Ok so today we did the Blood test as requested by the Neurologist and started the 24 hour urine collections that will be turned in tomorrow. We will see the Neurologist next month for the results.
Lilly
Monday, August 18, 2014
Wednesday, August 13, 2014
Visit with the Infectious Disease Doctor
On August 13, 2014 we went and saw the Infectious Disease Doctor, it was a very long 2 hour visit with two Doctors. We went over Lilly's Medical History and it was concluded that they felt Lilly has no infectious disease.
The Doctors felt that other then Lilly's high ANA (inflammation Levels) she is a healthy kid, she has an obvious Auto Immune Disorder, but nothing they would consider as a serious condition at this time.
They did suggest a few things...
Based on Lilly's reoccurring Strep infections and her very large tonsil we should see a ENT, we should consider having her tonsils removed to prevent her from further strep infections and also this can clear up some of her other symptoms... such as her not sleeping well at night and tummy aches.
See a GI doctor to have her stomach checked out. Look into Auto Immune disorders in the Stomach area.
See a Dermatologist about the loss of pigment on her skin on her thigh, they felt it was most likely a fungus that caused this and gave us a medicated cream to put on for the next month.
Keep seeing the Oncologist / Hematologist and hope he will find out what type of Auto Immune Disorder she has....
Ok so David and I are soooo done with all these doctors appointments and tests, Lilly is sooo done with all of this too. So this is what we have decided to do...
We will see the ENT (ear nose throat) Doctor and have him look over Lilly's and get his opinion. If needed we will have her tonsils remove.
We will see the GI Doctor and get his Opinion on what is going on with her tummy.
We will see the Neurologist next month to see what the results are from the Blood test and Urine Test and what his opinion is.
Finally we will see Dr. Waseem (Hematologist/ Oncologist), he has already decided to slow down and give Lilly a break, so we will do follow ups every few months.
After all of the above, if we find an answer then GREAT!!! If not we are going to stop and give Lilly a break!!
I am working from home and Logan and Lilly will be home schooled, David and I have worked really hard at keeping Lilly away from sick people and have been able to keep her from getting sick so often. She is still having joint pain that we treat when she has flair ups.
So that's where we are at this point, still no answers... frustrated that Doctors tell us something is wrong but they cant figure out what it is...
The Doctors felt that other then Lilly's high ANA (inflammation Levels) she is a healthy kid, she has an obvious Auto Immune Disorder, but nothing they would consider as a serious condition at this time.
They did suggest a few things...
Based on Lilly's reoccurring Strep infections and her very large tonsil we should see a ENT, we should consider having her tonsils removed to prevent her from further strep infections and also this can clear up some of her other symptoms... such as her not sleeping well at night and tummy aches.
See a GI doctor to have her stomach checked out. Look into Auto Immune disorders in the Stomach area.
See a Dermatologist about the loss of pigment on her skin on her thigh, they felt it was most likely a fungus that caused this and gave us a medicated cream to put on for the next month.
Keep seeing the Oncologist / Hematologist and hope he will find out what type of Auto Immune Disorder she has....
Ok so David and I are soooo done with all these doctors appointments and tests, Lilly is sooo done with all of this too. So this is what we have decided to do...
We will see the ENT (ear nose throat) Doctor and have him look over Lilly's and get his opinion. If needed we will have her tonsils remove.
We will see the GI Doctor and get his Opinion on what is going on with her tummy.
We will see the Neurologist next month to see what the results are from the Blood test and Urine Test and what his opinion is.
Finally we will see Dr. Waseem (Hematologist/ Oncologist), he has already decided to slow down and give Lilly a break, so we will do follow ups every few months.
After all of the above, if we find an answer then GREAT!!! If not we are going to stop and give Lilly a break!!
I am working from home and Logan and Lilly will be home schooled, David and I have worked really hard at keeping Lilly away from sick people and have been able to keep her from getting sick so often. She is still having joint pain that we treat when she has flair ups.
So that's where we are at this point, still no answers... frustrated that Doctors tell us something is wrong but they cant figure out what it is...
Tuesday, August 5, 2014
Visit with the Cardiologist
Yesterday we took Lilly to see the cardiologist to make sure her heart is good, rheumatic fever can cause heart damage and if that is what she has had then they wanted to check for damage. Please Note ... it has not been confirmed that she had ever had rheumatic fever, it's just something the doctor is looking into as a possible diagnosis.
The cardiologist was very nice! First they did a EKG and then an ultrasound of Lilly's heart, he told us when he completed the ultrasound that she has a great heart, no signs of damage at all and does not think she has ever had rheumatic fever. So all good news!!!
But do to eveything she is going through the do want to do a follow up in one year to make sure eveything is still doing great.
Next the infectious disease doctor and blood work...
Lilly had to have her shirt off for the procedures and so I covered her with hearts to keep her privacy.
Friday, August 1, 2014
Visit with the Neurologist
Sorry for the long delay in posting this, there was a lot of information we needed to understand before we were able to inform everyone on what the Neurologist thinks he figured out.
We saw the Neurologist on the 24th of July. He is a great Doctor and asked a lot of questions.
We went over Lilly's medical history, every doctor she has seen and the number and types of test she has had done and the results we have.
One thing the stuck out to him was that Lilly just got over having Scarlet Fever, she was already on antibiotics for the Strep infections when it turned into Scarlet Fever.
In Lilly's history of illness, she has had strep throat many different times during this year of her being sick, (yes its now a year we have been going through this).
I have requested Lilly's medical records from her pediatrician to get an exact number of times she has had strep, I will let you know the number next week when I pick up the records.
The Neurologist explained to us the way strep works and the very nasty complications it can cause. He feels that Lilly's Diagnosis is Post-streptococcal complications and Rheumatic Fever.
Strep can spread to other parts of the body causing infections in
Rheumatic fever is most common in 5- to 15-year-old children, though it can develop in younger children and adults. Although strep throat is common, rheumatic fever is rare in the United States and other developed countries. However, rheumatic fever remains common in many developing nations.
Rheumatic fever can cause permanent damage to the kidneys and heart, including damaged heart valves and heart failure. Treatments can reduce tissue damage from inflammation, lessen pain and other symptoms, and prevent the recurrence of rheumatic fever.
So when you take in all this information, it sounds like we might have an answer to Lilly's health problems. It SUCKS that is all sounds so scary!!
Our Next Steps... we will not have a answer for 2 months if this is what she has or not. We have a lot more Doctors to see. Good News is there is a Treatment Program that might help Lilly (I will explain it at the bottom).
So First We have to wait 3 weeks to do some more blood work and a urine sample. We wait this long because what they are looking for my be altered by her most recent illness Scarlet Fever.
On August 4th we will see a Cardiologist, they will check out Lilly's heart and see if there is any damage to it.
On August 13th we see the Infectious Disease Doctor - Theses specialists have extensive training in all kinds of infections, including those caused by bacteria, viruses, fungi and parasites. Along with this knowledge comes a particular insight into the use of antibiotics and their potential adverse effects.
On August 15th Lilly will have Blood and Urine work done at the local lab.
I will also be running around getting all the results from all her test from that past, blood work, ultra sounds, x-rays and Biopsy results to bring back to the neurologist for a full review.
On Sept 23rd We see Dr. Waseem (Oncologist / Hemotologist) for Lilly's check up and more blood work.
On Sept 24th we will Finally go back and see the Neurologist and he will have all the results in and we hope to have an answer (man how many times have I said those words!!)
If Lilly does have Post-streptococcal complications and Rheumatic Fever, there is a Treatment plan called IVIG and it could be something that would help her. Here is some information on it Below...
OK Everyone, as you can see it is a lot of information... As always I will keep you all posted on Lilly and how she is doing and what information we find along the way. Thank you all for your support!!
We saw the Neurologist on the 24th of July. He is a great Doctor and asked a lot of questions.
We went over Lilly's medical history, every doctor she has seen and the number and types of test she has had done and the results we have.
One thing the stuck out to him was that Lilly just got over having Scarlet Fever, she was already on antibiotics for the Strep infections when it turned into Scarlet Fever.
In Lilly's history of illness, she has had strep throat many different times during this year of her being sick, (yes its now a year we have been going through this).
I have requested Lilly's medical records from her pediatrician to get an exact number of times she has had strep, I will let you know the number next week when I pick up the records.
The Neurologist explained to us the way strep works and the very nasty complications it can cause. He feels that Lilly's Diagnosis is Post-streptococcal complications and Rheumatic Fever.
Strep can spread to other parts of the body causing infections in
- Tonsils
- Sinuses
- Skin
- Blood
- Middle ear
Inflammatory reactions
Strep infection may lead to other inflammatory illnesses, including:- Scarlet fever, an illness characterized by a rash
- Inflammation of the kidney (poststreptococcal glomerulonephritis)
- Rheumatic fever, a serious condition that can affect the heart, joints, nervous system and skin
Rheumatic Fever
Rheumatic fever is an inflammatory disease that can develop as a complication of inadequately treated strep throat or scarlet fever. Strep throat and scarlet fever are caused by an infection with group A streptococcus bacteria.Rheumatic fever is most common in 5- to 15-year-old children, though it can develop in younger children and adults. Although strep throat is common, rheumatic fever is rare in the United States and other developed countries. However, rheumatic fever remains common in many developing nations.
Rheumatic fever can cause permanent damage to the kidneys and heart, including damaged heart valves and heart failure. Treatments can reduce tissue damage from inflammation, lessen pain and other symptoms, and prevent the recurrence of rheumatic fever.
So when you take in all this information, it sounds like we might have an answer to Lilly's health problems. It SUCKS that is all sounds so scary!!
Our Next Steps... we will not have a answer for 2 months if this is what she has or not. We have a lot more Doctors to see. Good News is there is a Treatment Program that might help Lilly (I will explain it at the bottom).
So First We have to wait 3 weeks to do some more blood work and a urine sample. We wait this long because what they are looking for my be altered by her most recent illness Scarlet Fever.
On August 4th we will see a Cardiologist, they will check out Lilly's heart and see if there is any damage to it.
On August 13th we see the Infectious Disease Doctor - Theses specialists have extensive training in all kinds of infections, including those caused by bacteria, viruses, fungi and parasites. Along with this knowledge comes a particular insight into the use of antibiotics and their potential adverse effects.
On August 15th Lilly will have Blood and Urine work done at the local lab.
I will also be running around getting all the results from all her test from that past, blood work, ultra sounds, x-rays and Biopsy results to bring back to the neurologist for a full review.
On Sept 23rd We see Dr. Waseem (Oncologist / Hemotologist) for Lilly's check up and more blood work.
On Sept 24th we will Finally go back and see the Neurologist and he will have all the results in and we hope to have an answer (man how many times have I said those words!!)
If Lilly does have Post-streptococcal complications and Rheumatic Fever, there is a Treatment plan called IVIG and it could be something that would help her. Here is some information on it Below...
What is IVIG?
A patient's quick reference to IVIG therapy.
Q: What is IVIG?
A: IVIG stands for intravenous immune globulin; it is a sterile solution of concentrated antibodies extracted from healthy donors which is administered into a vein. IVIG is used to treat disorders of the immune system or to boost immune response to serious illness, and to treat immuno-suppressed recipients of bone marrow transplants.1 Antibodies are responsible for defending our bodies from pathogens, such as viruses and bacteria. Q: How is IVIG made? A: There is a highly specialized and lengthy process used to manufacture IVIG. It begins in blood centers across the country where tens of thousands of healthy individuals donate their plasma (the portion of the blood where the immune globulins and other blood proteins are contained). The plasma from all of these individuals is then pooled together, and then chemically treated to isolate the immune globulins and remove any other blood proteins or blood-borne pathogens. The end result is a highly purified immune globulin preparation that is then packaged and ready to be infused.2 Q: Is IVIG safe? A: Yes! Since IVIG is derived from human plasma, theoretically there is a risk of viral transmission; however, every possible precaution and step is taken to ensure patient safety. The blood centers are strictly monitored and regulated by the FDA and the manufacturers of IVIG, as well as the individual donors, undergo an in-depth screening process to determine that they have not been exposed to certain pathogens, such as the HIV or hepatitis virus. Furthermore, during the manufacturing process, viral inactivation and removal steps are taken as an extra precaution.3 Q: How does IVIG work? A: It is unclear as to exactly how IVIG works within the body. For patients who are unable to produce their own antibodies, IVIG is used to temporarily provide these patients with the antibodies they need to ward off infection. In patients with autoimmune diseases, or other conditions where the body's immune system is not functioning as it should, IVIG can help regulate an overactive immune system by signaling it to slow down or stop inflammatory processes.4 It has also been hypothesized that IVIG might redirect the out-of-control immune system from the body's tissues by serving as a target for the auto-antibodies. While it is possible to debate the mechanisms by which IVIG successfully treats diseases, there is no denying its efficacy; IVIG has significantly improved the quality of life for many individuals.5 Q: Why do I have to have regular infusions? A: IVIG does not affect your immune systems ability to produce immune globulins; it simply increases the antibody level within your body. Antibodies whether those produced naturally by your body or those infused in the form of IVIG are eventually metabolized and eliminated by your body, usually in about 3-4 weeks. Regular infusions are necessary to maintain immune globulin levels within the desired range.2 Q: What kinds of side effects can I expect? A: The most common side effects include headache, nausea, low-grade fever, chills, rash, neck/back stiffness, and fatigue. Generally, these side effects are mild and tolerable and most often, they can be alleviated by decreasing the rate of infusion. More serious side effects, such as allergic reactions, are rare, but have been reported. Should you develop an allergic reaction, your health care providers are sufficiently trained to handle this. Do not hesitate to contact your physician if your side effects are severe or persistent. It is possible to reduce the severity of the side effects associated with IVIG infusions. Your physician may suggest premedication with acetaminophen or antihistamines; corticosteroids are also an option your doctor might conside.2 It is also important to make sure that you are sufficiently hydrated before your infusions. Make sure that you are drinking plenty of water for several days before your infusion.6 Q: Are there different brands of IVIG? How are they different? A: Currently there are 11 brands of IVIG available in the United States. They are all essentially therapeutically equivalent, however they do differ from each other in terms of sugar, sodium, and antibody content, as well as the presence of preservatives or latex. Your physician will examine all of these factors and identify the best brand for you.7 |
OK Everyone, as you can see it is a lot of information... As always I will keep you all posted on Lilly and how she is doing and what information we find along the way. Thank you all for your support!!
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