Hemophilia Support Group

My son Ben is almost 12 weeks old.. He has Hemophilia type A. It was quite a surprise since we have no family history of it. I would love to talk to anyone who could be supportive. I am 25 and my hubby is 23. He is active duty army and Im a nurse (who is now a stay at home mom). We are currently stationed in Louisiana but will be going to GA soon.

Hi,

My name is JoAnne my son Peyton James {PJ} is 14 months old with severe Hemophilia A. He is on prophy now 2x a week Prophy just means he get's factor 8 2x a week if he has a bleed or not.

My son is starting to walk now and it worries us so much but we have all his clotes padded and he wears a helmet. My brother who is 24 also has hemophilia and so did my 2 uncles but they both died. About 40 years ago they did not have factor so my Uncle was 3 and he hit is head in a play ground and they could not stop the bleeding and my Uncle died from HIV he got from the blood. They did NOT check the blood.

I am so greatful that we have factor. Do you have factor in your house? We carry it with us all the time. Do you have amicar? We keep that on us all the time to that is for a GI,MOUTH OR NOSE BLEED.

I am a stay at home mom now too cause after I had PJ I just could not leave him. I worked in a hospital for 6 years as a phelebotmist. We started to infuse PJ at homenow but he has very bad veins.

Do you guys go to an HTC {Hemophilia Treatment Center} They are the best thing for them.

Here is helpful info

There are groups you can contact who will help you out and give you free info i contacted them and they are really nice and helpful they are called the hemophilia association of new york inc 104 east 40th street suite 506 new yor,ny 10016 telephone number 1212-682-5510 or fax number 212-983-1114 or email: hany@bestweb.net or www.hemophilia-newyork.org . you should give them a call they are very helpful

There are allso some web pages that have helpful stuff for moms that have kids with hemophillia http://kelleycom.com/contactus.html --> this web page you can get free books and the books are great

this web page http://home.comcast.net/~bruzwear/shoponline.html ---> this one you can get clothes that is made by a mom who has a lil boy with hemophillia and they have pads in the knees allready the clothes are real cute

this web page you can get free stuff http://www.uneedpsi.org/CMS400Min/patient_community/ index.aspx?id=152&ekmensel=77931891_40_0_152_3

http://www.freedrugcard.us/?OVRAW=www.uneedpsi.org.&OVKEY=uneedpsi.org&OVMTC=standard&OVADID=1000105522&OVKWID=34657226022

One step ahead magzine is great they have soft toy's and the padding for the tub this is what I bought to padd the tub so PJ dont get hurt

http://www.onestepahead.com/home.jsp?cm_ven=Google&cm_cat=Brand&cm_pla=onestep%5Bahead&cm_ite=null&orderType=1

Here are some help full web sites I hope this helps you.

http://kidshealth.org/Search01.jsp

http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx? menuid=0&contentid=1

http://www.blogger.com/home

http://www.uneedpsi.org/cms400min/index.aspx

THIS COMPANY WILL GIVE YOU FREE HELMETS AND FREE KNEE PADS AND ELBOW PADS AND THEY PAY FOR TYLENO

http://www.nyhemophilia.org/

http://www.uneedpsi.org/CMS400Min/how/index.aspx?id=158

http://home.comcast.net/~bruzwear/press.html

http://www.comfycaps.biz/

THIS IS THE HELMET WEBSITE

http://www.bruiseybee.com/about.shtml

My son has overalls from this web site. They are great but they cost alot they are $90 for one pair what I did was for PJ's 1st birthday I told everyone to but him hemophilia padded clothes and I gave them all the sites and everyone bought PJ clothes this was one of them.The padding in these are great cause there is padding on the butt!

http://gissybella.com/catalog.php?category=7

pj IS THE HEMOPHILIA MODEL FOR THIS SITE =)

http://www.amazon.com/s/ref=bl_sr_baby-products?ie=UTF8&search-alias=baby-products&field-brandtextbin=Krawlers

http://www.comfycrawlers.com.au/

GREAT knee pads but PJ was too chubby for these and he kept taking them off that is why we just put padded clothes on him that way he cant take the knee pads and elbow pads off

http://www.beeskneesbaby.com/html/contact.htm

Here are some organizations that may be of assistance:

NYC Hemophilia Chapter

(212) 877-0280

www.nyhemophilia.org

Resources for Children

(212) 677-4650

www.resourcesnyc.org

Provide resources for Early Intervention

Disabled Children’s Relief Fund

(516) 377-1605

www.dcrf.com

Provide financial support

OMRDD Staten Island Community Office

(718) 983-5200

www.omr.state.ny.us

Ask about Family Reimbursement Program

Esther Curenton, LCSW-R

Children With Special Health Care Needs

Bureau of Health Insurance Services

Department of Health & Mental Hygiene

161 William Street, 6th Floor Cu #630 CN 29C/29H

New York, N.Y. 10038

Phone: (212) 788-5540

Fax: (212) 227-7576

This company will help you pay for co-pay and any medical bills they will pay for padded clothes and safety matt's. I have safety matt's in my house were PJ plays on. Do you have Facebook? If so look me up JoAnne Moss Staten Island NY. You can see the helmet PJ wears and you can see the matts he plays on. Were do you live? We live in NY

I talk to alot of mom's on there who have kids with hemophilia I can suggest them to you on FB

Hugs

JoAnne

hey joanne!! thanks for all the info there are 145 joanne moss on facebook. heres my link. www.facebook.com/elizabethrp

OK thanks I will request u now hun