Awful Day!

[Tamistwins]

Hi All,

 

My train wreck of a life seems to be getting worse and worse. Today I took my 15 month old to the lab to draw blood for Cunningham test. It was so awful, the tech didn't get the needle in the right spot and then they had to stick him again. He was screaming and I was heartbroken. To top it off, apparantly labcorp's new policy is that as a courtesy to us they can draw blood to be sent out elsewhere only if we have a script for other blood test that labcorp will perform. In other words they were forcing me to get a script from Dr. for any other bloodwork otherwise they couldn't draw the blood for Cunningham test. This would require another vial for my 15 month old. Well, after the mishap with the tech it seems as if they didn't draw the extra blood. Then my 7 year old who tested high on the Cunningham test had an ear piercing melt down. When are things going to get better? We are 4 weeks after first IVIG and things are just worse. Sorry just needed to vent.

[peglem]

Sorry things are so rough right now. Sending prayers, and hope things start to settle down for you soon.

[Sylvia]

Oh yeah, I can remember some pretty hairy lab visits too! It does get better, but it never seems like so when you are in the thick of a traumatic blood draw! You'll get through it!!!!

 

Hi All,

 

My train wreck of a life seems to be getting worse and worse. Today I took my 15 month old to the lab to draw blood for Cunningham test. It was so awful, the tech didn't get the needle in the right spot and then they had to stick him again. He was screaming and I was heartbroken. To top it off, apparantly labcorp's new policy is that as a courtesy to us they can draw blood to be sent out elsewhere only if we have a script for other blood test that labcorp will perform. In other words they were forcing me to get a script from Dr. for any other bloodwork otherwise they couldn't draw the blood for Cunningham test. This would require another vial for my 15 month old. Well, after the mishap with the tech it seems as if they didn't draw the extra blood. Then my 7 year old who tested high on the Cunningham test had an ear piercing melt down. When are things going to get better? We are 4 weeks after first IVIG and things are just worse. Sorry just needed to vent.

[kimballot]

yes... I remember the first time my son's blood was drawn for DNASEB around 6 years old - he tried to run out of the building and I had to corner him in the vestibule and beg, plead, and bribe him until I could get him into the room. Once he was in he chair and on my lap he changed his mind and he was hitting me and pinching me and calling me mean names. I had him at the children's hospital blood draw and the phleb. was a man in his 30s. He seemed so upset that I was allowing my son to treat me that way. He finally said to my son (In a very fatherly tone of voice).. You don't hit your mother!! I looked at him and understood he was trying to help and I said "It's OK... I am hoping the results of the test you are drawing for will help us understand why he is acting this way. He really does not act like this all the time". It was horrible. I got him in the car, strapped him in his car seat, and cried for a few minutes before I left.

 

That was 7 years ago. Thankfully... we've come a long way with this stuff and I don't really think about it anymore.

 

Tamistwin - you are doing a good thing and you will look back and be glad you really checked everything out!

[Sylvia]

Yes, this thread is bring back some memories! One of the unusual things about my son is his strength. Think Bam-Bam and Superman rolled into one! Helpful lab techs were always blown away how strong he really is. He is actually on the smaller side, but all lean and muscle. I remember how UN-dignified I have had to be - stradling him on the gurney, my rear end up in the air while my upper body kept his shoulders down (without pushing down on his chest ofcourse - not easy!), while two or three other people held legs, while the lab tech drawing the blood must have been thinking "there has GOT to be an easier way of makin' a living!

Now 6 or 7 years later, he actually asks for needles - I know that is kind of scarey and weird, but we started him on glutathione IV's a couple of years ago, and he really feels better after them. So he is still mostly non-verbal, but sometimes he will come up to me and point to the inside of his arm to ask for one. It is really nice now - I can take him for a blood draw or infusion myself and not even break a sweat!

 

yes... I remember the first time my son's blood was drawn for DNASEB around 6 years old - he tried to run out of the building and I had to corner him in the vestibule and beg, plead, and bribe him until I could get him into the room. Once he was in he chair and on my lap he changed his mind and he was hitting me and pinching me and calling me mean names. I had him at the children's hospital blood draw and the phleb. was a man in his 30s. He seemed so upset that I was allowing my son to treat me that way. He finally said to my son (In a very fatherly tone of voice).. You don't hit your mother!! I looked at him and understood he was trying to help and I said "It's OK... I am hoping the results of the test you are drawing for will help us understand why he is acting this way. He really does not act like this all the time". It was horrible. I got him in the car, strapped him in his car seat, and cried for a few minutes before I left.

 

That was 7 years ago. Thankfully... we've come a long way with this stuff and I don't really think about it anymore.

 

Tamistwin - you are doing a good thing and you will look back and be glad you really checked everything out!

[Kristy S]

You're definitely not alone. Got my son's labs done for titers recently (sister has PANDAS) and they poked and poked and poked..he is so skinny and has wiggly veins. I was so upset, he tried to be a trooper (he's 5) I know it's heart-breaking, but it's worth it in the end.

 

Melanie (sister) had just had IVIG and it turned out his titers were really high so he got antibiotics and Melanie did not get sick from him having Strep. Worth it but miserable to do. Things will get better, try to keep the faith.

[Tamistwins]

You're definitely not alone. Got my son's labs done for titers recently (sister has PANDAS) and they poked and poked and poked..he is so skinny and has wiggly veins. I was so upset, he tried to be a trooper (he's 5) I know it's heart-breaking, but it's worth it in the end.

 

Melanie (sister) had just had IVIG and it turned out his titers were really high so he got antibiotics and Melanie did not get sick from him having Strep. Worth it but miserable to do. Things will get better, try to keep the faith.

Thank you everyone for your responses. It's good to know but what has knowing done for me with my other two kids. Things are just getting worse. Everyday is a battle, I just pray for one normal day because my nerves can't handle this stress anymore. I know so many of you are going through the same thing, I just hate how I feel towards my older ones. I hate that none of us are happy and I feel like a total failure as a parent.