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Liver and spleen enlarged?


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I finally feel like I have some doctors who hear me! Went to lyme dr. ran all kinds of blookwork, put ds7 on probiotics abx, Dr. L put him on Zithromax, and new pediatrition said "there is strep SOMEWHERE in his body" Son had T&A out in 2010 (prior to pandas). Step tests usually come back negitive- but I know his behavior is worse when kids around him have strep or other illness.

 

DR. ordered a sinus ct (he thinks it's there), also said that his liver and spleen where enlarged?!, so getting sonogram as well tomorrow.

dr. said strep can definatly be in other areas. This ped, felt that even though my son usually tests negitive for strep it's there.

Also, waiting for bloodwork for lyme and other co-infections.

 

The liver and spleen enlarged make me a bit nervous- old bloodwork from april 2012 showed he had mono at some point, but that could have been years ago.

We will see what tests show tomorrow.

 

When I "google" enlarged liver and spleen, many things come up from infection to lukemia......I am praying it is due to infection......

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Have you asked LLMD about babesia, Lyme co infection? This can cause enlarged spleen, and I think Lyme may do that too. Babesia does not always test positive. My friend's son has enlarged spleen from Babesia. In My DD's case ehrlicia/anaplasmosis threw her Liver enzymes off, resolved with abx treatment. I hope for you it is due to manageable infection and not serious illness but you need to go through all possible causes.

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Also, what is his IgG titer for Epstein Barr virus? If its high, this could indicate chronic infection, according to our doctor. My son had all the symptoms of Mono this Fall, but his IgM was normal. IgG had more than doubled since 4 months previous, when we just happened to test for it. Not sure if the chronic form can cause enlarged spleen, but worth looking into, in addition to Babesia. Our LLMD gave us herbals to fight the EBV, so there are ways to push it back.

 

On the strep issue, are his titers elevated? Has the whole family been tested?

 

I'm sorry you are having to deal with this.

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Have you asked LLMD about babesia, Lyme co infection? This can cause enlarged spleen, and I think Lyme may do that too. Babesia does not always test positive. My friend's son has enlarged spleen from Babesia. In My DD's case ehrlicia/anaplasmosis threw her Liver enzymes off, resolved with abx treatment. I hope for you it is due to manageable infection and not serious illness but you need to go through all possible causes.

 

 

DS turned out to have babesia when his spleen enlarged, and liver enzymes elevated. He also ended up being positive for erlichiosis (which was negative the 1st time we tested). As noted above, these resolved with tx. I second asking the LLMD about that.

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I have autoimmune disease and my kids have pandas. I had an enlarged spleen and other organs in distress several years ago when we were all going downhill. I was treated with minocycline and steroid infections. I got better fast. Like back to myself within 6 to 8 weeks. It has never reoccured.

 

Glad you found a good doctor I am sure treatment will be all the difference. Best wishes.

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Just got bloodwork back from lab corm and spoke with LLMD. He feels pretty confident that son has lyme.

CD8-/CD57+LYMPHS WAS 1.1 Norm is 2.0-17.0

ABS.CD8-CD57+Lymphs was 32 norm is 60-360

His vitamin d 25 hydroxy was also very low 18.9 norm 30-100

Started on Amox. 200 1 in am , 2 in pm. (chewable, yuck)

probiotic pearls

he also wants me to give him 5000 vit D3, that seems like a high dose for a 6 year old? Any thoughts anyone?

Liver and spleen seemed ok based on sonogram, pediatricion felt like they had gone back to almost normal- he had been on zithromax 4 days when sono was done so perhaps that helped organs reduce....

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An enlarged spleen and liver should be something a pediatrician can give give multiple reasons for... Did they not give you any insight? My dd has her spleen and liver prodded every time we go in for a visit and part if that is because it can be CAUSED by antibiotic use, along with a bunch of other things. As far as the CD57 test goes that is a really flimsy way to diagnose Lyme. I'm not saying that your child doesn't have it, but just basing the diagnosis on that test is troubling to me. Its controversial at best. What symptoms does your DS have? If I were you I would keep on that LLMD until you hear the other test results. Hopefully you haven't been told they will just go over them at the follow up visit and to treat for Lyme until you hear otherwise. We've been there done that and it's cause for alarm. I'm not trying to be upsetting, just want to make sure no one else goes through what we went through. Best of luck-

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An enlarged spleen and liver should be something a pediatrician can give give multiple reasons for... Did they not give you any insight? My dd has her spleen and liver prodded every time we go in for a visit and part if that is because it can be CAUSED by antibiotic use, along with a bunch of other things. As far as the CD57 test goes that is a really flimsy way to diagnose Lyme. I'm not saying that your child doesn't have it, but just basing the diagnosis on that test is troubling to me. Its controversial at best. What symptoms does your DS have? If I were you I would keep on that LLMD until you hear the other test results. Hopefully you haven't been told they will just go over them at the follow up visit and to treat for Lyme until you hear otherwise. We've been there done that and it's cause for alarm. I'm not trying to be upsetting, just want to make sure no one else goes through what we went through. Best of luck-

 

He feels cd57 and low vit. d level plus the pandas symtoms point to lyme. I asked after reading on this forum about are we 100% sure and he said 95%, he believes in the cd57 test, I have seen alot about how it is very controversial. I asked if there were any more specific blood tests we could run and he said yes- they would draw in his office and send to special lab, I believe igenex or something like that,He said unfortunatly that would be out of pocket.

He felt that the amox. would help with the pandas as well. I think we will have them run more bloodwork and send to special lab.

I am under the impression that the pandas is caused/or exaserbated by the lyme....or at least thats what I think I am hoping for because at least then I feel like we can "treat" it.

I went to him to rule out underlying infections prior to possibly trying IVIG as suggested by dr.L, and as I read many posts on forum about making sure there were not underlying co-infections. My son almost 7, has been to ped. 80 times since born for cold, viral infections, respirtory, sinus, pneu,...blood test showed he did have mono at some point. So.....much to take in. He usually tests negitive for strep, however, I can tell by his behavior- also when he is around anyone who has strep or other illness he is worse. Anxiety, worries primarily school fears, now is hoarding trash in room, says "Im sorry 100 times a day, hand washing. Just trying to put all the peices together. Any advise welcome.

Spleen and liver were enlarged prior to him starting on abx., dr. felt that it was because chest was congested and lungs full perhaps pushing down on organs, when we went back to see PED. 5 days later he had been on zithromax so perhaps that helped bring down the inflamation.

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