Does anyone else have a toddler or child with Primary Immunodefiency disorder or an immune system disorder??

Keeley - posted on 04/12/2009 ( 2 moms have responded )




I have a 17 month old little girl..and she has Primary Immunodefiency disorder. She's had more antibiotics and needles/IVs then i have in my wondering if anyone else has a toddler or child with this or an immune system disorder and how do you cope..when your child's always sick?...and im wondering if you have any tips or things that can help her?


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User - posted on 11/20/2011




my son has pid he has nemo one of 86 in the world he gets sick alot and has had more stuff done to him then me but we r doing ok and the only thing u can do is have ur bag ready and do what u can keeping clean just wait till she gets to school but if u have any questions or just want to talk i am here.

Kate CP - posted on 04/12/2009




I don't have a child who is immune deficient but I am. I have had chronic acute idiopathic neutropenia for over 11 years. Having gone through this myself I can only imagine how hard it is to see your baby experience this. There are a lot of treatments out there that are used in some pediatric cases, although I don't know if they are safe for infants. IVIG is one they tried for me but didn't work. GCSF is what they always give me these days when I have an infection. For me steroids did boost my ANC from 1.6 to 5.2, but I don't know if it's safe for infants. Some things my mom did with me when I was younger was to make everyone wash hands when they came in the door no matter what. Masks are good, too. Sterilize all your baby things including nail clippers, thermometers, bath tubs, shoes, combs, pacifiers, teething rings, and toys. I would stay away from anything that has a porous surface as they can be harder to disinfect. Lysol will become your best friend. Is she on a restricted diet? There are certain foods that are considered more "dangerous" to immunocompromised patients like sprouts, unpasturized cheese or milk, and rare or medium rare meats.

This may seem really obvious but another thing you have you really watch out for is nurses and doctors. I have seen nurses come into my room and wash their hands and then they touch every other surface in the room and come over to touch me but don't wash their hands again. Make sure that the nurses and doctors wash their hands RIGHT BEFORE they touch your daughter. The moment you go into any doctor's office you need to request to be put in a room immediately to wait for a doctor or nurse-NOT the waiting room. Insist doctors and nurses wear masks and changes gloves frequently at all times around your daughter. Always make sure your doctors are giving her killed virus vaccines if she receives vaccines. TALK TO YOUR HEMOTOLOGIST BEFORE YOU LET THEM GIVE HER A PORT. While it does make things easy to administer and it IS less sticks, it's also a direct line for infection into the blood stream and heart.

Like I said, I have never had a child go through this, but I can only imagine how hard this is to see. It's hard to do but keep it together whenever she's in treatment. Wait to break down until after she's gone to sleep. It's okay to cry and it's okay to need some one to lean on. Find a support group in your area or online and find that support from other mommies who have been through what you have. I wish you the best of luck and I pray for you and your girl. *hugs and love*

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