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9 Year old with TM NMO or ?

Hi - I am new and this is my first time posting, actually on any forum but I am at wits end.  I have a beautiful 9 year old daughter whose life has changed drastically at the first for this year.  Prior to she was on an ice hockey team my husband coaches, did karate, cheer, rode her quad through the farm and played hard with her 15 year old brother.  Rough and tough under the frilly skirt kind of kid.  New Years eve she got sick and her life changed.  It started as a fever I took her to dr. few days later and they gave her tamiflu.  On Monday 1/6 her cough was more wet so I took her back, but no fever, etc..  Chest xray and bloodwork showed walking pneumonia in left lunch and IGG of 5073 (from what I understand this is extremely high)  Zpack and home - When she finished this I sent her to school for 3 days.  She had no cough or other symptoms just complaining of headache, sore legs and so very tired.  On the 3rd day I brought her for recheck and she was admitted for the walking pneumonia.  Zithro and rosefen were given IV along with prednisone and 2 days later she was sent home with oral meds to finish.  A week later - the day after she finished her meds (which there was no improvement in her energy, and she really was not coughing, congested, etc that I saw) she had a fast and hard onset of severe lower right back pain.  I thought it may be a uti or kidney from all the meds (shes 9 and private) so gave her cranberry juice for a day, rested her and warm bath.  Pain was worse.  We packed our bags and went back to dr. who admitted us with possible appendicitis?  She had no fever, vomiting, etc.  OK - now it gets lengthy and I will shorten as much as possible without leaving important info out.  We were admitted, ultrasounds all came back negative, and her feet got "wobbly" - A lower lumbar MRI came back negative.  She was transferred to our local larger childrens hospital where she was ID and Neuro.  They did another full spinal MRI with contrast, LP and pain management (at this point morphine at night - she couldn't sleep)  The day we were transferred her legs weakened so much she could not stand and was wheelchair bound.  She was put on ciproflaxin for the infection and prednisone.  All tests came back negative and she was diagnosed with mycoplasma neuropathy and I was told it would take a while for her to heal but she would make a full recovery.  We were there 12 days and released on 2/3 with more cipro and prednisone which did help with the leg strength and she came home on crutches, and walking normally about a week later.  When we tapered off the prednisone the back pain again got worse (going to sleep around 1 am every night because of pain) They started her on gabapentin, did a recheck on the IGG which was 3900 (still really high) and did another MRI where it came back negative.  Another neuro gave us Gabapentin and it really had no pain relief - we went up to 1200 mg a day (shes 56 lbs) and prednisone seemed to do nothing. She was given nytriptiline at night which helped at first but now does nothing.  Neuro sent us to Rhemotologist - she had diagnosed her with fibromyalgia.  ID follow up bloodwork later showed IGG went back up to 4900 so she did 2 weeks of doxycycline.  This brought the level down to 3700 which the ID seems to think is good.  We have an appt. at Col Presb Childrens Hospital in NYC next week hoping for some answers.  In the meantime, my daughter has a tutor, has not attending school, chronic fatigue, car rides kill her because of the bumps, can't take a shower because of the pain so can only take baths, and is in pain.  She gets hot and cold, and burning sensations on her right leg and other oddities.  I'm in desperate need of a diagnosis that has some sort of plan and treatment for her so she can be relieved of the pain.  Everyone says "oh the nicer weather will help"  quite honestly, and I'm sure my daughter is not alone, it makes it worse.  As a child she realizes all the things she can't do and it's harder to have a playdate and ask a friend to come sit and watch a movie or play the wii for a little.  She wants to play.  Any input? suggestions?  I found NMO in my research and they did not do this bloodtest but are going to.  They have not done an MRI of the brain but she had one about 2 years ago for idiopathic short stature and it came back negative.  
1 Responses
Avatar universal
In my opinion, classic case of Lyme disease. Find a Lyme Literate Physician and educate yourself through support groups.  Lyme and Co-infections.
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