Hereditary Spherocytosis Questions

• By ec1
• Posted November 13, 2009 at 9:20 am
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My daughter (6) has HS, and got parvovirus last year. Of course we didn't know she had parvovirus, because the red cheeks did not show up until after the aplastic crisis started.
Her aplastic crisis showed up pretty suddenly, and looked like a stroke. She could not speak sensibly. She could not stick her tongue out. It was very scary.
At the ER, she was laid flat and given oxygen. This helped significantly.
Her hemoglobin floated around 60 for a few days until her transfusion, after which she was just fine.
If your child/grandchild with HS exhibits stroke-like symptoms, get him/her to lie down flat and get him /her to and ER.

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• By Neeners
• Posted August 27, 2009 at 4:53 pm
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All I would add is this: Your grandchild's parents need to be firm and insistant with doctors. If they have to search forever until they find a Pediatrician who will listen, be ok with frequent visits, and actually study up on HS to understand it - then so be it. It'll be worth it. This condition is rare (the last stats I saw for the U.S said 1 in 5000 ppl have it), often goes undetected and misdiagnosed and is WILDLY misunderstood. So many of the symptoms can mimic other normal problems, and even when doctors are told that the child has the disorder, they can STILL be reluctant to listen and treat appropriately. The parents need to learn to stick to their guns with doctors. At some point, your grandchild is likely going to need to have her spleen, and maybe her gall bladder taken out as well. Before that happens, - without a good doc, who understands the disorder, - there COULD be many frustrating E.R. visits where no one seems to be listening.

Having her hooked up with a doc who accepts the diagnosis and is willing to study and understand H.S. will save your family a lot of struggle in the future!!

Blessings to you! She will be just fine! Everyone I know who has this disorder (6 ppl) have all had their spleens and gall bladders taken out, and all lead perfectly normal healthy happy lives. They don't get sick more than anyone else either, by the way. But I know there are different types of HS., so keep doing research!

Also - you are an awesome Grammy for being proactive about learning all you can about this disorder for your grandbaby and her parents. God bless you!

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• By Kastce
• Posted July 7, 2009 at 3:45 pm
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If she has her spleen out, you have to be more vigilant with illnesses (yes, even the common cold) than right now. It's so hard to tell with little ones whether or not a fever or runny nose warrants a doctor's visit, but I decided long along, Personally, I'd rather bother the doctor than be up worrying all night.

Also, as you get to know your granddaughter and how her body reacts you'll have a better grasp on when she really needs some type of intervention. Make sure she gets her vaccinations, especially the flu and pneumonia shots. If she gets a fever, is lethargic or jaundicy call the doctor/hematologist. I

'm basically repeating what the previous posts say, but really the trouble will come if she has to have her spleen taken out. Since it's part of the immune system, she'll have to be extra cautious about avoiding people with certain illnesses (RSV, pneumonia, mono, etc) and making sure she continues to get her flu/pneumonia shots. I'm 30 years old now and have been leaving without my spleen since I was 9. Aside from catching illnesses easier and holding on to them longer, I've lived a very normal life. I participated in sports throughout high school, went away to college, and was a high school teacher until I became a stay at home mom. I'd say over the past three years or so, I've actually been less sick than in years past. So, you definitely learn what you're body is able to do and when you really do need to seek medical attention (antibiotics). Feel free to contact me anytime: k.stc.earle@comcast.net

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• By Blblues_1
• Posted May 30, 2009 at 11:07 am
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I completly agree. I have had a serve case for 31 years now. I have ended up with crazy diseases and illnesses because of my compromised immune system. My 3 babies have it also. My children are 2, 1, and 5 months. 2 are more serve than the third. You will have to trust you instincts!!! I have listened to my husband twice when he says oh its a cold. One had RSV and and had pnaomonia (sp?) You will also be able to see it all over when they are just a little sick and really sick! My 2 yr old gets MEAN when he gets sick!!! It is important to have great doctors who really listen to what you say. I guess the best advise is the more germs she is use to the better her immune system will get eventally. treat my boys and myself as "normal". The winter viruses that everyone gets are the hardest on us, that is when you need to be more careful with her! These are the viruses that they are really talking about. If a fever comes on she needs to get to the dr. right away, unless it is just teething!!!

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• By cemebel7
• Posted May 28, 2009 at 5:31 pm
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As for viruses, some specific viruses are more of a concern then others. At her age I would be careful of viruses anyways. Basically a virus would slow or stop her bone marrow from producing the red blood cells (aplastic crisis) this coupled with the spleens distruction of the abnormal shaped cells will lower her counts low enough to possibly need a transfusion. My son is 10 and has never needed a transfusion. They almost did one as a newborn because of his jaundice which we now know was due to his HS. My 2 yr old hasn't either. At first I was crazy with the handwashing thing but now I am back to normal.
things to look for would be the typical anemia symptoms (pale, lethargic, etc.) and also a jaundice or yellowing of the skin and/eyes. One thing that clues me in to my 2 year counts and I can look back on and remember with my 10 year old is the urine. Dark strong urine. The bilirubin will build up in the urine if the spleen is destroying cells faster than normal. Fever speeds up this process. Unecessary exposure should be avoided if it can be helped. Base outings on her age. By unecessary I mean going to the neighbors just because while they have the stomach flu. You can't avoid all germs and she needs some to stregnthen her immune system. Just don't close her off or expose her to everything on purpose. The Human Parvovirus is a nasty one with this condition. Some stomach bugs tend to lower counts faster in my daughter. Each virus will react differently with her body. My advice would be to just watch her for symptoms of a lower count if she gets sick. My hubby is 35, had his spleen out at 4. We didn't know this was why until my 2 year old was diagnosed. Then we found out my 10 year also has it. Knowing this has helped me to relax my germophobe issues. my hubby is fine. My son hasn't had issues that we know of. And my 2 year olds counts are better and her spleen is not enlarged anymore. Now I need to let her be a kid. That's hard to do. :-)

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