Looking for others

We are looking for other families dealing with HIDS. We have an almost 3 yr old son who was diagnosed at about 19 months. We have been going to the NIH since April 2007 about every 3 months. We have met many wonderful families during our trips and love the community at the NIH. We would love to hear from another family who may be going thru some of the same issues we are concerning HIDS. Right now our son is doing ok, but that can change in a heart beat.

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Hi there.
My son does not have HIDS, instead he has TRAPS. HIDS was one of the things we looked at in our journey to find a diagnosis for him. He was almost four when he was diagnosed by our rheumatology team here in Vancouver. Although, I guess officially he was diagnosed by some genetics lab in Maryland. When he was first diagnosed we looked up everything we could about his disorder but it is what it is now. He is on Etanercept, or Enbrel which helps him a great deal. His temperature doesn't get to the 106 range as it did prior to Enbrel. He recovers better in between. He can walk further without having stumbling and weakness in his legs. He still struggles though. His attacks have gotten further apart but now with them being further apart they are harder to manage at home. Dehydration has sent us in to Children's twice this year. Whereas, when we first started the Enbrel we managed his attacks at home without any admissions for a year and a half. He just finished Kindergarten which was a big worry for me last September. His attacks are "triggered" by virus, flu, and stress. Kindergarten is a breeding ground for these things. He has an amazing Pediatrician who is available to us at a moment's notice. Our Rheum. team is amazing as well. His teacher really went with the flow and whenever he said my legs hurt or I have a headache she managed his symptoms in the class without any disruption. Having a great team makes a huge difference.
Still, when in the trenches of an attack life is never easy. My husband turns into a turtle, and goes into his shell. My oldest son tells me he feels left out and he would like attention too (while his brother is throwing his guts out of his body or flushing them down the toilet I might add). My little guy who just turned three seems to be the only one who just rolls with the fact that I'm here and then I'm gone... I struggle with trying to be "there" for everyone but mostly the sleep deprivation makes me just looped and then I can't even figure out how many ccs I need to draw up to make up a super dose of Tylenol. All in all, we all have an attack and then regroup at the end of Owen's five days. Nasty little cycle these fever attacks are I've got to say. It's kind of crazy but each time he has an attack I have to convince myself that yes he is having another attack and it's not just the run of the mill bugs that are out there. I always think maybe it's not and we'll stay home and he won't get as sick, but day three comes and everything falls apart at the seams. The best thing to do is hang on to whatever you can and get to the end.
Has your little guy always had these attacks since he was born? I know what the four to six week cycle looks like. We did those kinds of cycles from the time my son was two and a half until he was just shy of four. Except as they got more intense he was lucky to recoup in between cycles. His little body was so achy he would drop to the ground as soon as he would get out of bed and he would crawl to greet me in the morning, needing Tylenol to just start his day. We've come a long way since then but we sure had to struggle through those days. At that time, I had a newborn to tend to as well. My Owen got really sick just two months after my third son was born. I don't really remember my youngest's first year of life. I have to look at pictures for help in the recall department. I never got up for him in the middle of the night because whenever Owen wasn't sick I was catching up on sleep so I just simply didn't hear him. Lucky for all of us he was one of those kids who could just roll with whatever he was given. All in all, after trying so many different meds., getting a diagnosis, getting on the right meds. has been a blessing. Anything is better than those days.
All that being said, I have always taught my son to advocate for himself and that has served him incredibly well. He would tell the rheum. docs. ummm... you know that colchicine stuff? That helps my legs, but that prednisone stuff it doesn't. Why am I on it? He was three at the time and he still continues to tell his story like it is. Him being able to advocate for himself gives him some control in a situation when he doesn't always have it. He can tell people when he goes for bloodwork. I like to hold a purple vial, and could you please pull my shirt down before you give my arm a squeeze?
I hope this helps some. I know some of the response I got on here helped me immeasurably when times were really ugly. Take care.
Karen

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HI THERE! i HAVE A 13 YEAR OLD SON WHO WAS DIAGNOSED WITH PERIODIC FEVER SYNDROME 6 YEARS AGO. WE ARE LEAVING FOR THE NIH TOMORROW FOR A SHORT 3 DAY STAY. WE GO EVERY 3 MONTHS. I KNOW BEING A MOTHER OF A PFS CHILD IS LIKE. TEMPS OF 107. EVERY MONTH. AND NOTHING WORKS. HE HAS DEVELOPED STAGE 2 KIDNEY DISSEASE AND HEART DISEASE. I HAD A 1 1/2 YEAR OLD NEICE DIE WITH WHAT MY SON HAS. MY SON HAS BEEN ON INJECTIONS TWICE A WEEK TO TONS OF MEDICINE. HE IS NOW DOING BETTER BUT IS ON 8 DIFFERENT MEDS A DAY. AS THE PFS SEEMS TO GET BETTER AT TIMES, OTHER NEW THINGS POP UP. EXAMPLE; KIDNEY AND HEART DISEASE AND SEIZURES.

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mY SON WAS ON eMBREL FOR A YEAR AND A HALF. iT HELPED HIM LIKE A MIRACLE. BUT HE DEVELOPED KIDNEY DISEASE TO A STAGE 2 POINT. PLEASE MAKE SURE YOU HAVE YOUR CHILDS KIDNEYS TESTED REGULARY. MY SON IS NOW ON SO MANY MEDS FOR THAT, THAT DOCTORS ARE NO LONGER WORRIED ABOUT THE PFS. THEY WANT TO TAKE CARE OF THE KIDNEYS FIRST. SO WITH HIM BEING ON NO MEDS FOR PFS HE GETS HIS FEVERS MONTHLY AGAIN. HE GOES TO 7TH GRADE THIS YEAR AND HE KNOWS THAT THE FEVERS WILL BE TAKING OVER HIS HIGH SCHOOL YEAR THIS YEAR.

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We have been doing the in and out of hospital thing for 2 1/2 years and our daughter Claire still doesn't have a diagnosis. Our rheumatologist who I LOVE is leaning towards HIDS or FMF but the results of our genetic testing isn't back yet. Until very recently there hasn't been a distinct pattern in her fevers but she has had fevers on and off since she was about 2 1/2 months old. It has been VERY difficult. I have an older son Owen who has been amazing dealing with his sisters illness but I feel very guilty with all the time we have to spend tending to her.
I'm curious to know if abdominal pain is a prime factor in HIDS. Claire has only just started to be able to verbalize her complaints (she'll be 3 in January) so I don't know if her stomach hurt prior. I know she would refuse to eat when she had her fevers.
She is on colchicine right now in the event she has FMF. Does colchicine work with HIDS too? What are the treatments for HIDS? I'm glad I found this forum!

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My son has been diagnosed with HIDS for 3 years now and has been having symptoms all his life, yes the abdominal pain is one of the many symptoms of HIDS. My son's fevers seem to be much better, but he still has problems of feeling like he is going to pass out and weakness once a month or so, in the past 2 years his symptoms are better and he is not on any meds, we don't have a doctor in West Virginia that doctor's for what he has, so we don't travel to get opinions since we did that 3 or 4 times and they say no meds or cure, he does well without meds, but I am sure every case is different. I hope your daughter does better when she starts to get a little older, we went through alot when my son was little.

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Hi! My 4 year old daughter has HIDS. She was diagnosed through genetic testing. Since the age of 4 months, she has never gone more than a month without a fever episode. Her episodes can be anywhere from four weeks apart to just a few days. Sept. '07 she went into kidney failure and was also diagnosed with iga nephropathy. We have tried prednisone, kineret, enbrel, colchicine and zocor. Nothing has helped. It is very stressful for the whole family. We never know when she might be hospitalized especially because the HIDS makes her kidney disease worse. She has extreme vomiting, joint pain, rashes, and her throat always hurts right before the fever hits.

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Hi, my little girl has that is now 30 months has been dignosed with HIDS few months ago. i am from Greece and as there is no an expertise Medical Centre here, its very difficult for us to treat the situation. You mentioned that you are going to NIH , are you doing some extra tests, are your baby under medicines.A doctor here suggest us to give her Enbrel( Etatencerph- injections), another doctor from the Public Hospital told us that there is no MED. It's very difficult because this disorder is so rare and the most doctors they know nothing about it.
It would be very helpful if you could give me some information about NIH, a contact or a Link that are relative to HIDS

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Hello, my name is Deb and my 6 yr old son, has HIDS. My question to you is, with the seizures you speak of, is that a direct link to HIDS? If you dont mind, are the seizures you've seen a physical kind, or more a "mental" kind. Let me explain....Jack, he has these spells where he can hear, and see but he cannot move a muscle. Its like he is a statue. It last a few minutes then he is able to move again. My Dr. doesn't think he is having a seizure, pursey, but what else could it be? I know you know the weird questions this disease can make you ask, or at least I hope you do. Thanks for your input. Deb

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I am not an expert on HIDS by any means, but I am on TRAPS and seizures as well. Seizures can take many forms, I have seen children do just what your child describes and they do have a seizure disorder. I would definitely have your son checked for seizures. Do you have a pediatritian following him? He should at least go for an EEG to rule out seizure activity. If your doctor won't request an EEG find one who will, or else get a referral to a neurologist. I hope this helps. I have learned that a Mom's intuition is usually not wrong. Trust yourself and make sure that you persist if you need to.
Take care Deb.
Karen

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