Remicade twitching and nosebleeds

[Jilfed]

My 10 year old daughter about a month ago a couple of days after her remicade she started to get minor nose bleeds. Then she had a pretty severe one while visiting her dad. She just had her remicade infusion on Monday the day before school started. Since she had the infusion she has had three severe nosebleeds. Gross long clots coming out. The only way to describe it would be as if i pulled two earthworms connected out of her nostril. The length and width were unlike anything I had seen. She also started to flare up. I'm thinking new school year and she is stressed. At 2:30pm today i get a call from the nurse and my daughter is in there again with a nosebleed, she described it as normal. I was walking towards the school when she called by the time I got to my daughter these long bloody clots were coming out of her nose, then she said oh god its going down my throat and she starting gagging and coughing up the blood coming from her nose.

I immediately called her GI doctor and she said that this is not a side effect from the remicade. Im at a loss because some remicade sites say it is.
She has also developed a weird head jerk twitch thing. At first I thought she was tossing her head to move her hair from her face, but as i watch her it is definitely a twitch of some sort. I am still new to all this so if anyone can shed some light on the nosebleeds and twitching i would really appreciate it. She sees her pediatrician Monday morning and an ENT dr on Tuesday.

 

[Tesscorm]

I'm so sorry you're dealing with this! I don't think I've ever read of symptoms like you're describing... I vaguely remember another parent mentioning nosebleeds but not sure if their child was on remicade??? I'm going to tag Kimmidwife ..., it may have been her daughter??

Did your daughter just begin remicade? Or has she been on remicade for a while and this is a new symptom?

I think if you are concerned or if it worsens, I would go to emergency??? :ghug:

 

[Jilfed]

She's been on it since January, so it's only been going on for a month. On the remicade sites it doesn't list it as a side effect i found the nose bleeds and the slight twitch on the clinical studies pages for remicade. There weren't enough reports of it to make it on the side effects list if i read it correctly. She remains very calm through the nose bleeds I am the one whose a mess.

 

[DustyKat]

Hi Jilfed and :welcome:

I am so sorry to hear that your daughter is experiencing these problems, poor love. :ghug:

I think you need to look past the nosebleed in particular as a symptom side effect and look to the fact that unusual bleeding is a noted side effect. Remicade does have the potential to lower your platelet count so that will affect your body's ability to clot blood. Whilst a nose bleed isn't uncommon for many children, the type that your daughter is experiencing certainly are, although I know of one child in my circle of friends that has no medical issues but he has the most horrendous nose bleeds, just as you describe and he also bleeds out of his eyes! :eek2:

Remicade also does carry some neurological warnings and twitching would fit into the neurological class.

It is good to hear that you have appointments on Monday and Tuesday as I think the docs need to suss these symptoms out and find a cause whether they be Remicade related or not. In the meantime maybe you could document what her symptoms are in relation to the nosebleeds and twitches, their frequency, how long they last and if you are aware of anything that may trigger them.

Good luck and please keep us posted with how you get on.

Dusty. xxx

 

[xmdmom]

I'm really sorry you're daughter is dealing with these problems. The twitch sounds like a motor tic. I hope the pediatrician will be helpful.

 

[my little penguin]

:hug: ^^^^^ yeah that
motor tics - i think show up in 25% of all elementary school kids

Tourettes tends to show up in that age group-
typically motor and verbal tics .

http://tsa-usa.org
http://www.mayoclinic.com/health/tourette-syndrome/DS00541


the ped should be able to help or ask to see a ped neuro - some specialize in tourettes and could help you get to the bottom of it.