Neutropenia?

Re: Neutropenia?

• Jillsee member

  September 2014

  Thank you all so so much! @Sympkin‌ thank you for sharing. I'm definitely trying to keep my cool. And for the most part I am. Just scared. Ups and downs. Anticipating this next blood draw/results. Hope they do do it manually. Would it be safe to assume historically it's taken longer once done manually? It was almost three weeks last time...which seems insane to me. I had already settled with the "no news is good news" I learned my lesson thanks again for all the well wishes!

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• Jillsee member

  September 2014

  No worries @Sympkin‌ ! They took his blood this morning. Thankfully it was rather quick unlike the poking around last time. We shall see! My nerves are pretty much everywhere. Praying it comes back normal. I really appreciate your input! It means a lot!

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• Jillsee member

  September 2014

  @Sympkin‌ so... It was up a bit, but still low. Wbc count 5.7 and neutrophil 870. dr suggested waiting another month and retesting. I think we should set up a hematologist appointment too. In your opinion is that a good idea?

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• kassbaker007 member

  January 2015

  Hi Jillsee, I have received low numbers for my DS today and am a nervous wreck. I was doing some poking around and crossed this post. Can you tell me what came of your DS count? My son had a minor cold she  his yearly blood work was done and I'm hoping that was the cause but at 750 it seems too low for just a cold to have caused it. Any info would be solo appreciated! Thanks!

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• Jillsee member

  January 2015

  @kassbaker007‌ : I'm sorry to hear that! It has been quite a roller coaster since our first draw. First thing though, don't get too worked up until you get a blood draw while healthy. Yes that is low but I've known of other kids (there is an extremely helpful Facebook network for moms with children with neutropenia) that can get dips, even big ones, with virus'. Just be vigilant and follow up with it. Get a redraw when your little one is well and depending on that result you can see where to go from there. Do you know the wbc (white blood count)? Again, don't panic too much (so much easier said than done especially w dr google so available) Also just watch to make sure their ears stay ok, infections become more likely the lower the count. 750 is low but soooo many kids have much lower. Think of it as a front line of defense. At least there are some Keep me posted and please feel free to reach out with any questions or concerns... It was a very scary and lonely ride for us at first. Still scary now but a good support system is so important!

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• Jillsee member

  January 2015

  @babygsmommy‌ , I haven't yet. Heard they make wicked good pie, just didn't want to impose

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• kassbaker007 member

  January 2015

  Thank you for your speedy reply, the support is so appreciated and from someone who understands. His overall WBC was 4.9 or 4900. I was reviewing what I was told and his ANC is actually 725, not 750. He never gets sick, has never had a temp over 99, and had been nursed 100% till 6 months and I have him weaned down to 2 or 3 times a day now at almost 13 months old. He is a horrible sleeper though but he has more good days now. We worry that he doesn't sleep enough and I worry that it's something in my breastmilk causing this. I read that zantac can lower neutraphils and I take it often, maybe it's passing through my breastmilk? I'm concerned also that he will get sick as a result of receiving the Varicella vaccine the day his blood was drawn. My mind is racing with all the worries. It's scary that I read he is more susceptible to infection and I see on the news everyday how this potent strain of the flu is killing children. To top it off, my doctor is so relaxed about it and they didn't even mention that his immune system is vulnerable. I had to read it on google which ironically they told me not to do. I hope your little one is doing well. You seem to be handling it well and it gives me hope that I will be able to do the same.

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• Jillsee member

  January 2015

  If I seem to be handeling it well it's because I've had time for plenty of freak outs I have good days and bad days. It's been a very hard road these past few months. Before his dx he was rarely sick. Only picking up virus' when we went to visit his cousin who is frequently sick. We limited that after correlating. Js neutropenia was found at a routine draw. We then retested a month later. And bi monthly for two months after that. In all his draws we have seen from 620 to 870. His wbc is between 5 and 5.7. Thankfully all the other numbers are normal (monocytes sometimes high but that is ok) We currently live a very sheltered bubbled life. Out of an abundance of caution. Some would say I overdo it but that is their opinion. Our hematologist is fine w the bubble especially during flu season. While the flu is terrible remember it is a virus and neutrofils are your defense against bacteria. So low neutrofils isn't a problem when fighting a virus, only an infection. Still I know, freaking scary. My advice. Stay as cool as you can and ask for a recheck in a month or when your babe is feeling well. There are so many types of neutropenia (defined as a low neutrophil count be it temporary or chronic) that you will need long term data to help determine what the whole picture is. You'll be ok, hang in there and just do your best to keep your babe well. It's all we can do! Oh, re: nursing. J is still breastfed at almost 20 months, exclusively until 7 and still only gets bm in a cup vs cow milk. I have had fears that my milk is causing it too. The hemoc does not think that it is likely but you don't know. I do know that the three times I have been sick since j was born he has evaded it. I look at it, nursing, as a helpful benefit to keeping him well. So to wrap up w a touch of hope... In hindsight we are pretty sure he has had it since 6 weeks. He was dx at 15 months. On Monday he had a blood draw and it showed 1480. Wbc 5.7. Just a touch low for both. It's that small hope that's pushing me through right now. Dr cautioned that it may be his body mounting a defense and to not get tooooo excited but either way it is good news. 4 months until our next draw...

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• Lizzybizzy80 member

  January 2015

  Jillsee said:

  @babygsmommy‌ , I haven't yet. Heard they make wicked good pie, just didn't want to impose

  You wouldn't be imposing at all!

  

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• Jillsee member

  January 2015

  

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• kassbaker007 member

  January 2015

  Thanks for the words of encouragement. Js' last draw sounds like he is outgrowing the neutropenia! Why isn't that the dx? Especially if there is no clear reason for the low numbers to begin with. I read that it can be quite common for some babies to just have a low count for the first year or 2 of their lives and then normal thereafter OR I read that some babies just have low neutrophil counts and thats just the way their body is and it doesn't significantly affect their lives. The levels your son has are above 500 so it sounds like he's okay? But this wouldn't comfort me much either. I am SUCH a worrier, and to a fault. These convos help work out my concerns though so thank you! We are going in tomorrow for a repeat blood draw in hopes it was just from the teeny tiny cold he had. I'm sooooo nervous. I do recall that when my son was about 7 mod old he got an infection on his finger, Paranychia. The night before the infection started he had a hangnail and I chewed it off. Like wildfire, there was a red, angry, swollen infection. I rushed him to urgent care and they drained it and said they don;t always test the sample of pus but did. I was prescribed antibiotics and since we were on our way to Martha's Vineyard for vacation, we didn't fill it until almost 12 hours later. His finger was already almost 75% better and never got worse. Once we reached our destination we received a call that the sample showed MERSA. I totally freaked out and was extremely concerned as to how he would have contracted MERSA. They postulated that it could have just been a tainted sample because MERSA floats all around everywhere. This didn't calm my fears: why would he have MERSA? Now I look back and wonder if he's had low neutrophil count for quite a while. Like your son, he's never been sick, I had strep throat, and one of the worse colds of my life and he was completely untouched. I nursed him throughout too. I'm probably thinking too hard, but when it comes to his health, I don't want to leave any stones unturned! I know you can relate:)

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