I’m just wondering if there are any parents or students here that have had a hard time convincing there school about how they have joint bleeds that you can’t see but are there?my doctor has sent school info 3x and they do not take it seriously and he has been injured multiple times at school.
Maya, I suggest calling a meeting with the principal and any teachers who interact with your son. Then, I suggest bringing in an advocate or even an attorney to help represent your concerns. Having a professional with you really makes the school staff sit up and notice. It can save you a lot of aggravation and hopefully save your son some injuries.
My daughter has a severe nut alllergy, and teachers were continually failing to comprehend it in elementary school. They would hand out candy with nuts in it to the students. My daughter had several attacks because of it, so I feel for you.
I’m going to be a counter to this point and say that if the school is not getting it after receiving several notes from health professionals then its time to change schools. I don’t see a need to beat it into their heads that they are being ignorant. Persons with vwd have to be their own advocates. I suppose it matters what caused the injuries but the buck stops at your son when he is at school. I can see getting legal on the issue if he refuses to play dodgeball and they suspend him but in that kind of situations you are always in the right. If changing schools is not an option then let your son know that it is ok to say no to the teacher if he knows the activity will cause a bleed.
Dear friends,
I have just had a three week ordeal with a couple of hospitals in Florida which shall remain nameless. The first hospital performed an incision and drain (IND) procedure on a hematoma on my ankle without pre-treatment of ddavp and against the medical team advice which included a knowledgeable hematologist who discussed my factor eight and VWF factor blood tests being < 10% with the surgeon. He and the surgeon discussed the treatment protocol in my presence but the surgeon did not follow the plan. He also failed to follow any MRSA protocols, used unsterile gloves, contaminated the gloves before the procedure with his telephone and by handling a bottle of ethylene chloride while teaching a nurse how to use it in my presence. He had no mask and no gown, just street clothes.. He told me as he showed the nurse how to wrap the now bleeding wound with bare hands- no gloves- that I wouldn't bleed and didn't need to use my own stimate (ddavp inhaler). If I had known that this hospital only checks the validity of the out-contracted doctors' credentials and does not perform any psychological review or past practice review I would have made a Google search of his record and barred him from touching me. I was discharged from this hospital later after I tried stimate (ddavp inhaler) and returned several hours later leaving bloody footprints on the ER floor. ER measured my Hgb at 14 and APTT at 45 seconds, told me I was not in a life-threatening situation and tried to discharge me. Thanks to an ER nurse who refused to sign off on the discharge I was readmitted after another ddavp infusion but as a "HOBS" patient which category makes the patient pay a large part of any drug cost). I called Medicare (1 800 844 0795). The Medicare quality of care person rattled the cage of the hospital and I was fully admitted and alphanate was ordered, as hospitals resist ordering alphanate because of the cost ((thousads of dollars) In the next 12 hours I lost more blood, the total loss from the IND amounting to about two liters or more. My Hgb started at 17 g/dL when I came in and was now 12.4 g/dL.Twelve to fifteen pressure bandages later and three 10 mL infusions of Alphanate clotting factor the bleeding stopped enough for them to discharge me. A couple of days later I was back in a different ER where I was immediately admitted and received three times as much Alphanate and had a dried-blood adhered dressing from the first hospital removed in the OR with a plan A, plan B and Plan C ready to go if the bleeding resumed. After observation for a day I was released with at home PT therapist and a daily wound care therapist to keep track of the healing and recovery from my almost three weeks of bed restrictions. "
Please, Please make no assumptions about the quality of care or the experience of personnel with your "orphan disease". Contact the Case Manager" and the Patient Ombudsman at the first moment of your admission and explain to the about your orphan disease and that personnel are more likely to know about vWD and dobernan pincers than with you or your child. Don' t let the Pharmacy resist the Alphanate. It's the only bullet for VWD Three.
John the elder
Thank you, John, for sharing your experience to help others.
Johntheelder said:
Dear friends,
I have just had a three week ordeal with a couple of hospitals in Florida which shall remain nameless. The first hospital performed an incision and drain (IND) procedure on a hematoma on my ankle without pre-treatment of ddavp and against the medical team advice which included a knowledgeable hematologist who discussed my factor eight and VWF factor blood tests being < 10% with the surgeon. He and the surgeon discussed the treatment protocol in my presence but the surgeon did not follow the plan. He also failed to follow any MRSA protocols, used unsterile gloves, contaminated the gloves before the procedure with his telephone and by handling a bottle of ethylene chloride while teaching a nurse how to use it in my presence. He had no mask and no gown, just street clothes.. He told me as he showed the nurse how to wrap the now bleeding wound with bare hands- no gloves- that I wouldn't bleed and didn't need to use my own stimate (ddavp inhaler). If I had known that this hospital only checks the validity of the out-contracted doctors' credentials and does not perform any psychological review or past practice review I would have made a Google search of his record and barred him from touching me. I was discharged from this hospital later after I tried stimate (ddavp inhaler) and returned several hours later leaving bloody footprints on the ER floor. ER measured my Hgb at 14 and APTT at 45 seconds, told me I was not in a life-threatening situation and tried to discharge me. Thanks to an ER nurse who refused to sign off on the discharge I was readmitted after another ddavp infusion but as a "HOBS" patient which category makes the patient pay a large part of any drug cost). I called Medicare (1 800 844 0795). The Medicare quality of care person rattled the cage of the hospital and I was fully admitted and alphanate was ordered, as hospitals resist ordering alphanate because of the cost ((thousads of dollars) In the next 12 hours I lost more blood, the total loss from the IND amounting to about two liters or more. My Hgb started at 17 g/dL when I came in and was now 12.4 g/dL.Twelve to fifteen pressure bandages later and three 10 mL infusions of Alphanate clotting factor the bleeding stopped enough for them to discharge me. A couple of days later I was back in a different ER where I was immediately admitted and received three times as much Alphanate and had a dried-blood adhered dressing from the first hospital removed in the OR with a plan A, plan B and Plan C ready to go if the bleeding resumed. After observation for a day I was released with at home PT therapist and a daily wound care therapist to keep track of the healing and recovery from my almost three weeks of bed restrictions. "
Please, Please make no assumptions about the quality of care or the experience of personnel with your "orphan disease". Contact the Case Manager" and the Patient Ombudsman at the first moment of your admission and explain to the about your orphan disease and that personnel are more likely to know about vWD and dobernan pincers than with you or your child. Don' t let the Pharmacy resist the Alphanate. It's the only bullet for VWD Three.
John the elder
Does the school have a nurse? Does the school district have a head nurse or doctor? Most HTCs are very willing to reach out to schools and provide training on bleeding disorders.
Yes there is a school nurse who my sons Doctor and staff have given multiple papers etc on VWD . In her eyes it is not serious his allergy to bees is far more serious to her which she does nothing about either including not giving his aide epi pen.
Most school nurses are woefully undertrained. So, what do you think your next move is, Maya? Hire an advocate? or find a new school?
Well I am going go to battle with school, school district. This school is so close to my house that I could be there in a second so I’m going to make them do what’s right by him.the hemophilia foundation of so ca is a joke they say they offer advocacy but they don’t . The attorneys I have spoken with want 3000.00 dollars just to sit in an iep meeting which tk me is ridiculous especially when there hourly rate is 350.00 all attorneys I spoke with charge this as they put it "that’s the only way they make a profit from iep so I wanted hourly rate and they all said no
3,000? That is absurd. Try a student advocate instead. It would have to be less than that. There are also some books out about How to Advocate for your Child at IEP Meetings. See if these sites can help:
http://www.theparentaladvocate.com/