weird night

[acdrobert]

This has been a weird day and night. Thomas started abruptly ticking this morning in church. I have given him 2 doses of Advil but have not gotten control of the tics. He has no other symptoms of anything. Sometimes I just wonder if he comes in contact with something in the air that just sets him off.

 

I am thinking that I need to get Thomas to an immunologist to have some labwork done. I totally dread this because lab draws are so awful for Thomas (and me) Like all of our kids Thomas has been stuck many times and now won't walk into a medical office if he thinks labwork is imminent. His fight or flight response kicks in and overwhelms him. I honestly don't think he could possibly tolerate any allergy skin testing. Has anyone else had this problem ? Any remedies ? Has anyone asked for Ativan for blood draws ? Valium ?

[EAMom]

Have you tried the EMLA patch or EMLA cream for blood draws? It used to be non-prescription and you could just order it online. When I last looked, it was harder to get (the patches at least) but there are some Canadian pharmacies that have them.

[peglem]

We use valium for blood draws, and put her on a table- I straddle her and if we have a very good phlebotomist and one or 2 helpers-it works. The weird thing is, the whole time she's really trying to cooperate...its the F or F getting in the way.

[dcmom]

Ask your doctor to prescribe the emla cream. Put it on his arm, with bandage covering 45 minutes before blood draw. My pandas dd, age 6, freaks out even if the Dr wants to look in her ears- but even she admitted she couldn't feel the blood draw with the cream. He probably won't believe you, but once the needle is in- he will see and it will calm him for the next time.

 

I wish I knew about the cream sooner. The drs should really prescribe it for any child under 10 or 12.

[NancyD]

We tried it twice when Sarah was little. It only seemed to make her anxiety worse since you have to do it in advance.

 

Nancy

 

Have you tried the EMLA patch or EMLA cream for blood draws? It used to be non-prescription and you could just order it online. When I last looked, it was harder to get (the patches at least) but there are some Canadian pharmacies that have them.

[NancyD]

We tried Atavan but Sarah said it made her much more anxious. She does not do well with most medication. I always dreaded blood draws and IVs since I knew I would get physically bruised from her. It took 3-4 people to hold her down. She screamed and kicked and tried to run away. Once at a children's hospital they saw her coming and said out loud so I could hear "oh no, not her again!" That was the last time I went there!

 

Now that she is older and doing a monthly IVIG it has become routine. She still hates it and takes it out on me verbally, but once they get the IV in she is fine. I have tried it all -- preparing her with stories in advance, desensitizing her with replays (doing it on a doll), driving 30 different ways to the hospital so she wouldn't figure out where we were going until the last moment, springing it on her at the last second, bribing her with prizes, etc. The prizes seemed to work the best though they got more and more expensive over the years and I had to stop them after her first IVIG infusion. I used to let her pick out her prize in advance and then we would buy it right after the blood draw or IV.

 

Now I remind her one week in advance about the upcoming infusion and when she moans and groans or is verbally abusive, I ask her which she would rather have -- the tics to come back or the infusion. But she's old enough now to process it cognitively.

 

She hates it when they chitchat too much while doing it, she hates it when they count to three, she hates it when they use anything sticky on her arm, and she hates it when they are too cheery. They can't give her a band-aid and they can only use certain needles. Oy!!! I always have to give instructions as to the do's and don'ts so we can minimize her angst.

 

I hate blood draws!!

 

Nancy

 

Has anyone asked for Ativan for blood draws ? Valium ?

[acdrobert]

unfortuneately we have tried the cream. I think it must make a difference but his F or Fl reaction is stil the same. His screaming outlasts the actual blood draw by at least several minutes.

 

 

 

 

 

 

Ask your doctor to prescribe the emla cream. Put it on his arm, with bandage covering 45 minutes before blood draw. My pandas dd, age 6, freaks out even if the Dr wants to look in her ears- but even she admitted she couldn't feel the blood draw with the cream. He probably won't believe you, but once the needle is in- he will see and it will calm him for the next time.

 

I wish I knew about the cream sooner. The drs should really prescribe it for any child under 10 or 12.

[acdrobert]

This sounds a lot like Thomas. I have to admit that the blood draws make me upset too so I am not the most rock solid of parents. I just hate it when he gets so afraid. I didn't think about Ativan having the opposite effect.

 

 

We tried Atavan but Sarah said it made her much more anxious. She does not do well with most medication. I always dreaded blood draws and IVs since I knew I would get physically bruised from her. It took 3-4 people to hold her down. She screamed and kicked and tried to run away. Once at a children's hospital they saw her coming and said out loud so I could hear "oh no, not her again!" That was the last time I went there!

 

Now that she is older and doing a monthly IVIG it has become routine. She still hates it and takes it out on me verbally, but once they get the IV in she is fine. I have tried it all -- preparing her with stories in advance, desensitizing her with replays (doing it on a doll), driving 30 different ways to the hospital so she wouldn't figure out where we were going until the last moment, springing it on her at the last second, bribing her with prizes, etc. The prizes seemed to work the best though they got more and more expensive over the years and I had to stop them after her first IVIG infusion. I used to let her pick out her prize in advance and then we would buy it right after the blood draw or IV.

 

Now I remind her one week in advance about the upcoming infusion and when she moans and groans or is verbally abusive, I ask her which she would rather have -- the tics to come back or the infusion. But she's old enough now to process it cognitively.

 

She hates it when they chitchat too much while doing it, she hates it when they count to three, she hates it when they use anything sticky on her arm, and she hates it when they are too cheery. They can't give her a band-aid and they can only use certain needles. Oy!!! I always have to give instructions as to the do's and don'ts so we can minimize her angst.

 

I hate blood draws!!

 

Nancy

 

Has anyone asked for Ativan for blood draws ? Valium ?

[thereishope]

How old is he? My 5 year old is horrible with doctor appts, esp if he's in a PANDAS episode. When he's in an episode, it takes 4 nurses and my husband to hold him down for a throat swab. Last time he was not in an episode, so he actually opened his mouth for it but then postal afterwards with hitting, spitting etc. I can't even imagine a blood draw.

 

I've found I give him warning but not a lot. I tell him day of about the appt. Sometimes I tell him at home, but wait until he has his shoes on. Sometimes I wait until he's buckled in the car. You want to give notice but not so much that the anxiety has a chance to really build. I feel so bad saying this, but with my son I thik if I had to get a blood draw he'd not really have a choice but to scream. I'd try to get it done in a peds' office or peds' outpatient where they might be more understanding. If you can get a room close to the exit that might be good too. Make sure you have all paperwork done prior to going for the draw so you can soley concentrate on him afterwards or bee line out of there. I always promise a treat after a doctor appt. I think it's so I don't feel as guilty, but he does aways make sure we follow through on the promise as well.

[NancyD]

One other thing I used to do that worked well with blood draws. I made arrangements with the head of the blood lab at our local hospital to whisk Sarah in the back door so she didn't have to sit in the waiting room or walk in the front of the lab. Three technicians would meet us and we would quickly get Sarah on my lap and draw her blood. We then headed to the gift shop where she could pick out one Webkinz. It became routine after a while and it worked well.

 

Nancy

[EAMom]

Webkinz bribery rocks! (I used it on my younger dd for throat cultures, my pandas dd is actually pretty good for blood tests.)

[dcmom]

I even have to resort to bribery for non pandas daughter when it comes to medical "stuff". She will be getting cultured today, strep is going around her class

She likes school supplies!?!

[thereishope]

You daughter and my non PANDAS son have a lot in common. You could totally bribe him with school supplies When Target puts out the school supplies over the summer it's like Christmas to him.

 

 

I even have to resort to bribery for non pandas daughter when it comes to medical "stuff". She will be getting cultured today, strep is going around her class

She likes school supplies!?!