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Neonatal Alloimmune thrombocytopenia (NAIT)

Goodmorning, My wife and I reside in Western Australia and 12 days ago our first child (a girl) was born with NAIT. Unfortunately we have only a short time with her as there is no cure. We have been provided this address from the local Perth hospital and we were hopeful to obtain an insight into this genetic (platelet) problem and what people "around the globe" have undertaken in subsequent pregnancies to have normal healthy children. We are aware of some of the treatments, however any further information would be greatly appreciated on alternatives that people have pursued, including sperm donation, to match with identical blood platelets so a normal relatve risk free pregnancy can transpire.

I look forward to your comments.

Kind Regards
 
  Aussies on 2005-04-22
This is just a forum. Assume posts are not from medical professionals.
I hope someone will answer. I do not know any homeopathic treatment, sorry.

Please use the net and search, I am astounded at the amount of information. There are also other forums like this one and including allopathic forums.

May God lead you straight to the information you seek.

Blessings, Sabra
 
sabra last decade
It is defined as ---


Alloimmune thrombocytopenia
Fetal and neonatal alloimmune thrombocytopenia develops as a result of maternal sensitization to paternally derived fetal platelet antigen, the pathogenesis being analogous to that of Rh haemolytic disease of the new-born. The mother is not thromboctyopenic but the fetus can have a very low platelet count and is at risk of spontaneous intrauterine intracranial haemorrhage. This results from a specific antibody interfering with glycoprotein-binding sites and profoundly altering platelet function, particularly, aggregation. The most common platelet antigen involved is HPA-1, but a platelet incompatibility does not invariably result in alloimmunization. The maternal immune response appears to be restricted to those women with HLA-B8 and HLA-DR3 antigens. Thus, although 1 in 50 pregnancies are incompatible with respect to HPA-1 antigens (98 per cent prevalence of HPA-1a in the United Kingdom), only 1 in 5000 births are affected.
The children of first pregnancies (unlike rhesus disease) are often affected and the disease process can begin in early fetal life. Management is aimed at identifying the fetus at risk and correcting the thrombocytopenia in utero. Screening of women for HPA-1a status is not established. Investigation of neonatal intracranial haemorrhage or unexplained intrauterine death should include screening of parental blood for platelet antigens and maternal platelet antibodies. The approaches to the management of this problem are all controversial. One protocol involves fetal blood sampling at 20 to 22 weeks gestation and treating the mothers with thrombocytopenic fetuses with intravenous IgG 1 g/kg/week, with or without steroids, until delivery. This has been reported as successful in some units but not others. The overall results of multicentre trials of the efficacy of maternal intravenous IgG administration are variable, with more successful reports from North America and general scepticism from European centres. Another approach is to administer weekly compatible platelet transfusions to the fetus. This has been successful in a number of cases but involves frequent hazardous procedures. Whatever approach is used, immediate predelivery administration of compatible platelets to the fetus is recommended. The accepted management when the diagnosis is established shortly after birth is to transfuse specially prepared HPA-1a negative platelets from preselected blood-bank donors or, if facilities are available, washed platelets from the mother


This does mean that the only homeopathic way of dealing with this is to use constitutional/miasmatic treatment .
Which would mean looking at the last 4/6 generations on both sides of the family in an effort to persuade the body to do its job properly . Which is really all that homeopathy does.
Also you cant pick n mix homeopathy and allopathy.
Explore and check everything you are told -- twice over!.
 
passkey last decade
Aussies,

Hi, I am sorry to hear about your little girl. I have two children ages 3 and 8 weeks born with NAIT. There are treatments available both while pregnant usually beginning at 20 weeks (earlier in high risk patients) and treatments once the baby is born. The treatment once the baby is born usually involves Platelet transfussions of the maternal platelets or matched doner platelets, IVIG, or Steroids. There is a support/chat group on yahoo for NAIT with some excellent information. There are many many women who have had subsequent prenancies - many of them sucessful, but some are not - who share their stories, treatments and outcomes. I believe there are even a couple in Austrailia.
Pam
 
alabamapam last decade
Hi Pam;

Thanks for your information. It is nice to know we are not alone with this situation as it is so rare and beyond our wildest dreams - we only learnt of the condition 3 days before our daughter was born - so where absolutely devastaed and looking to find as much information as possble on NAIT. We have been looking on Yahoo for the support/ chat group you mentioned, however with no success. It would be very much appreciated if you could provide the web address for this site.

We look forward to your advice.

Kind Regards
Aussies
 
Aussies last decade
Aussies,
Hi, I tried to post a link, but this forum does not seem to let you post web pages or e-mail addresses. If you click on the from: Alabamapam on my posts it will give you my e-mail address. If you will e-mail me, I will be more than happy to help you get to the yahoo support group. I did a search myself and had trouble finding it. But you can try the following:
1. Go to yahoos home page
2. Select Health
3. Select the groups and boards tab near the top of the page.
4. Look down about 1 page to the section that says Find a group or Board and type in NAIT.
5. The first result should be the link to the group.
I hope this works for you and does not violate any of the rules of this webpage.

Pam
 
alabamapam last decade
G'day Pam;

We found it! Thanks for your assistance - we have had a good read this evening (9:15pm in Western Australia) and it is an excellent website.

We extend our appreciation for taking the time to assist us.

Many thanks & Kindest Regards
Paul, Melissa & Kashya (our daughter)
 
Aussies last decade
Does anyone know if there is a sperm bank that test the donors for their platelet type. I have lost 2 children to alloimmune thrombocytopenia. I have to have a donor with both negative platelets. Any help would be appreciated.
 
fewsterfamily last decade
I have 3 children who had NAIT. Our first child was born naturally and we did not discover a problem until after he was born. In the hospital, he was transfused with 2 units of platelets and every time, his count would come up and then go down again. A long story short, he was given IVIG (imunno-globulin) and his platlet count came up. He is now a healthy 9 year old boy with 2 younger siblings. For the last 2 pregnancies, my wife has gone in for IVIG treatments at 20 weeks and delivered C-section to not cause any problems. Each time, the platelet count was nearly double the normal count. Our kids are healthy and we praise Godfor His grace and the doctors' wisdom that we have been blessed with a 4th child due in April '06. If IVIG is available, I would talk to your doctor. It can be expensive, but children are priceless! I hope and pray for your family situation.
 
mgreene last decade
Dear Fewster family;

We are sorry to hear about your losses from this terrible disorder. Our beautiful daughter passed away on the 17th of May 2005 and we have been searching for answers since, however it is a long road. We had similar thoughts initially to yourself in finding a sperm donor with the same platelets. At this stage we are going down this track however we have not found a donor as yet. The IVIG treatment mentioned by "mgreene" is available and we have been advised about an 75% success rate, although talking with a number of other people it is very evasive. We will ultimately go down this path if we have no luck with the donor. The donor path is our preferred option however as "mgreene" has commented, you will do anything to have children and we cannot agree more. We, at this stage are investigating all avenues. Within the previous postings (05-05-2005) Pam has directed us to an excelent website where you can discuss with other people like ourselves who have lost children through NAIT or are going through the treatment to have children. We will keep you advised of our situation as we have another meeting with our doctor soon (November) and we should gain some understanding on what options we do have as an alternative to the IVIG.

If you need any further assistance / information please do not hesitate to contact us.

Kind Regards
Paul, Melissa & our daughter Kashya (in heaven)
 
Aussies last decade
My husband and I found out after our son was born with NAIT that we had this problem. Our son was born with a platlet count of 17,000. THe hospital we were at could not treat it so our son was quickly rushed to York Hospital in PA, USA. He was treated with a platlet transfusion and released in a week. He is doing fine. My husband and I always wanted a big family. So not knowing the difficulties ahead we became pregnant with our daughter. At 5 weeks we were again diagnosted with NAIT. I underwent IG treatments from 20 weeks on. I became severely sick, unable to work even two days a week. Vomiting, Severe headaches, not able to eat anything! THe IG treatments were slowed down and they took 24-26 hours every week. Still I remained very ill. I gradually developed dry red spots on my skin. Dr. didn't know what was causing it. I became severly dehydrated because I couldn't keep nothing down. THe dr. said I had the flu. I had an amnio. at 34 weeks and they determined our daughter was ready, but had to be delivered by c-section. The following day before surgery I could not even walk because of being so ill. THey ran test and found I had preaclampsia and my platlets had dropped to 40,000. I had to be put under for surgery and receive a platlet transfusion so I would not bleed out. After surgery I had to receive medicine to keep me from having seizures which in turn made me severly sick again. Long hospital stay. Our daughter a beautiful healthy baby girl! Platlets 197,000. However with encouragement from the doctors I had my tubs tied. I have regreted every day since. I love my children and am grateful to god that I have them, but I would love more miracles.
 
JulieB last decade
We have two boys ages 3 and almost 2. Our baby girl was born July 26 with NAIT. The doctors were perplexed because our first 2 children did not have the problem. Of course we had never heard of NAIT but after several days in the intensive care unit it seems our daughter will be okay. We feel lucky and blessed by God that there was no internal bleeding and that her platelet counts are healthy after 2 transfusions. Hopefully she and my wife can come home soon. Now begins the studying and acquiring more information on NAIT in order to help with the decision of having more kids. My wife and I both came from large families and we definitely want more than three children. Your posts regarding the treatments for subsequent children has been helpful.
 
parentsofthree last decade
For your baby daughter:

Barayata Carbonica 30, put about 20 globules (if liquid then put 20 drops) in half filled one litter mineral/spring/rain water bottle. Half filled so it can be shaken vigourously to mix the contents.
Give her a spoon of the water from that bottle each hour.

And

Hirudo Medicinalis 6X, in half filled waterbottle as mentioned above. One spoon once a day.
 
girilal last decade
A better, SAFER medicine, which will not cause any aggravations whatsoever is as follows ;

The following triturated bio-chemic tissue salts will work wonders :

Ferr.Phos-3X

Calc.Phos-3X

Nat.Mur-6X

Take two tablets of each (6 tablets equals to one dose)

Take such 4 doses per day for several weeks.

The above forumulation will take care of the entire spectrum of blood disorders.

IF any further help is required from India, my contact email's on my log-in profile.

Do confirm / post over here, IF you benefit from the above suggestions.

Remain Healthy & Happy ....... Nesha-India

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Nesha-India last decade
I have two sisters that have Neonatal Alloimmune Thrombocytopenia or their children were born with this. One sister said that my sperm may help others have a safe pregnancy and healthy children. Does anybody know anything about this subject?
 
ma3371 last decade
Child requires Phosphorous.

I don't think Baryta Carb will have much effect.

Drugs usually for this disease are

Phosphorous
Crotalous Horridus
Radium Brom
 
drprodip last decade
I have two daughters and a son on the way. My husband has familial thrombocytopenia (something different than NAIT), and the doctors are trying to find out if I have the antibody for his rare antigen. HBR-9 I think it's called. The reasons the doctors are suspecting NAIT is because the baby in my tummy now has had an internal bleed - determined by ultrasound and MRI. I have NEVER heard of NAIT, and I'm not exactly sure what to expect from the outcome of this. Even more confusing is that my first two children haven't had any problems with NAIT. And I'm wondering if this is going to cause problems with getting pregnant in the future, and how is this going to affect my son. The doctor said that this is actually not that uncommon and that there are people out there that are dealing with it. So, I ask your insight and knowledge. And second, is there anything that can be done to prevent such things like this from happening? I have to get an Rh shot each pregnancy to prevent the Rh factor from being a problem between me, my husband, and the baby. Can't something like that be done? I'm interested in finding funding for prevention of such things. Also, has any information been done on stem cell treatment for NAIT?
 
whatleaves last decade
*Everyone*

I am a member of a support group for NAIT. My daughter was born with a platelet count of 8,000 and is now a healthy 15 month old. I am also currently pregnant with our 2nd little girl. I'm receiving IVIg and prednisone treatment.

Go to yahoo groups and look under NAIT. This website didn't allow me to enter the link because I just joined...
If you can't find us, just email me and I'll help you.

Kind regards,

Janene
 
Janene last decade
My life has also been affectd by NAIT. I came back to the internet this evening hoping to find some new information about any new ways to treat NAIT. I was blessed with the most beautiful little boy who was born on Oct 21,2002 and died just moments after he was delivered. We were absolutely clueless as to what happened to him. I had a normal pg. But, soon after he was born and many tests both on him and us, we were told that our child was most likely affected by NAIT. My husband and I have are incompatible for HPA-1 (I am negative for this platelet antigen) A doctor at Johns Hopkins told me she would/could manage a pg for me but she wanted to begin IGIg at 8 weeks and we would have to do fetal blood sampling as early as 18 weeks and possible platelet transfusions in utero and deliver as early as 32 weeks. I was all for it but 2 mc's later left me feeling hopeless and desperate. It was through the Yahoo board that I learned about surrogacy and I shared it with my husband and we decided to look into it.
We eventually met a wonderful woman that has 3 children of her own a wonderful and supportive husband and she was happy to help us. A third surrogacy for her, all babies carried were the biological children of the parents that she helped. After long and heartbreaking journey we had a 10lb baby boy on May 18,2006. He has been our special blessing and we are over the moon happy. Surrogacy is not the answer for everyone, it certainly would not had been for me if it were not for our circumstances. I loved being pregnant and still dream about having another baby and this time carrying myself, this is what I would love love to do. Sadly I do not know if it is possible for us. We are so afraid of another loss. We surely never know what lies ahead of us, but I surely feel grateful for the little boy we have.
My best to all that have suffered with this, especially the ones that have lost a precious child.

Lisa
 
LisaMC last decade
Hi all,

We are the parents of three NAIT children and achieved completely NORMAL platelet counts in our two treated pregnancies. Beware of doctors use use invasive techniques and tests or say they will start NAIT treatment as late as 20 weeks as in many cases there are better options.

I have read a good deal of NAIT research articles over the past ten years and am happy to help provide other NAIT parents with information and help answer questions. There is also a good deal of information at our naitparent website.

We used the same doctors as Janene who posted above, and at present, their approach treats early than any other and uses state-of-the-art non-invasive testing techniques.

Please know there is hope and nearly 100% chance of success with treating NAIT!

-Kent

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KentW last decade
Sorry about that posting the wrong image, and this is the corrected one.

Thanks,
Kent

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KentW last decade
I wonder after all these years Iif there is a homeopathic treatment whislt pregnant?
I do hope you found the donor you wanted too.
:-)
 
pixie wood 9 years ago

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Information given in this forum is given by way of exchange of views only, and those views are not necessarily those of ABC Homeopathy. It is not to be treated as a medical diagnosis or prescription, and should not be used as a substitute for a consultation with a qualified homeopath or physician. It is possible that advice given here may be dangerous, and you should make your own checks that it is safe. If symptoms persist, seek professional medical attention. Bear in mind that even minor symptoms can be a sign of a more serious underlying condition, and a timely diagnosis by your doctor could save your life.