Anyone have 2 or more children with neonatal alloimmune thrombocytopenia

hi--noticed that nobody replied to you--I am sure it's not for lack of concern--we all just never heard of it--did you try doing a web search on it? Also--go to Yahoo Groups--there are all kinds of catagories--look under medicine, children--etc.--then type in the name of the disorder---keep trying---a lot of yahoo groups are comprised of people with same interests or problems and become very close---best to you---LoveMyDog

Hi, i have had two babies with alloimmune thrombocytopenia. Unfortunately i lost both of mine but i have also been looking for someone with this same problem. I am also trying to find as much about this condition as i can as i am considering trying for another baby if anyone can help please email me

I have also had two babies born to allo immune thrombocytopenia and am also looking to find someome with the same condition and as much information that anyone can give me.

I have one son but have been to afraid to try again for lack of information. But I have also started a support group on yahoo for Nait. There is one woman on there who has had another child after the first. Please email mne and we can at least all have a central place to share NAit information. Please see link attached. We currently have about 9 members. Only 1% of the population has nait complicated pregnencies so we are like finding needles in a haystack.

Click on my user name for info and the link to the yahoo site :) Thanks
Steph

Hi, I have 2 boys. My first is a healthy 5 year old. My second suffered a stroke inutero and has mild cp. After having a miscarriage my high risk doctor sent my blood and my husband's out to Wisconsin for NAIT testing. It came back that my husband has a platlet HPA 1a/1b where I have HPA 1a/1a. Because my second son went to the regular nursery after he was born and we didn't know no tests were done to see what his platlet count was. I then had two more miscarriages and am know pregnant. I am very anxious and scared. I have great doctors though and we are prepared because of the first miscarriage I had that enabled us to find the NAIT info. out.

Homeopathy is concerned with the totality of the patients symptoms, not the endless names or labels of conditions.
Elizabeth

I was just trying to give a bit of information about my situation because I am pregnant again and have two other sons. It is believed that my second son suffered from NAIT. I am going in for an ultrasound in 2 and 1/2 weeks. At week 13 I am having a first trimester screening. Then at week 15 my high risk doctor who has dealt with many NAIT patients is giving me an amnio. From this he will be able to tell if the baby has my husbands makeup then we know I need to go through the IVIG 12 hour treatments 1 day a week from week 18 on until I deliver at 37 and 1/2 weeks. If the baby has my makeup then things should be okay. I hope this information helps.

I realize many children out there have died. I'm not being insensitive but I did have a son who suffered from it- the doctors think. I was lucky in the sense that the stroke my son had only caused right peripheral damage which has given him right sided weakness. Mild Cerebral Palsy. However, I did loose three other pregnancies and it's not known if NAIT had something to do with it. You are right--there are no signs until it is too late. However there are things that a high risk doctor can do to reduce the risk of NAIT once they know what they're looking for it's just a shame that there aren't any tests that could automatically pick it up.

Hi, I have a two year old son, stroke on left side of brain. I have another who is six and fine.
I am from Iceland and recently another child was born with the same complication, before there was only my son. The doctors here diagnosed this immediately, but have said that there is a 50% change of it happening again. If that happens there is a treatment but it is not without risk.It is not available herer in Iceland so I would have to travel to the U.K. for it.
Our son is doing great. He is walking with UFO´s not talking much, but considering the size of the damage better than we hoped.

love, Soffia

Hi i have just read your posting and unfortunately i know a fair bit about NAIT. My first child was born ontime but bruised which was put down to forceps, but lost 3 babies following Alloimmune thrombocytopenia is the cause. i have double negative antigen and trust my luck my hubby happens to have a double positive which means that all pregnancies with him are NAIT.
23wks.
As you can immagine i never wanted to go through this again later i found i was pregnant again, I had to give it a chance, this time i started treatment at 14wks with steriods and weekly ifusions of IG and then the baby started platelet transfusions at 21wks. in total he had 9 platelet transfusions and they couldnt control his count so he was delivered by caesarian at 30wks very sickly but he made it and is now a healthy normal boy with no afteraffects. Jack is his name and we owe everthing to professor Kypros Nicolaides at King College Hsp.
all of Jacks treatment was followed by the BBC for a programme "Life before Birth"

My little boy was born with neonatal alloimmune thrombocytopenia. He was born in the small town of Penrith and nobody could work out why his platlet levels were so low. They only tested as i have a negative blood group and my husband is positive. Eventually we were refered to Newcastle and the blood samples were sent there. By which time my Sons platelet levels had risen again. We have a very healthy 4 year old, but will not take the risk and have any more babies. If there was more information available and doctors were made more aware of the condition we may not have had the worst week following our Sons birth and may have tried for another baby. If we didn't have this problem we would certainly have had more children. I understand why parents still try for children having been diagonosed with this. As the erge for me is almost unbareable at times. However i am just glad to have one healthy child. Please mail any information of this condition and i would happily campaign to have the tests done as complusive.

In 2001 I delivered identical twin girls prematurely at 28 weeks (due to no movement/fetal distress), and lost one right after delivery due to NAIT. My surviving twin had a grade III brain bleed, but is now miraculously OK at three years of age. Last year we lost another baby at 20 weeks (NAIT diagnosed after amnio at 16 weeks), at our first appointment to start IG infusions. We may have started treatment too late. I am now 11 weeks pregnant and see the specialists tomorrow about starting IG infusions at 12 weeks until we confirm/rule out NAIT with an amnio. We are in Pensacola, FL. I agree that it is so hard to find out about subsequent pregnancies. The doctors have mostly discouraged us from trying anymore due to the severity of the first occurrence. This is probably the last time we will try. I would be interested in hearing from folks with IG experience, and will try to find the internet groups mentioned here.

I have concerns with this being posted in a homeopathic message board. NAIT needs aggressive conventional treatment. I don't want to offend anyone at all I am a baby food making breastfeedning mom myself who understands how valueable homeopathy is but NAIT needs conventional treatment. My son was born severly affected by NAIT. I have a support group for NAIT on yahoo.

Click on my user name and profile for more information. I too had three pregnancies in which NAIT was diagnosed.

I too have had 3 pregnancies in which NAIT was diagnosed. We have 2 healthy sons ages 4 and 6, and unfortunately just lost our baby girl 3 weeks ago following a platelet transfusion.

I am very sorry for your loss. I have two sons also. Our first was born no complicationa. Very healthy. Our second son had a stroke inutero that was discovered at about 8 months of age. He has cerebral palsy with a right sided weakness. Other wise very healthy. I've had 3 miscarriages with the first leading us to finding out that my second son had a stroke due to NAIT. I am now 14 weeks pregnant again and very scared. I will be having an amnio in 2 weeks which will tell us whether I need to start IVIG treatments 1 day a week for a 12 hour period. They will then give the baby prednisone 4 weeks before delivery to increase platlets. This waiting game is killing me.

HI,I have a 10 1/2 month old boy who was born 6 weeks early and a very low platlet count. Thanks to a wonderful pediatric hematologist he was diagnosed with NAIT. We are thinking about a second child, I have seen a specialist who is convinced she can get me and the baby though it with treatment but When I deliver (c-section) she says I should tie my tubes because a third would be too risky. I would love to hear more about those of you who are getting or had treatment and had a healthy child the second time around.

I'm saddened to hear of all the losses everyone has suffered from NAIT. My first son was born with bruises and a platlet count under 10k. While trying to diagnose him, he dropped down to 2k. He was given a platlet transfusion from my blood, and continued to receive them for six weeks..until the antibody was completely out of his system. My OB had never heard of NAIT, and at my 6wk check up she indicated it wouldn't be wise for me to have more children (and she gave that advice w/out any knowledge of how to treat NAIT). I consulted w/ a high risk OB and a neonatal specialist and was given options. I'm happy to say that w/ weekly immune globulin infusions during my second pregnancy, along w/ 2 PUBS (percutaneous umbilical blood cord samples), I gave birth to my second son w/ no complications. There are risks involved, but don't give up...speak to specialists, research the risks, and know your options!

Regina I am very happy for you and your family. I would be very interested to talk to you since I am getting ready for an amnio next week to see if I need to go through the IVIG treatments. I'm scared and would love to hear some encouraging words.

Hi J!! I admire your strength to go through this ordeal w/ NAIT again! How far along are you? My second pregnancy, as stressful as it was, went smoothly! I started w/ weekly level 2 ultrasounds at 10 weeks. I started my weekly IVIG at 16 weeks. Of course I was the one in a million to have an allergic reaction to the IG, and had to take Benadryl w/ my weekly infusion. Fortunately my insurance was good, and an RN came to my home to adminster it. I had my first PUBS (amnio) at 26 weeks, and I was so nervous. I was placed in a room to relax and given Benadryl (I think) to calm me and more importantly the baby. The doctor wanted to limit the baby's movement before he went poking that cord!!! I had given blood earlier and they had separated the platlets in case those would become necessary for the baby. The results took no more than 10 minutes. Fortunately, the platlet levels were 170k...well above the 100k level. I continued w/ the IVIG and ultrasounds until my 36th week. We had another PUBS, and when that turned out well, we decided to have a vaginal delivery and I was induced at 37 weeks. My second son was born perfectly healthy!!! My husband and I did a tremendous amount of research, and my doctors were phenomenal!!! Where are you located? When I had my second we lived in DE, and I would highly recommend the practice to you! I wish you the best of luck next week..I'll be thinking of you and your little one!

Thanks Regina for the info. I live in New Jersey and I am almost 16 weeks. My amnio is Monday and then my doctor wants to start the IVIG at 18 weeks depending on the results. Hopefully, we won't have to go through it. If it comes back we need to I am scared to go through with the whole thing. I feel bad saying that but with already having one son with having a stroke and problems I'm scared. Would it be possible to email you directly? If so edit your profile with your address. Mine is in my profile.

Hi, thanks so much for writing your story I would like to know how early you started your ultrasounds and also how early you started your IVIg treatments? Did you now work? I understand that the IVIg takes 12 hours to infuse. Thanks so much this is so helpful. Also I am having difficuly researching treatment with a second pregnancy can anyone give my any website? thanks