Yesterday morning I was changing Phillip's clothes and noticed that he had spots on his stomach and chest. I checked the rest of him and found nothing. A rash on most kids is just something that happens and is watched but usually not a big deal... for Phillip- because of the medication hes on - a rash is potentially deadly. Yes, deadly - as in fatal. Ugh. Phillip is on an anti-epileptic drug (AED) called Lamictal - and it is known to cause Steven-Johnson Sydrome and also TENS... both can be deadly.
Thankfully not ALL lamictal rashes are deadly - but you have to watch for signs and symptoms - like worsening rash, spots on the palms, sores in the mouth.... by today Phillip had all 3 of those... talk about being in mild hysteria... I was. Thankfully our neurologist has really stepped up his game and he called me himself and asked me to text him some pictures of the rash and the sore in Phillip's mouth. Shortly after I sent them he replied (whew!). He said that right now the rash isn't REALLY concerning to him (as in - its mild and we shouldn't take extreme measures right now). But that we do need to reduce his lamictal dose and see if the rash goes away or persists. I had to decrease it by 1/2 and I have to watch it for the next 24 hours (well, from 2 o'clock today) and if its not better or has gotten worse then we have to make a trip to the neurology clinic tomorrow.
I would deeply appreciate any prayers or healing thoughts you could send our way. I am really nervous about reducing his lamictal because it seems to be the medicine thats keeping the seizures at bay - but i obviously can't risk the rash getting worse.... its one of those double edged swords... It seems like we have alot of those these days.
well I guess I'm off to spend some knee time - praying for a healthy boy and absolutely NO seizures from this change in medication. thank you for any and all prayers/thoughts you send our way.
~misty~
Thankfully not ALL lamictal rashes are deadly - but you have to watch for signs and symptoms - like worsening rash, spots on the palms, sores in the mouth.... by today Phillip had all 3 of those... talk about being in mild hysteria... I was. Thankfully our neurologist has really stepped up his game and he called me himself and asked me to text him some pictures of the rash and the sore in Phillip's mouth. Shortly after I sent them he replied (whew!). He said that right now the rash isn't REALLY concerning to him (as in - its mild and we shouldn't take extreme measures right now). But that we do need to reduce his lamictal dose and see if the rash goes away or persists. I had to decrease it by 1/2 and I have to watch it for the next 24 hours (well, from 2 o'clock today) and if its not better or has gotten worse then we have to make a trip to the neurology clinic tomorrow.
I would deeply appreciate any prayers or healing thoughts you could send our way. I am really nervous about reducing his lamictal because it seems to be the medicine thats keeping the seizures at bay - but i obviously can't risk the rash getting worse.... its one of those double edged swords... It seems like we have alot of those these days.
well I guess I'm off to spend some knee time - praying for a healthy boy and absolutely NO seizures from this change in medication. thank you for any and all prayers/thoughts you send our way.
~misty~