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| NAIT Treatment Protocol Comparison of Dr. Kwak-Kim versus Dr. Bussel Treatment Protocol Comparison (Please consult these doctors for lastest information or due to inadvertent errors) | | | Kwak-Kim, Beer, etal | Bussel, Berkowitz, etal | Notes | | Start Time for Treatment in Pregnancy | 5 weeks (has even started pre-conception in a case where the mom's immune system was highly activated) | 20 weeks if no previous ICH 12 weeks with a prior ICH | Dr. Kwak-Kim told us she would being treatment at week 5 as that is when the baby's heart begins beating. I have never seen any scientific basis given for why Bussel, Berkowitz and others choose to start at 20 weeks. We speculate it could be due to the timeframe used for RH Disease, although most feel NAIT behaviour differs. ICHs have been documented as early as 16 weeks, so we have heard from several parents whose doctors reject the Bussel, Berkowitz, etal, seemingly arbitrary 20 week starting date and begin treatment at 16 weeks, to correspond with the earliest documented ICH. We feel that is moving in right direction and the rationale makes more sense than Bussel and Berkowitz, but if you wanted to prevent an ICH at 16 weeks, treatment would need to begin prior to 16 weeks, not at 16 weeks. Given there is research showing that almost the same percentage of ICHs occur following a pregnancy without an ICH as ones following an ICH, using a prior ICH to move up treatment up 8 weeks may only help to show how earlier treatment can improve NAIT outomes more than it does to show how a prior ICH helps predict how to treat a future NAIT pregnancy. Bussel and Berkowitz have documented ICHs in their 20 week start group, so we would ask why was treatment not started sooner for those pregnancies and are those outcomes acceptible? We feel any ICH should be a clear call to action to change the treatment. Bussel writes in one article that treating them all earlier may use more medication than is needed. True, but maybe that would be better than allowing for one or two deaths per 100 to the parents. In our opinions, the parents should at least be given the opportunity to make the choice, even if insurance would not cover it, which so far, they always eventually have every case from every parent we have corresponded with. In our case, we chose to go out of network and front tens of thousands of dollars for IVIG until reimbursed by insurance for most of it, and feel blessed we had the opportunity to choose and were blessed with the finances to do it at the time. Doctors refusing to write scripts for earlier IVIG should be able to tell you why as there is data that can support earlier use may help. They can warn you of any increased risks the treatment may carry, but in our opinions, you should be allowed to make an informed decision about what is best for your child. Not thems solely, especially given their track record includes bleeds and many serious complications with PUBS/FBS that went on for years. For any of you who use Dr. Berkowitz, Bussel or a doctor following their recommendations, and they are recommending starting treament at 20 weeks, we would suggest you ask them why they are chosing that date when there have been ICHs occur pior to 20 weeks, and ICHs in their data from moms who started at 20 weeks. We have had many parents ask us that question, and we feel it is a good one. |
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| Uses Non-Invasive Testing w/Treatment? | Yes | No (Even states "No non-invasive biologic marker of severity of fetal thrombocytopenia currently exists," and, "There is no established usefulness of antibody testing in a second affected fetus to determine how affected the fetus is." There is definitely research showing a correlation between maternally antibodies and platelet counts, and while it may not be conclusive, it seems wrong to not at least acknowledge the data.) | There is some good citations on this in this article: Scandinavian Journal of Immunology, Vol 7, Issue 6 (p. 531-534), Aug. 2009 Dr. Kwak-Kim also uses the TH1/TH2 cytokine ratio and Natural Killer (NK) assays to monitor immune activation. There is evidence these tests have validity in this research: Mouzaki A, Theodoropoulou M, Gianakopoulos I, Vlaha V, Kyrtsonis MC, Maniatis A. Expression patterns of Th1 and Th2 cytokine genes in childhood idiopathic thrombocytopenic purpura (ITP) at presentation and their modulation by intravenous immunoglobulin G (IVIg) treatment: their role in prognosis. Blood. 2002 Sep 1;100(5):1774-9.
Panitsas FP, Theodoropoulou M, Kouraklis A, Karakantza M, Theodorou GL, Zoumbos NC, Maniatis A, Mouzaki A. Adult chronic idiopathic thrombocytopenic purpura (ITP) is the manifestation of a type-1 polarized immune response. Blood. 2004 Apr 1;103(7):2645-7. Epub 2003 Dec 11.
Hunt JS, Petroff MG, McIntire RH, Ober C. HLA-G and immune tolerance in pregnancy. FASEB J. 2005 May;19(7):681-93. |
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| Recommends PUBS? | No, and never has due to direct risks and risk of increasing maternal immune sensitization | Recommended PUBS always for well over a decade until in a 2009 statement seemingly distancing themselves from PUBS finally | While the PUBS complication rates in the general population are often said to be as low as 1%, the complication rates in NAIT cases, especially those cited in the Bussel, etal, research, are much higher, affecting over 18% of the pregnancies in a 2002 report. PUBS also can put the baby's platelet's antigens in direct contact with the mother and can cause a heightened immune response if the immune system was not previously exposed to the baby's platelets. This was recently cited in the same BJOG article that basically said Dr. Bussel and other's results did not justify their use of FBS. Dr. Kwak-Kim mentioned FBS increasing maternal sensitization as a strong possibility, plus there is evidence of sensitization occuring from amnios in RH disease. So in effect, they could find a great platelet count, but if the PUBS triggered a stronger maternal immune reponse, things could change a good deal for the worse in the following weeks. While I am sure the Bussel, et. al., group meant well, to us and many observers it was clear they were doing more harm than good with the Fetal Blood Sampling, and for years on end. If they were clearly wrong on the use of FBS for so many years, it certainly should bring into question their other methods and statements, primarily the unproven way they choose whent to begin treatment and not using non-invasive testing that others use. The bottom line is that babies are still dying or being born severely thrombocytopenic using their protocol. In our opinion, if you are looking for thought and result leaders for NAIT, that group is currently not it. To their credit they do publish frequently with much useful information, but it is the results that matter. |
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| PUBS Complication Rate | N/A | Reported in 7/2002 "211 FBS procedures in 91 patients were complicated by 3 fetal deaths, and 14 deliveries precipitated by FBS, among other complications. Taking these complications into account, the new protocols under current study emphasize early treatment with stratification according to risk and with initial FBS deferred until 30-33 wk." | We have always felt the risks reported with PUBS seemed greater than the risks associated with just assuming a bad count and treating more aggressively if following the Bussel, etal, protocol. With the risk of a bleed in a treated case being low, having complication rates in the double digits surely seemed to be doing more harm than good. |
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| Recommends C-Section | Yes | Yes | One noted UK research doctor told us he would only recommend a vaginal delivery if the count was over 100K, but that PUBS to determine that count after 34 weeks are higher risk, so that is why a C-section is almost always recommended. You want to avoid as much trauma to the baby as possible in the case it might be severely thrombocytopenic. |
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| Recommended Gestation for Delivery | 36 weeks if lungs test mature | ? | Risks associated with premature birth decrease with gestational age, but the risks of a NAIT bleed increase, so they want to find a point where they premature risks are lower than the NAIT risks, and 36 weeks is generally accepted as that point. |
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