adverse reaction to IVIG?

Hi guys,

I'm new to the world of ITP and had never heard of it before Monday night (or was it Tuesday morning by that time). Our three year old daughter had serious bruising and broken blood vessels (pettichea is the proper name I think?) which led to a blood test from the regular doctor, then a call from the lab telling us to get her to the hospital ASAP. Her platelet count was 1 so she was admitted for protection and monitoring and they started to tell us about ITP. The next night we agreed to their suggested course of treatment - IVIG. She was in fine spirits and all her vitals were good during and after the transfusion so we thought that was that in terms of reactions. The next day (Wednesday) around 11 her platelet counts had responded with a jump to 37 and they told us we could go home and see the dr for a blood test and follow up in about a week but otherwise it was pretty much life as normal. In the evening she seemed very tired so we let her go to bed early since she probably just needed to catch up from two nights of disrupted hospital sleep. A few hours into the night she woke up crying, had a mild fever (100.1f) and vomited so off we went to the hospital. Her platelets continued to rise to 80 last night but one of her other counts (was it white blood cells?) were a bit high so they sent us home with the antibiotic Biaxin (sp?) in case of an infection. They sounded very surprised for her to react as much as 24 hours after the IVIG but attributed it to that.

Being so new to this I'm a little nervous that she's had this abnormal reaction and also concerned that they chose biaxin since that was the antibiotic she was on in January for a chest infection (the event and drug that the doctors said likely started this whole ITP response). My parents think I should take her to the children's hospital an hour away and don't feel she is getting enough from our local hospital. I don't want to freak out, especially because after a sleep in to catch up from our lost hours in the ER she is normal temperature and no nausea.

I'm hoping that you more experienced ITP people can help reassure me that this is normal and expectable and only disconcerting because I'm new to it, or is in fact disconcerting and the hospital isn't taking the adverse reaction seriously enough so we should seek more specialized care.

Hello and welcome to the Forum. Sorry you have to be here.

First of all, IVIG was probably a good treatment choice, but side effects do occur. It sounds like she had a common side effect and since she recovered, that is probably what it was.

Here is a list:

www.immunedisease.com/choosing-a-therapy/how-ivig-works/ivig-side-effects.html

Over the years, I have heard many stories of doctors not being familiar with side effects of treatments, so that doesn't surprise me. ITP is a disorder with which you have to advocate for yourself and become educated. Many doctors do not keep up to date with the latest information and having a doctor who does can make a huge difference. Second opinions are always a good idea, so it wouldn't hurt to take her to Children's and see what they say.

The trend with children these days is to 'watch and wait' and not treat. However, if symptoms are showing up and you are uncomfortable with that, you can always opt to treat. Most of the treatments have side effects which is why it's best to limit treatment as much as you can, but as I said, sometimes you just have to do it.

Most children have acute ITP meaning that it comes and goes within a few months. Hopefully, your daughter will have a very short case and it will go away. ITP is common after an illness and/or antibiotic.

Maybe some other Mom's will pipe in and give their experiences.

My daughter, then 12, began reacting about 24 hours after her first IVIG treatment. She developed aseptic meningitis (irritated meninges not caused by a germ). She had a severe headache and vomiting. She was readmitted for one night for observation, to be sure it wasn't a head bleed. She had been pretreated, before the infusion, with tylenol and benadryl. We learned from others here that the side effect could perhaps be kept away by treating with benadryl and tylenol not only before the treatment, but at intervals during, and for a day after, as well as keeping her well hydrated, with lots of water and frozen fruit pops during the infusion. The second time she had IVIG, we adhered to those recommendations. She began to have a mild headache as she was being discharged, and was given a shot of decadron and a five day course of decadron pills. No additional side effects arose. The third and last IVIG treatment she received, we stuck to the routine. This time, no headache occurred after, and no shot, but she took decadron pills for a couple days just to be sure. We also soon realized that there would be no school for her for the first day after an IVIG treatment. She was simply too exhausted and too zonked on the benadryl. IVIG is a good rescue treatment, but it has its downside: costs, side effects, and, like any treatment, risk. Is your daughter being followed by a hematologist? We were fortunate to have a teaching hospital nearby, with an excellent pediatric hematology/oncology team. ITP is best managed by those very familiar with its issues. I hope your daughter will be on of those kids who soon remits, and leaves ITP behind. Mine remitted, even after being labeled chronic. It is possible.
Norma

My then 17 yo daughter also had a delayed reaction to IVIG. She was given Benadryl and Tylenol prior to the start of the infusion to prevent side effects, had the infusion with no problems. About 24 hrs after the infusion she started with a severe headache which lasted about 24h. She tends to get motion sickness during car rides and that is when it started. It was so bad that she put blankets over her window shades to keep out the light because it was bothering her so much. We also discovered that she had an IgA deficiency. The next time she needed IVIG she got a special preparation due to the IgA defiecncy and we knew to manage things much better (avoid headache triggers and continue Tylenol) and she did much better.

I agree with Sandi, educate yourself on ITP. I am a pediatric nurse myself, and ITP treatment protocols have changed greatly in the last 8-10 years. I had not seen ITP in at least 10 years prior to my daughters diagnosis. (I work general peds, not hematology. In the 10+ years in my current job we have not had any cases in the medium sized practice I work at) We used to treat the count as opposed to the child/symptoms. Hopefully your daughter has acute ITP which will resolve within a short period of time. My daughter has chronic (now also severe) ITP but our doctor recommended watchful waiting even though her counts were very low and in our situation I am glad that is what we chose to do. I would recommend finding Pediatric hemalogists at a Childrens or University hospital so you benefit from the most current treatment protocols because many people are still being treated with old treatment protocols.

Hi guys,

Thank you for the replies. We were able to get our great family doctor to help us understand why she responded this way and that despite some surprise from the ER dr it was within the normal time frame. He really helped calm my nerves and give me needed information that others weren't. He also gave me the name of the children's hospital hematologist that our hospital was conferring with during her initial stay and with your suggestion I may ask to follow up there instead of with the regular local pediatrician. Particularly bc she received no Tylenol or other medication at any time before during or after her ivig treatment until the fever happened at home. We weren't given proper warning that that response could occur or what to do if it did.

I'm really hopeful that this will be a short lived journey for us based on the numbers I've seen, and encouraged by the stories I've started seeing on here about how livable it is for those who are chronic (I had started to think I was going to need to invest in bubble wrap stocks).

New question - which may sound silly but I'm so new to this I feel a little lost and ignorant of all of it - would it be okay for her to go to a chiropractor at this point? She has an appointment booked for this Tuesday and our first dr follow up won't be until later in the week so I wouldn't be able to ask. I would assume yes because it isn't big impact, but there's that other part of me that knows so little about it that wonders if maybe no...?

I would avoid a chiropractor for someone with ITP. Others on here may disagree. Chiropractic treatment can induce bleeds and bruising even in folks without ITP.
Norma

I would be very careful also. Your daughters counts were up at the last blood test but I would at least push back the appointment until you are sure her counts are staying up.

In general I am very cautious with anyone rendering care to my daughter. My Pediatric group has 4 doctors but if she needs to go in I usually ask to see the one doctor who diagnosed her and is most familiar with her case. Ironically that has not worked out and I have seen all of them within the last 4 months and maybe that is for the best. The hematology group has 4 doctors, I have met three of them. Two have been most involved in her care - I am comfortable with all of them. I have spoken to the dentist but she has not been in because when she was due for a cleaning her counts were too low, but they are informed. I am afraid medication or treatment could be recommended which might affect her ITP because they are uniformed.

I have gone to the chiropractor with low counts but I probably shouldn't have. Adjustments to the neck can rarely cause strokes and a person with lower counts could have more of a risk.

wow guys, thanks for that about the chiropractor. I'm glad I asked. We will skip this next appointment for sure and see how things go from there on out with her counts etc