Severe neutropenia - help

[Hopeny]

My DD3 has a type of immune deficiency and also had a recent case of Lyme. She started Bactrim/Zith after being on Cefdinir/Zith for 4 months and 10 days into it developed a rash (all over, very mottled), red cheeks and a raging fever that went up to 104.9. Stopped eating and barely would drink. Fever lasted 7 days. First we thought it was Parvo (fifth disease) but titers were negative. She had cardiac echo to rule out Kawasaki's. Due to the fact that she was not sick but then came down with raging fever, cardiologist suggested it was drug fever from the Bactrim. This seemed very plausible based on symptoms and crazy fevers. They did advanced CBC and metabolic panels. Fever abates and DD's skin is a bit mottled but she is completely back to normal. I am happy thinking everything is great.

 

Today ped calls me, sounding alarmed, her absolute neutrophils are 322, lower range is 1500. Under 500 considered severe neutropenia. She essentially can't leave the house due to this. Her AST and ALT liver are extremely high. WBC is low, they are now postulating EBV and waiting for bloods. Seeing ID doc, immunologist - does anyone have any ideas? Should I give her some low alcohol milk thistle drops? I'm scared to do anything. I don't even know if I should give her probiotics, I read that with neutrophils at this level even gut bacteria can cause an infection.

 

Ped put her on amox as prophylaxis (that worried me too coming from a ped!) in the meantime while we wait to hear from immunologist. I'm scared.

[Crunchfly]

I don't have experience with this situation with my children, but I had severe neutropenia about 10 years ago as a reaction to a medication I was taking. Your daughter's symptoms make sense. I was running a high fever and felt like i had the flu. My ANC was 2, which landed me in a hospital isolation unit. I was given a series of neupogen injections throughout the week to restore my counts and I never had a reoccurrence. You may feel more at ease with a hematologist on board.

[lfran]

No advice, but you are in my thoughts. It sounds like you have a good team working on this, and they will have answers and a treatment plan for you very soon.

[tpotter]

Just a hypothesis on my part...you mentioned that she is being treated for lyme. I do know from personal experience (my DS) that low WBC and elevated liver enzymes can be indicative of babesia. Could she have babesia?

 

All of these symptoms went back to normal after tx.

Edited May 9, 2013 by tpotter

[mama2alex]

Along the lines of what tpotter suggested...Our doc mentioned today that low WBC which we ran into earlier this year could be due to Erlichia. I looked up Erlichia and in more severe cases it can cause neutropenia, high fever, rash, elevated liver enzymes, and low WBC. Just a thought...

[tpotter]

Along the lines of what tpotter suggested...Our doc mentioned today that low WBC which we ran into earlier this year could be due to Erlichia. I looked up Erlichia and in more severe cases it can cause neutropenia, high fever, rash, elevated liver enzymes, and low WBC. Just a thought...

And, DS had that, too. There are different treatments for each of these (babesia, for instance, is a parasite, and is treated like malaria is treated.) So, don't just assume that it is being covered. I would definitely ask your LLMD about both of these.

[mdmom]

I was thinking Babesia too (before I read everyone else's responses). Institute of Medicine takes the stand that in the absence of positive test results, you can use low WBC and elevated liver enzymes to diagnose.

 

If you are on the East coast, it's very likely that Babesia is present. Experts studying the disease surmise that 100% of the population on Martha's Vineyard has it. Yikes.

 

Treatment would be antimalarials (Mepron, Malarone) plus Azithroymycin and Bactirm.

 

Are you working with an LLMD?

[Debbie1]

My pandas ds developed severe neutropenia from extended use of full strength augmentin plus ivig (which temporarily lowers neutrophil counts). Our immunologist plus two hematologists were involved and all agreed that extended use of some antibiotics can cause this. We cut his augmentin dose in half and his neutrophil count bounced back. He continues to get ivig, but we check his neutrophil count before hand to make sure it is high enough to go ahead, knowing that the ivig will push down his neutrophils.

Edited May 9, 2013 by Debbie1

[Hopeny]

Thanks everyone. I thought about Babesia too, I asked ped to run it through quest at least to see what came up, her bullseye was August 2012. i will call dr j today to ask as well. Spleen is not enlarged. She was given 3 days of doxy in September, in case if rmsf but probably not long enough course for ehrlicia. will ask them to run that too. Friend at top NYC children's hospital is getting us pediatric immunologist/hematologist. Funny ped did not recommend hematologist but dr friend who is helping did along with super smart acn friends!

[sf_mom]

Neutropenia can happen while treating Lyme. The children I know needed to suspend antibiotics temporarily until things resolved.

 

Have you tested yourself for Lyme Disease yet? Did you have exposure while growing up or have known TIC bite. I understand your DD had a recent TIC bite but it appears you are dealing with a lot more than just Lyme. I have a feeling she will have high EBV as well. Have you done more extensive viral testing to include HHV6 and Coxsackies yet?

 

I have to say there are many a symptomatic mother's (not treating themselves), that are positive for Lyme and have children in similar state. I know Dr. J did not think your DD was congenital but in our experience and many others congenital children did not present as he describes 'as floppy or severely sick'.

 

The only reason I mention testing yourself is it could help determine what your DD has for infections and potentially viruses. I also found my husband had active strep and chlamydia pneumonia while I had numerous viruses along with mycoplasma. As you know, those types of bugs can be past back and forth easily among family members. In August I will start my third year of treatment and I am still positive for mycoplamsa and still have extremely high EBV.

Edited May 9, 2013 by SF Mom

[Hopeny]

It seems it definitely was the Bactrim, DD's WBc was 7.4 late yesterday and absolute neutrophils up to 1500! Yay! Wow this stuff did a number on her, I got a copy of her lab work from Tuesday, what a mess! Babesia negative and as once before, EBV IGG high positive but IGM negative. We are still waiting for the EBV PCR. I am still stunned that an antibiotic did all this. DD is still pretty exhausted but I am hoping that is just a leftover from this ordeal.

 

SFMom I am sure I had Lyme and likely Bart. I had an almost identical incident to the one Andrew Pachner describes as the "Bicycle Boy"

/www.bio.net/bionet/mm/microbio/2001-August/020601.html while at sleep away camp around age 12 or so. After camp I became Anorexic/Bulimic and suicidal (swallowed bottles of Tylenol a couple of times) had recurring headaches every May and then knee pain which my pediatrician attributed to patella malatia (not sure how I still remember that!) . I had stretch marks which at the time attributed to growing. I also had chronic strep swabbing positive every time I was tested. Later in life I suddenly began having migraine aura headaches. Rage episodes. I also started to have very bad vertigo once or twice a year. When I began researching Lyme the light went off for me putting together all of these symptoms. Last summer I pulled something I thought was possibly a tick off me after going to the beach, my GP treated me with 2 weeks of Doxy and the constant ringing in ears went away. Since I do not really seem to have symptoms now, I have put the expense of testing on hold until we can get out of our financial hole. My ASO/Myco are normal. Somehow I think I am more able to handle Lyme while my DD's are not - they inherited an immune condition from my husband and are extremely succeptable to everything.

[sf_mom]

Thanks goodness your DD is improving!!!

Wow, it surely seems like Lyme and your body is dealing with the bug. I also had the vertigo dizziness (went to the ER couple of times and told inner ear infection). I even stumbled over and felt like I had the serious bed spins on two occasions. Dizziness like that is specific to Babesia. You might consider the possibility of the infection for both your DDs even though they were negative. I had many symptoms of babesia but came up negative when tested. 2 of 3 children were also negative, they had "minimal" specific symptoms to Babesia but one child was positive. That positive result really helped us to realize all were dealing with Babesia. Kids grew up in downtown SF, on antibiotics at 2 1/2 and diagnosed with Lyme et al at 3 1/2. No known tic bites and no exposure.

I totally get needing to focus funds towards your children's care. I can count at least more than a handful of friends that are in a similar situation. I also have a friend who is very sick while her son who is probably congenital has only minor migrating symptoms. They are choosing not to treat him at this time because she is struggling so badly. Perhaps if there is a Babesia test that is covered by your insurance you could consider testing yourself for just that co-infection. Again, a mother's positive test results (who is not treating herself at this time) were helpful in understanding her son had Babesia even though they too had negative results for her son.

I am also very high positive IGG with IGM negative. I just discussed this with our LLMD last week and to him it indicates more of a chronic virus causing issues when they are that high. It is more about the direction of the IGG then if it is IGM positive.

Edited May 11, 2013 by SF Mom

[tpotter]

Neutropenia can happen while treating Lyme. The children I know needed to suspend antibiotics temporarily until things resolved.

 

Have you tested yourself for Lyme Disease yet? Did you have exposure while growing up or have known TIC bite. I understand your DD had a recent TIC bite but it appears you are dealing with a lot more than just Lyme. I have a feeling she will have high EBV as well. Have you done more extensive viral testing to include HHV6 and Coxsackies yet?

 

I have to say there are many a symptomatic mother's (not treating themselves), that are positive for Lyme and have children in similar state. I know Dr. J did not think your DD was congenital but in our experience and many others congenital children did not present as he describes 'as floppy or severely sick'.

 

The only reason I mention testing yourself is it could help determine what your DD has for infections and potentially viruses. I also found my husband had active strep and chlamydia pneumonia while I had numerous viruses along with mycoplasma. As you know, those types of bugs can be past back and forth easily among family members. In August I will start my third year of treatment and I am still positive for mycoplamsa and still have extremely high EBV.

We actually did not have to suspend abx, although that was my first thought. Instead, when I found out it was probably due to infection (saw hematologist, who agreed), DS started on IV abx. It was after that, that ACN friends suggested the possibility of babesia. Also, IV abx confirmed that stretch marks were actually bartonella, because the faded approx. 50%.

 

I'm also still fighting the mycoP bug. My titers dropped from 1750 - approx. 1050, but then recently went up to about 1130. I suspect I was exposed at work. Very, very hard to completely get rid of, and it is very frustrating.