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!
38 comments:
I've commented a couple of times, but my name is Jaime and I have an 11mo son with severe Hemophilia A. I'm so glad to have this blog to use as a reference and for guidance! I know we are just getting into the "fun" stage of his life with Hemophilia, so I know I'll have lots of questions for you all.
My name is Sara and I have a 10-month-old son with mild/moderate hemophilia a. I say mild/moderate because he has come back with different levels, and I am not sure which is true. The nurse that I deal with at his treatment center thinks he is probably more moderate because of the way he bruises so easily while crawling.
Evan (my little guy) was diagnosed when he was 2 days old after having his PKU heel prick. There is no family history of this, so it caught us by complete surprise. I am still sort of in denial that he has this. I have a 9 year-old who doesnt have it, and I just always assumed that I would raise my new baby with the little worry that I had with my older son.
I feel sometimes that I should be over the sadness and the inability to understand why he has this, but I have yet to get there. I am scared that something terrible is going to happen to him and I am not going to know what to do. I wish that I didnt feel like this, because I know that it isn't healthy.
I hope to be able to use this forum as a place to get answers when I have questions that only others who experience this have gone through. I am really glad to have found this site.
Hi Sara! Welcome! My name is Marsha, like Jamie I've posted on here a few times as well. I have a 9 month old son with Hemophilia B, we found out when he was also 2 days old after his circumcision. I have a cousin with hemophilia b as well, he is severe. Sean (my little man) was moderate when he was first tested but hasn't been retested. They tell me that he is most likely severe since that is what my cousin is and it's a hereditary gene.
Sara, I think it's normal to feel the way you feel. I'm scared too! But the women on this forum are so helpful and full of useful information that hopefully it will give you a little peace of mind. I know they've helped me. Just knowing that they are here to help gives me a since of calmness.
I would like to address my comment to Sara (sarabean) as well as any others who may be feeling scared the way she is.
My son is now 8 years old and is active, healthy, thriving and happy. But it really did not start that way. His diagnosis was a complete surprise and I was in denial, felt guilty, fearful, didn't sleep, you name it I felt it. My son is a Severe and also had developed an inhibitor (a condition where his body rejected the factor and destroyed it) at 8 months of age. We almost lost him on two different occassions due to severe bleeding. The fear, sadness, pain and worry were overwhelming. At one point I thanked the Lord for the 8 months with my son, because I really thought he was going to die. However even though over half of his blood volume was gone...he made it!!!!!
I did worry and wonder why he has to go through all of this, so I battled with not only fear but anger as well. Through the encouragement of other moms, my husband and the Lord I was able to realize that there is a reason for all of this. There are so many wonderful people that have come into our lives as a result of my son's hemophilia. People that have become so precious to us that I can't imagine life without them. Also opportunities for personal growth have presented themselves. Our family is a stronger, more sensitive one today because of hemophilia. This crisis has made us more thankful for each day and to look for the good in all situations.
I hope that you too can find comfort in knowing that all things really do work together for our good...if we let them. Enjoy that precious baby!
Many blessings to you!
Hi, my name is Nichole and I have one son with severe hemophilia type A. He was diagnosed at 3 days old, after they did his PKU test at the hospital he wouldn't stop bleeding. I am new to this site and would love to share stories, questions, and concerns. This has been an a very scary road for me, but lately things have begun to get easier. I am so greatful this site was started!
nichole, its pretty strange that both of our boys were diagnosed the same way. i assume there was no family history for you either?
On May 15 my son was rushed to UCLA ICU after having suffering a seizure. He had had a fever of 101.8 the day before and I had taken him to the pediatrician who told me he was probably just getting some of his top teeth and to take him home and give him Tylenol every 4-6 hours. Well after being up all night with a screaming baby he finally went to sleep at 7am, I woke up at 8:15 with him having a seizure. When he got to the ER they gave him his factor, inserted a breathing tube and put him on anti seizure medication before doing a CT scan to find a substantial bleed between his skull and his brain. He never hit his head I am with him 24/7. There were no signs of trauma. They did a spinal tap, MRIs and several more CT scans. The bleeding has stabilized and he did not need surgery. There are no signs of infection or any reason behind the bleed besides just a spontaneous bleed due to hemophilia. Today he is out of ICU but still in the hospital for observation. They are going to monitor his bleed and factor levels over the next week and on Monday going to either insert a broviack line or port they haven't decided what's best for him just yet. For the next year he will get factor every day. This has been the scariest thing that I have ever gone through... Please pray for my baby boy!
Seansmom,
I am so sorry to hear about your son! How very scary for you! How is he doing now?
Oh my goodness, I'm so sorry to hear about your son! I can't imagine how scary that was. My son has had a fever of 100 for the past 24hr and we also think it's teeth. Did you son have any other symptoms other than the seizer & fever?
Dear Marsha (Seansmom)
My heart goes out to you and please know that you and your family are covered in prayer!! May the Lord bless you and keep you, and let His peace which passes all understanding keep your heart and your mind.
I know you may not have access to a computer while at the hospital...and I am sure you are there 24/7. Please let us know how Sean is as well as how you are. Also know that we are all with you in this.
I pray for much strength and peace during this difficult time.
My name is Heather and I have a 7 week old son. He was diagnosed with mild/moderate hemophilia (5% right on the border)after we brought him home from the hospital and his circumsicion. Afer 3 bloody diapers, 2 times he was drenched in his own blood, they finally stitched him closed and 4 days later told us he has hemophilia A. We have no history of it in mine or my husbands family. Like Sara mentioned earlier, I am really scared for the first year. I have a wonderful Hemophilia Center at the childern's hospital in my city, but I am still worried I will miss something as he is growing.
heathera, if you would like to chat or vent or cry or anything, you can email me at sara.m.workman@gmail.com
seansmom, i am so sorry to hear about your little one. i hope that everything is alright. please let us know how he is feeling. and if there is anything i can do, just to talk or anything, please let me know.
Sean is doing great. Thank God he has made a full recovery. He is still in the hospital. It will be 12 days tomorrow, I am so sick of the hospital!!!... and so is Sean! We're just waiting for them to put his port in on Thursday and then he gets to come home Friday if all goes well. I'm nervous about learning to access the port. For you moms who have boys with ports I would like any information you have to offer. As of right now they want him to be infused EVERY day for a year, and 2-3 times a week thereafter. I think I am scared for life after this incident. A spontaneous bleed in the head is something I NEVER want to happen again. But how can I be sure? I thought I was paranoid before this happened and now.... I can't even tell you!!!! If my son is infused every day does this mean his clotting factors are the same as anybody without hemophilia? Or is he still at a higher risk to bleed even though he is infused everyday? And how common are infections in these ports?
Dear Marsha (seansmom)
Thank you Jesus that your son is doing well! We have been waiting for a good report!
You have every reason to be fearful...however things will get better. My son is now 8 and is on his 4th port. He had his first one placed at 8 months of age after losing over 1/2 of his blood volume and nearly dying. I was very scared for his future, which I am sure you are too at this point. The port will make it much easier for daily infusions and once you learn how to access and care for it you will be able to take over your sons care! Which will be very empowering for you. You will be able to give him what he needs when he needs it and no longer will you have to depend on others to care for him.
Only blood tests can say for sure what your sons factor levels will be with daily infusions. But as long as there is not an inhibitor his levels should remain quite near the normal range. Which should cut way down on the bleeding.
As far as infections go... thats tough. Every child is different. I know children who have never had an infection and others who have them quite often. Sterile technique will help cut down on the chance of infection but cannot eliminate the chance. My son has lost two ports due to infection, another port completely wore out from use and had to be replaced, and he still has this one. What was really strange is that whenever my sons port was on the right side of his chest it became infected quite often and both of those ports had to be removed because infection would not clear. The doctors said it may be something in the tissue on the right side. The other two ports on the left side, the present one and the one that wore out...have been a dream. No infections and easy to access.
YOU WILL DO GREAT! We are here for you! Give that precious baby a hug from me!!!
I have a question for everyone about factor levels. Has anyone's son been given different levels and there for different diagnosis?
E's first level came back at 5.9%. When he went for his circ, they came back again at 5.9%. He had to go back to the hospital for a head injury and infusion, so they took his levels again and they came back at less than 1%. The nurse was upset by this and had me come back two weeks later for a retry. His levels came back this time at 15%. She was pretty amazed and had them do another factor level from the second tube of blood they got that day, and they came back at 3%.
The nurse seems to think that the 3% (moderate) diagnosis is the most accurate, even though he was tested at the 5.9% level twice. She thinks he is a moderate instead of a mild because of the ease of bruising on his arms.
Does anyone have experience with this? Does something seem off to you about it?
Hi Sara (sarabean)
The level testing is a tricky thing, especially if he has been bleeding or has had factor. Initially my son was tested at about a 3% but they told me it could be inaccurate because he had received some red blood cells because he had lost so much blood. The second time and the third time just to re-check he came back at <1% severe.
My guess is that it makes sense that his level would have been <1% because he was bleeding, and whatever level he had was used up. My second guess is that the 15% level (two week later) may have to do with the fact he had just had a head bleed and was probably getting factor daily. Depending on what time of the day after the infusion the labs were drawn that would make sense too.
To get the most accurate reading he really should not receive factor for a minimum of 48 hours before a lab draw. 72 would be better. Since factor VIII half life is approx 12 hours. His body should have cleared is by then. Then you can see exactly what is there. Also the testing is very sensitive and varies because of how the lab handles the blood. It is very easy to get a false low level but it is virtually impossible to get a false high.
I hope that is helpful to you. In reality the levels are not as important as recognizing and treating a bleed. Whether it really is 3% or 5.9% makes no difference as long as he gets the factor he needs. The most important thing is that your precious baby is taken care of!
Many Blessings
mom of 4, thank you for your feedback. the thing is that all levels were drawn before any factor was given. the first time it was taken they thought it could be off because he was just two days old and they thought he could still have some of my factor in him from birth. he is only given factor on an as-needed basis. i know that his levels aren't super important, but my husband and i feel confused by all the different levels. and we dont know whether or not he is truly mild or moderate.
HI everyone! I am so glad sarabean (sara) told me about this site! I had never heard of it before, but after reading & crying for the last half hour I can see that it will be very useful!
My name is Meredith & I have an 8 1/2 yr old with severe hemophilia A (less than 1%). He was diagnosed at 5 days old after bleeding for 3 days from his circumcision. Needless to say we were a mess-1st child, no family history, cluelesss new parents to top it all off!
BUt 8 1/2 yrs later I can tell any of you "newbies" that Riley is the most typical little boy! He is in 2nd grade, plays baseball, soccer, rides a bike, scooter, goes to bday parties with jumpy houses, etc.... I hope that can give you even a little bit of comfort. I know w/o a doubt that the port he had and the regular propholaxsis he is on makes that possible for him to do and for me not to worry (so much). I look forward to meeting and chatting with all of you!
To seansmom: I am so glad to hear your son is doing ok! After 6 1/2 yrs w/a port I feel like I could have done it blindfolded, but initially I had ALOT of your same concerns. If you have any questions or want to talk about ports just email me at meredithfarrell@hotmail.com. I live in Orange County, so I may not be too far from you!
I was wondering if someone could let me know what level you decide to port your child at. I am new at this and was just wondering.
Hi Heather!
I think the port decision for everyone is very different, very specific by child, and very specific to personal belief-but for me, the decison to port (after not wanting to) came when the time spent in the ER and time spent in a constant case of worry outweighed the times of calm and ease. I was always constantly concerned about what MIGHT happen, whereas after the port was put in, all I had to worry about was TREATING what HAD happened. When you're dealing with an infant/toddler, or young child-that is a huge difference, and for us it made all the difference in the world!
HELP! I need advice from all you moms who have boys with ports. Today was my first time infusing Sean. It was a nightmare! I went into it feeling confidant but now I'm a little discouraged and I have to try again Friday. Today Craig was holding Sean on his lap with his hands by his side I was able to stick him in the right spot get the blood return, flush and then give the factor but when I went to reach for the second flush Sean got very upset and the needle came out... So I had to stick him again and I didn't get it in good the second time... the entire time he was screaming bloody murder. The nurse had to finish for me. When your boys were little how would you hold them down? What did you find worked well as a distraction? And when does this get easier???
Way to go Sara (Seansmom)!
The first stick is the hardest! And you did great! As for me I didn't do so good... didn't even get a blood return, my son was screaming the whole time, I was a puddle of tears and I made the nurse do it. But I managed to pull myself together the next time he needed factor and had success. It does take some getting used to. Because you will find that the port does move a little and you do need to get the proper angle. It will all come with time. Some days will be better than others.
As for holding, we tried everything. One of the things that helped was something called a pedi-wrap. It was given to me at the hospital and covers both arms and justs hold them straight so he cannot bend at the elbow, thus not being able to reach the needle and what you are doing. I actually have a nearly new set that you are welcome to. You can e-mail me at kaspacek@yahoo.com if you are interested I will give them to you.
Sean is blessed to have a wonderful mother like you who is so willing to step up and do what it takes in caring for him. This type of care is stressful and difficult. I commend you!
Many Blessings!
Sara~
Congrats on getting through your first poke! Rest assured, it only gets easier from here! Have you tried any numbing cream from your dr? I know it takes some time to take effect, but after 20 minutes or so, you're good to go. Plus now there are these new patches called Synera patches that our Dr gave us to try-they are a teeny bit faster to take effect, and no messy cream to deal with! After a while you will not need anything to numb the skin, the scar tissue build up will take care of that & they won't feel anything....but in the meantime these might just do the trick! It worked for us when our son first had his port put in, and also recently when it came out & we started doing it peripherally. Please feel free to email me at meredithfarrell@hotmail.com if you have any questions. I live in Orange County so I am close by too! Good luck
Oops! Sorry seansmom-I meant Marsha, not Sara:)!
Meredith, I do use the numbing cream. I know it doesn't hurt him becasue the first time the nurse cam I held him while she infused and he didn't make a peep. I think it's just him seeing me and wanting me to pick him up.... Today was a better day, I strapped Sean in his high chair with a towel wrapped around his mid-section so he couldn't lift his arms and it worked perfectly! He did cry the entire time but it was just a get me outta here cry... The first time I stuck him I got it a little to high so I had to do it once more but I got it and the rest was so easy! I really hope he can get used it this and doesn't cry the entire time but other then that I think I got it. I just hope I can get it the needle in on the first try next time!!!! That you ladies for your help!
Hey ya'll my name is jina !! I am not a mom of a hemophiliac but my 35 yr. old brother has it , my 9 yr. old nephew, and my newborn nephew was just diagnosed with it !! They are all severe A factor 8!! my brother is a typical looking older hemophiliac..skeletal looking joints, bad arthiritis, etc.my nephew on the other hand you can't tell he has anything!! i just want to throw some love on this group because i wish my mom would have had something like this when my brother was growing up !! god bless ya'll for your time & love !! it can be a scary place for new moms with no experience with the disease!! ttyl, jina
Hello, I am alex, I have a severe hemophilia and administered a blog of a committee of the association of young Peruvian hemophilia.
I wanted to ask if they could speak in an entry in his website and blog.
Here I leave my email. Alex_17_3064hotmail.com
Zorry but i don't write english very well.
thanks.
We had our first joint bleed with Reece this week (very scary) and now the docs are worried he may have an inhibitor. After his first dose of factor his bleed did not stop. His factor levels were also still "very low" the next day so they gave him a second round. The bleed did finally stop, but they have sent blood samples to the Mayo clinic to be analyzed. Does anyone have any experience with inhibitors? I know nothing about it. Thanks!
Hi Jaime,
I am sorry to hear about the joint bleed, those are painful and sometimes hard to control. So hopefully that doesn't necessarily mean that he has an inhibitor. However it is good that they are testing so you will know for sure and can plan treatment accordingly.
My son (who is a severe Hemophila A) had developed an inhibitor by the age of 7 months...so we have been through alot. First of all they will test his titer (the reading will be in Bethesda units). There are different types of inhibitors: Low-titer, High-titer and transient. The Low-titer is a Bethesda Unit reading of 5 or less...this type of inhibitor can often be managed by using high-dose factor 8 to control the bleeding. The High-titer type ususally requires a bypass therapy because the body quickly assimilates the factor renders it virtually useless to stop bleeding. Then there are the transient types that "come and go" sometimes they bother the factor and other times they don't. Treating inhibitors is a very indivualized thing and your doctor will put together a plan if necessary.
This is just a brief introduction to inhibitors and it does get very technical. I would be happy to chat with you and try to answer any questions I can. You can e-mail me at kaspacek@yahoo.com. Hopefully the tests are negative! But I am here for you anytime!
Many Blessings!
Jaime,
I'm sorry to hear about Reece's joint bleed :( How is he doing now? I don't know much about inhibitors but I am praying that it's not the case in your situation. Keep us posted.
Marsha
Jaime,
How are you guys? Is Reece doing better?
Hi, sorry we have been non stop this summer. Yes, we got the results back that he does NOT have an inhibitor (thank goodness)! However, his levels were still low even after his second treatment. Since our reg. doc was out the last two weeks, they said we would need to check back with her, and do some tests to see what's going on. I'll keep you all posted. Thanks for checking on us. I also have a family blog that I update if you guys want to check it out www.thecowancrew.blogspot.com
Hi, my Name is Nichole, I have a son who just had his first birthday with Type A, moderate. I am reading about the variations in levels when our kids are tested, Jake was tested after birth (we had the cord blood kit, we knew he had it prior to birth) and he came back at 2%. I would like him tested again, or should I just go with this level? We are surprised, as my dad has a level around 9% at a mild level. Any opinions?
Nichole F.
Hi Nichole,
Welcome to the blog. I completely understand your concern about levels. I recently had a conversation with a local Hematologist who specializes in bleeding disorders. He mentioned to me that depending on how the blood sample is handled...it is easy to get a false low level. However it is virtually impossible to get a false high level.
If you are concerned about an inaccurate reading you may want to talk to your doctor about having the levels tested by your Hemophilia Treatment Center. The lab their hopefully would have experience in this kind of delicate testing. Best Wishes!
My 9 month old nephew was just diagnosed with hemophilia type A. The doctor keeps pushing for this synthetic drug that he would be on the rest of his life. What I'm seeking is help in other treatments that could actually help him grow out of it like I have read about in some cases. I heard that this synthetic drug could basically remove any chance of him hopefully growing out of it. Please help
Lexy
Hi Lexy. I am not sure what you mean by a "synthetic drug". Do you have the name of the Factor Product that the doctor is suggesting? That would help me to better address your concerns. My son has severe hemophilia A and is currently 16 years old. He has been using recombinant factor all his life and is doing fine.
I have not heard or read of anyone ever "growing out of" Hemophilia A which is a Factor 8 deficiency. There are levels of deficiency. There is Severe which means less than 1% clotting factor is present in the blood. There is Moderate which is 2% to 5% clotting factor present...then there are the Mild cases that can range from 6% to 50% clotting factor present. As you may see from the percentages of clotting factor present that bleeding patterns vary widely.
There are also people who have Hemophilia B which is factor 9 deficiency. There is some documentation that factor 9 levels can increase as a person ages. Again there are the levels of severe, moderate and mild. Although it is extremely rare one could possibly "grow out of" hemophilia B if he was a mild an had a higher percentage of clotting factor to begin with.
You best advice will come from a Hemotogist that works at one of the federally funded Hemophilia Treatment Centers. These hematologists specialize in the treatment of bleeding disorders. If your nephew is seeing a hemotologist that is not affiliated with an HTC chances are they specialize more in oncology and are not as well studied in treating Hemophilia. You can go to the National Hemophilia Foundations website and look up the Treatment Center closest to you.
Hi Lexy. I am not sure what you mean by a "synthetic drug". Do you have the name of the Factor Product that the doctor is suggesting? That would help me to better address your concerns. My son has severe hemophilia A and is currently 16 years old. He has been using recombinant factor all his life and is doing fine.
I have not heard or read of anyone ever "growing out of" Hemophilia A which is a Factor 8 deficiency. There are levels of deficiency. There is Severe which means less than 1% clotting factor is present in the blood. There is Moderate which is 2% to 5% clotting factor present...then there are the Mild cases that can range from 6% to 50% clotting factor present. As you may see from the percentages of clotting factor present that bleeding patterns vary widely.
There are also people who have Hemophilia B which is factor 9 deficiency. There is some documentation that factor 9 levels can increase as a person ages. Again there are the levels of severe, moderate and mild. Although it is extremely rare one could possibly "grow out of" hemophilia B if he was a mild an had a higher percentage of clotting factor to begin with.
You best advice will come from a Hemotogist that works at one of the federally funded Hemophilia Treatment Centers. These hematologists specialize in the treatment of bleeding disorders. If your nephew is seeing a hemotologist that is not affiliated with an HTC chances are they specialize more in oncology and are not as well studied in treating Hemophilia. You can go to the National Hemophilia Foundations website and look up the Treatment Center closest to you.
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