christian's tummy

Hi guys,
so we have been on a strict 5 night desferal regimen and trying to stay positive even though some nights I feel like my heart will break when he tries to be brave but his eyes well up with tears.

my or should i say Christian's issue over the last couple of weeks is his tummy.  it is red and rashy.  when i have to wipe him with the swab before the needle it stings him.  we never had this problem before.  is it the emla?  the tape?  the desferal?  that he is reacting to?

we had a night off last night and i bathed him, and lathered his tummy with some sorbolene cream.  i looked at his tummy this morning and it is still red.  the reddest and rashiest part is the last spot we injected him in.  the other spots are clearing up.

is this normal? 

vic

This also occurred with our son.  We found that using baby aveeno, unscentented helps heal his belly. It also helps to be extra careful when removing the needle in the morning. 
You may also consider using different tape, if the tape appears to be irritating him.

Sharmin

This too happened to me too for many years as a child & if i have my desferal 5 nights a week it still happens now,for me im allgeric to desferal i come out in red "hives" very severe lumps sometimes i put abit of bruising cream on it it helped,but often it would take weeks for the lumps & bumps to go away.This problem is just because we are having desferal so often or sometimes if the needle/desferal isnt being inserted into the muscle deep enough on the surface a "buldge" of desferal can sit on the surface and be red and itchy it can take sometimes a week to settle down but for me sorbelene didnt really help.I dont know if this helps you,but all the best for little christian.
P.s try before desferal rubbing a cube of ice over the spot where the desferal is going to be inserted sometimes this can help,also i only use micropore tape as the see through plastic tape some people like myself are allergic to it.

Hi,

I used to get painful red bumps rather than itchy ones. Three of which got infected and have left black marks. After that I always insert the needle deeper by making a steeper angle with the skin. It is painful in the beginning as the needle goes deep but now I don't get painful bumps and the site heals quicker.

I also utilize my thighs which give more time to each site to heal. You can try the upper arms if you like as the thighs will be bit difficult for him.

Hi Vic.

I would definitely try to give his tummy a rest and use other subcutaneous areas in the meantime.  It could be several things irritating his belly.  It could be the medicine (it may need to be diluted a bit), it could be the depth of the needle (which kind of needles do you use?), or it could be the type of tape.  It could also be the Emla, but it's more likely to be one of the other things.  I find that tegaderm works the best.  I'm allergic to tape, and only use tegaderm, and it works great.  I don't get irritated at all from it.  Tape is very irritating to the skin.  How many grams of Desferal is he using, and how much sterile water do you dilute it in?

thanks guys,
if anything this site reassures me that christian is not the only one going through it and you have all had to put up with the many trials and tribulations in order to keep on being compliant with the therapy. 

i spoke to his hemo this morning and she said to bring him in as it could be any number of reasons for the reaction.  last nights spot is really red and rashy this morning.  its not bruised and does not look like a welt- it is red, spotty, rashy.

danielle, he has one vial of desferal in 10mL of water which is very diluted i imagine.  we use tegaderm for the emla cream and a 19mm butterfly needle.  the needle is taped down horizontally, vertically and diagnonally with micrpore tape.  maybe it is the emla as his skin gets red when i wipe it off.  i really dont know.

vic

Well, I'd much rather it be the Emla than it be a reaction to the Desferal.  Hopefully, it's not that.  I became allergic to Desferal in my late teens and had to be desensitized to it so I could use it again.  It's probably a superficial skin reaction, but it's definitely a good idea to take him to the doctor, just in case it's not.  Have you tried using different needles?  I gave myself so many scars by using those butterfly needles when I was a kid, because I didn't get them deep enough into my skin.  The 90 degree angle needles are so much better. 

Let us know what happens at the doctor.   

Hi Vic,

From http://www.drugs.com/cons/emla-topical.html

Other side effects may occur that usually do not need medical attention. However, check with your doctor if any of the following side effects continue or are bothersome:

More common

Burning feeling, swelling, itching, or skin rash at place of application (without other signs of an allergic reaction listed above); white or red skin at place of application

For anyone using EMLA cream...Please read the dosage instructions and do not exceed the recommended dosage. The anesthetics in the cream are absorbed through the skin and can cause more serious side effects. It is especially important in children because of their lower body weight.

thanks andy,
i guess in the back of my mind i was aware that anasthetising the skin every night would have to have implications and the emla may seem to be what christian may be reacting too.  im very careful about how long it stays for and the quantity but after such continuous use it seems to be having an impact.  also children's skin is so gentle and sensitive.

the question is how do i go about not using it.  we have been through so much in regards to using desferal, that he wants no part of the routine changed.  it just freaks him out. and after 7 weeks of intense therapy and psych-med in order for him to accept that desferal is a part of his life, how do i avoid using the emla?
vic

We used emla for a short time with our son - we had a few months where he did not want desferal so we had to use it.  We no longer use it because he has adjusted to us not using it - after the age of 6 things got much better with him and he became much more co operative. 

We also realized that if we carefully removed the tape, and then the needle in the same direction in which we had inserted it the site healed much better. 

Our son's belly looked horrible at one time, but it looks so much better now.  His doctor actually made note of the improvement as well and said that he would suggest Aveeno to other patients as well. 

Best of luck, I hope that Christian's tummy improves soon.

hello vic
emla doese makes skin red and itchey as my daughter had the same problem.she is not on defrosal yet,they use emla just before they insert needle for blood tranfusion. now they use the numing spray .its not effective as emla but its better option for her.i think u should also use numing spray see if thats helps
alia