my 7yr old son was diagnosed with hids and periodic fever syndrome last february. his doctor at cincinnati childrens said that since so little is known about this condition that he should be involved some sort of study or monitoring of the condition. last year was a pretty rough year for him, with misdiagnosis after misdiagnosis and the reoccurring fevers and vomiting. he did quite well over the summer, but since september he has a minor episode about every two weeks, lasting for only a day or two-until recently...the episode he is currently enduring has been going on for almost one week. today he had a break in his fever and behaved mostly normal...in a matter of moments he went from on the up to a spiking fever of 104, a swollen and flushed face, upset stomach and mild vomiting. is there anything i should be doing? he is on no treatment...he is not really being monitored except that i log what he eats and the episodes. i am concerned about the fever being so high and for so long...the past few days his fever has been 105 and only breaking to 102 for a brief amount of time. is this not hard on his body? his face gets so swollen and he looks so sick. his physician really doesnt know what to do in these incidences and he does not see the rheumatoligist but a few times a year. is there more i should and can be doing? thank you for your time.. any help and information is greatly appreciated.
thank you,
andrea
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anybody please help
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- By mommymanda
- Posted March 31, 2009 at 9:25 am
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I have a 3 1/2 year old son Payton with HIDS. And it seems to get harder all the time. We have been on every medicine possible and are now on anakinara injections, humira injections and prednisone. They seem tohelp but also affect his immune system (to the point of being neutropenic). At one point his neutrophill count was down to 300 and white cells were at 3.6. Do you see Dr Kastner at the NIH? He is a wonderful physician. We also have a wonderful dr backhere in Iowa. We see all sorts of Dr.'s. The fevers are scary and we've actually went as high as 107.4 and that was after the thermometer would finally read. We do have lots of seizures now it seems and I almost wonder if it's from all thehigh temps. He now has hypertension as well. I know how frustrating it can be. The misdiagnosis and frequent dr visits are crazy. We did it for two years. Grrrrr! The suggestion I could give is find a rheumatologist at home who is willing to follow him. We contact ours during episodes and give her updates. We are also seen by her whenever I believe he may have some sort of infection.
I know it rough and seems like there is no end in sight but we all just have tohope maybe one day there will be a great medicine out there to help all these kids fight this horrible disease. If you have any questions or need to talk please feel free. My name is Amanda and my email is paytonjschultz@hotmail.com.
Mommymanda
- By msmizz
- Posted March 31, 2009 at 9:54 am
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thank you very much for your support and encouraging words. we are on our way to cincinnati childrens today...he does not have a doctor at nih. i am hoping that we will have that taken care of today. i understand about the fevers and the horror that they cause. thank you again for your kindness...this is a very difficult disease and it is so misunderstood.
- By mommymanda
- Posted March 31, 2009 at 9:57 am
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Be strong with the Dr's. Tell them you want tobe part of the study at the NIH with Dr Dan Kastner. If you need any info or help with the the process just let me know!!
- By alyse09
- Posted September 6, 2009 at 4:36 pm
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My daughter Alyse is also in cinncinnati children's hospital.She was recently diagnosed with periodic fever syndrome and we are awaiting our trip to the NIH (National Institute Of Health)in washigton dc for further evaluation. Alyse has many of the same symptoms your son has and she is also seven,and iam also a single mother (how's that for coincidence). Alyse spends most of her time here at children's hospital with high fevers most of the time she 106 for at least a week before her fever breaks. Alyse run 2-3 week cycles which means we are here every 2-3 weeks for a flare up.We would like to hear from ya to compare notes!
- By Kare
- Posted September 7, 2009 at 1:40 pm
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I hear your concerns and I feel for you. We, like you, floundered around looking for answers. In the process we just happened to get an excellent pediatrician who is willing to take on anyone to advocate for our son. Owen is followed by a rheumatology team here in Vancouver. The difficulty with having the team approach is having the connection that you need in order to be heard effectively when things are spiralling out of control. We are fortunate to have found one person who will do that in our pediatrician. If I can give any advice at all, it would be to find one person that you trust and have a relationship with in the team of doctors and develop that so you feel support when you need it. Then have that person if he or she is able, help you deal with all the other pieces you need dealt with, or at least give you the next steps to go to. I can remember when we finally got to Children's after Owen had ten attacks in six months and the doctor we saw said, "oh yes we see children like this and they have periodic fever disorders...." Suddenly I didn't feel like a neurotic mother anymore. Then our next step was to come back to Children's during the next flare. By that time Owen had had thirteen attacks. The pediatrician took one look at this three year old child and admitted him immediately. Her words to me were you have been managing alone for far too long.... You need support to deal with whatever this is. It's amazing what you get used to and to have someone validate that what your child is going through is horrific was unbelievable. I guess the next thing I would say to do is stay the course and don't give up. There is someone out there who will see what you see and until then keep pushing. It's not easy and it is disheartening but you can do it.
Take care,
Karen
- By jacksonba
- Posted September 10, 2009 at 9:55 am
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Hi,
I have filled out forms to apply to see dr K but have not heard anything in months. How did you guys first get set up with him?
Thanks,
Angela
- By mommymanda
- Posted September 10, 2009 at 11:11 am
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Angela,
Our local dr is the one who set up our appts for us. She flew out and met with Dr. K and approached him with Payton's case. As far as I have heard tho it can take a bit to get an answer but as soon as you hear from them it won't take long to get to see him. We heard in March and went in April. Be strong!!! It stinks that our children have to wait when other kids with diseases that are common get treated right away. Payton and our family just got back from Disney World. Through Make-a-Wish Payton was granted a wish to see Mickey. In the end of all this there is light. It is dim but you can see it!!Lots of love
Amanda
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