Children's bloodwork back, need help!

[matis_mom]

I took my 14-yo back today to make sure he was all clear (was treated last month as carrier). In June, I asked the pediatrician to run everything (CBC, Immunoglobulins, Lyme, Strep titers) on everyone. Went to the lab twice (couldn't quite manage all 7 kids at the same time!), pricked everyone and got three tubes of blood out of each. No call from doc, so I assumed everything was normal. When I go in today she had copies of the bloodwork, and gives me this story that the lab had not sent them and she had to call and get them and oh, by the way, some of these numbers are out of range. Of course I was focused on knowing if we had anyone with an elevated ASO, so I'm looking for it and can't see it and it turns out it was not run. No ASO, no anti-DNASE b, no streptozyme! That was the whole point of doing the bloodwork, the other stuff was "just to be sure".

 

So it turns out 2 of the kids have pretty strong allergies, and I guess if I hadn't gone back with my other son, I never would have gotten a call... grrrrr. On top of that I got no real good explanation of what the results mean.

 

So, for ds4...

EOS= 9 (normal 0-4)

IgE = 3832 (normal 0-60)

 

This seems way off to me, she said it just means he has allergies.

 

For PANDAS ds12

EOS = 8 (normal 0-4)

IgM = 29 (normal 23-239)

Mycoplasma P. IgG = 318 (normal 0-99) This really worries me as back in July it was around 130 so it's definetily gone up. Now how do I know if he does indeed have mycoplasma and how to treat it?

 

But I can't deal with this doctor any more. She is "nice" but really has no clue. I keep going in there and basically telling her what to do. That's not what I want from my child's doctor!!! We see doctor Latimer and she is awesome but I need a pediatrician I can go to for help. With 8 kids, I need someone who can see the big picture and help us get the upper hand on the strep before ds goes for plasmapheresis.

So, I'm going to switch them all to my husband's doc, who is a bit further but she has had a couple of PANDAS patients and even though she is no expert, she is very capable and proactive.

 

Please if any of you has any thoughts about the bloodwork or anything, I could really use the help!

 

PANDAS ds is going to camp on Sunday and he has been a bit short-tempered lately. Then he comes back and the week after is scheduled for plasmapheresis... I am so worried that we'll do it and then just get strep again, but then again, I can't keep delaying forever.

 

Sorry to go on and on, I just need to "talk" to someone who understands. DH is trying to be supportive but I feel all the pressure is on me. I wish I could find a good local doc who takes insurance!!!

Edited July 9, 2010 by mati's mom

[kimballot]

I took my 14-yo back today to make sure he was all clear (was treated last month as carrier). In June, I asked the pediatrician to run everything (CBC, Immunoglobulins, Lyme, Strep titers) on everyone. Went to the lab twice (couldn't quite manage all 7 kids at the same time!), pricked everyone and got three tubes of blood out of each. No call from doc, so I assumed everything was normal. When I go in today she had copies of the bloodwork, and gives me this story that the lab had not sent them and she had to call and get them and oh, by the way, some of these numbers are out of range. Of course I was focused on knowing if we had anyone with an elevated ASO, so I'm looking for it and can't see it and it turns out it was not run. No ASO, no anti-DNASE b, no streptozyme! That was the whole point of doing the bloodwork, the other stuff was "just to be sure".

 

So it turns out 2 of the kids have pretty strong allergies, and I guess if I hadn't gone back with my other son, I never would have gotten a call... grrrrr. On top of that I got no real good explanation of what the results mean.

 

So, for ds4...

EOS= 9 (normal 0-4)

IgE = 3832 (normal 0-60)

 

This seems way off to me, she said it just means he has allergies.

 

For PANDAS ds12

EOS = 8 (normal 0-4)

IgM = 29 (normal 23-239)

Mycoplasma P. IgG = 318 (normal 0-99) This really worries me as back in July is was around 130 so it's definetily gone up.

 

But I can't deal with this doctor any more. She is "nice" but really has no clue. I keep going in there and basically telling her what to do. Does not what I want from my child's doctor!!! We see doctor Latimer and she is awesome but I need a pediatrician I can go to for help. With 8 kids, I need someone who can see the big picture and help us get the upper hand on the strep before ds goes for plasmapheresis.

So, I'm going to switch them all to my husband's doc, who is a bit further but she has had a couple of PANDAS patients and even though she is no expert, she is very capable and proactive.

 

Please if any of you has any thoughts about the bloodwork or anything, I could really use the help!

 

PANDAS ds is going to camp on Sunday and he has been a bit short-tempered lately. Then he comes back and the week after is scheduled for plasmapheresis... I am so worried that we'll do it and then just get strep again, but then again, I can't keep delaying forever.

 

Sorry to go on and on, I just need to "talk" to someone who understands. DH is trying to be supportive but I feel all the pressure is on me. I wish I could find a good local doc who takes insurance!!!

 

UGH! Sounds like many of us are in the same boat with pediatricians!! I am wondering if your PANDAS ds is on antibiotics for camp? Trying to decide what to do with my son who is scheduled for camp in August.

 

Thanks

[matis_mom]

UGH! Sounds like many of us are in the same boat with pediatricians!! I am wondering if your PANDAS ds is on antibiotics for camp? Trying to decide what to do with my son who is scheduled for camp in August.

 

Thanks

There's no way I'd send him without them! It's in his health form, and then there is another form specific to the camp he is going to, where they have a little checklist to make sure he takes it. They will keep the meds and give it to him at breakfast and dinner. I'm only sending the Augmentin XR, though, not all the supplements. He knows to try to eat healthy (it may be hard at Scout camp!). And the husband of a very close friend is going with the boys, so he'll keep an eye on him for me. Last year he went right after we started treatment and the OCD was still very strong, but he still managed to do all he needed to do.

[kimballot]

UGH! Sounds like many of us are in the same boat with pediatricians!! I am wondering if your PANDAS ds is on antibiotics for camp? Trying to decide what to do with my son who is scheduled for camp in August.

 

Thanks

There's no way I'd send him without them! It's in his health form, and then there is another form specific to the camp he is going to, where they have a little checklist to make sure he takes it. They will keep the meds and give it to him at breakfast and dinner. I'm only sending the Augmentin XR, though, not all the supplements. He knows to try to eat healthy (it may be hard at Scout camp!). And the husband of a very close friend is going with the boys, so he'll keep an eye on him for me. Last year he went right after we started treatment and the OCD was still very strong, but he still managed to do all he needed to do.

 

Thanks - I was just trying to figure this out in my head today... If I do all the supplements... do I package everything in little ziplog bags for the nurse...etc. My son is on high dose omnicef right now because it is post surgery.. I guess it is best to keep him on high dose through camp then maybe wean down to prophylaxis. I'll see what Dr. B says at the end of the month.

 

Thanks

[bubbasmom]

I'm bad with all the labs however I did ask an infectious disease doc about the IGg test and she said that goes up with any infection and takes a while to go back down. So if they had strep a fairly recent time ago could be that.