Hi, all you moms out there, we have a new mom that is worried about her baby learning to crawl, walk, run and so on. Lets give her some words of encouragement. How many of our children made it.
With my son I padded the inside of his pants for some extra cushion for his knees, now they make pants and socks like that
I also padded the fire place and traded my square glass top coffee table for a round wood one.
That is the only thing that I did, but I am sure some of you other moms have some good ideas for her. I will check back tomorrow. Have a good night ohh I made sure that his shoes fit well, so he would not stumble good night everyone
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More words of encouragement. When my son was learning to crawl we found a wonderful product called "Heel Bo" (it is actually a cushion within a sock like material for adult heels.... However the Small size works perfectly for infants knees and elbows!) I put a set on his knees and another set on his elbows and it really cut down on the bruising.(And we had tile floors) The best thing is they are washable and can be worn under loose clothing.
You may be able to obtain them from your Home Care Company depending upon which state you reside in and if not there is a website you can order them for about $9 per set. It is www.AllegroMedical.com.
Good luck!
I, too, used elbow and knee pads. I bought knee pads but had a hard time finding elbow pads that would fit. I ended up cutting adult sports socks down and folding them over- worked great and washable! I also bought some old-fashioned cloth diapers and put one on over his regular diaper to cushion his butt. Worked very well! The learning to walk phase is really tough on moms because everything is new and scary. Please know that it will pass. I'm watching my 5 year old run around playing with his buddies right now, jumping, screaming, falling and I'm only suggesting that he keep his voice down a little!
I have an 8 month old son with Hemophilia A who is also just learning to crawl and these suggestions are SO helpful! I also wanted to ask if anyone knew of any websites to buy helmets? The only one I found was comfycaps.org.
I'm so excited that I found this website and I plan on checking it regularly! What a great place to get info. for moms who are so hungry knowledge and a sense of community right now.
Hi Jamie,
Thanks for commenting. We are so glad you find our newly established blog helpful...and we hope it will grow and grow!
I did a little research and found a couple of websites for soft/foam helmets and they are: www.southwestmedical.com and www.alimed.com. However they are a little pricey...starting at $60. I would encourage you to talk with your home care company or your Hemophilia Treatment Center. They usually will be able to refer you to a non-profit group who will be able to supply you with items such as helmets and pads for your baby (at minimal or no cost). The home care company I am with uses a company called PSI (Patient Services Incorporated)
I am also going to do a little more research for you tomorrow and will let you know if I can help some more. Have a great day!
I am glad to see some of you new moms out there talking. My son turned 14 last Sunday and we had a superbowl party for his birthday yesterday, talk about some rowdy boys. My friends and I sat around and talked about what life was 14 years ago,I came home 14 years ago yesterday...the fears, and the unknown that they had for me. Now we look and he is as normal as normal is. Just remember ask for help ask qustions and it will all work out, then you can have a superbowl sunday party with a bunch of rowdy teenage boys.
My son was just diagonsed with Severe Hemophilia B in October around his 2nd birthday. It is still all new to us and at first we were at the doctor or in the hospital quite frequiently. The thing that my doctor and my nurse practicioner said was to not treat them like they weren't normal and they also said that we did not need to pad their clothes and go out and buy a helmet. He got by for 2 years without us even knowing that something was wrong. I look back now and understand why he had some instances, but nothing horrible. We try to treat him as normal as possible and don't freak out when he falls or get banged up. I feel like if you put a helmet on them, you are handicapping them before they ever have a chance.
I agree with you 100% as a mom I feel that I have to treat the person inside and there is not enough medicine to fix a mental scar from treating them different,or making them feel handicapped, My personal feelings are that most hemophilia is an inconvience that can be managed and that we need to let our children be kids first and treat the bumps and bruises as such and let them enjoy life.( as parents we have to be practical as to the needs I would not allow tackle football, but I did agree to allowing him to be the place kicker if he wished) remember they are people with hemophilia, that means they are a person first.
Thanks for checking in hope to hear from you again soon.
With my son, I worry every time he falls and gets a bruise. I don't treat him differently than I would if he didn't have Hemophilia. He has severe Hemophilia B. Does anyone else have a child with Hemophilia B or just A on this blog? I know B is less common. When you found out about your sons condition, when did you have to start prophylactic treatment? right away? When did you have to start? or did you at all? He already hates needles and I am worried about having to do that myself at home. Right now, after discussing it with our doctors,we don't have to do it, but they said eventually we probably will have to. He is such a boy and so rough already at 2. I am so glad that I found this site. I have been looking for someone else who knew what i was going through. My husband wanted to be able to control the situation because he is the man of the house, and I just want to know how to protect my son without treating him like he is not normal.
I have a question.... I work out at our local YMCA 2-3 nights a week. My husband and I try to work out our schedule so that someone is always at home with our son, but they offer free child care. I'm usually only there for about an hour. Should I take advantage of this? The girls that are in there look like college students and seem like they are responsible. Should I educate them about Hemophilia? Should i just ask them to let me know if he falls or gets a cut? How should I handle this situation? He stays with my mother-in-law during the day so he needs some sort of child interaction. The only interaction he gets is at the nursery at church (or with family) and I haven't even let them (the church) know about his situation yet. It is all still very new. We have only known for about 3 1/2 months. How do I educate my church? There is a different person in there every week. Do I need to tell them weekly or talk to the nursery coordinator?
Hemophilia A or B or even any other factor deficiency it makes no difference: this site is for everyone! And I am really glad you are here. I do want to comment on all of your questions but first I want to encourage you! The nice thing about Hemophilia B is that factor 9 has a longer 1/2 life than factor 8. So if you choose to do the prophylactic dosing you may only need to do it once or twice per week as compared to 3 to 4 times a week that we have had to do with my son who is severe A. Any needle sticks are tough but the fewer the better!
As far as prophylactic treatments that should be determined by what is best for your son. Each person is different and bleeds differently. I know some children who just treat for bleeds and have never been on prophylactic dosing, then there are others like my son who started around 10 months of age with factor every day. Some people that are severe bleed on average of a couple to a few times per month, then others bleed daily (like my son), and there are also the severes that only bleed several times per year. So there is a wide range of treatment options. The severe that only bleeds several times per year…it may not be worth it to do prophylactic doses, (the doctor will help you with this decision). For the ones that bleed a couple times per month…depending what kinds of bleeds they are may or may not need prophylactic (that of course, would be determined by your team of doctors). For the ones that bleed weekly or nearly every day…well…they are getting factor so much already that making it a routine may be a good option (again with the doctor’s guidance). Doing the dosing yourself at home is a decision you will have to make. I was SCARED to death!!!! However when I took over my sons care at about 9 months old our family had a new found freedom. We didn’t feel so isolated or fearful of going places because if something happened I could just open my “factor pack” and give him the treatment he needed. Now let me mention my son had developed an “inhibitor” at about 7 months old (and without sharing the terrifying details I will just say that he needed to have a port-a-cath placed). And I was even fearful of accessing the port, which is a more of a sure thing, rather than finding a vein and starting an IV. And I will add…yes…I failed the first time and missed several times after that. But my desire to be able to care for my son myself overruled my fear and I kept trying. He is now 7 years old, still has a port, but leads a pretty normal, active life. He plays baseball, golf, tennis, and soccer just to name a few. Yes Mom was a basket case on his first attempts; however I want him to be just another little boy who enjoys his life but has a few extra precautions to take. I have learned him and how he bleeds so am able to spot bleeds early and treat them. And you will learn this too about your son. As far as treating him normal….he IS normal…he just has hemophilia.
Now in response to you working out at the YMCA. This again will depend on your comfort level…however you must take care of you if you are going to be able to give your best to your son. I will just tell you what I would do; then you can discuss your feelings and decision with your husband. I would probably give it a try. It is only for an hour and they are right there in the same building so if something happens they can page you. I definitely would educate them about hemophilia and let them know that you need to know if there is a fall or an injury. As far as the nursery at the church I would do the same. Since there are different people each week you may not want to give a lengthy description of hemophilia, which will become wearisome. But I would tell them that he does have a bleeding disorder, that it is nothing to be afraid of, but you just need to know if there is an injury or a fall. I have done it this way with my own church. I have been asked questions as to what to do, or they have seemed a little fearful. After reassuring them that he is fine I tell them that if they are not sure about something just to page me. I have also spoken to the nursery coordinator as well.
Sorry this is so long but I just wanted help, and welcome you! Have a blessed day!
Mom of 4, Thank you for your encouragement and for answering some of my questions. My son really hasn't even had a bleed as far as we can tell, yet and he is severe. We are very fortunate. You know it's amazing how brave we are though in times when our kids need us. Does only one of your children have Hemophilia? Do you have any more boys?
I will try to take him and I'll figure out a way to educate everyone to the best of my ability.
Thanks again and have a wonderful day!
2 years old mommy
I understand that fear, my son is 14 and I went back to work at 4 weeks, it is hard to leave your child even for an hour, I would take him one time and you hang in the back and get a feel for the room a bit, so the both of you feel comfortable, if it seems safe give it a try, He will enjoy the other kids, and his independence. I would talk the the director about his bleeding disorder. thier are books available through your HTC, home car company or from hemophilia moms website regarding kids growing up and babysitting, they are free, request one, they are very informative.
We infuse our son at home, and I was so scared. I was not going to let hemophilia manage my life or my sons life we were going to manage it. I did not ask enough questions, please ask all of them, the one i did not ask is can the vein be ripped out if he moves during an infusion. THE ANSWER IS NO. I did not know that for years, so we held so still and held our breath. Now that we know all the details of infusing it is just a getter done type of thing.
Your treatment center or your home care company can help you with learning to home infuse when you are ready, if you try it and you are not sure that you are ready, just let them know they are there to help you and your famiy.
I just had lunch with a couple of moms that have boys with factor 9 deficient and they said they were going to check out the site, lets hope we hear from them. Thier boys were 11 and 13. As Mom of 4 said the blog is for anyone with a bleeding disorder or thier family and friends.
I am so glad to hear from all you moms out there hope to hear from you again soon.
Happy Valentines Day everyone
Rhonda, Thank you for all of your advice too. It is so good to hear from others who are going through the same thing since it is not that common. Many people have never even heard of Hemophilia or they have, but didn't know what it was called. I know a day will come when we will have to start infusing at home, but right now we don't and I am so glad for that right now. I did take him to the Y one time this week and it seemed to work out good. I am going to find a time when it is best for me to sit down with director and let her know what his condition is and also with my church Nursery. Thanks agian for all of your advice and support and for just sharing your experiences with me. Happy Valentines Day!
Hi 2 years olds mommy
Glad to hear you are finding support...that is the whole reason we are here!!
You had asked about my children...I do have 4 wonderful children. But only have one boy (my first born) and my welcome to the world of hemophilia. I did not know I was a carrier as hemophilia did not run in our family. So we had him circumcised at 2 days old...and our story begins...My very first baby was lying in the nursery bleeding to death...yes we almost lost him as our local hospital did not test for hemophilia. They just did sutures, blood transfusions and held pressure. After about 7 hours they called in a team of specialists to took him to another city an hour away. We had a terrifying first couple of years and were not even going to have more children. However, the Lord had planned otherwise. When my son was about 8 months old I found out I was expecting again. Now we have 3 beautiful daughters. Two are not affected and my baby (2 year old) is an affected carrier.
I will ditto what Rhonda said about resources. Your HTC and home care companies are a wealth of helpful information. They even have little booklets and pamphlets to help you better explain your sons needs to others. As you learn...you will become your sons best advocate! I know I have learned as we have gone. If you read some of the archive posts you will see how myself and others have handled situations as they have arisen.
Have a Blessed Day!
Mom of 4, that is awful! I probably would not want to have more children either if that had happened right off the bat. The crazy thing about our story is that the doctors did not report anything wrong with his circumcision, although when I brought him home, I had to be very careful when changing his diaper because it did bleed a little at home. i had to use an over abundant amount of vaseline so his gauze wouldn't stick to him. My Sone bruised very bad and I kept asking his pediatrician about it. We live in a town where health care does not have the best reputation. If you want a good doctor, you have to drive 30-60 minutes to a bigger city. I didn't do that with my pediatrician. (we moved and I heard he was good so I decided to try him) He only would check my sons iron levels. He would never do any more extensive testing. There are several times that a red flag should have been raised and he should have done another test. He didn't. We even took him to a revival at another church and put him in the nursery and afterwards the nursery workers cornered me and told me their concern for the bruises he had. I took offense to that right away. It really bothered me. He did have some awful bruises at the time. I told them that our doctor has done all kinds of testing on him and he was fine. I told her that we would never do anything to hurt him and that he was a boy and played rough. She, of course, did not have any children! I sent a letter to her pastor later because it hurt my heart so bad. He was about 20 months then. The day before his second birthday, he had fallen and hit his chest. He had a mini bruise and by the end of the evening, it had grown to a huge bruise that stuck out at least a half inch from his chest. I thought that he had a broken rib. We had a birthday party for him and a lot of my family expressed concern. They along with my husband and I knew something was very wrong. I immediately took him to the emergency room 1 hour away and it just happened to be in the same building as our hematology treatment center. The ER doctor along with the hematologist were able to diagnose his condition over the phone and we went the following day to the treatment center and did all of the testing and we found out the following week that he had Severe Hemophilia B. The doctors were shocked because we didn't have any major issues and he had been circumcised. It was a bumpy road after that. He busted his mouth open and we had to have a treatment twice for it and there was one time that we thought he could of had a joint bleed and they admitted him into the hospital. I don't think it was, but I think they were being proactive since we were so new to the situation. My son is traumatized already by needles. The first girl who drew his blood for the tests messed up and they had to stick him again. He was stuck 5 times in 1 day. He should of had 2 sticks and been done. That is the worst part is holding him down while he gets stuck and telling him that he'll be ok. I feel like I'm lying to him, because it still hurts and he doesn't understand. It really breaks my heart!
I am so glad that you decided to have more children and didn't let Hemophilia hold you back. There are some people in the world who would decide not to and I don't think that should be a factor. It all depends on the person though. I will definately have more children, Lord willing. I hope to have another one soon. Maybe two more! I always remember that God will never give me more than I can handle and that is the truth! We are so fortunate for the health that we have and I have seen that when I take my son to the treatment center. It is a hematology/oncology center. Most of the children that we see have cancer or luekemia and are very sick, while my son is usually playing with the toys and having a good ole time. God has blessed us. I feel like this is just a bump in the road and we are learning how to embrace it and get through it. I hope you have a wonderful weekend and thank you for sharing!
Dear Moms,
my name is frederica cassis, I live in Brazil, I am inviting you to visit my blog about hemophilia and my work with families and kids with hemophilia >
I am a psychotherapist that has developed flash cards that can be downloaded and then printed for you and your kids play and learn at the same time.
would you like to check it out?
I ve been with the community since 1991, when I was living in Montevideo, Uruguay and then I moved with my family to Brazil and started to work at the hemophilia center since 1994.
In my blog (that I started 11 days ago!! :), you will feel my kind of approach.
I 'm glad to share your experiences with the little ones and the not so little!
have a nice week end!
Hi,
My name is Amber and our son Mason will be 3 in May. He was diagnosed with severe hemophilia A while in the womb. My brother had the disease and we already knew I was a carrier. At 17 weeks, when we found out we were having a boy, we went ahead with an amniocentesis to find out if he had the same mutation as me and my brother. I remember receiving the phone call with the devastating news when I was 26 weeks pregnant. It was especially hard b/c I lost my beloved brother 6 years ago from AIDS when he was 26 years old. He contracted HIV when he was just 9 years old back in the
80's from the factor he was taking that was made from human blood products. So as you can imagine, we were pretty upset.
Today, Mason is doing well. We opted not to circumcize and he didn't have his first treatment until he was almost a year old, and that was from a mouth bleed when he had fallen and hit his mouth. So far, he has had no joint bleeds, only treatments for hematomas that were larger than a quarter and thicker than a pea, which our HTC says is the rule of thumb, or treatments for mouth injuries. We currently started prophy and a nurse comes out to our house 2 times a week to give him his shot. We plan to learn soon to do it ourselves but right now he is still very resistant to his treatment. He is getting better however, and we've started letting him push the syringe and pick out his bandaids and sometimes he helps me mix his factor. I think all those things help keep him engaged. He's also starting to understand why we're doing it, which is helping.
As far as crawling/helmets/protection, our doctors and nurses were very adamant that we do childproof our house, but not to treat him any differently than an ordinary child as far as putting a helmet on him, putting in kneepads, etc. We feel very strongly about this as well, and plan to let him play sports (within reason, obviously no football or wrestling) when the time comes if he chooses.
Hi Mom2mase, I'm glad that yoposted your comment. My son u will be 3 in October and it is nice to relate to someone who is kind of in the same boat as me. would you e-mail me personally? I have some questions I would like to ask you and your opinions. my e-mail is cassadas@earthlink.net and it will probably ask you to request my permission to send an e-mail. I really need someone on the same page to relate too, you know it?!?!? Fortunately I have never had any experience with this before, so I'm completely in the dark. If you don't feel comfortable e-mailing me personally that is ok.
Hi, I'm the mother of an almost-2-yr old (he'll be 2 on the 20th) who has severe hemophiilia a and we just experienced his first spontaneous bleed about 3 weeks ago. He's had 8 factor treatments since that first bleed, 1 to treat, a larger dose to hold him over until we could start prophylaxis, and 3 x's a week for the past two weeks. Friday he had a treatment around 12:15 and then yesterday after coming home from my mom's (she lives a couple of hours away) i found that in those two hours he had gone from actively walking and running to being unable to support himself. He ended up having a breakthrough bleed in the same knee as before. Up until now we have tried not to be too overprotective and have treated as needed (he had a couple of minor incidents this past summer that were both caused by minor trauma) and now we were going to move to a large dose one time a week for his preventive treatments. Of course, after yesterday I am kind of freaking out. I'm familiar with the disease because my father had the same, but he passed away 13 years ago from complications related to but not caused by hemophilia. If anyone has any advice for me, please share. I want to be encouraging to others that are dealing with these same issues but I'm having a hard time staying positive with how the past month has been going.
o yeah, the main reason I was going to respond to the topic in the first place was that when my son was starting to crawl and pull up we ended up buying a "bumper bonnet" for him. Our doctor wasn't for or against it but told us to try whatever would make us a little less stressed about his growing, as long as it didn't hinder his growth. You can get them at www.onestepahead.com for about $20. It's not a bicycle helmet but it does add some padding in the event they bump their head. As for his knees and elbows we tried to just keep him on carpet or rugs and in the grass outside, i still hover a little bit when we are on the concrete patio even though he has been walking for over a year now. the knee pads we did buy for him didn't stay on and he went quickly from the crawling to walking stage so we ended up just trying to keep up with him.
Hello ladies, I'm the new mom the originally asked about the crawling. My computer has been down so I'm just now able to read all the responses. This was my original post:
"My name is Marsha, I am 24 and I have a son who is 5 1/2 months old. He was diagnosed with Hemophilia B when he was two days old after his circumcision wouldn't stop bleeding. I have a cousin with Severe Hemophilia B but had no idea I was a carrier, I told my Dr. about my cousin when I first learned I was pregnant but they didn't seem concerned and so neither did I. Little did I know what was to follow. My son is a blessing and I love him SO MUCH. But I am scared! Thankfully we haven't had any bleeds since his circumcision but crawling and walking are just around the corner. I am terrified to say the least. Any advice you ladies have for me would be greatly appreciated. Please feel free to email me at marsha_mackenzie@yahoo.com
Thank you so much for starting a fourm like this for moms like me who know nothing can learn something...."
I saw that there was another new mom that has a son with hemophilia B also(2 year olds mommy). I'm so glad that this site has picked so many moms recently! It's nice to know that there are other moms who know and feel what I'm going through.
Mom of 4 thanks for the "Heel Bo" suggestion. I'm defiantly going to give them a try. I think if we had carpet I would be a little less concerned, but because of the hardwood I think Sean is going to need a little padding.
Sean is now 7 months old, and thank God we still haven't had any bleeds since the circ. He will be crawling in the next week or two. Right now he is scooting, it's really cute :) Reading all of the posts you ladies wrote gives me such a peace of mind. I really admire all of you and again am so thankful I found this site!!
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