My first entry is basically a clinical entry.
Here is only some of the information about Congenital Toxoplasmosis that I've found so far
Congenital toxoplasmosis is an infection acquired from coming in contact w/ infected cat feces or eating undercooked meat or unwashed fruits and vegetables.
I do not have a cat. Nor do I eat undercooked meat or unwashed fruits and vegetables. (Especially since I almost lost a daughter due to a particular nasty e-coli strain--she was infected at school) The only way I could come up with my becoming infected w/ the toxo is I visited 3 homes regularly that had cats or had dogs that eat cat feces constantly.
A fresh maternal infection during pregnancy can lead to an infection of the placenta. Congenital Toxoplasmosis results from transplacental infection of the fetus during pregnancy. Maternal immunity appears to protect against intrauterine transmission of this parasite and thus congenital toxoplasmosis occurs only when the infection is acquired during gestation
CLINICAL FEATURES: 70% of infants with congenital toxoplasmosis infection are asymptomatic 30% of infants are symptomatic 1. Ocular Manifestations (76%) (eyes) 2. CNS Manifestations (52%) microcephaly or hydrocephaly,motor and intellectual retardation,seizures,sensorineuronal hearing loss
(SHE HAS FAILED HEARING TEST IN HER RIGHT EAR AT EACH EXAM SO FAR)
So far we have had the following tests done: 1. Results of fetal ultrasonography (if done) 2. Physical examination 3. Eye examination by a paediatric ophthalmologist 4. Several Complete blood count with differential leukocytes and platelet count 5. Liver function tests 6. Urinalysis and serum creatinine 7. Cranial CT scan without contrast medium 8. Auditory brainstem response to 20 dB 9. Maternal and infant serology
What is the optimal treatment of congenitally infected infants after birth? The treatment of choice for congenital toxoplasmosis in the neonate is the combination of pyrimethamine, sulphadiazine and folinic acid administered for one year. These children need to be followed carefully for evidence of myelosuppression secondary to medication, appearance or progression of retinal disease, development of ventricular obstruction and developmental delay. Multidisciplinary follow-up care, appropriate to the deficit and with attention to auditory function, is required. Breastfeeding by an infected mother provides no risk to her infant. These infected children are not contagious.
So that ends the clinical info. From here on I'll just post any subsequent tests & results and my personal thoughts, rants & raves.
Okay, here is my first rant
Well, after Shelby was born we knew something was wrong. She was anemic, had several episodes of fast & slow heartrates. She had at least one apnea that I know of. They didn't tell me very much about what was going on with my twins at all. The doctors, nurses, staff did not come to me and tell me anything. If you don't have a medical degree you don't know the questions to ask and if you don't ask the right questions you don't get answers. At least this was my experience.
All of that though was not the worst to me though. A test was done the day that we left the hospital that tested for the toxo in conjucntion with other tests. However no medical personnel called to tell me the test results. I have never had a doctor--pedi or otherwise--who did not send me a letter or call me and inform me of the results.
Well, the NICU dr had the NICU staff make an appointment w/ a pedi hemotologist. Well as it turns out they made it for the wrong facility. And because they did not inform me of the results from the test they did they day we left the hospital, I was only able to tell her what I knew. So she made me an appointment at the Specialty clinic--which is where it should have been made to begin with--and at that appointment is when we find out that she has the Toxo. That appointment was for May 19 (over 2 months from her date of birth). Because the meds are not manufactured in the US, the components had to be ordered by the pharmacists. This took a week!
I said all of that to say...they screwed up so my daughter's treatment did not start til almost 3 months after birth. Everything I have read on the internet about toxo says that treatment should be started within the first 2 mo after birth.
Okay, so here's my rant. If Shelby has any additional complications past the failed hearing in her right (not a definate answer on that yet), is it because of the initial toxo infection or is it because she was not treated fast enough?
So now that I've ranted about it. I do have to say in conclusion of this entry that I have to remind myself constantly to just leave all of my worries and Shelby's health in God's hands. He is the great healer.
8/23/03
Well Shelby had a Pedi Hemotology appt today. While there I found out that I tested negative for toxoplasmosis. This is flabbergasting news, cause Congenital Toxoplasmosis is only transferred from pg mom to fetus baby. Or at least that is what everything I've read indicates.
This only leads me to believe that she may have been infected by someone who "handled" her at the hospital. The only persons to handle her while she was at the hospital was Dr's, nurses, other personnel, me, my Mom and my SIL. I know that my MOM, SIL & I washed our hands before we were allowed to go back and touch or handle the twins. Shelby was sick at birth, but could this have been the reason why she was subseptible to the infection. They didn't test her hearing until about the 10th day in the NICU so could she have lost her hearing during those 10 days?
I know so many questions. But I feel better once I get them out in writing. NOt to mention that maybe I'll remember the questions when I go to see the pedi who specializes in diseases.
Well that's all for today.
9/25/03
Yesterday, the epidemiologist(sp) called. She had spoken w/ her coleagues(sp) and they seemed baffled that she could have this, too, without me being infected. So when I go to see her on Oct 1, she is going to have us both do another blood draw and send it to a lab in CA--one of the best in the nation. They seem to think that Shelby may have had a false positive.
Wouldn't that be great!!!!!
However, she has still failed her right ear hearing tests. We go back on Sept 29 for more extensive testing.
My husband told me today that she may qualify for SSI if she is diagnosed w/ deafness in the one ear. Anyone else have experience w/ this????
Shelby's possible deafness is thought to be connected w/ the toxo. We do know that she exhibited signs of an infection at birth. So IF it is not the toxo that caused her deafness it could have been another infection.
They were born 6 weeks early. It is my understanding that even being born early could be a cause for hearing loss or deafness.
Also, up until about 30 weeks when my last ultrasound was done, both were growing right at the same rate. When my first ultra sound in the LDR was done they had a difference of a pound. NOt that babies don't grow differently, but it seems odd to me that during the last 3 weeks there would be such a huge difference all of a sudden.
It may just be a dream for me to believe until the next test results come back, but I am hoping and praying that she doesn't have it. NOt having to worry about neurological problems, developmental delays, retinal diseases, etc.
She may still have hearing in her right ear. We see after our next appointment--Sept 29.
10/3/03
Shelby & I had blood drawn on Wednesday. It is being sent to Stanford in California. The doctor there is the leading specialist in toxoplasmosis.
I'm squirming like I have ants in my pants waiting for the test to come back! I can't wait!
I'll let you guys know as soon as I do!
10/15/03
Well, since last posting, we've been to the ear doctor, but they didn't do the test I was expecting
. I really thought they were going to do it! I told the doctor that we needed to know something! We would prefer to have hearing, but if not, then DH & I needed to apply for assistance to help us cover future medical expenses. We have all these appointments and out-of-pocket expenses to go with them.Well, first, let me tell you, I hated that "look", you know the look, the one that people give you that says "you're just trying to get money from your child's disability/handicap". I, along w/ many other parents, am NOT! I just want to know a diagnosis and do everything possible to make sure that my child receives the best possible care. If that includes applying for SSI so that we can afford all the appointments and medical bills, then so be it!
Okay, now that I'm finished griping....
We go to have the hearing tests on Tuesday, October 21. They will do the test where they test the ocular hair vibrations (I have no idea what the test it called). If she fails this one, AGAIN!, then she will go straight to the test where they put the electrodes on her head to test brain function for hearing. (So if anyone knows the names of these tests maybe you could educate me
.)I also called the pedi epidemioligist office and there was a mix up on the blood tests that they sent to Stanford to test both of us for the toxo. (I previously tested NEGATIVE). It will be Monday at the earliest before I will know!
(we need a pulling hair out picture thingy!)So that is where we are now. It looks like I'm going to be on pins and needles for a while!
8/15/03 (later that day)
HALLELUJAH!!!!!!!!!!!!!!! SHELBY DOES ****NOT**** HAVE TOXOPLASMOSIS
So now we are checking for the following. These can cause false positives for toxoplasmosis.
RF (Rheumatoid Factor???)
ANA
BUT, it is not nearly as serious as the toxoplasmosis!
I finally found the names of those hearing tests. Here they are.
Otoacoustic emissions (OAE) testing, which measures the inner ear's response to sound. Otoacoustic emissions are sounds produced by the cochlea, a fluid-filled coiled structure in the inner ear that converts sound vibrations into electrical signals that go to the brain. The cochlea produces otoacoustic emissions spontaneously in response to a sound, such as a tone or click. Otoacoustic emissions can be recorded in the external ear canal and do not require the person to respond consciously or indicate whether the tones or clicks are heard. OAE testing is often used to screen newborns for hearing problems.
Auditory brainstem evoked potential (ABEP) testing, which evaluates the function of nerve pathways in the brain that are needed to hear. In this test, clicking noises or tones are sent through earphones to the person being tested, and each response is recorded from brain waves by using electrodes taped to the head. When hearing is stimulated by listening to a test click or tone, the electrical response in the brain is called an auditory brainstem evoked response or potential. Like otoacoustic emissions testing, ABEP testing is often used to screen newborns for hearing problems. It is also called brainstem auditory evoked response (BAER) testing.
10/17/03
I don't think I ever actually introduced myself, other than in my signature. So here goes.
(I started out just to write a little, but ended up with a brief work history and a marriage biography!) My name is Marilyn Brennan. I live in Central Louisiana. I attend NSU on a music scholarship for 2 years. When my scholarship ended, I moved back home and began working at a Drug store. Soon after, I met my future husband, Jaba, through a work friend of my Mom's. We actually began dating exclusively on my 20th birthday. His Mom liked me so much that within a month's time she asked me to come work for her as her assistant manager for an Apartment community. Over the next 10 years, I stayed in the "apartment" business by working for 3 different government subsidized, privately owned apartments, then I was an Americorps*VISTA volunteered at a Judeo-Christian 501c organization that helped provide food, clothing, RX, and utility & housing assistance. After my year term was up, they hired me to be the a Case Manager for Homelessness Prevention. About a year later, I was recruited by the local housing authority to come and work for them.
Jaba and I dated for a year before he
"so romatically" asked me to marry him on 11/1/91. (His words were "now you can quit itching". I should have just told him no, then made him ask me in a proper and elegant way. It is also interesting to know that my engagement ring only cost him 3 cents. He traded a Topps Desert Storm Nolan Ryan baseball card (cost 5cents) for several pieces of jewelry--a solitary diamond engagement ring (3 cents), a mother's ring (1.5 cent), and some earrings (.5cents) for his sister. We were discussing having a November/December wedding when in March '92, we found out we were pregnant. It was quite a surprise because I was religious about taking the pill at the same time everyday. Later, I found out that antibiotics is what reduced the effects of Birthcontrol. Well, I didn't want to be a "showing" bride, nor did we want our child to be born out of wedlock so we moved up our wedding and were married 3 months later on June 17, 1992.Our firstborn was due Dec 14, but I developed gestational diabetes and high blood pressure/toxemia and she arrived 2 1/2 weeks early on Nov 28, 1992. I knew that I wanted to have all my children before I was 30, so I could retire at age 50 and spend quality time w/ my dear husband and future grandchildren. But Jaba wanted to wait so, it was almost 5 years before I could convince him to let us have another one. In fact, Al is the only "planned" child. In all, we have been happily blessed with 5 beautiful and loving children.
We've had our share of trials. In '97 we almost lost Cynthia to an e-coli infection. She was hospitalized for 28 days and was on peritoneal dialysis for 18 of those days. God granted us a medical miracle, for she is in perfect health now. Our next trial was when we were told that Shelby was diagnosed with Congenital Toxoplasmosis. Congenital Toxoplasmosis is an infection transmitted through the placenta in @ 30% of cases when the mother is infected or reinfected during pregnancy. It can cause infants to have debilitating mental capacity and to be blind and/or deaf. The infection is usually contracted by handling infected cat litter--or breathing in infected dust particles. It can also be contracted through eating undercooked meat or unwashed fruits and vegetables (usually from infected flies). However, 6 months later, after I tested negative for toxo, further tests were done and sent to Stanford. We were just informed this week that we both tested negative!!!! We are still havaing test done to find out what infection she has/had. The next test that we are being sent for is for Rheumatiod Factor. She has also failed hearing in her right ear at each of the five AOE hearing tests. However, these complications are minor compared with her original diagnosis.
I think the most important lesson I learned through both of these life-changing events is that children are a blessing for a lifetime, but only a temporary gift from God. They are NOT mine; they are HIS. It is when I realized this that I really began to see and know the true blessing of having children.
10/21/03
SHELBY PASSED HER HEARING TEST!!!!!
We've been doing the noodle dance ever since!!!
We did the blood draws for RF & ANA today. Hopefully the results will be in before we go to see the Pedi on Tuesday next week.
10/21/03
My Pedi called today. Shelby's RF and ANA tests came back negative!!!!
The RF titer was 1 to 10, so it was really, really low.
quote:
I copied this off of WebMD
A rheumatoid factor (RF) level greater than 23 and a titer greater than 1 to 80 supports a diagnosis of rheumatoid arthritis, but it may also occur in other conditions.
10/25/03
I don't know why it seems that all the bad things that have happened to my children from the almost death of my firstborn (e-coli-0157) to the most recent with Shelby (toxoplasmosis), that I am the one to be blessed with healed or perfectly healthy children. After reading the heartache that other parents have or are going through with their children, I sometimes feel guilty that they my children have been made healthy.
4/17/04 (journal of almost losing Cynthia to HUS in Nov/Dec 97)
We came just a hair close to losing Cynthia to e-coli related HUS just 6 days before her 5th birthday in 1997.
It started with stomach pains and black beady jelloey diarrhea to red beady jelloey diarrhea in less than a 12 hour period. The anti-diarrhea meds were not working and she would no longer drink fluids or eat popsicles. She was admitted to the hospital and thought to be getting better when after 2 days she began throwing up bile (stomach acid that disolves food). Her kidneys shut down within a 3 hour period after that. We were transferred to Tulane in New Orleans where a port was put in her femoral artery (near the groin area) for hemodialysis that night and then the next day she went in for surgery where that port was switch to a central line that goes into the chest and enters the heart and a peritoneal dialysis cathetar was installed. The peritoneal sac is what holds the major organs in your stomach. Peritoneal dialysis (PD) is a process by which the peritoneal sac is emptied of its "dirty" fluid then replaced with fresh. This is one of the functions of your kidneys. Cynthia was on peritoneal dialysis for 19 days with a flush and fill cycle every hour. By day 12, I was being taught how to cleanse the PD site and operate the dialysis machine, cleanse the central line site and flush with heparin to prevent clotting, and learning how to administer epogen shots for the anemia. Thus, the DR's were not expecting Cynthia's kidneys to recover. Cynthia still would not eat, all of her nutrition was being given by IV. One of the doctors was going to put in an NG tube for nutrition if we could not get her to eat. It was not easy, but Mama and I finally got her to drink those yucky canned stuff. If she had not regained kidney funtions, I would have been responsible for all of her medical care at home. I would have had help from my SIL and my mother who are critical care RN's, but it would have been ultimately my responsibility.
Fortunately, 6 days later, Cynthia began urinating on her own. The first time she produced about 110 cc's then the next time she had over 1000 ccs of output. The dr's were quite impressed with the capacity of her bladder. She was in the hospital for another 7 days before she was released to come home. I still had to clean both sites and flush the central line every other day, and give epogen therapy for the anema (my Mother asked the doctor about giving it in the central line to avoid all the shots which was approved). During her hospital stay, she had at least 8 or 9 redblood and plasma transfusions due to her low platlet count.
4/17/04
What the above post doesn't tell is our spiritual journey through those 28 days and the next year. I'll try and put it to words, but it may take some time, even days.
Yes, there were 5 other children who were in the hospital with the same diarrhea/vomiting symptoms within the same time frame, but theirs did not develop into HUS. From everything I've read, generally if the person has had some type of respitory illness within the couple of weeks before being infected with e-coli 0157 their chances of developing HUS become greater. Cynthia did have a cold about a week before she was infected.
They were all in the same wing of the private school where Cynthia attended.
No comments:
Post a Comment