . . Help Wanted:Dr. Who Gives A Shit and I've been fighting for her ever since.
5-Teach your child to be THEIR OWN advocate.Now, all though I said you know your child better than anyone else. . Your child will begin to know themselves, even better than you. I've learned to trust my daughter and let her help in the decisions with her medicine and even her IEP and 504. She knows the side effects of her meds, she knows how it will help her heal quicker, so she helps us decide the bruises that need Stimate and which ones she could go without.
6-It does get easier.
When your child gets diagnosed with a bleeding disorder and they still have to learn how to walk, run and climb. . . it can seem like a daunting task to keep them safe. But over time your child learns to be more aware of their surroundings, be more cautious and hopefully gets less and less injuries the older they get.
Written by,
Kari Peepe
Kari Peepe
©KariPeepe/atouchofscarlett.blogspot.com
http://atouchofscarlett.blogspot.com
For more stories on raising children, when one of them has a bleeding disorder please check out:
- Raising Siblings, when one of them has a special disorder: http://atouchofscarlett.blogspot.com/2013/11/raising-siblings-when-one-of-them-has.html
- A Mother's Guilt: http://atouchofscarlett.blogspot.com/2013/12/a-mother-guilt.html
- It Takes a Village: http://atouchofscarlett.blogspot.com/2013/12/it-takes-village.html
- My little prince, (the non bleeder): http://atouchofscarlett.blogspot.com/2014/01/my-little-prince.html
- Family Fun Days-keeping the kids entertained safely: http://atouchofscarlett.blogspot.com/2014/02/family-fun-days.html
- My son bites Scarlett: http://atouchofscarlett.blogspot.com/2014/02/no-no-bite.html
- The What if's: http://atouchofscarlett.blogspot.com/2014/10/the-what-ifs-of-life-with-bleeding.html
- A local flood, fills us with fear: http://atouchofscarlett.blogspot.com/2014/12/flooded-with-fear.html
- Call me paranoid, but this is the parent I've become: http://atouchofscarlett.blogspot.com/2014/12/call-me-paranoid-but.html
- Scarlett learns to give back: http://atouchofscarlett.blogspot.com/2015/01/the-gift-of-giving.html
- Scarlett learns to advocate: http://atouchofscarlett.blogspot.com/2015/10/proudest-momma-on-blockmy-little.html
- Becoming her own protector: http://atouchofscarlett.blogspot.com/2015/10/infusing-loveher-own-protector.html
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