Could Have Been a Disaster!!!

My son has been undergoing treatment for leukemia for the last 3 years. The rule in our house was not to do anything before running it past the oncologist. Seemingly harmless actions like giving my child vitamins (with folic acid) could have weakened some of the meds he was taking, making his treatment less effective. We have learned to err or on the side of caution, trust our instincts and be upfront with other health professionals that we feel it is necessary to check with our son's oncologist when addressing any health issues. No disrespect to the other health professionals that care for us, but the leukemia pretty much trumps all other issues we have faced. Not to mention I don't expect them to be well versed in my son's illness, his current status or the meds he is taking. Good for you for trusting your instincts. That was the right thing to do. Best wishes to you and your family.

She should wear a Medical ID braclett at all times!! God forbid she is in an accident or something major, this information should be right with her. I am very suprised your hemo had not made clear teh dangers of surgery and ITP to gher and you before so you knew ahead of time. Please stress to your daughter how important she takes her health and encourage her to wear an ID braclet (they make cool looking ones these days).

You are not being neurotic. My son has hemophilia A, severe. My husband is the same way, everything is fine and sometimes I think he just does not get the importance of the problems we can face. If my son ever needs any kind of dental work other than a minor cavity or cleaning/x-rays, he will have to have treatment for a couple of days before he can have the procedure done to prevent any bleeding problems. I am trying to teach him the different ways he needs to advocate for himself. Since your D is in college, make sure she is aware of the different things she needs to do to advocate for herself. You have been in charge of her life and now that she is older, she needs to be able to take charge with you or on her own. Since she has a medical condition, consider that any medical procedure (dental is medical) needs to be weighed carefully and consequences considered.

I am surprised the dentist did not even request a doctor okay. When my son was 4, the dentist we went to at the time would not even do a cleaning with out a note indicating it is okay. I thought that was overboard. And our current dentist would not do a cleaning for my husband without a note because he had back surgery and nerve injuries years ago.

You have to be her advocate and question everything. As she gets older, she will have to
be her own advocate. Any procedure being done, should be passed by the hematologist.

Wow, good thing you double checked! I agree with the suggestions of a medic alert tag for your daughter. Sometimes it seems like if you have a child with a rare and/or serious medical issue you spend a lot of time and energy educating the people who come in contact with your child--even medical professionals sometimes. I hope your daughter realizes how important this job is so she can take it on herself now that she is an adult.

At the least, I'd have a heart to heart with your dentist. Maybe he didn't realize the severity of the problem. Give him the hemotologist's number and a write-up about her condition. I'd bet next time he would be more careful.

Hi D.,

You did the right thing. Your daughter is still only 20. I remember those days of not having a care in the world. You will always be protecting her no matter how old she is.

I can relate. My 6 1/2 year old has a form of ITP called Shambergs Disease. Her platelets will get a bit low and they seap thru the veins and stain her skin. The doc took blood work the 1st time and showed her platelets were low. Then I took her to a hemotologist and they were within normal limits (about a month later) so he said it's normal for platelets to fluctuate. But she still has this staining on her skin for over a year. I am so paranoid, because it seems like i get the run around. I am worried to give her meds like advil or tylonol when she is sick, because that thins the blood. I feel like in this past year i have developed a million gray hairs. :-) All I do is worry. She has to go for her well visit in April and I'm so curious what her platelts wil be then. I do not have much confidence in doctors. when this originally started i saw a dermotologist and he was like oh it's ezcema. I was like i'm not a doctor but this is not ezcema. It clearly wasn't. I then showed the pediatriaian and they were stumped. When i showed the "spots" to the hemotoligst he was stumped. I then found a new dermatologist who knew exatly what it was just by looking at it. It's just so stressful!

Good mama instincts-glad to know they don't fade away! I'd react like you did and wld not go back to the same doc. Surely there r other oral surgeons. You shld go w/ her & interview the doc & be confident that he can handle her situation before scheduling the surgery.all the best!

Wow!!! You were being proactive in her health care, and that is exactly what you hear people advocating that we should do. You are a prime example of why this should be done.
You are not being neurotic, you are realizing how dangerous the situation could have been. Personally I think the DDS should have said to you --- check with your medical MD and we set up surgery when I have their approval. That is what they do with heart conditions -- yes I have one. I have never had a cleaning never mind surgery without them asking the MD.
It was neglect on the DDS part, and get your MD to write DDS a letter about your daughter's condition, but more importantly make sure that your daughter has med info that states no surgery on her person since you are not expected to be there to intervene for her as she gets older, and there is a possibility that she won't be able to speak for herself. You probably have been told and maybe she wears a "medic alert" but if not consider it. EMT's look for them maybe DDS should too
Moms still have to advocate for their 20 yo daughters, even though they can't get info any more unless daughter agrees.
God blessed you with worry that caused you to act. All emotions are good emotions used properly. You used worry properly with great results. Congrats mom!!!

I agree with you 100% and your not being neurotic I question everything when it comes to me and my husbands and especially my childrens health, not all the time the Dr. knows best, sometimes you have a feeling that comes over you that makes you want to no everything there is to no. Im glad you investigated what every person or parent should do. Im glad that your daughter is ok. Have a blessed year.

I have a daughter with special needs. Rule no. 1: you are the primary care giver and specialist. Yes, a dentist should be on top of such things, but most people are interested in what they already know, not in learning more. That's just a fact. So, you have to work with the facts, not what we think should be. Since your daughter is 20, a gift you can give her is autonomy and train her to take care of her own medical needs. She will be the one who needs to understand her condition AND to take charge with doctor/dentist/teacher/boss, etc.

Not neurotic at all. Perhaps you can see it as a blessing in disguise. It is good that you are an advocate for your daughter. Now, may I suggest that you teach her to be an advocate for herself (as she is an adult now and won't always have you to be there). You knew to question the safety of the surgery and to ask the right questions to the hematologist. This may sound harsh, so I apologize up front, however, if you hadn't asked, would your daughter have? If not, perhaps this is a good opportunity to have a strong heart to heart conversation with your daughter.

Not neurotic at all. I would not hesitate to change dentists. My faith and respect for him would be completely shot. Great advice to reinforce the message with your daughter, and a great reminder to all of us, even those whose family members don't have a medical condition. GREAT JOB!!!

Your dentist shouldn't know about all medical conditions. What he should have done was direct your daughter to contact her hematologist. Since he did not do this, and a disaster could have resulted, I would switch dentists. However, this must make you realize that you must be responsible for your own healthcare - and if your daughter is in college, I am assuming she is 18 or older, so she must be in charge of hers. It's important for you to teach her this now, because while the hematologist may have given you information about the surgery, since she is 18, doctors will not give you information about her health status so make sure she's prepared to be fully responsibile for her health.
I am so glad that a disaster was avoided! Thank goodness your own intelligence and instinct was stronger than the advice of your dentist