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rema karam
Posts: 48
Registered: Sep 2009 |
 Posted October 13th, 2011 11:48 PM IP   
Dear friends,
My son is going for his dental surgery on dec. 7 and I'm worried about this can anyone give me advice. Thank you so much
rema haifs
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Roger
Posts: 20
Registered: Mar 2004 |
Posted October 18th, 2011 07:30 PM IP
What kind of dental surgery will he be having?
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Tami
Posts: 503
Registered: Jun 2004 |
Posted October 21st, 2011 12:04 PM IP
Hi Rema,
Without knowing exactly what kind of dental surgery your son is having, my advice would be to try to stop the mouth/gum bleeding locally as much as possible before resorting to platelets. There is little evidence that Novo7 will work on mouth bleeding, but since surgery is involved, if it were my child, I would do Novo7 before and after the procedure. You may need to request what a dentist or hematologist would consider unconventional use of haemostatic agents such as Surgicel or other dissolvable packing. In my experience many hematologists want to rely on biologicals or blood products to do the work, when stopping the bleeding locally would be preferable.
Good luck to you and your son. Let us know how things go.
Thanks,
Tami
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Roger
Posts: 20
Registered: Mar 2004 |
Posted October 22nd, 2011 11:16 AM IP
Hi Rema,
I agree with Tami. Do as much as you can to try and control the bleeding locally. When my son had his impacted wisdom teeth taken out (he was 17 at the time), he was given Novo 7 before the surgery, and twice after. He was in the hospital overnight. The surgery was done at the University of Minnesota, and the post-op work was managed by dental residents. The dental residents largely decided to give the 2nd and 3rd dose of Novo 7. It didn't seem to help too much after the surgery (although the nurse from the hemophilia center had said that they monitored Daniel's blood's ability to clot during the surgery and did see some measurable difference in the clotting of the blood during the surgery due to the Novo 7).
Looking back, I would not want dental surgeons or dental residents administering Novo 7 without consulting with the hematologists involved. It seemed like the dental staff thought the Novo 7 might magically stop bleeding without doing other things that one would normally due to stop bleeding. Finally, the morning after surgery, the 3rd dose of Novo 7 was given, and THEN pressure was administered at the sites of the continued bleeding in order to help make the bleeding stop. If the hematologists had had a more prominent role in the controlling of the bleeding, at least one dose of the Novo 7 would have been avoided. In the end, we felt that the most effective thing that helped control Daniel's bleeding was pressure on the site of the bleeding.
We made sure that our insurance would cover any Novo 7 before the surgery. This was important because the hospital sent a bill to insurance for $27,000 for each dose of the Novo 7. In the end, insurance paid about half of that. We paid only $20 for copays for 2 prescriptions at the hospital pharmacy. This was the only time Daniel has ever received Novo 7. (He had received platelets 4 times before in his life).
I later talked to the local sales representative from Novo Nordisk, and told him about the cost of the Novo 7, and he said that he wished that someone had talked to him. At the time, Novo Nordisk had a program where the first 3 doses of Novo 7 are administered without cost to see if it is effective for the patient. Also he said that for Daniel's weight, that the cost to the hospital should have "only" been $5-7 thousand per dose, not $27,000.
I hope things go well. Please keep us posted. There are many people on this message board who will keep your son in their thoughts and prayers.
Roger
P.S. For "simple" tooth extractions for braces earlier in Daniel's life, neither Novo 7 nor platelets were given, just Amicar, and things went okay after the extraction.
(Edited by Roger)
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Tami
Posts: 503
Registered: Jun 2004 |
Posted October 24th, 2011 11:01 AM IP
Thanks so much Roger for your input! We all need to advocate for our children and I feel that sharing these experiences help us do that. Quinn will most likely be getting braces in the next few years, so it is good to know all went well for Daniel in that regard.
Thanks again!
Tami
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Roger
Posts: 20
Registered: Mar 2004 |
Posted October 24th, 2011 09:06 PM IP
Pulling of the teeth for the braces was not much of an issue, but Daniel did have more bleeding than we expected after the braces went on. We didn't use platelets or Novo 7, but we thought about it. The first night after the braces bands were put on there were numerous large clots that Daniel was spitting out. He didn't get much sleep that night. We ended up switching orthodontists. The first orthodontist said he would place all the bands, when in fact it was one of his assistants who did the work. We don't think either the orthodontist or his assistant had an appreciation for what Glanzmanns was, in spite of the fact that we told them beforehand that Glanzmanns is different than hemophilia, and that mouth bleeding is a big issue for Glanzmanns patients. (Even not everyone at our hemophilia center seemed to grasp this either - some said "we've have had lots of kids with bleeding disorders get braces") . . . but how many had Glanzmanns?
We are glad we did the braces . . . but do look around for the right orthodontist . . . perhaps one of the best qualifications is that they actually listen to you . . . and take you seriously.
Roger
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rema karam
Posts: 48
Registered: Sep 2009 |
Posted October 30th, 2011 12:36 AM IP
Thank you all for your input about this. The problem is that my son is immune to platlets. And just yesterday we were dischared from he hospital for a nose bleed we gave him 2 doses of novo seven and still didnt help I didnt even mention the amicar. Until we consulted the ENT and he packed his nose with silver nitrate and it worked like magic. So am I going to do the dental surgery for just cavaties or should I just wait until his looses those teeth and he gets older and understands to floss and brush the back of your mouth not bite the tooth brush like he always does and that turns him into a night of bleeding gums........................ I dont know yeT BUT I NEED TO ACT MORE IM IN CONTROL NOT THE DOCTORS.
(Edited by rema karam)
rema haifs
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Tami
Posts: 503
Registered: Jun 2004 |
Posted October 31st, 2011 09:50 AM IP
Rema, I would start by enforcing good brushing and flossing daily, now and not waiting until he is older, even if it initially causes more gum bleeding. It takes a while for the gums to get used to the brushing and flossing but in the long run it will save him from horrible mouth bleeding due to unhealthy teeth. I know it is hard to get young children to brush effectively, but for GT kids it is so important in preventing problems later.
I would also recommend reaching out to the dental contact on this site, Dr George Feldman, GFel640946@AOL.com. Our dental hygienist talked him and he was very helpful when we first started taking Quinn to the dentist. I believe he has a daughter with GT. You could have your dentist talk to him about the dental surgery.
Good luck!
Tami
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Joy
Posts: 605
Registered: Mar 2004 |
Posted November 2nd, 2011 04:18 PM IP
Rema, Tami is so right about enforcing good brushing at a very early age. Because my gums used to bleed my parents let me get away with not brushing, not realising just how important it was. Luckily, in spite of having ulcerated gingivitis in my late teens, I did manage to keep all my teeth. A new dentist stressed the importance of regular brushing and I persisted in spite of the bleeding. Eventually the gums to harden and the bleeding lessens.
Roger, Novoseven did work for m when I had a wisdom tooth extracted at the age of 60, but I had three nights in hospital and was not allowed to eat or speak for about 36 hours after the extraction and it was a week before I was able to get back to eating firmer foods.
Joy
Scotland
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rema karam
Posts: 48
Registered: Sep 2009 |
Posted November 4th, 2011 11:12 AM IP
thank you all for your inputs and i really am trying to inforce it. Its just the scare of bleeding he is afraid of. Its alot to thinkof when battelling with this strange disease. And it also, still after four years, hard getting use to. Thank you alot Tami for your info about Dr. Feldman. I am going to email him
(Edited by rema karam)
rema haifs
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Glanzmanns GT :: :: General Discussion :: dental surgery |
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