So by the time I got pregnant with my 2nd (they are 23 months apart) I was convinced I was completely insane and I was not coming back. I still did not know I had Lyme at this point. I was so very sick, and every doctor I went to gave me a new diagnosis and/or kept telling me it was all in my head and referring me back to a psych doc. There were a lot of people, including me, who were appalled that I would get pregnant again in the state I was in - one aunt even told me to abort my 2nd child. However, my daughter, 'A' honestly could have been an immaculate conception, that is how often my husband and I were even intimate...ONCE since the birth of my 1st child, and I got pregnant! Even so, I was happy that we were going to have another child. Being an only child I did not want that for my daughter but, after 'J's horror of a delivery, and the issues that ensued, I really didn't think I could bring myself to have another child so I am so blessed that it happened. Ironically, as the pregnancy hormones surged, I started to feel better (even though I was pregnancy sick as a dog) and all of my psychiatric symptoms just melted away. I even had some energy for the first time in 2 years. She was due December 1st but I went into early labor on Halloween. Luckily they were able to stop the labor and she ended up going a week past her due date. I had back labor pains with both my kids, and again was in labor about 26 hours with failure to progress. This time I knew better and wouldn't let them give me Pitosin and eventually I elected to have a C-section before either the baby or I got too stressed from the prolonged labor. I was TERRIFIED to have another C-section, after having one with no anesthetic, but they got the epidural in right and everything went a lot better the second time around. She was a fussy baby that didn't sleep much and when she was unhappy she would rage like no baby I had ever seen. People would comment on how loud she could cry. Other than the rages and reflux and bad sleep she was a happy baby in comparison to my 1st. Since I was doing so well mentally, after her birth, I was not on any psychiatric meds and was able to breast feed her for 16 months until I found out I had Lyme and was infecting her with my breast milk. She did not want to stop nursing and it was really hard on both of us; I am still crazy sad that I had to stop.
To date her symptoms have been and are:
Reflux/GERD (since we had no luck with any of the reflux meds with my 4yr old we didn't even bother getting her tested or give her any reflux meds. She was worse when I had dairy so I stopped dairy while breastfeeding and it got much better), labial fusion (at about 6 months her labia fused together over her urethral opening and we had to use progesterone cream to open it back up. I have a suspicion that it was from the irritation of baby wipes, that we were trialing from Costco, and it paired with the systemic inflammation from the Lyme), chronic yeast infections (she has had problems with yeast since she was a newborn, and we have to use clotramizole a lot on her vagina to keep it at bay), bouts of frequent and painful urination (she will grab at her vagina and say 'owie', and each time this happens we get her tested for UTIs but it always comes back negative), food allergies (to dairy, nuts & wheat; she could have more food allergies but we are on such a strict diet for J that A doesn't get exposed to a lot of foods so we don't know - luckily she did not have the eczema that my 1st had from her food allergies), chronic constipation (we give her daily prune juice and try to push fluids but it only helps minimally), rages, (I am not sure I could even describe the intensity she had when she was upset - even as a tiny baby - but it wasn't normal), itchy ears/drainage, (luckily she has had only one bad ear infection but her ears bother her often and every time I bring her in they are fine), sound and light sensitivity (cannot tolerate loud sounds or bright light, she will shield her eyes in sunlight and say, 'hot, hot'), nightmares/night terrors (which caused her to wake a lot in the night crying, since starting abx they seem to have diminished), night sweats (general temperature irregularity - both my kids can sleep in a t-shirt with a fan on them all night with no blankets), stomach aches (some from
the constipation and some from the abx),
insomnia/frequent night waking (as a baby she never slept more than 2-4 hours until she was about 18 months and still comes into our bed every night, both of my girls do. I know it is a big parent no-no but they need all the comfort they can get so we don't force them back into their own bed), sensory processing disorder
(can’t tolerate food if it has more than one texture, A doesn't seem to have the same level of hypersensitivity that my 4yr old, J, does, I can actually rub her back and touch her skin without her feeling any physical discomfort; not being able to touch my 1st baby (J) was really hard for me so I was over the moon to be able to lavish physical affection on my 2nd because she could tolerate it), recurrent bouts of high fevers (since a few months old she would get these prolonged fevers, about 102-103, out of the blue, that would last 5-7 days without any other symptom. One time she developed a Petichial rash during a bout of fever and, fearing meningitis, we brought her to the ER for a CBC but it came back as a viral infection, not bacterial. The high bouts of fever have stopped since starting abx), plugged sinuses (she is always stuffy at night when sleeping, I use a lot of Vicks to keep her sinuses open, so she can sleep better, and we have a cold air humidifier in their room which also helps), mild Hypotonia (as a baby she was a lot stronger than J - she was as sturdy as a mountain goat - but around 18 months had some episodes of leg weakness and falling, just like J, but it seems to have gotten better since starting the abx), bad separation anxiety (the odd thing about this is that, she not only freaks out when my husband or I leave the room, or leave her in the care of someone else, but freaks out big time if ANYONE leaves the room - even a pet - or leaves our house after visiting. She gets very upset and lays down on the floor and sobs - it is really heart breaking), general anxiety (she has a lot of fears of different things, some common like the vacuum and toys that move by themselves, but if she gets afraid of something, and/or has a bad memory about something that happened, she will obsesses on it daily for weeks to months ,and will get visibly upset as if it just happened, low grade fevers (99.1-99.5 since starting the abx. Every time I think she has a fever, or she is really flushed, her temp is always really low), OCD issues (examples: she would pull out a hair every time I changed her diaper, a need to wash her hands a lot, needing her blankets just so, and even, across her back and folded over her arms just so or she will freak out for as long as it takes to get it just right. She gets fixated on things - like needing a specific toy or baby doll and will be agitated and will not stop until she gets what she wants/needs - it is more intense than normal toddler gimmes, migrating body pain and headaches (she has been complaining of arm and leg pain since she first learned to talk and could say 'owie', we thought that they may be growing pains but our pediatrician said that growing pains don't start until the age of 6. Since finally getting her on an abx regiment, that she can tolerate, she doesn't complain of pain unless having a herxy flare up), extremely sensitive scalp (she will cry in pain whenever we have to comb/brush her hair).
There are some I am missing but will update when I remember them- I love having a Lyme brain!
1/2 of these symptoms she has had since birth and the other 1/2 she developed what seemed to be overnight. Even with all these symptoms she seems to be a pretty happy kid, and if she had been my 1st child I would not have suspected anything was really 'wrong', and chalked it all up to normal, weird, childhood issues. She is the only one of us that is CDC positive for Lyme, and I suspect that she has a higher Lyme load than 'J' because I breastfed her longer (only 4 months with J) and she was getting the bacteria from my breast milk. 'A' has Lyme, Bartonella & Babesia. I am worried about PANS/PANDAS with her, and I guess with my other daughter as well, but there is a part of me that doesn't even want to know because it is all so overwhelming already.
Currently her antibiotic and supplement regiment is:
Nystatin (for yeast) – 4ml 4x day, we
had a really hard time getting her up to a full dose because it caused her to have multiple, massive whitish colored poops and her but was so raw after awhile. It also seemed to cause her to have an upset stomach. We had to stop and start several times and eventually go really, really slow in increasing the dose. Clarithromycin – ½ tsp 2xday, Amoxicillin-5ml 3x day. She was on Ceftin – ½ tsp 2x day but could not tolerate it. We tried to do it twice and after only a day or two I had to stop because she had such bad mental aggitation (upset and crying constantly) and inability to sleep from the bad bowel upset, Cod liver oil - 1 tbsp 1x day (Nordic
Naturals Omega-3 brand), Multi-vitamin (Animal Parade Gold
brand), Vitamin C (Co-op brand
crystal powder C so it goes right into the blood stream and is more effective
than the chewables. It is a bit tart so I mix it with honey and apple juice), Probiotics – 20billion 2x day (DDS
Probioplus brand, we give it to her ½ hour before breakfast and at bedtime on an
empty stomach and my kids don’t mind chewing the capsules up as they can’t
swallow them yet).
Detox: Epsom salt baths. I am going to start giving my kids more lemon juice, and figuring out a way to get them to ingest the milk thistle or dandilion tea. After the 5th of January we are going to cut out all gluten and as much processed sugar as possible.
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