What Congentital Lyme looks like - My 3 year old's Symptoms and Treatment Protocol Part I.

My four year old 'J' gave me the highest compliment a mother can get from her child yesterday. She said, "You are the best Mommy that I ever have", to which I replied, "Well that's good because I am the only mother you have. She then said, "Yeah, because you are the only Mommy that I ever remember coming out of ". I laughed super hard at that, which confused her, but I also had a twinge of rue because, even though I was blessed that I got to have my two children, I have also infected them with congenital Lyme, Babesia & Bartonella and the hell that comes with all of that.

A little background on my 3 year old and my pregnancy with her:
My 4yr old was full term plus a full agonizing week. I was really sick, constant migraines, and in a lot of pain throughout my pregnancy with her. I was also an anxious mess because I had lost two babies, back to back – the second loss (13 weeks) happened the day before my husband and I got married, which is a real sucky way to start out one’s marriage let me tell you – and had insomnia through the roof: I would lay awake all night watching episodes of “Emergency Deliveries” on the women’s channel and sobbing my eyes out.  I had a grueling delivery with her that lasted 36 hours and ended up in an emergency C-section because of a failure to progress – I never dilated past 2-3 cm.  The C-section was like a scene from a torture, horror film.  They screwed up the epidural so I felt almost everything as I had little to no anesthesia for more than ½ of the C-section or the removal of the cyst on my remaining ovary.  I also ended up with extensive nerve damage and a rotator cuff impingement from them holding down my arms down while I my body jerked from the horrific pain.  ‘J’ came into this world screaming a scream of complete agony and distress that no newborn should know; she was screaming before they even plucked her out from my womb.  Her Apgar score was good and she was considered a ‘healthy’, albeit miserable, baby.  She cried constantly for the first 4 months of her life.  She nursed okay and didn’t sleep more than 1-2 hours at a stretch for the first several months and never more than 4 hours for the first 2 ½ years.  I became extremely depressed and anxious, developed severe post partum depression and anxiety and PTSD, as a result of the birth, and needed to go on medication so I stopped nursing her at 4 months. 

To date her symptoms have been and are:
Severe eczema (accompanied by bleeding sores and pustules that would take days/weeks to heal, since we have eliminated all the foods that we know she is allergic/sensitive too her skin has almost completely cleared up and only flares if she accidentally touches or ingests something she has issues with), reflux/GERD (we eventually had a endoscopy/sigmoidscopy to rule out Celiac and biobsied some of the tissues which came back pretty normal with just some scarring in her esophagus from the reflux), extensive food and environmental allergies (she had an anaphylactic reaction to her 6month booster and she is allergic to over 40 foods, probably more, but we don’t introduce anything new to her anymore, she also gets a sun rash, every spring, when she is first exposed to the sun after wintertime), sugar sensitivity (if she has processed sugar she gets crazy hyper and the sugar crash sends her into an emotional tailspin, pure apple juice can even make her seem like she is drunk), constant stomach aches (after eating & from chronic constipation – her stomach aches have intensified since starting abx), chronic constipation (we give her daily prune juice and try to push fluids but it only helps minimally), recurrent otitis media, ear infections & itchy drainage (we are on our 3^rd set of ear tubes and her ear infections have been better since having them put in), severe insomnia (much worse since starting abx and she is terrified to go to sleep because of her nightmares), nightmares/night terrors (since she was about 1yr), night sweats (general temperature irregularity), sound and light sensitivity (cannot tolerate loud sounds or bright lights, light intolerance has increased since starting abx), sensory processing disorder (can’t tolerate food if it has more than one texture, clothes need to be soft & she can’t tolerate having her skin touched because it is irritating & painful to her),  chronic general illness (constant colds, etc, although hard to tell because kids get sick a lot when they are young, since starting abx she rarely gets sick), sleep apnea from enlarged tonsils and adenoids (she was constantly stuffed up and we finally had them both removed this year and it has helped tremedously with the sleep apnea, sinus congestion, and eye drainage), gross motor delay (she did not roll over, or sit up, or crawl but did start walking, unsteadily, at a year), Hypotonia (she has leg weakness and episodes of severe falling whenever she would walk or run – this has gotten a lot better since starting the abx), blocked tear duct and constant eye drainage (her right eye was slightly shut from birth - possibly due to her being jammed in the birth canal for so long - and drained tears constantly and irritated her skin and eye, we eventually had Nasolacrimal Duct required surgery to open up the eye duct), extreme emotional meltdowns (she has constantly 'hurt feelings' and it takes a really, really long time for her to calm down when she gets upset), overly frustrated easily (she will even bite or hit herself when she can’t deal with what is upsetting or frustrating her), word finding difficulty (almost stutters trying to find the word she is trying to say and has gotten worse with tx), chronic anxiety (she still uses a nuk, and masturbates a lot, at nap and bedtime to relieve her anxiety, and so she is able to get to sleep – we try not to make a big deal about it but it is concerning because she rubs herself to the point of being raw and getting yeast infections and vaginal rashes.  Our pediatrician also agrees that it is a bit excessive but to just let her be if it helps her relax), low grade fevers (99.1-99.5), facial eye squint and shoulder shrugging tics (that developed around the same time as the leg weakness and got better with abx, she now only gets the tic when she has herxes or is stressed), odd cough (that developed out of the blue but has gone away since starting abx), chest pain (since starting abx she has been complaining of chest pain, heart always sounds good with check-ups), migrating body and head pain (she has been complaining of body/head pains since starting abx), extremely sensitive scalp (she will cry in pain whenever we have to comb/brush her hair), J had a visible seizure on December 7th and the neurologist thinks she has Benign Rolandic epilepsy.  Luckily we wont have to medicate her unless she has another siezure).  There are probably more symptoms that I am forgetting so I will update as I remember them.  At any rate, this is a lot for one little kid to live with and it breaks my heart that she is in constant discomfort.  She has recently started to talk about death and blood a lot lately.  Not sure where this is coming from and it is worrisome.

Currently her antibiotic and supplement regiment is:
Nystatin (for yeast) – 5ml 3x day, we used to do 4ml 4xday but LLNP wants to see if the Nystatin before bed was making her insomnia worse.  Clarithromycin – ½ tsp 2xday, Ceftin – ½ tsp 2x day, 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), Melatonin - .4mg at bedtime (I use ZarBees cough syrup because it has a very small amount of melatonin in it, and because there is a risk that melatonin in doses of 1-3mg may ‘lower the seizure threshold and increase the risk of seizure, particularly in children with neurologic disorders’. Our LLNP originally prescribed 1mg of melatonin at bedtime for J, for the insomnia, but when she had a seizure after 2 days of giving her melatonin and so we decreased the dose in case that was what had been the cause of her seizure), Liquid Calcium with Magnesium – 1 tbsp 1x day (Childlife brand).

Upcoming changes in our protocol:
Supplements: soon I am going to introduce and add Inflamma Response (Herb Pharm brand), and try to figure out how to get her to start taking Milk Thistle (Eclectic Institute fresh freeze-dried seed meal brand – I will probably try to break open the capsules and put mix it with a tsp of honey to get her to eat it since she can’t swallow the capsules and hates the taste). 

ABX: we are going to stop the Clarithromycin and Ceftin and start targeting the Babesia.  Her new abx protocol will be; Azithromycin – 1tsp 1x day and Mepron – ½ tsp 2x day.  We will start this in January, after her birthday, because I want her to have a good time and not worry about her herxing. 

Upcoming changes in our diet:
Since we are already so limited with foods because of my girls’ food allergies we haven’t been gluten free, but we will start our gluten free diet in January after my daughter’s birthday.  We will also be making a greater effort to eliminate ALL processed sugar in our diets (we don't really do much now because of my daughter's sugar sensitivity) but will allow the kids to have sugar and gluten for special occasions and family holidays. 

Detox:
So far we have only been doing Epsom salt baths for detoxing.  I would love to figure out more things I can do for my kids for detoxing.  Just found some lavender Epsom salt and it is very nice smelling and the kids love it.