Just received a call from Rhinebeck Health Center that Dr. Kenneth Bock has an opening this Friday, April 1st. I had asked that the office put my daughter on the cancellation list. This appointment is much sooner than the May 17th appointment originally booked. We are taking it.
Do you remember Dr. Bock is the physician who discovered and diagnosed the Babesiosis? With the same symptoms returning, I wonder if he will look to rerun the Babesia FISH test. I wonder what he'll think about the flying squirrel problem in our house and that flying squirrels are known vectors for the Rickettsia bacteria. At the very least, it feels comforting to know that he will not discount these strange occurrences and rare illnesses but instead take a keen look at her history.
Will have to reschedule this Friday's newly-booked appointment with the new hematologist from MGH.
We see an infectious disease specialist at MGH on April 29. When I called to speak to someone in the department, it was reassuring that a) someone actually picked up the phone b) took an interest in my daughter's complex case c) kept asking questions to develop a full intake over the phone d) gave us the first available appointment and e) put us on the cancellation list.
This all begs the question: why does Floating believe her low platelets are due solely to Chronic ITP? Did they not see the lab results? My daughter has all the symptoms of Rocky Mountain Spotted Fever and Typhus Fever. Is is so far fetched she could have this? Could the numerous IVIG treatments have given her the very antibodies to her neutrophils and platelets that are causing their destruction? Why didn't Floating call in Infectious Disease back in 2004 when this all started? We don't expect to waste our energy pursuing these questions legally. It is what it is. But it is noteworthy.
So, it's good to get second....and third....opinions in life.
It's also good to never stop believing in your gut.
Hope to get some answers this Friday. At the very least I know we'll be taken seriously by Dr. Bock.
Wednesday, March 30, 2011
Tuesday, March 29, 2011
Fever gone this morning - so baffling
She awoke without any of the symptoms from last evening.
No fever, no headache, no eye pain.
Went to school.
We will check her temperature again this evening.
No fever, no headache, no eye pain.
Went to school.
We will check her temperature again this evening.
Monday, March 28, 2011
Low Platelets - or something else - new infection
OK. So the latest episode started two nights ago, March 26th.
She went out Saturday evening, March 26, with friends and returned home to pretty significant sciatic pain (1-10, 1 being lowest, 10 being highest) of Level 7. Really painful in her right leg. I massaged her leg to alleviate the pain. The pain traveled from the middle of her back to the top of her right foot. Nothing relieved the pain except for a massage---and that was just temporary.
Today is Monday March 28. She went to school, had a good day, took a late afternoon nap, and then reported not feeling so well after dinner. She took her temperature. It was 99.3 degrees. She has a headache that starts over her right eye and travels up and around the upper right quadrant of her head. She feels hot and cold and achy all over. No other symptoms. Nothing to explain the fever.
Floating Hospital has back-burnered her case. We talked with her previous pediatrician last Friday, March 25. He agreed we need a second opinion. He recommended Dr. Mark Pasternack, a Pediatric Infectious Disease specialist, at Massachusetts General Hospital. I will call tomorrow morning to get the first available appointment with him.
I wonder what level her platelets are. Last they were checked they were at 148. Now with a fever and infection they probably have come down.
She went out Saturday evening, March 26, with friends and returned home to pretty significant sciatic pain (1-10, 1 being lowest, 10 being highest) of Level 7. Really painful in her right leg. I massaged her leg to alleviate the pain. The pain traveled from the middle of her back to the top of her right foot. Nothing relieved the pain except for a massage---and that was just temporary.
Today is Monday March 28. She went to school, had a good day, took a late afternoon nap, and then reported not feeling so well after dinner. She took her temperature. It was 99.3 degrees. She has a headache that starts over her right eye and travels up and around the upper right quadrant of her head. She feels hot and cold and achy all over. No other symptoms. Nothing to explain the fever.
Floating Hospital has back-burnered her case. We talked with her previous pediatrician last Friday, March 25. He agreed we need a second opinion. He recommended Dr. Mark Pasternack, a Pediatric Infectious Disease specialist, at Massachusetts General Hospital. I will call tomorrow morning to get the first available appointment with him.
I wonder what level her platelets are. Last they were checked they were at 148. Now with a fever and infection they probably have come down.
Friday, March 18, 2011
Doctors are chalking up her low platelets to Chronic ITP, but we think it's Rickettsia related
So two days ago we saw the hematologist, the lead in my daughter's case. He quickly reviewed the lab results from the 15 tubes of blood drawn the previous week from the rheumatologist's orders. He didn't see that the Rickettsia Antibody Panel with Reference to Titers had indeed been ordered (my insistence with the Rheumatologist) and that these abnormal results were returned:
RMSF IgG Detected Abnormal
R. ricksettii (Rocky Mountain Spotted Fever)
Rickettsia (Typhus Fever)
R. typhi IgG Detected Abnormal
Her platelet count has now dropped to 148. Recent platelet counts are:
2/16/2011: 260
2/28/2011: 234
3/8/2011: 158
3/16/2011: 148
The hematologist has concluded she has Chronic ITP and has stopped searching for a different cause for her low platelets.
Also, the Epstein Barr Virus PCR lab result returned high
Reference level is < 200
My daughter's level was 10812.
We are pleading with the hospital to get her seen by the Infectious Disease specialist. Spoke today with the secretary of Hematology who arranged an appointment with ID two months out. Told her that was unacceptable, given the lab results. Waiting for calls from Infectious Disease (I called him again today) and Hematology and Rheumatology to follow up on the lab results and to get her seen by ID.
Checking out other options: MGH and Children's Hospital in Boston. Also booked an appointment in May with Dr. Bock (the physician who discovered her Babesiosis.)
My hunch is that the tick that bit her and caused the Babesiosis also carried Rickettsia or she was bitten by the tick and then contracted the Rickettsia from the flying squirrels in our house.
This is all just so exhausting......but I will never give up.
RMSF IgG Detected Abnormal
R. ricksettii (Rocky Mountain Spotted Fever)
Rickettsia (Typhus Fever)
R. typhi IgG Detected Abnormal
Her platelet count has now dropped to 148. Recent platelet counts are:
2/16/2011: 260
2/28/2011: 234
3/8/2011: 158
3/16/2011: 148
The hematologist has concluded she has Chronic ITP and has stopped searching for a different cause for her low platelets.
Also, the Epstein Barr Virus PCR lab result returned high
Reference level is < 200
My daughter's level was 10812.
We are pleading with the hospital to get her seen by the Infectious Disease specialist. Spoke today with the secretary of Hematology who arranged an appointment with ID two months out. Told her that was unacceptable, given the lab results. Waiting for calls from Infectious Disease (I called him again today) and Hematology and Rheumatology to follow up on the lab results and to get her seen by ID.
Checking out other options: MGH and Children's Hospital in Boston. Also booked an appointment in May with Dr. Bock (the physician who discovered her Babesiosis.)
My hunch is that the tick that bit her and caused the Babesiosis also carried Rickettsia or she was bitten by the tick and then contracted the Rickettsia from the flying squirrels in our house.
This is all just so exhausting......but I will never give up.
Tuesday, March 15, 2011
The Medical Mystery Continues -- Chronic ITP? Babesiosis? Epidemic Typhus?
My 17-year-old daughter has a complex medical history. Let's just start with that.
She has a team of specialists at Floating Hospital for Children in Boston, and not one of them has diagnosed her case yet.
It all began when she was 10 years old, with gastrointestinal complaints. The specialist began ordering tests, the common CBC one of them. It was discovered she had low platelets (thrombocytopenia.) For four years she was infused multiple times with WinRho and IVIG to raise her platelets. She was diagnosed with Chronic ITP (idiopathic thrombocytopenic purpura). One long-term solution was a spleenectomy. Thankfully, my husband and I shelved that one as it seemed too drastic. Good thing.
Her platelets seemed to resolve when she was 14. She then complained of not being able to pay attention. We had a private neuropsychological evaluation done by a psychiatrist. He diagnosed her with inattentive ADD and dysgraphia. We sought help from a world-renowned physician, Kenneth Bock, who was successfully reversing Autism, ADHD, Allergies and Asthma in children. It took 6 months to get an appointment with him. After running numerous lab tests, he decided to run a Babesia FISH test because in addition to the ADHD sysmptoms he knew she had a chronic infection. The lab confirmed Babesiosis with a positive result. She was treated twice before a negative lab result returned. Good thing we didn't remove her spleen because Babesiosis is fatal for splenectomized patients. Always good to follow your gut.
All other symptoms (unrelated to the Chronic ITP) --- headaches, backaches, stomachaches, unexplained and recurring fevers, achey skin, constipation ---- all were eradicated after being treated for the Babesiosis. That is ---- for four years.
Two months ago she began feeling ill again. First we thought it was a viral URI. Then two weeks later she suffered severe menstrual cramping. Then a week later another infection. Here are the weird symptoms:
So she received IVIG to raise her platelets. She is now being seen by Rheumatology because of antibodies not only against her platelets but also to her neutrophils. She also has had anticardiolipin antibody and antiphospholipid antibody seen in her blood.
Rheumatology is rerunning the classic ANA test for Lupus, which has been negative in the past.
The doctors are perplexed. Her blood anomalies don't fit any known disease. If she has Chronic ITP why is she producing the other antibodies?
Oh, and by the way, we had Flying Squirrels nesting in our chimney and in our house. Google research pointed me in the direction of Epidemic Typhus caused by the bacteria known as Rickettsia prowazekii. The results for that test are still pending.
Anybody out there who has a similar story to tell or who can shed some new light?
She has a team of specialists at Floating Hospital for Children in Boston, and not one of them has diagnosed her case yet.
It all began when she was 10 years old, with gastrointestinal complaints. The specialist began ordering tests, the common CBC one of them. It was discovered she had low platelets (thrombocytopenia.) For four years she was infused multiple times with WinRho and IVIG to raise her platelets. She was diagnosed with Chronic ITP (idiopathic thrombocytopenic purpura). One long-term solution was a spleenectomy. Thankfully, my husband and I shelved that one as it seemed too drastic. Good thing.
Her platelets seemed to resolve when she was 14. She then complained of not being able to pay attention. We had a private neuropsychological evaluation done by a psychiatrist. He diagnosed her with inattentive ADD and dysgraphia. We sought help from a world-renowned physician, Kenneth Bock, who was successfully reversing Autism, ADHD, Allergies and Asthma in children. It took 6 months to get an appointment with him. After running numerous lab tests, he decided to run a Babesia FISH test because in addition to the ADHD sysmptoms he knew she had a chronic infection. The lab confirmed Babesiosis with a positive result. She was treated twice before a negative lab result returned. Good thing we didn't remove her spleen because Babesiosis is fatal for splenectomized patients. Always good to follow your gut.
All other symptoms (unrelated to the Chronic ITP) --- headaches, backaches, stomachaches, unexplained and recurring fevers, achey skin, constipation ---- all were eradicated after being treated for the Babesiosis. That is ---- for four years.
Two months ago she began feeling ill again. First we thought it was a viral URI. Then two weeks later she suffered severe menstrual cramping. Then a week later another infection. Here are the weird symptoms:
- cycling fever (not too high but only at night - fever breaks in the morning)
- skin rash
- headache
- skin and muscle aches
- cough
- low platelets (35,000)
- eye pain (just the right eye, but painful to avert her eye)
So she received IVIG to raise her platelets. She is now being seen by Rheumatology because of antibodies not only against her platelets but also to her neutrophils. She also has had anticardiolipin antibody and antiphospholipid antibody seen in her blood.
Rheumatology is rerunning the classic ANA test for Lupus, which has been negative in the past.
The doctors are perplexed. Her blood anomalies don't fit any known disease. If she has Chronic ITP why is she producing the other antibodies?
Oh, and by the way, we had Flying Squirrels nesting in our chimney and in our house. Google research pointed me in the direction of Epidemic Typhus caused by the bacteria known as Rickettsia prowazekii. The results for that test are still pending.
Anybody out there who has a similar story to tell or who can shed some new light?
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