Moses had his first IVIG infusion on November 23, 2016. My plan is to keep track of all of his IVIG experiences in this post for easy tracking.
This last week was a crazy one for us. We moved homes for the second time in three months on Nov 19th, and then four days later, Moses had his first IVIG infusion. I was grief-stricken leading up to his first infusion for reasons that I detailed in a previous blog post. I’ve also spent a lot of time reading up on IVIG infusions, including potential side effects, etc. so I was worried about the procedure. I was also concerned about making the procedure as easy (and painfree) as possible for Moses.
His nurse and others with experience with receiving IVIG infusions recommended keeping Moses hydrated so that his veins would be full, and also keeping him warm. Some individuals take pre-meds to help them tolerate the infusions better (like Benadryl, Tylenol, gravol or other anti-nausea medications). We didn’t bother with any pre-meds since we wanted to see how he if he needed it. We had Emla cream handy, but his nurse told us that they preferred not to use it because the Emla cream sometimes makes it harder to insert the IV because it causes veins to hide.
For the two weeks before his infusion, we kept reminding him to drink more water than he typically drinks. We also made sure that he was warm, and wore mitts to his appointment, and when he got to the hospital, they wrapped his arms with a warm blanket. Before he left for his appointment, I put Balance essential oil blend on his hands because it helps oxygenate blood and I know of some RNs that use Balance to help veins to pop out before IV insertion or before patients give blood. Some people use clove essential oil as a natural analgesic (I use it before I get any blood work), but clove is quite stinky and technically the hospital is a scent-free zone, so I didn’t use it. Thankfully, the nurse had no problem at all finding a good IV insertion location and they got the IV in on the first try. Moses was a trooper and didn’t even use any Emla cream. Whew! So thankful and relieved that it wasn’t a traumatic experience for him (as it has been in the past).
They used IGIVnex (10% Gamunex 20 g; by the way, AJ’s blood type is B+). The immunoglobulins came in a clear bottle and was clear in colour. They infused it over 6 hours because the longer the infusion takes, the lower the probability of side effects like nausea or headaches. Moses tolerated it really well. He didn’t really have any side effects, except for some slight nausea later that evening, and I rubbed a digestion essential oil blend on his belly, which always helps him when he has any belly upsets. I’m so happy and relieved that it went well. Next time, they will try infusing it over 4 hours. Hopefully, it will go just as well. The plan now is for Moses to receive IVIG infusions every 4 weeks, indefinitely. (DH and I will assess how Moses does and see, but the immunologist’s plan is that this is part of his course of treatment now).
Even though the infusion was 6 hours, Moses was at the hospital for an additional couple of hours because he saw the surgery team and they were planning on draining one or two abscesses that he had that were ready for drainage. They even had him fast for 6 hours, in case they were going to do a procedure, but then after all of that waiting a surgical emergency came up and they couldn’t fit him in. It’s now four days later, and those abscesses haven’t resolved themselves, so I will need to call the surgeon tomorrow to see if she can fit him in sometime this week. Goodness – we so want to get off of this abscess train. It’s hard on the family, and of course, especially hard for Moses. The hope is that the IVIG will decrease the frequencies of abscesses. May it be so.
Moses says that he hasn’t felt any different since the IVIG infusion, but he felt well enough to play hockey the day after his infusion, so that was a good sign. He said that he felt more tired while skating, but he still scored a couple of goals during the practice game. And, today, we did a 4 km hike at Lake Louise and he did just fine. So proud of my boy and thankful that his first IVIG experience was a positive one overall. May they all be so.
December 21, 2016 (2nd infusion)
On Dec 21st, Moses had his second IVIG infusion. He had a difficult IV start, but they were able to get the IV started at a second site. Because they started the IV later, they sped up his infusion (~3 hours; the first infusion was 6 hours), which was probably too fast because later that evening, he vomited twice and had a nasty headache. Poor boy.
They thought he had a difficult IV start because he wasn’t drinking enough. Our son generally doesn’t drink enough and no matter how much we encourage him to drink more, he doesn’t remember to drink unless we put a glass in front of him to drink. ugh.
He slept in the next morning and I kept him home with me the next day
A couple of days later, he developed a double ear infection and a viral chest infection (infections that he generally doesn’t get). Read more here.
January 20, 2017 (3rd infusion)
On Friday, January 20th, AJ was scheduled for his third IVIG infusion. They were able to get the IV inserted on the first try and AJ was a real trooper during it (closing his eyes and breathing through it), with the support of a Child Life Specialist. But then he freaked out when he realized that the nurse was going to flush some saline solution through the IV because the flushing caused him pain when they tried to flush on the Wed and Thursday of this week. And he completely lost it (screaming and kicking and thrashing about), and they lost the IV site. They called the expert IV specialists, but he was so anxious and in such a state that they couldn’t even try to insert the IV. One of the nurses remarked that it would take 3 grown men to hold AJ down for the IV insertion and they couldn’t do it. So then his immunologist was called in for a consultation and he explained to AJ why he thought the IVIG would help him (since he’s seen that it’s helped others with his diagnosis), but it might take 6 months for his body to get used to the infusions and for us to see a difference.
AJ agreed to the IV if they sedated him for it, so they planned to give him Madazalam (conscious sedation), but it took a lot of time for pharmacy to prepare the Madazalam, and we waited, waited and waited. We arrived at the hospital at 10 am to allow more time for the infusion (since last time, AJ had a bad reaction to the IVIG because of the fast infusion). And, unfortunately because of AJ’s anxiety, they couldn’t even get the IV in to start the infusion until 2:30 pm, and they did a 4 hour infusion. We were at the hospital for 10 hours for a 4 hour infusion.
A couple of days later, he was sick (nauseous, achy, headachy, low energy). hmmm….
February 6, 2017 (4th IVIG)
On Feb 6th, AJ had two more abscesses drained (right armpit and another area). As he always does, he came out from the anaesthesia with “emergence delirium”. Screaming, kicking, angry and itchy. Because he had an IV already inserted from the surgery, his immunologist decided that it would be a good time for him to receive IVIG (10 days early; since last time was such an ordeal), but AJ was so mad because he just wanted to go home and he was so sick of being in the hospital. Even though he already had the IV inserted, he was upset about the flushing, so they still had to give him Midazolam in order to calm him down enough for them to get the IVIG infusion started. It took 4 nurses (3 to hold him down and 1 to squirt the 2 syringes of Midazolam into his mouth). He screamed things like, “I hate my life and everything in my life!” [Things that parents wish they never have to hear their children say in their lifetime]. They infused it over 4 hours from 4 pm to 8 pm, so it was a long day, since we got to the hospital at 9:45 am, and didn’t leave the hospital until 9 pm at night.
February 22, 2017
I have noticed that AJ’s skin has been healthier (less rashes / less broken out) in the last month. DH is convinced it’s the IVIG infusions. The infusions haven’t yet decreased the frequency of abscesses, but this is a good first step.
March 1, 2017 (5th IVIG)
On March 1, 2017, AJ had his 5th IVIG infusion, 3.5 weeks after his last infusion (since he already had an IV inserted while under general anaesthesia because he had 2 more abscess drained), and he didn’t need additional sedation in order to receive the infusion. Amazing progress! The infusion was given over a 3 hour period, and AJ didn’t have any negative reactions to the infusion. He stayed home from school the next day to rest.
March 29, 2017 (6th IVIG)
On March 29, 2017, a Child Life Specialist used a hypnotherapy technique with him (Magic Glove technique) to help with his pain / fear management related to the IV insertion and also the flushing. It seemed to be effective (it decreased the sensation in one arm to zero and there was a 50% decrease in sensation in the other arm), but he still wanted Midazolam for the IV insertion. He didn’t even want them to try to insert the IV without the Midazolam, and since his medical team uses a patient-centred approach, they listened to his request and ordered Midazolam for him. Because it took awhile to order the medication and then the IVIG product, even though we arrived at the hospital at 9 am, the infusion wasn’t started until noon. It was a long day and we were there until 4 pm, despite the fact that it was a short (3 hour) infusion.
Nonetheless, it was a relatively stress-free day. AJ tolerated the infusion fine.
We are quite delighted that it feels like AJ’s new treatment (monthly IVIG infusions and daily Septra) has decreased the occurrence of abscesses. Typically, AJ has an abscess develop every week, and it’s currently 4 weeks since his last abscess drainage, and the one abscess that developed drained on its own. We are so thankful!!! May these treatments continue to be effective.