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
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.
"Go slowly, breathe and smile" Thich Nhat Hanh
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.
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?
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.
Thanks everyone for your helpful suggestions. The parents finally got the Dr. to prescribe another 30 days, so we bought some time, which is helpful especially over the holidays. Still the 30 days will go fast and we have to have the answer by then.
Your suggestions are wonderful and encouraging for the parents, my son and his wife.
Keep them coming if you think of anything. Thanks again, Sivad
i guess i don't quite understand the actual reason for her behavior.considering that she seems to be normal in every other way,what has she stated the actual problem is exactly?My son has had to have constant blood draws for over six years now which started when he was in liver failure(at that time he was needing then three times a week)now,luckily,he is at once a month.but he just 'knows" that no matter what,this HAS to be done,no ifs ands or buts.does she fear the pain or does she just totally freak out as soon as she sees the needle?What i am trying to actually find out here is how she reacts and at what point does this occur.i mean is this a total out of control 'mental"type of issue?does she actually get in the car okay knowing that she is going to need this blood draw and she is very much aware and actually 'tries to be able to sit there but just cannot?just wondering as this could be two seperate issues.Is this a rebeliuos type of behavior where she is trying to maintain control or can she just not help it?i guess that is the real question i have.as one would be deliberate and the other much more of a psycological response.If she just has a simple fear of pain type of thing there are ways to numb the area with the EMLA cream or lidocaine patches.also,and this really makes a HUGE difference do they use the butterfly or a regular syringe for the draw.I can tell you just frommy own experience and my sons that the butterfly is much much less painful than the actual syringe stick,honestly a huge difference in the pain you will experience.It is just not quite as 'harsh"feeling.this is the ONLY way my son and now myself,will consent to having our blood drwn.if they are not usingthis,they really do need to switch.If she is actually rebelling and this is not a mental issue,she needs to come to grips with this as just part of her life in anyway that you feel is the way to go,whether it is severe punishment or loss of a big privledge,whatever.but she has to know that she does not have any control over this at all.it is not a choice,it HAS to and WILL be done,one way or another.this really IS quite the over the top type of reaction.I mean my son has never liked it,but unfortunetly he has absolutely no choice in the matter at all,it just IS part of his life forever.if this is more of a mental type of reaction that she just cannot help(which does not sound like it is the case?) you may have to go with some level of sedation.only you really know for sure here just what type of a reaction this is,either rebellion or mental health related.whichever it is,will really dictate which way to go.but at any rate,try the butterfly if you are not having it done already,it REALLY does take at least some of the more intense pain out of the picture.good luck,Marcia
Thanks for the post Feelbad. My understanding is she really tries and then at the very time of the actual draw just panics and fights. Another observation, all of the girls her age have their ears pierced, Not Her, she will not, and says she never will. I personally think it is needle panic. I am not a professional, just her grandmother, who is really worried about her. She had valium at the last visit and sat an hour waiting for it to help. Her Dad said she was nervous, but waited and tried, only to fail again. Her parents are reading the posts and I am so grateful to all the concerned parents who have shared their ideas. Sivad
I sure can relate to what you aregoing through. It's not an easy situation for anyone involved. I have a now 13 year old son who was born with a rare disease and he has to have some pretty major labwork done at least every 6 months. It has taken him many years to learn and accept that he has a choice. He can either sit there and have it done and be over with it in one minute or be hospitalized and then he'll have to not only get the same blood draws but deal with I.V's and people poking at him all the time. It was his choice.
It certainly didn't happen overnight but he gott to a point where he now sits there, can even laugh and talk while having it done, knowing that it will be over in no time and that he really won't even fell it! We always use Emla cream. It is a thick white pasty cream used to numb the area before kids get labwork. It's great stuff. It is only available by prescription but your docs office can apply it before the labs are done. It takes about 15 to numb the area. Good luck to all of you.
I can understand completely the fear of needs not for myself but my husband and both boys are afraid of needles my husband is because when he was 5 and had a vaccine he tensed up so much he actually broke the needle in his arm and this has freaked him out forever plus he is a hard stick for labs and they generally have to either poke him a lot which is painful or use a butterfly and he can't always seem to convince people of that because he has deceptive veins. My 9 yr old son isn't horribly afraid but very nervous due to a similar problem to my husband he actually bent a needle in his arm at 5 he has very stong muscles for a kid. My 11 year old son has had a lot of lab work and and other tests done for his medical problems different ones keep coming up since a baby and he has never tolerated them well he is afraid of the needle even with the emla cream and butterfly needle even though afterward he will say it wasn't so bad. I beleive it is an anxiety issue. I am not sure I guess on what advise to give you we do eventually get through it though eventually with him it is a lot of talking and hand holding sometimes holding the arm down and he has been know to tell nurses to get out of his room. He appologizes in the end but I think he is frustrated because we still don't really know what is going on.
I could be wrong, but I think the name of the cream is Emla. It's been many years ago, but when my son was an infant, I tried to get his pediatrician to use it before his shots. She basically blew me off and said I was overprotective. Didn't go there twice.
I would highly suggest the use of the emla along with making sure that they use that butterfly.This truely is the only way my son will really be comfortable when having to get those monthly blood drws.and having to have alot of bloodwork myself,I too feel a really huge difference in the pain levels .that straight needle shot,espescially when they have to change out the tubes,can really be very painful,but that butterfly just slides on in there really nice and there is no push and pull action at all when they have to change out the tubes.I wouldn't get any blood draws at all without the butterfly.why put yourself or espescially a child thru the straight needle stick if you do have an option?one day,she is just going to have to come to grips with the fact that this just IS something that she has to do.but the easier they can make it for her and maybe giving the actual chioce of saying she would rather have the butterfly than the straight needle would at least give her some control,at least in her mind anyway.just a thought.I hope things get better for you all soon.Marcia
Sounds like a phobia to me.... completely irrational phobia. I had a phobia of finger sticks when I was a little kid. Don't ask me why. My mom did the same, tried bribes, I tried really hard. But then when they'd come at me with that gun, I'd just flip out. It would take several nurses to hold me down. To this day I'd rather have blood drawn from a vein than a finger stick.
My DS seems to have a phobia of the doctors office. He also tries really hard, but freaks out. It's obvious this is not a behavioral issue, as when they take his pulse it's REALLY REALLY high. He's just terrified. I hope he outgrows it.
I'd also look into having her put under, or what they call "concious sedation" if you haven't already tried that one. I had one done the other day for an egd (where they put the scope down your throat, and though I was concious, I have little memory of the procedure and felt quite "out of it" the whole time. They use a cocktail of Fentnyl (narcotic) and some sedative. The combo is more powerful that just valium or something.
DS born 07/05/2003
DD born 3/24/2005
As sad as this sounds I agree sedate her for the blood draw. Its her life, and at 12(mabye a wise 12) I don't think they(child) relise death can be a big reality if care for a condition is not taken. good luck
Update on Grandchild Born without Thyroid.
First, I must thank all who helped. Several of the items are being tried. Her Doctor is continuing to give her the meds she needs while she is working on the issue. She is in therapy and has now been able to handle the needle and syringe. She is trying so hard to overcome this. We love her so and are praying for her success in overcoming this fear. Thanks again everyone. Sivad
I just wanted to share a little something with you:
At 19 after giving birth to my son I was diagnosed with hyperthyroidism AND type 1 diabetis. You would think an "adult" could handle this right? Wrong. I went through serious denial. I refused to take my thyroid medicine and binged on candy bars (great for a diabetic ). I landed in ICU for 10 days. That made me stand up and pay attention to my sugar but still didn't quite get through with my thyroid. I would conveniantly "forget" to take my pill every day. I started losing my hair, had muscle aches, and gained about 40lbs. I totally understand your granddaughter's fear of needles. Is she completely aware of the complications caused by not taking her meds? I know you said she doesn't have a thyroid but does she literally not have one or is it just completely shut down? I developed a goiter from not taking care of myself and had to have mine removed. I couldn't swallow or eat anything solid. (Not to mention I started looking like I had an extra head growing out of my throat). She sounds like she's having full blown panick attacks. Maybe she should be on a daily maintenance med. (such as Xanax) for her panick attacks in conjuction with therapy. I'm not suggesting Xanax specifically due to her age but maybe there is something that would work for her.
Good luck to your family. I hope things work out for the best.
I think you should try anything and everything.. maybe educate her about the severity and necessity that she do these tests, but by no means punish her. She is scared, why should she be in trouble for that. educating someone in a situation like this could maybe do the trick??
I certainly hope things work out and she overcomes her phobia. I had a goiter removed when I was about 13. My hospital experience was not a happy one and the blood draws were tough. Needles were much bigger then and often the person doing the draw didnt get my vein the first time. I would much rather get my vaccinations than get a blood draw. I remember going once and two nurses tried over 8 times before finally hitting the vein. After my initial 1000 pills ran out, I never returned to the doctor for many years. I became 30 lbs overweight with no energy, began losing my hair, slept all the time and was constantly cold. I finally went to a doctor due to urging from friends and got back on medication. What a world of difference! I feel better now than I've felt in years. My doctor usually checks my TSH level about once a year and its been at the same level for six years now. They use a butterfly now which is almost painless and the technician seems to be more skilled. That makes a huge difference! Best of luck to her. The correct level of medication is vital.
As an adult who had her thyroid removed over 8 years ago I can certainly identify with the child. I think that the real problem may be that she doesn't feel in control of her body. I go through the same thing when it is time for me to get my labs done. I put it off as long as I possibly can, not because I am afraid of needles....it's because I hate "having" to do it. I hate having to be dependant on medication for the rest of my life. sometimes I feel as if I am being suffocated by my condition. Maybe if you let her decide when she should get her blood done (within the time frame of course). Maybe have a pleasant ritual to do after her blood draw. I don't know if she has a therapist to talk to, but that might be a good idea. I think that the most important thing that you can do is to validate her feelings. Tell her that you understand how awful it must feel not to be in control, but that she can take control of her conditon by getting her blood done on time and taking her meds as well as following a diet that is beneficial to people without thyroids. Tell her she is not alone and let her read some posts on this board. Go into the thyroid disorders section. It's very helpful.
I wonder how much of her panic and anxiety was caused by being held down for blood tests. My experience is that in some kids, being held down and forced to have blood draws just makes them panic more later on.
Ok, this is what worked for one extremely frightened 12 year old that I know of. It involves help from nurses though and will require their cooperation too. It is based on taking the blood draw process a little further each time.
Before I go into details though, I feel I should point out that (in my opinion) the topical anesthetic creams (such as EMLA and Ametop) are GREAT!
Visit 1: Apply some of the anaesthetic cream to child's hand and wait for it to work. child goes to treatment/exam room or wherever blood is normally drawn. Is allowed to explore the equipment in there (under supervision obviously). At end of session, and once child is relaxed enough, get them to touch where cream was. Hopefully child will realise how numb hand is!! That is a good start.
Visit 2: Has anesthetic cream applied and goes into blood draw room after it has had chance to work. Is put into same position as would be for blood draw (ie, sat in chair or laid on bed, whatever). Has torniquet applied to arm and gets skin cleaned. Nurse gets needle out of packet and moves towards where blood is normally taken from - but doesn't actually touch the area!
Visit 3: same as visit 2 but nurse encourages to child to have needle touch their skin (obviously on the numb area!). Child is reassured that the needle will NOT be pricked into their skin! You must keep this promise otherwise the trust will be gone!
Visit 4: same as visit 3, but child lets nurse put needle through the skin and into vein for blood draw
You might try these too - depending on what is the cause of her fears.
If it is the sight or sound of the procedure that makes her worse, allow her to close her eyes/turn away or let her listen to music through headphones to block out what is going on. If the problem is that someone once told her it wouldn't hurt, and then it did, it might be that she doesn't trust the nurses. Hopefully, step 3 should sort this out if the nurse keeps their prmoise not to ***** the skin.
You might find some steps need repeating. The one thing I must stress is that the cream is great!!!
This seems long-winded I know, but it well worth the effort, if you can get the hospital/care facility to help you out on this!