Low Platelets 85, low hemoglobulin, any ideas?

[Burnell]

My daughter became sick with OCD and PANDAS in Sept 2010. Her platlet count then was around 80. Normal is over 150. and seriously low is below 50. After an IVIG in May 2011 it went up to over 200.

Now (9/1/2011) at USF and All Childrens Hospital, Dr, Murphy ran blood work and our DD12 platelet count is back down to 84 with low hemoglobin and low iron. She IS on a multi-vitamin and easts alot of red meat.

She has started to bruise more easily. We were just down at the 3 week CBT therapy under Dr Eric Storch in St Petersburg Florida.

We are home and awaiting blood work that they ordered. We may soon start her on abilify to add to the celexa. But a second IVIG remains another option.

Does anyone have experience in a PANDAS child or OCD child having low platlet count?

We saw a hematologist last fall, and they had no guess and just said thats how it is in some people.

[sf_mom]

I understand your DD is regressing post hdIVIG with prior positive response. I was wondering how Yale screened for Lyme? Did they test for co-infections? Bartonella can cause low WBC and Babesia can cause low RBC (intercellular RBC parasite) and low WBC. If they did not check for TBI co-infections it is possible that one of them is the causing the low platelets. Two of our three children had both low WBC and low RBC. They confirmed positive for Bartonella and Babesia. These issues have resolved for my two children and they are 1 year into treatment.

 

Anaplasmosis can also cause low platelets. Here is the link http://www.aldf.com/Anaplasmosis.shtml

 

I recommend you test for these particular infections if you have not already. They are not covered in standard WB Testing for Lyme Disease. Many will show positive for a co-infection but negative for standard Lyme. Anemia or low iron is another common indicator. I myself have Lyme Disease and low iron.

 

I'd keep searching for potential cause, good luck, Wendy

Edited September 6, 2011 by SF Mom

[4lulu]

My dd10 has PANDAS and low platelet count, both diagnosed following strep in March of 2008. After the initial low platelet count (30,000) she was diagnosed with ITP which stands for Immune Thrombocytopenic Purpura. ITP is an autoimmune condition in which the body attacks it's own platelets. It sometimes occurs in kids following a virus or bacterial infection, but typically resolves on it's own with no treatment within a couple of months. In our case it has not resolved and my dd10 has had counts fluctuating from 11,000-75,000. The only time she has had a normal count in the last 3 1/2 years was following ivig in 6/2010. But like all other tx for both ITP and PANDAS (so it seems) results were only temporary until the immune system is activated again. We have always been told that once you have 1 autoimmune condition you are at risk for more.

[sf_mom]

Accidental double post

Edited September 6, 2011 by SF Mom

[4lulu]

I also forgot to mention that she also tends to have a low hemoglobin as well, but all of her iron testing was normal. Our hematologist tested for another condition that can also cause destruction of red blood cells, but that was negative. The 2 often are found together...RBC and platelet destruction.

[tpotter]

I understand your DD is regressing post hdIVIG with prior positive response. I was wondering how Yale screened for Lyme? Did they test for co-infections? Bartonella can cause low WBC and Babesia can cause low RBC (intercellular RBC parasite) and low WBC. If they did not check for TBI co-infections it is possible that one of them is the causing the low platelets. Two of our three children had both low WBC and low RBC. They confirmed positive for Bartonella and Babesia. These issues have resolved for my two children and they are 1 year into treatment.

 

Anaplasmosis can also cause low platelets. Here is the link http://www.aldf.com/Anaplasmosis.shtml

 

I recommend you test for these particular infections if you have not already. They are not covered in standard WB Testing for Lyme Disease. Many will show positive for a co-infection but negative for standard Lyme. Anemia or low iron is another common indicator. I myself have Lyme Disease and low iron.

 

I'd keep searching for potential cause, good luck, Wendy

 

 

I am going to agree with SF Mom. We have been treating for Lyme and co-infections since last August for my entire family. DS15 was the one who we were least sure about. In May, he suddenly became very ill, missing almost the last month of school. Ended up in the ER with terrible pain. WBC was low, liver enzymes elevated, spleen enlarged, and ASO was elevated (about 325). Given the fact that he got pancreatitis last Thanksgiving from abx, we were certain that he had been exposed to strep + all the abx we had him on for Lyme was causing all the problems. I was frantic, and we got him on IV abx for the strep.

 

All of a sudden, the stretch marks he had had for several years started seriously fading, so it became apparent that he definitely had bartonella. Also, it was pointed out to me that the rest of the symptoms could all be babesia. He was treated for all of them, and we are still treating. But, there's no question that Lyme and co-infections are definitely part of his picture (in addition to strep.)

 

BTW, we tested for co-infections, and the only one that came back even slightly positive (Igenex) was Erlichiosis. When we looked online at the symtpoms, there was no question my son had had those for years. My point is that even if the tests come back negative, just like with Lyme, the blood tests are very inaccurate. If you are having any problems with joints, though, the synovial fluid can be checked, and my understanding is that it is more accurate as a diagnostic tool.

 

Good luck.

[Burnell]

How do you all get Doctors to do these lyme co-infection tests?

 

Ours only ever want to do the western blot. We are waiting for Lyme EIA with Refl 166 and 16M but I know not what any of that means,

 

She has tested low for Platlets 85, RBC , HGB, HCT, MVP and reticulate 0.45

 

We are waiting for new results from the Univ of South Florida.