Question on being sick with the flu & a virus

[Kristina]

Matt has been getting sick on & off since his 1 year old shot in Aug. He had a high fever shortly thereafter & once that broke a rash appeared. The rash has now got worse & 1 of the Dr at his Dr office said they were hives from food allergies. Another Dr in the same office just saw Matt because he keeps getting sick throwing up, fever and dirreaha on & off and I know that there is something wrong with him. She said its not food allergies and its the rotavirus and he should be getting better here shortly. I asked about labs and she felt it wasnt needed. I know kids get sick, but I dont believe this is normal being sick on & off every other week for this long. We've had ear infections, virus, colds, yeast infections...the list goes on and we are always told just to wait and it will go away. Bring him in if things dont clear up. When we do this it seems to be the same thing. Is there anyone out there also that has experianced the same situation with their child? We are suppose to go back to check his iron level next week, since it had dropped at his 1 year appointment, but she didnt seem to worried. Right now he isnt on any antibotics, she said to make sure he stays hydrated and feed him bannanas to help with the dirreaha. Just frusterated and worried any suggestions would be helpful. Guess Im also wondering if other parents feel the same way or if their Dr's actually be proactive and do test right away and is it normal to not always know what's going with our kids and its just a waiting game. Its so hard because our little guy is such a trooper and loves to smile & play even when he isnt feeling his best. He cant talk so that can be difficult to know what exactly is hurting. I want to do what I can, but at times I dont know what to do. Im suppose to be able to trust the Dr's and know that they are doing the right thing right? Thanks for letting me vent alittle, looking forward to hearing from others.

[Melissa Hearn]

The rotavirus vaccine appears to have been the trigger for Bryan. I'm SO glad to hear that you're going in for labs. Always trust your instincts. Good luck!

[Heather Still]

Sounds like you've gotten your fair share of advice - I strongly agree with them all!!!!! We do labs proactively whenever I think something may be out of sorts with Ryan. Good luck.

[Cheryl Biermann]

From here on out, Kristina, you need to develop a close relationship with the kidney doctor at your hospital. If it is an adult hospital, please have them call the docs on the doc to doc registry so they can learn the difference between regular HUS and atypical for one thing. Even if the best case senario is a hospital a couple of hours away, you need to have him going there, if it is a children's facility, because if his kidneys go, you'll have no option, but to go there anyway, even if you wind up doing peritoneal dialysis. It is also possible for children's hospitals to consult with local hospitals in the care of some patients, to help guide them, but usually when things go crazy they are sent to the children's hospital anyway until the situation calms down. I've also never heard of anyone doing this with aHUS. Be prepared to take him immediately into the hospital when the labs are read, because if he does have roto, chances are he's dehydrated as well as having kidney stress and having his blood work indicate the aHUS is flaring up. I am so happy he's getting labs done!

You tell your new doctors there is no such thing as an overprotective parent when it comes to aHUS! Print out the Parent's Perspective, Soliris info. and the doc to doc registry for them. They may intend to do the research but put it off til later. If Matt has been lucky and this is a case that he hasn't had a flare up, don't get comfy, everytime he has a fever, vomiting, ect. you are going to need to do lab work. These little guys can be a lot of work, but they are worth it, I applaud you for asking for advice. Lots of doctors just don't know this disease so we can't rely on them being the experts, we need to be the expers. Let us know what happens. We'll be praying for Matt and you.

[Kerri Grey]

Hi Kristina
Im so glad to hear you have contacted your nephrology team!!! Our little kiddies need to be treated with so much caution when it comes to getting sick as the slightest little thing can trigger things off. Always remember that you know your child better than anyone else and i believe that us as mothers know when things are not right. Ash started solaris earlier this year and over our winter here in Australia he was constantly sick with some virus or another and every time Ash's docs would do bloods and NPA(nasal aspiration) to check for viruses and he was often started on IV antibiotics as a precaution until we knew what the problem was. Please dont ever feel like your worries are not valid. Also definitely wait til you get bloods done before you start loading him up with bananas. I hope Matt is feeling better really soon. Our thoughts and prayers are with you.

[Kristina]

I called the Childrens Hospital and just learned that the kidney Dr he saw earlier this year has left. The nurse called me back and the new Dr is going to order labs to be done here at our local hospital and made an appointment there (a couple of hours away) for next week. I want to Thank everyone for posting comments, it reasured myself that I am not going crazy for being so worried. I remember the Dr mentioning something about bananas & the potassium before, but all that was a daze because it was when he was in ICU and I hadnt slept for days. I'll keep everyone updated.

[Jodi Kayler]

Hi Kristina, I read your post and immediately became concerned. Rotavirus is a HUGE trigger for and aHUS relapse. One of my son's worst relapses was triggered by this bug. Also, the extreme diarrea caused by rotavirus is a big stress on normal kidneys--let alone kidneys that have been stressed in the past. I'm baffled why your doctors are not running labs consistently. Also, the advice to give him bananas without looking at labs first? Bananas have a lot of potassium and if Matt's kidneys are stressed at the moment and his electrolytes are out of wack, that could be the worst thing to do.

I applaud you for being concerned and raising questions. If I were you, I would demand labs to be run today--and consistently until you are positive he is back at 100%. Unfortunately, this disease is so rare that doctors can forget or just not have the experience to know how carefully these kids have to be managed.

Before Coen was on Soliris, we constantly battled relapses. Our doctors were VERY proactive. We had labs run at minimum every 2-weeks. If there was ever a sign of a virus, labs would increase to weekly or even more often if needed. Also, if there was any issues with diarrhea or vomiting, Coen would instantly be given IV fluids to reduce stress on his kidneys.

I'm just saying your fears are valid and it is OK to push for a more aggressive approach. You know your kids better than any medical professional. Even if labs come back normal, don't feel bad. It is always better to play it safe.

[Cheryl Biermann]

Second thought, but with a rash, even if it is not where it is supposed to be, have them do a strep test. Nathan had strep and his rash would move around from his belly to his chest to his bottom, but it was my sign to have a strep done. He had strep often when he was 3through5 yrs.

[Cheryl Biermann]

Get his labs! If it is rotovirus, well this caused nathan to have LONG stays in the hospital. Do not go to the regular pediatrician when Matt is sick-call your nephrology team and head there for labs. Our pediatricians told us, okay, we'll see Nathan now when it's time for his yearly check up-unless things are too crazy with his illness to come, but anytime he's sick you need to be calling the nephrologists.

I really, really hope he's weathered all of this without problems. Good luck and get on the phone!