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Fever, stiff neck, head pain... after IVIG


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A two day IVIG ended last night. Since 4:30am my daughter has had head pain, stiff neck, tired, and upset stomach. Tonight she also has a fever of 101. The IVIG instructions say to call if, among other things, she has a stiff neck or fever. We left a message for the doctor. She is alert sitting in the bathroom in case she vomits. Since we couldn't get a hold of the doctor, we gave Tylenol, Benadryl, and a pedialyte popcycle. I think the fever is coming down. Should we be concerned?

 

I say head pain not headache only because my daughter says it is not the same as her usual migraine headache. This one feels like pressure around her scalp and on top of her head.

Not an expert here, but have heard that sometimes people get asceptic meningitis post IVIG- especially if they did not have sufficient hydration. I'd get it checked out asap- maybe its not serious, but I'd rather err on the side of caution (said the mother who didn't take one of her kids to the doctor to get her arm checked for 3 days after injury- only to find out it was broken!).

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A two day IVIG ended last night. Since 4:30am my daughter has had head pain, stiff neck, tired, and upset stomach. Tonight she also has a fever of 101. The IVIG instructions say to call if, among other things, she has a stiff neck or fever. We left a message for the doctor. She is alert sitting in the bathroom in case she vomits. Since we couldn't get a hold of the doctor, we gave Tylenol, Benadryl, and a pedialyte popcycle. I think the fever is coming down. Should we be concerned?

 

I say head pain not headache only because my daughter says it is not the same as her usual migraine headache. This one feels like pressure around her scalp and on top of her head.

 

One hour later: The fever is not reducing and she refuses to take motrin.

 

The fever definitely happens. Our dd9 had the fever after both IVIGs. Headache too. Advil was very effective for our daughter with Tylenol being less so.

 

In our case, fever lasted 1 day, headache lasted 2 days, symptoms worsened for first 2 weeks post IVIG then rapid fall off.

 

Buster

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I think you certainly shouldn't ignore or dismiss. I'd follow up with the doctor as soon as you can reach him/her. But if it eases your mind at all, my DS7 had a 101 fever all of day 2 of IVIG. He was nauseous, lethargic, and slept thru most of the afternoon. They gave benedryl to no avail. When they finally gave him mortin at 4pm, 20 min later he was awake, talkative and the fever was gone. I don't know why, but motrin works for him in surprising ways.

 

Do whatever you can to get your daughter to take motrin and give it an hour. Her response may tell you if this is a side effect or something else.

 

My thoughts are with you!

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This was totally normal for us. Fever, headache, throwing-up. My son was in bed all day after day 2 of his ivig. He has had three ivig's and he was the same way after all of them. It is an immune system response. He felt like he had the flu. All better within 24 hours.

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Not to be alarmist, but my son had his adenoids out last year and within 2 days had a stiff neck and fever. We weren't sure what to make of it, but finally called the ENT on call and were told to take him directly to the emergency room. After xrays and being rushed downtown to the main hospital, he was admitted with a retropheryngeal abscess bacterial infection and was on IV antibiotics for 4 days. they told me it was because he must have had a unknown bacterial infection when he had the surgery (strep?). If we hadn't taken him in when we did, the infection would have created deep abscesses in his neck that would have required surgery, and if you don't catch it at that point, it can go deeper and create life-threatening sepsis. I am sure it is different with IVIG, since it is not really a surgery per se (right?) but I don't think you want to wait around with a stiff neck. They told us that was a danger sign of infection.

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Not to be alarmist, but my son had his adenoids out last year and within 2 days had a stiff neck and fever. We weren't sure what to make of it, but finally called the ENT on call and were told to take him directly to the emergency room. After xrays and being rushed downtown to the main hospital, he was admitted with a retropheryngeal abscess bacterial infection and was on IV antibiotics for 4 days. they told me it was because he must have had a unknown bacterial infection when he had the surgery (strep?). If we hadn't taken him in when we did, the infection would have created deep abscesses in his neck that would have required surgery, and if you don't catch it at that point, it can go deeper and create life-threatening sepsis. I am sure it is different with IVIG, since it is not really a surgery per se (right?) but I don't think you want to wait around with a stiff neck. They told us that was a danger sign of infection.

 

o my Lord....i just want to cry...how many times ds has complained of a sore neck(off and on for as long as i can remember...i always asked if he felt ok other wise and he would say yes..

what did i do????? we've tried neck pillows...chiropractors...as some of the times he wasn't in an episode....

CR#P!!!!

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If it were me - I would get it checked out ASAP. The stiff neck thing combined with the head pressure are a little concerning (especially since your child is describing it as not a typical headache - and your child is generally used to severe head pain due to migraines).

 

It could just be the "typical" IVIG reaction but better safe than sorry.

 

How stiff is her neck? Can she rotate her head in all directions or is it too stiff for that? The fact that she is alert is a good sign but I would still be inclined to check it out.

 

Hope it is nothing serious and she feels better soon.

 

PKM

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Not to be alarmist, but my son had his adenoids out last year and within 2 days had a stiff neck and fever. We weren't sure what to make of it, but finally called the ENT on call and were told to take him directly to the emergency room. After xrays and being rushed downtown to the main hospital, he was admitted with a retropheryngeal abscess bacterial infection and was on IV antibiotics for 4 days. they told me it was because he must have had a unknown bacterial infection when he had the surgery (strep?). If we hadn't taken him in when we did, the infection would have created deep abscesses in his neck that would have required surgery, and if you don't catch it at that point, it can go deeper and create life-threatening sepsis. I am sure it is different with IVIG, since it is not really a surgery per se (right?) but I don't think you want to wait around with a stiff neck. They told us that was a danger sign of infection.

 

o my Lord....i just want to cry...how many times ds has complained of a sore neck(off and on for as long as i can remember...i always asked if he felt ok other wise and he would say yes..

what did i do????? we've tried neck pillows...chiropractors...as some of the times he wasn't in an episode....

CR#P!!!!

 

 

Fixit-

I didn't mean to upset you! My understanding of the retropheryngeal abscess infection was it had a very quick ramp up time--I think more like days. It usually happens with a complication ENT surgery, or some sort of injury to the head/neck area, which is why I thought the IVIG might be a different deal, but given the scariness of stiff neck, I wanted to mention our experience. If your ds has had a sore neck off and on for an extended period of time, I don't think it would be the same situation as we had--but probably worth checking out. Ours happened 2 days after surgery, and got bad very quickly. I think he must have had undiagnosed strep before his surgery. Anyway, I think it was the combination of recent surgery plus the stiff neck that set off alarm bells.

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Maybe we were just lucky, but the combination of drugs that Dr. B has prescribed for my dd works wonderfully and she had no side effects from the IVIG either time she had it. they give her benedryl 50mg and 400mg Motrin(dd weighs 110lbs) before IVIG, 6 hours later, and then six hour later. (repeat the second day) They also give her 40mg of Prednisone once per day during the procedure and more to use as needed the few days afterwards. They also give her a bag of iv fluids while she is infused. It has been the perfect combination for her and others. He said it hasn't worked for everyone but for many it has. Best of luck. (also, she drinks a lot the days leading up to ivig and the days of)

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