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Rickets xray (piog) *Update*

Posted by on Feb. 5, 2013 at 4:15 PM
mel
  • 11 Replies
Ellies growth/nutrition specialist called.



Shes anemic and low white counts all likely related to her blood diseases.



Her iron was 42(40 is considered low) vit d was 6.



They ordered xrays for rickets. Her calcium, parathyroid, phosphate were normal which is reassuring but they want to make sure so they are getting xrays and then want to start vit d supplement but monitor it because with such low levels adding to much vit d to quick can cause further problems.



Any of this sound right? Im planning on getting the one I've seen recommended on here, but I'm not planning on doing the multivitamin.



Oh and all this is because shes not eating enough solids at 10mo. (i call BS on that)




***Update***

So the xrays were negative! Which is awesome! But not suprising :) even my mom is irritated with the seemingly scare tactics that theyre using. Carlsons vit d drops are en route. We have to make the decision on whether to let hematology pick up her case for the genetic blood disease and neutropenia. Not sure I want to continue dealing with "specialists" BS. r
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Replies (1-10):
IrishIz
by Silver Member on Feb. 5, 2013 at 4:29 PM

What does he have?

melindabelcher
by mel on Feb. 5, 2013 at 4:41 PM
Elliptocytosis (?sp) and chronic benign neutropenia of childhood



Quoting IrishIz:

What does he have?



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melindabelcher
by mel on Feb. 7, 2013 at 9:40 PM
Bump for update
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maggiemom2000
by Ruby Member on Feb. 7, 2013 at 10:30 PM
1 mom liked this

I think that is a good call on the vit D drops.

preacherskid
by Silver Member on Feb. 7, 2013 at 10:48 PM

I had to look this up- my family has this, only under a different name- spherocytosis, acute hereditary.  The neutropenia they have never been diagnosed with, but reading up on it (if I understand it correctly) that is actually very common in a person with spherocytosis.  My three brothers, my mother, a few uncles, my grandfather, and some more distant relatives all have the spherocytosis, and all are prone to infections- my older brother got pleurisy when he was four.  They seem to go hand in hand.  The anemia has nothing whatever to do with her diet- her blood cells are decaying at a higher than normal rate, so her iron levels are going to be lower than normal.  Again, family experience speaking here.  Vitamin d may help, what helps my family more (this is for maintenance, every single one ends up with a splenectomy to mitigate the more severe effects of the disease) is a folic acid/b vitamin regimen.  My mother could explain how, I am not very clear, somehow those particular vitamins strengthen the blood cells so that they do not decay and rupture as quickly.  If you need to talk, send me a pm- I have watched my mother then my brothers deal with doctors and this disorder for years :)

Quoting melindabelcher:

Elliptocytosis (?sp) and chronic benign neutropenia of childhood



Quoting IrishIz:

What does he have?




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preacherskid
by Silver Member on Feb. 7, 2013 at 10:49 PM
1 mom liked this

And go with the hematologist- they can help you a lot with managing the blood disorder.  Most specialists are annoying, but in this case they can back you up on certain things, like the side effects of the disorder and best treatment methods.

mostlymaydays
by Group Mod-Stacy on Feb. 7, 2013 at 10:55 PM
My one ds has hereditary spherocytosis, got it from my dh. Interestingly my dh's case was a random mutation. We have dealt with years of jaundice and anemia and he had his spleen removed a year and a half ago when he was 8. The neutropenia connection is very curious to me. This one child of mine always had these 105 fevers, never my other 3, who do not have HS. I never heard of neutropenia before Melinda brought it up and I can't help but think my ds had something going on along these lines.

Quoting preacherskid:

I had to look this up- my family has this, only under a different name- spherocytosis, acute hereditary.  The neutropenia they have never been diagnosed with, but reading up on it (if I understand it correctly) that is actually very common in a person with spherocytosis.  My three brothers, my mother, a few uncles, my grandfather, and some more distant relatives all have the spherocytosis, and all are prone to infections- my older brother got pleurisy when he was four.  They seem to go hand in hand.  The anemia has nothing whatever to do with her diet- her blood cells are decaying at a higher than normal rate, so her iron levels are going to be lower than normal.  Again, family experience speaking here.  Vitamin d may help, what helps my family more (this is for maintenance, every single one ends up with a splenectomy to mitigate the more severe effects of the disease) is a folic acid/b vitamin regimen.  My mother could explain how, I am not very clear, somehow those particular vitamins strengthen the blood cells so that they do not decay and rupture as quickly.  If you need to talk, send me a pm- I have watched my mother then my brothers deal with doctors and this disorder for years :)

Quoting melindabelcher:

Elliptocytosis (?sp) and chronic benign neutropenia of childhood






Quoting IrishIz:

What does he have?





Posted on the NEW CafeMom Mobile
mostlymaydays
by Group Mod-Stacy on Feb. 7, 2013 at 10:58 PM
And good news with the update. I know how much grief you've dealt with with these specialists. At least they'll back off over this.

Quoting melindabelcher:

Ellies growth/nutrition specialist called.





Shes anemic and low white counts all likely related to her blood diseases.





Her iron was 42(40 is considered low) vit d was 6.





They ordered xrays for rickets. Her calcium, parathyroid, phosphate were normal which is reassuring but they want to make sure so they are getting xrays and then want to start vit d supplement but monitor it because with such low levels adding to much vit d to quick can cause further problems.





Any of this sound right? Im planning on getting the one I've seen recommended on here, but I'm not planning on doing the multivitamin.





Oh and all this is because shes not eating enough solids at 10mo. (i call BS on that)









***Update***



So the xrays were negative! Which is awesome! But not suprising :) even my mom is irritated with the seemingly scare tactics that theyre using. Carlsons vit d drops are en route. We have to make the decision on whether to let hematology pick up her case for the genetic blood disease and neutropenia. Not sure I want to continue dealing with "specialists" BS. r
Posted on the NEW CafeMom Mobile
preacherskid
by Silver Member on Feb. 7, 2013 at 11:13 PM

I don't think my brothers ever got a dx for neutropenia, but that was over twenty years ago, and my mother had a hard enough time getting doctors to admit that my brothers  could  not simply "live with" the symptoms and lead a normal life without the splenectomy.  But really what healthy non immune compromised four year old gets pleurisy?  It makes perfect sense in retrospect.

Quoting mostlymaydays:

My one ds has hereditary spherocytosis, got it from my dh. Interestingly my dh's case was a random mutation. We have dealt with years of jaundice and anemia and he had his spleen removed a year and a half ago when he was 8. The neutropenia connection is very curious to me. This one child of mine always had these 105 fevers, never my other 3, who do not have HS. I never heard of neutropenia before Melinda brought it up and I can't help but think my ds had something going on along these lines.

Quoting preacherskid:

I had to look this up- my family has this, only under a different name- spherocytosis, acute hereditary.  The neutropenia they have never been diagnosed with, but reading up on it (if I understand it correctly) that is actually very common in a person with spherocytosis.  My three brothers, my mother, a few uncles, my grandfather, and some more distant relatives all have the spherocytosis, and all are prone to infections- my older brother got pleurisy when he was four.  They seem to go hand in hand.  The anemia has nothing whatever to do with her diet- her blood cells are decaying at a higher than normal rate, so her iron levels are going to be lower than normal.  Again, family experience speaking here.  Vitamin d may help, what helps my family more (this is for maintenance, every single one ends up with a splenectomy to mitigate the more severe effects of the disease) is a folic acid/b vitamin regimen.  My mother could explain how, I am not very clear, somehow those particular vitamins strengthen the blood cells so that they do not decay and rupture as quickly.  If you need to talk, send me a pm- I have watched my mother then my brothers deal with doctors and this disorder for years :)

Quoting melindabelcher:

Elliptocytosis (?sp) and chronic benign neutropenia of childhood






Quoting IrishIz:

What does he have?






CafeMom Tickers
melindabelcher
by mel on Feb. 7, 2013 at 11:27 PM
Yep, and Ellie had a doosey of a fever about 1.5month ago. Shocker another kiddo with both. Leilani has neither. I really feel it's interconnected. However both ellies seem to milder then marcus.


Quoting mostlymaydays:

My one ds has hereditary spherocytosis, got it from my dh. Interestingly my dh's case was a random mutation. We have dealt with years of jaundice and anemia and he had his spleen removed a year and a half ago when he was 8. The neutropenia connection is very curious to me. This one child of mine always had these 105 fevers, never my other 3, who do not have HS. I never heard of neutropenia before Melinda brought it up and I can't help but think my ds had something going on along these lines.



Quoting preacherskid:

I had to look this up- my family has this, only under a different name- spherocytosis, acute hereditary.  The neutropenia they have never been diagnosed with, but reading up on it (if I understand it correctly) that is actually very common in a person with spherocytosis.  My three brothers, my mother, a few uncles, my grandfather, and some more distant relatives all have the spherocytosis, and all are prone to infections- my older brother got pleurisy when he was four.  They seem to go hand in hand.  The anemia has nothing whatever to do with her diet- her blood cells are decaying at a higher than normal rate, so her iron levels are going to be lower than normal.  Again, family experience speaking here.  Vitamin d may help, what helps my family more (this is for maintenance, every single one ends up with a splenectomy to mitigate the more severe effects of the disease) is a folic acid/b vitamin regimen.  My mother could explain how, I am not very clear, somehow those particular vitamins strengthen the blood cells so that they do not decay and rupture as quickly.  If you need to talk, send me a pm- I have watched my mother then my brothers deal with doctors and this disorder for years :)

Quoting melindabelcher:

Elliptocytosis (?sp) and chronic benign neutropenia of childhood









Quoting IrishIz:

What does he have?







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