Strange array of symptoms in 3y/o. Help please.

[clickinmom]

Thank you for adding me to the group. This will be long, so bear with me.

 

My daughter has been exhibiting a whole host of strange and troublesome symptoms for many months now. It started with intermittent pain (mostly in one of her legs, but also in her back, buttocks and arms). Around the same time she started insisting on smelling everything she'd come into contact with and licking inanimate objects and having a low-grade fever (99.3 - 100). Her pediatrician ordered bloodwork and x-rays of her leg and everything came back normal. The issues persisted and she was referred to a pediatric orthopedic specialist. He reviewed the x-rays and recommended two weeks of round-the-clock ibuprofen to rule out an inflammation issue. We saw no change. In the meantime, she continued to get more sick. She was lethargic and just wanted to lie around, which isn't like her at all. She asked to be carried all the time. She was extremely emotional. She started waking up completely soaked in sweat. The low-grade fevers persisted. Her lymph nodes were visibly swollen. She began to have issues sleeping at night and was scared to sleep alone. She suddenly became terrified of bugs and would scream and shake at the sight of a fly. I took her in and the doc ordered more bloodwork. Again, it was normal (save for her LDH, which was 626, but the doctor said that wasn't extraordinarily high?). She developed some cold symptoms and began gasping and wheezing in the middle of the night. She wasn't getting better from that after several days, so her doctor put her on a two week course antibiotics for an respiratory infection. The respiratory symptoms resolved and we saw a notable difference in her behavior/well-being as well. She's now been off of the antibiotics for a week and things are getting progressively worse again.

 

In addition to what I mentioned above, here is a list of some of the other things we've noted:

-abnormally clingy

-sudden onset of irrational fears

-sleeplessness/frequent night waking

-pimply rash (on face, legs, arms)

-non-raised streaky red rash

-unexplained hives

-bathroom accidents

-strange outbursts of growling, squealing

-"bipolar" behavior - giddy one minute, crabby the next

-dizziness

-complaints of mouth and throat pain

-easily fatigued when walking

-repeatedly sticking tongue out/scraping on teeth

-sores in mouth

-irrational meltdowns (over doing things out of regular order, not getting to both hug and kiss people leaving the house, her spot at the table)

-occasional limping/abnormal running gait

-hard lumps behind one ear

-strong urine odor

-very dark circles under eyes/dark eyelids

-pale appearance

-lack of coordination

-sudden onset of stuttering and regression of speech (she does have a speech delay and hearing loss and has bi-weekly speech therapy, so we're especially conscious of changes to her communication)

 

She's had blood drawn to test the following: ANA, uric acid, CMV, EBV, CRP, ESR, chem panel. Everything came back normal. (she has antibodies for CMV, which she had congenitally and also EBV). She had a tick bite in early May (though many of the symptoms started prior to that, she did get more ill after the bite) and she was tested for Lyme, which was negative.

 

We've been focused on her swollen lymph nodes, fatigue and bone/joint pain and the doctors seem to be looking for an infection, but her white count has been normal with each CBC and is actually reducing and there's no indication of an area of infection. She had an MRI this week to rule out osteomyelitis and we don't yet have the results back, but my gut says that's not the issue. My cousin, whose daughter has an autoimmune disease, asked if we'd seen a rheumatologist. When we were chatting about my daughter's symptoms she suggested perhaps there was an autoimmune issue/component. I've been doing some googling and it does sound like maybe we've been barking up the wrong tree, so to speak, and we should have her seen by a rheumatologist.

 

Her dad and I "just know" something isn't right, but with all the tests coming back normal we're starting to feel a bit crazy. So my question for you all is, does this array of symptoms sound like something that should be pursued with an specialist in autoimmune disorders? We just want our little girl to feel better and feel like we're hitting our heads against the wall.

 

Thank you for your time in reading all that and any insight you can offer and experiences you can share.

 

 

 

 

[pr40]

the fact that tests are coming back normal might mean that you are not doing the right tests. for lyme, you may want to do igenx test since it is more sensitive then others. for PANDAS cunnigham panel is as far as we got to a proper diagnostic tool.

but, as I understand this condition, you already know what is going on at least in some way since abx had positive results on your dd's symptoms. now, i'd say, the question is how you can put her on
"prophylactic" long term abx. this is done routinely for syndham's corea. In your place, my short term goal would be to convince the pediatrician that she need prophylactic abx as you search for answers. you can print out basic info about PANDAS and share it with your dr. You can also contact Dr Sweedo at NIH -- apparently, she is willing to work with local drs and help them establish a course of treatment.

Long term goal is to see a PANDAS specialist, so call one closest to you. You may also want to find an immunologist or other specialists since your child may have more than one condition.

Good luck

[rowingmom]

I feel for you and your daughter. Three years ago we were just where you are now; not knowing where to turn for help. I think you have come to the right place.

 

I am not a doctor so these are just my interpretations: lymph node involvement, night sweats and dizziness are symptoms of babesia, a streaky rash may be indicative of bartonella. Google bartonella rash to see if that is the one you are referring to. Both of these are common co-infections of lyme (ticks can carry many parasites and other bacteria), but may be stand-alone infections as well. These infections can be transmitted by biting arthropods including ticks, deer/sand/horse flies, mosquitoes, fleas and bedbugs.

 

The babesias are protozoan parasites similar to malaria and the bartonellas are gram negative bacteria responsible for "cat scratch fever" and "trench fever". Both of these bacteria can cause significant veterinary disease as well.

 

Our daughter had every symptom you list, including loss of fine (writing) and gross (walking, speech) motor skills. All this despite mostly "normal" blood test results. Her only positive test before treatment was for ANA (speckled type) which has since returned to normal.

 

The rest of your daughter's symptoms are very specific for PANS/PANDAS. Her positive response to antibiotics, to me, seems to indicate infection. Our DD had the same positive reaction to PenVK for strep. ALL SYMPTOMS cleared while on it, only to return within 3 days of discontinuation. This was before I had ever heard of bartonella and babesia.

 

I would suggest you look for a Lyme Literate Medical Doctor (LLMD) or Lyme Literate Naturopathic Doctor (LLND), preferably affiliated with ILADS (International Lyme and Associated Diseases Society).

 

These doctors will treat based on clinical symptoms, realizing that present day testing is not infallible and doesn't necessarily test for the many subspecies of these bacteria that can be responsible for infection. They are also cognisant of the fact that proper immune function is required to resolve these infections, and that improper immune response can lead to chronic illness. They understand Tick Borne Diseases, unlike the IDSA (Infectious Disease Society of America).

 

Hang in there.

Edited June 25, 2014 by rowingmom

[Hopeny]

I am not a doctor but this seems like textbook Lyme and confections. Tests are frequently "negative" early on for a number of reasons. Please see my post that I just bumped up on Lyme Bands, which ones matter. Please visit ILADS.ORG.

 

Where are you located? I can send you some physician recommendations, immediate treatment is best for Lyme and confections.

 

I am a bit concerned about the pimply rash you described, which can present with tick borne illnesses Rocky Mountain Spotted Fever, Ehrlicia and Anasplasmosis - these 3 can have severe and life threatening consequences. My daughter had a pimply rash and had all 3 of these. Unlike Lyme (Borrelia) and Bartonella, these 3 in particular can be tested by Quest or Labcorp so I would highly encourage to ask your pediatrician to run these 3 ASAP. Also I'm not clear why with these symptoms and a known tick bite your pediatrician has not started the recommended 28 day initial course of amoxicillin which is a known standard of care.

 

I am sad reading your post, my pediatrician also misdiagnosed my daughter and she became very ill and has required over two years of treatment, which if it had been treated at onset may likely have been prevented.

Edited June 25, 2014 by hopeny

[nicklemama]

You need to find an LLMD in your area. Your daughter is displaying signs of babesia, bartonella and Lyme. It's best to use specialty labs for Lyme testing, as the standard tests done through labs like Quest and Lab Corp have a high rate of false negative.

[msimon3]

I also recommend the Igenex Western Blot test -- it is more sensitive and it tests for two variants (297,B31) of B. burgdorferi and more bands for each variant. I would also get the coinfections panel done -- more expensive but well worth the time it may save you in the long run.

[clickinmom]

Thank you for the responses. I'm hesitant to believe it's all related to the tick bite. The symptoms have been going on since January and she didn't get the tick bite until the beginning of May. The tick bite certainly seems to have possibly exacerbated her issues, though. Unfortunately there are no LLMDs in our area (Midwest). Would our next step be an immunologist in the meantime? There is a local doc on the PANS/PANDAS database.

 

I looked up the bartonella rash and hers didn't look like that. It was red and non-raised, but not in a linear pattern.

 

How would I go about getting igenex testing?

 

I plan on taking her to the pediatrician tomorrow to have the lumps behind her ear examined. They've gotten bigger and she complains of them bothering her when she wears her hearing aid.

[rowingmom]

Your daughter's long list of symptoms are extremely similar to DD's. Her's have completely resolved with treatment. Every one of them.

 

Please do not dismiss the possibility that her infections may have been acquired before the tick bite.

[clickinmom]

rowingmom - could you explain a bit more what you mean about her having the infections prior to the bite? I don't really understand how Lyme/tickborne illness and coinfections work. Like, could she have had a different infection that was then exacerbated by the tick bite?

 

I took her to the pedi today to have the lumps behind her ear looked at. She thinks they're just lymph nodes, but doesn't know what is causing them to be enlarged. She put her back on antibiotics to see if they seem to make a different again and we'll reassess Monday. She thinks we should probably see an ENT as our next step (to rule out some sort of infection in her sinuses I guess? Though she's not having any cold/sinus/allergy symptoms other than the swollen nodes and some snoring) and maybe infectious diseases. I agree we need to have her seen by a specialist, but I don't know that an ENT is the answer. So I'll probably push for I.D. or immunology. Any insight?

 

Thank you.

 

I feel like it's time for a specialist, but

[Hopeny]

sorry to be repetitive but swollen lymph nodes are a common symptom of Lyme and Bartonella. You may want to take a look at some of the references at ILADS.Org to see which symptoms may fit your DD's case in regards to Lyme and co-infections. It is entirely possible that you have multiple infections going on at the same time, some of your symptoms may be related to the tick bite and others not.

At this stage I think any infectious disease doctor would be able to diagnose and treat a new case of Lyme and co infections.

I just took a tick off my youngest daughter and the first thing our regular ped checked was my daughter's lymph nodes

[qannie47]

I Pm you, but as I re-read, you may have some co-morbid conditions...That is okay, most of us do. Seriously, what stands out loud and clear is the fact that she responded well to the abx. I would insist, maybe manipulate at least a 6 week regime of full strength dose of abx. Start there. Try and get her symptoms somewhat under control. Maybe even a steroid burst. If she responds again, that will be a lot of info. Second, I would work quickly to find a doc whom is experienced with neuro-psyche conditions associated with illness. Those swollen lymph nodes, My Pandas child had them until he was in the healing phase of Pandas. Always swollen. Not saying Pandas, exclusively, because swollen lymph nodes are indicators of a body that is sick. I cant underscore enough the importance of trying antibiotics to get the symptoms under control.

[rowingmom]

Bartonella and babesia are two infections usually associated with lyme and are often transmitted by ticks, so they are called coinfections. There are others; Rocky Mountain Spotted Fever, ehrlichia, anaplasmosis, tick relapsing fever, Q fever, Powassan encephalitis, tularemia. Most of these infections are transmitted by ticks, but some of them, including bartonella and babesia, do not require a tick bite for transmission. Exposure to cat saliva, and especially that of wild kittens who's immune systems have not matured sufficiently to deal with infection can cause transmission of bartonella.

 

 

http://www.kentuckyindianalymesupport.org/2013/07/01/a-bartonella-guru-speaks-out/

 

http://www.onehealthinitiative.com/publications/Breitschwerdt%20J%20Neuroparasitol%20Review%202012.pdf

 

http://pediatrics.aappublications.org/content/121/5/e1413.long

 

Babesia is a protozoan parasite that acts much like malaria. Transmission is generally stated to occur with tick bites, but many LLMDs feel that it can also be transferred during blood meals of other biting arthropods like mosquitoes, and the biting flies, which makes sense to me because the protozoan parasite malaria is transmitted in that fashion as well. It can also be transmitted through the blood supply.

 

http://www.aldf.com/Babesiosis.shtml

 

The presence of an EM rash (for lyme) or a bartonella rash is not necessarily a component of these infections. Our daughter tested positive for Bartonella hensalae but has never had an EM (lyme rash) or a typical bartonella rash. Where she got her infections from we don't know.

 

Lyme, bartonella and babesia are all immune suppressive, opening the gate way to other bacteria or viruses that would normally not be problematic.

 

DD was born with light/sound/touch sensitivities and things just went downhill from there. She reacted poorly to her MMR vaccinations, becoming apraxic and losing motor/executive function, which may have been the result of an improperly functioning immune system caused by her infections, which our LLMD feels are probably congenital.

 

Her PANS symptoms (ticcing, urinary frequency, raging, loss of fine motor function, insomnia, social regression etc.) started in 2008, but her bartonella pain symptoms didn't start until 2 years later.

 

DD's PANS symptoms resolved initially with bartonella abx treatment and are now resolving further with bartonella/babesia herbal treatment. Where her infections were acquired I may never know. I am treating myself with the same herbal protocols and recovering from my own symptoms indicative of bartonella. I have never been tested.