Child has no thyroid gland, refuses test,help - Children's Health Message Board

sivad · 12-08-2005, 07:49 PM

Child born with no thyroid gland, refuses blood test. Critical.
Please help with any suggestions for us. We are at the end of our rope. My granddaughter was born without a thyroid gland. From birth she has had to have blood drawn every 6 months to accurately measure replacement thyroid doses. From birth to present age, just turned twelve, she has fought, screamed, cried and always had to be held down. Now she is twelve and has just grown a lot. No longer can she be held down. Everything has been tried. Bribes, counseling, talking to her, and today tranquilizer. But to no avail. Her loving parents are just beside themselves. She will not have her blood drawn and is now out of medication at day 4. The clinic will not try on her again. The technician got her back hurt in the struggle today. Her Doctor will not prescribe meds without the test. The family, including her, were given a paper about how her illness will progress without her medication from dry, cold skin to heart failure.
She, the child, is one of the top students in her class. Very outgoing person, plays several instruments. She really tried to go through with it today, but at the moment of puncture, panicked and fought.
Surely she can't be the only child to have gone through this. If you have any ideas to help please post. We will not spank or beat. She has had privilages taken away and been made to stay in her room, to no avail, except for her crying and crying. This is making our whole family upset. We love her so. Please help. Thank you, Sivad

Kiera1595 · 12-09-2005, 04:49 AM

I am so sorry that you are all going through this. It sounds like she does understand to some extent that she really needs to do this. I think it's promissing that she at least tried this last time. I wish I had the magic answer but here are 3 things that came to mind that are not things you mentioned.

Can you call a bunch of doctors/hospitals and get their opinions about what you could do? Not just the one you're using. Perhaps talk to a specialist, even if it's not in your town, just to get their opinion on how to handle the matter.

Can you have her best friend talk to her? I know that might sound strange, but at 12, best friends can be more important to you than your family members. It might embarrass her if her friend doesn't already know, but she might listen to her. Maybe her friend can convince her of the critical importance of the matter. I fought the reality of a lesser medical condition at that same age, and it wasn't until my mom had my best friend talk to me that I did something about it. And my best friend came with me to the doctor. It really helped with my fears.

What about hypnosis? I don't know much about it. I don't know if they can do it on people her age. But it may be a way to teach her brain to relax enough to allow the blood to be drawn whenever she needs to. This obviously wouldn't be an immediate answer.

These are all shots in the dark, but maybe they will trigger more thoughts of how you can handle this. Again, I really feel for you. Please let us know what happens.

Another thing that's extreme, could you have a doctor knock her out? I hate to go there, but if it's really that severe, maybe that's the answer. Like in sedation dentistry they just give you a pill and you go to sleep for a little while. Again if she had a friend there to help comfort her and tell her when she woke up that all that happened is that she slept for a little while. I don't know.

rouge · 12-09-2005, 07:03 AM

If she is going to die without the test then I would have her put under. Maybe the gas the dentist uses? Then I would put her in counseling to help her prepare for her next blood test in 6 months. She may have some PTSD over all her traumatic past tests.

kehorner · 12-09-2005, 10:15 AM

What about that stuff that numbs the area? I don't know if they use it for blood draws or just IVs, but I know there's something that doctors can use for kids to numb the skin (it's either a cream or a patch). Is there a children's hospital in the area that she could go to? Or could you call one to get suggestions?

Ratatosk · 12-09-2005, 10:29 AM

DS has to have his blood drawn once a year and we INSIST that they use the numbing stuff. Otherwise we'd have to hold him down, plus he has hard to get to veins like me, so I'd hate to have them digging around there like they do to me without some numbing stuff. The nurse puts the ointment on about half an hour to an hour before we go down to the lab. It works wonders.