Any other neutropenic LO's?

kristalovesjared · January 2013

Not sure if this is the right board to post on, but do any of your LO's have neutropenia? My DD was just diagnosed a month ago and I'd love to chat with anyone who is also dealing with this. Thanks!

realisticdreams · January 2013

kristalovesjared:
Not sure if this is the right board to post on, but do any of your LO's have neutropenia? My DD was just diagnosed a month ago and I'd love to chat with anyone who is also dealing with this. Thanks!

How old is your LO?
DD2 had this when she was younger, it was one of our first abnormal results with labwork (< 1 month of age) She also had some atypical cells and further testing showed she had no/virtually none of her IGG/IGA levels. She was eventually diagnosed with hypogammaglobulinemia. She was in the hospital a lot her first 6 months of life (she was born 5.5 weeks early) because she would spike insanely high fevers, she also had some gross motor delays as well as feeding issues.

kristalovesjared · January 2013

realisticdreams:
kristalovesjared:
Not sure if this is the right board to post on, but do any of your LO's have neutropenia? My DD was just diagnosed a month ago and I'd love to chat with anyone who is also dealing with this. Thanks!

How old is your LO?
DD2 had this when she was younger, it was one of our first abnormal results with labwork (< 1 month of age) She also had some atypical cells and further testing showed she had no/virtually none of her IGG/IGA levels. She was eventually diagnosed with hypogammaglobulinemia. She was in the hospital a lot her first 6 months of life (she was born 5.5 weeks early) because she would spike insanely high fevers, she also had some gross motor delays as well as feeding issues.

She is 14 months now and doesn't seem to have any delays. She didn't seem to have any signs of it until she was 8 months and got 2 infected fingers. Then when she was 11 months an infected lymph node, which is when we started seeing a hematologist. Right now we're just in the beginning stages, not sure which type she has yet.

realisticdreams · January 2013

kristalovesjared:
realisticdreams:
kristalovesjared:
Not sure if this is the right board to post on, but do any of your LO's have neutropenia? My DD was just diagnosed a month ago and I'd love to chat with anyone who is also dealing with this. Thanks!

How old is your LO?
DD2 had this when she was younger, it was one of our first abnormal results with labwork (< 1 month of age) She also had some atypical cells and further testing showed she had no/virtually none of her IGG/IGA levels. She was eventually diagnosed with hypogammaglobulinemia. She was in the hospital a lot her first 6 months of life (she was born 5.5 weeks early) because she would spike insanely high fevers, she also had some gross motor delays as well as feeding issues.

She is 14 months now and doesn't seem to have any delays. She didn't seem to have any signs of it until she was 8 months and got 2 infected fingers. Then when she was 11 months an infected lymph node, which is when we started seeing a hematologist. Right now we're just in the beginning stages, not sure which type she has yet.

We saw Hem/Onc, as well. To put it into perspective, by the time she was 5 months old, according to doctors she had had over 25 "infections" She also had MRSA every time we would turn around. Have you seen an immunologist?

ToastieSimons · January 2013

DS1 would spike fevers of 106 EVERY 2 weeks like clockwork. We started going in for rheumatology and came out with a diagnosis of PFAPA. Slowly the fevers went away, however in June when DS2 was born he had 4 fevers for about 2-3 days each. We went to a new pedi and each time had a different "diagnosis' Hand foot and mouth (despite never seeing a sore), cold, ear infection, etc. We finally got in our with our regular pedi and she ordered a CBC and DS1 is slightly neutropenic. His neutrophyls were 1000 and then we found out his pneumococcal antibodies were very low too. His IgG, IgA and IgM were all on the low end of normal. She said to give him the Pneumovax and see what happened. For some kids they need this vax to jump start their immune systems. Thankfully when we retested his neutrophylls were at like 1200 so they did increase but she did say he probably has a mild case of neutropenia and while his immune system can fight off an inital infection, it doesn't have the stamina to fight it off entirely.

Nazir · January 2013

At 12 months ago and 5 days after his MMR shoots, DS started having fevers of 103 with no symptoms. We had a CBC test and his neutraphils were 600. Which is low. Two days after his fevers ended his nuetraphils were 800. About two weeks later he got another fever lasting 5 days with no symptoms but this time his neutrophyls were high. He was fine for three weeks and got another fever. So we were sent to an infectious disease doctor who diagnosed him with Periodic Fever Syndrome. However, he never got a fever again. We were also sent to a hematologist/oncologist for 5 months to make sure he didn't have a blood disease. He doesn't. Months later he was diagnosed with a feeding disorder called Infantile Anorexia. He stopped eating most foods during the fever syndrome and neutropenia. He's 3 1/2 now happy, active and weights 30 lbs and is finally at the 15th percentile. He still a beyond picky eater but no more fevers.

octbride1234 · January 2013

Hi! I am new to this board but saw your post and had to reply. My daughter has severe chronic neutropenia. She is following more of a congenital then cyclic pattern right now but we hope as she gets older this will change. This is a family gene, it is actually called "Elaine" neutropenia. It started off with my father having it and then myself and one other brother and now one of my daughters and my brother's son. It has been a learning experience for us. We now understand it alot more and now know that we have a 50/50 chance of passing it along to our offspring. I did not find out that my daughter had it until she was a year old. She started to have signs that I was familiar with, mouth ulcers, fever, red gums, gassy, and so on. Right now she is doing great, I give her the Neupogen shot three times a week, for the most part it is keeping her ANC at 1000. Before she would be under 500 and many times at 0. If you want to talk more feel free to PM me... can I ask what type of situation you are going through? Hang in there... as upsetting as it can be, they can live a long healthy happy life, we just have to be pro active and take precautions to keep them safe and healthy.

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