Lost

I am starting to feel truly lost, mired in the confusion of not my own, but my daughter’s invisible, confusing problems. This I know: something is not quite right. I also know: many things are right, more than right. But illness does not define the person, it influences some but not all and sometimes in subtle ways. So while my daughter is a wonderful, growing, living, thinking, loving, energetic, imaginative, kind, thoughtful, difficult being and all of that is at some level normal, I also need to trust my gut when it says: something isn’t quite right. Especially when it’s not just my gut, but also my daughter who is telling me this.

She complains frequently of belly pain. She says it’s getting worse again. She is unhappy, starting to have dark bags under her eyes. Every morning is a struggle, she frequently threatens not to eat, not to go to school, etc. There is always something that becomes the thing that gets in the way of the morning moving forward. It’s not quite like last spring, when she ended up in fetal position on a daily basis (or more often) but it’s still pretty extreme at times. When she feels truly overwhelmed she runs up to her bed, crawls under the covers, and curls up saying “nobody loves me, nobody loves me, nobody loves me.” It breaks my heart to hear her. I hold her when she lets me, try to talk to her, try to give her comfort and calm support, though sometimes it is overwhelming to do so. I wish I could take away whatever troubles her.

And so I am trying something: taking away foods that might be the source of her troubles. We are in the middle of a 3 week trial of no dairy because of antibodies to casein that showed up in her bloodwork. She at first said that things were much better but now says they’re getting worse again. Today when I was driving her home she looked sad in the car, so I asked if she was feeling sad and she told me that a fairy she knows had died. She seemed so sad about it that I picked her up when we came inside and she cried and cried in my arms. When I tried to ask her about things that might be upsetting her she said that none of them were, and then reiterated her sadness about the death and broke into wailing tears. After I calmed this down, she got back into fussing, and it took me almost two hours to get a smile out of her (or get her to eat any food). In the end I got her out of her funk by insisting she come outside with me, placing her on the garden fence, in the sun, and getting her engaged with raspberries and a humungous crazy vine I needed to pull out. After that she ate and was fine all afternoon (we had friends over) but as soon as they left she crashed again.

This was worse than usual, but not by that much. I am considering going to a no dairy/no soy/ no wheat diet for a while to see if that helps. A friend/parent says that casein, soy, and wheat all have chemical similarity and if she has a problem with one she may have a problem with all. Although this person has done a lot of research on this (and works as a health professional herself, in addition to having a child who is casein/soy/wheat free), I am currently trying to track down a primary source can give more information about this. If anyone has leads, please let me know.

In the meantime, we continue with the dairy and may try the full hypo-allergenic diet just because the cost of doing that for 3 weeks or a month is low, and if it helps enough to justify the diet change, it certainly ought to be obvious! In the meantime I will do my best to provide her with the comforting, calm presence she needs. It’s not hard when I think of how confusing and difficult this must be for her. After all I’ve been through the confusion of an unknown, misunderstood dragging problem myself, and I was lucky enough to be 34 instead of 4.

7 thoughts on “Lost

  1. Hi, just read your blog. I have a 14 year old son, who was diagnosed with Lyme two years ago. He went for 6 years with severe mental/emotional/physical problems before they hit on Lyme. Having the same problem with him. At least at 4 she could not have had it that long and you are not dealing with an intolerant school system. We are at wits end, b/c he is not able to go to school, for days, weeks, months on end. Fear child services will intervene. Looking to see what adults do when lyme makes it impossible to work. Any thoughts or contacts for us? Thanks

  2. Just thought of something else. I was told that the emotional interaction is not cause by the Lyme alone, but is almost always bartonella, a common co-infection. Has she been tested for co-infections? Doubt food could be doing this (maybe…but if she is Lyme positive, look there first). Should do the Fry test for co-infections. Don’t waste time with diets. We tried everything in the book; nothing worked, and if it is co-infection, all the mind altering drugs the p.docs will give you will not work (believe me, we know…name a drug). Have to treat it specifically.

  3. My eye specialist has a son who had emotional problems to the point in junio high that he was removed from the home and place in a center for kids with behavior problems…turns out it was Lyme Disease and once he was treated he was stable again. I know you have already talked about her possibly having lyme…..I am so sorry you and especially your sweet daughter has to go through this. So young to understand….Lifting you all up in prayer today.

  4. Thanks to everyone for your suggestions & kind thoughts! We took her to the pediatrician, and it turns out that there was a simple thing to try first — she had a lot of stool backed up. The hypothesis is that this may be chronic constipation. Treatment is easy, and we should know within a week. I’m keeping my fingers crossed! However thanks for the thoughts on the co-infections. I will add this to my list if this doesn’t work :(.

  5. Hi, I’m so sorry you and she are going through this. My 6 year old has congenital lyme, babesia and probably Bartonella. Off of antibiotics, he’s a mess. he is wheat, dairy, corn and soy free. His lyme pediatrician wouldn’t treat without the diet. We saw huge progress in the first few months on the diet. It is a pain. My son only had positive blood results for casein, but the doc says you remove one, and they get intolerant to the next one. Some kids, the diet helps immensely, other kids not so much. When my Bartonella flares, my even keel goes out the window and everything is dark, depressing, scary and overwhelming. Once it’s back under control, I’m smiling laughing and letting things roll off my back once again. So the fairy dying thing, reminds me a lot of my Bartonella flare/herx days.

    My son is bordeline psychotic off of the diet. He has no impulse control, no frustration tolerance, cries at the drop of a hat, and loses cognitive abilities.

    On Lyme meds and the diet, he is a wonderful, sweet, decently well-behaved kid.

    My humble opinion, take it or leave it, would be: (Ask her doc obviously) Try the diet, try some bartonella treatment, add a good probiotic, fish oil and something for yeast maybe- Nystatin is good, as it’s not absorbed and not too hard on the body.
    Good luck to you with everything.

  6. Gosh, so sorry to hear about your daughter. I’ve been traveling the Lyme/coinfection route with my children for 4 years. It has been very tough on our family.

    My youngest has had severe GI symptoms. She had pain like someone was cutting her open with a knife. We had to call 911 a couple of times because it was so severe. The ER docs told us that she was constipated and needed more fiber and water. Yeah, sure. If only it was that easy.

    My daughter went through every GI test known to man. Ultimately (thanks to the LLMD) the tissue samples from her endoscopy were sent to Clongen and tested positive for B. burgdorferi (Lyme). But note that a negative test result does not rule out Lyme or coinfections. She has been treated for Lyme and in the meantime was also clinically diagnosed with Bartonella. CT scan of her abdomen showed mesenteric adenitis, which is a symptom of Bartonella (BTW, not one single ped GI doc we consulted with knew this. A LL peds GI doc and a LLMD told us that this was a classic sign of Bartonella.)

    Fast forward she is now being treated for Bartonella. In retrospect, many of her symptoms correlated to Bartonella as well as Lyme. The Bartonella treatment is causing a major herx. It is tough to watch her go through so much as she has already been through hell and back. But if this treatment can finally rid her of abdominal pain we have to give it a try. She also has headaches, dizziness, nausea and other symptoms, but the worst one by far is the abdominal pain.

    Given your daughter’s symptoms, I strongly suggest that she be evaluated for Bart by a LLMD.

    And I am so sorry that she and you are going through so much. It is so hard to see our children suffer.

    FWIW, we did dairy-free for awhile and it made no difference. Going gluten-free is much more challenging. We tried and it lasted for all of 2 days.

    We ordered the Enterolab stool test/DNA cheek swab for Celiac. Cha-ching. But it is supposed to be very accurate. If it comes back that my daughter is predisposed to celiac or has the DNA marker then I will get serious about eliminating gluten.

    Sending prayers to you and your little one. Know that you are not alone. And remember that this too shall pass.

  7. Have you considered getting an IgG (immunoglobulin) test for food intolerances? I was tested by the standard “skin scratch” for allergies and nothing came up. I am now waiting for my results from a lab called Immuno Labs, and apparently one can have severe food “intolerances,” that wouldn’t necessarily be considered an allergy. I am also waiting my test results from Igenex for lyme, babesia, and bartonella. But I will say that certain foods are making me very sick right now, and I am sure it is because whatever bacteria is lurking in there is making me way more vulnerable to things I never reacted to before. Just a thought. I am sorry to hear your little one is suffering and send support and understanding.

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