POST IVIG treatment - questions

General discussion regarding Kawasaki disease
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arrisynsmom
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POST IVIG treatment - questions

Post by arrisynsmom » Fri Aug 12, 2011 3:28 am

We are now 7 days post IVIG treatment. We were in the hospital until we had 48 hours of no fever. Upon returning home after discharge, my 5-month old daughter started having low-grade fevers. Her temp has ranged from a normal 98.8 to 100.2 - never getting too high. Our follow-up with our primary physician told us that this was to be expected and not to worry. We have a follow up with cardiology in 6 weeks.

She is more irritable at times, is not sleeping as well. But tonight when she woke up at 1 AM the cry was just one of discomfort and pain. Her feet and hands seem to be swollen and tight, but without redness. Her temp was again a low-grade fever 99.7, but she seems to cry when I shift her as I'm holding her and as I was trying to look at her feet and hands as if maybe my touching them was causing her pain.

I don't want to be over the top, and my doctor seems to think that she's doing great, but these things just don't seem right to me. Any thoughts or suggestions?

toffeegirl
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Re: POST IVIG treatment - questions

Post by toffeegirl » Fri Aug 12, 2011 4:46 am

Had almost exactly the same situation. Treated on Day 5 with IVIG...temp receded as did some of the initial symptoms. 48 hours later temp showing low grade fever, nothing really exceptional, just not quite right. Hands and feet very swollen and huge discomfort constantly. Couldn't move her without screams of pain and she was still lethargic and sleepy. Consultant decided she had only partially responded to the IVIG and she had a second round on Day 11.

Unfortunately she didn't respond to the 2nd round either so we ended up referred to a specialist children's hospital where they gave her IV steroids for 5 days. They tell me it is very unusual to end up there though!

The Rheumatology consultant at the children's hospital said that I did right to insist on further treatment though so thought you might want to know that :)

There is certainly no harm in you asking for a 2nd opinion regarding further IVIG treatment I think. It is really difficult to get a consistent opinion to KD I have found......every Dr I have seen has a different approach and it is very frustrating when you are caught in the middle just wanting the best for your child. In the end I printed off the AHA Scientific Statement on KD and now take that with me every time!

I was told that they would continue to treat until her temperature was back to normal for an extended period and all of her symptoms, including the joint swelling had receded. We are now in our 5th week and still attending the day ward every week.

Hope you get it sorted.

arrisynsmom
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Re: POST IVIG treatment - questions

Post by arrisynsmom » Fri Aug 12, 2011 12:38 pm

Thank you for the response. I have called our primary pediatric doctor's office and spoke with the nurse ( who I really think would like to dismiss me altogether ) but she just called back and the doctor wants to see her again, which certainly makes me feel better. Of course, her wanting to see her again causes some slight concern for me, but at least we'll have her looked at again. I wonder if the pediatric offices, as they are not the ones who do the treating and are probably not nearly as familiar with the disease as the specialists and children's hospitals that actually dealt with and treated the disease, just think I'm being an over-the-top annoying parent whose going to call at every little thing. I'm just not convinced that they really understand the disease and therefore think that my calls are just petty. I'm trying not to be that parent, but I also don't want to be the parent that sits on it until its too late and something doesn't get treated as soon as it could, or should, etc. etc. This is the part that causes me anxiety!

toffeegirl
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Re: POST IVIG treatment - questions

Post by toffeegirl » Fri Aug 12, 2011 2:44 pm

I had the same problem with the Registrar in the first hospital we were at. We saw 15 doctors in total and I would say 4 of them absolutely refused to acknowledge the KD diagnosis. Thankfully none of them were her primary carers but it was still incredibly frustrating. Once at the Children's Hospital it was a different story and everyone was on board and working together which made a huge difference.

I was really reluctant to be a pushy Mum and start quoting Google but my Mum kicked me up the backside and made me tell them my concerns. I am so glad now that I did. Here's how I see it. You have one child in the hospital who is your concern and you have an absolute right to want the best treatment for her. The doctors have a ward full of kids, all of whom they have to deal with and their priorities are split. If they get it wrong I am sure they are affected but at the end of the day, it's a bad day at work. For you and your child it is life changing. I came to the conclusion that I didn't give a monkeys what they thought about me as long as what I said and did got Emily better. At worst I would end up looking like a prize idiot (no change there really!) and at best I would save my daughter and myself a huge amount of heartache. I was given the advice to always question, challenge and suggest and never forget that ultimately doctors are human and they cannot know everything by a good friend who sadly lost her daughter to cancer. I found it really difficult to do for the same reasons as you but now I am glad that I did.

There is no doubt in my mind that my daughter would have been worse off if she had not received the extra treatment. I am in the UK and presume you are in the US so I don't know how things work there but as my daughter has already had hospital treatment we can now bypass our doctor entirely and just contact the original hospital team that treated her directly. I have the direct line number saved on my phone and have been told if I have any worries to bring her straight back in. Obviously we have the NHS system here so am not restricted by medical insurance etc.

I hope you get an answer soon. One thing I would say is print off this AHA Scientific Statement and take it with you. It states very clearly the accepted treatment protocols so even Dr's who have little experience of the disease can see what's what. I found that this carries a lot more weight than saying, " I found this out on an internet forum" :)

arrisynsmom
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Re: POST IVIG treatment - questions

Post by arrisynsmom » Sat Aug 13, 2011 9:56 pm

Again - thank you for your reply. We did go back in, and had new blood work done which indicated that yes, inflammation was still present, even though today her she is acting absolutely fine. We came back to Children's Hospital and had another echocardiogram done. She does now have two small aneurysms that she did not have week ago. We are currently sitting here while she gets her second dose of IVIG. I am SOOO glad I called.

Everything that you said is absolutely true - we just need to push forward to make sure that our children are taken care! Thank you - I truly believe that your post helped me make a decision that was absolutely in the best interests of my daughter. Obviously the aneurysms are unfortunate, but I'd rather catch then right away and know then to have anything get worse and find out down the road.

God bless you and your little one!

toffeegirl
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Re: POST IVIG treatment - questions

Post by toffeegirl » Sun Aug 14, 2011 5:13 am

I just recognised a little of myself in your words and I know that without the encouragement of my Mum I probably wouldn't have said anything and then regretted it hugely later. Glad you got the response you wanted if not the result.

Like you say though, better to know early on and deal with it quickly than find out later. We are back in tomorrow for a review but no further heart scan until Aug 24th. I am still finding it hard to accept that Emily has got away with no complications after having so much inflammation for so long but I guess I will just have to wait and see what the Echo brings.

I hope everything goes well for you both and you have a positive result after further treatment.

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