Tiffanie Mae Kin was born on February 24, 2000 after a normal pregnancy for 38 weeks and for 12 hours of labor. She weighed 6lbs and 11 oz with a length of 19 inches.
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Tiffanie
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Tiffanie stayed in the hospital for one week due to a heart murmur and doctor suspected her of "Turner Syndrome", because of her inverted nipples and fat pads on her buttocks. It turned out to be a false alarmed.
Within the first two months of Tiffanie's life, she was healthy and growing like to be a normal baby. On May 2, 2000, she received her 2 month immunizations. After 3 days, Tiffanie had a very unusual reaction, she started to vomit nonstop, severe diarrhea horrible butt rash and her body and face was swollen. We called her pediatrician, Dr. Rebong and he prescribed medication for vomiting. The pharmacy had given a wrong medication. She was given nystatin. On May 6 we noticed that she looked unsually swollen, her eyelid completely shut off both of her eyes. We contacted her pediatrician again Dr. Rebong advised us to go to the hospital to do an x-ray. The x-ray displayed an enlarged heart, we were in deep shock, we rushed her to the hospital. The doctor did an echocardiogram and found fluid outside her heart called "pericardial effusion", hypertrophic cardiomyopathy, and ascites. She was hyploalbuminemia (Albumin 1.2), Hypercoagulability, anemia (hematocrit 24) and leukocytosis. The heart specialist tapped outside sack of her heart to drain out the fluids, but the fluids kept on accumulating. Tiffanie received several blood transfusions and several transfusions of 25% albumin, fresh frozen plasma lasix and vitamin K. The doctors could not find the source of the fluid.
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Tiffanie with mom & dad
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Dr. Mccracken a gastrointestinal specialist who recently came back from a conference out of the country about CDGS, tested Tiffanie for CDGS. Thinking that it is far fetched, but did not want to rule out the possibility. Tiffanie had the characteristic of CDGS such as inverted nipple, fat pads on her buttocks, and her Pericardial Effusion. We sent out her blood sample for testing. It took about 1½months before the result came back. Tiffanie was diagnosed with CDGS type1A. Tiffanie was started on TPN/ Intralipids and then transfer to Lucille Packard Children Hospital for further evaluation. Tiffanie was on TPN throughout her early hospital course for hypoglycemia and feeding intolerance. While she was in the hospital, the pericardial effusion did not stop. The doctors suggested to do a window to her heart , an attempt to medically manage the pericardial effusion was made based on a Swedish publication of CDGS patients with pericardial effusion, but it would cause her lungs to work twice as hard and result to possible lungs inflammation. My husband and I did not agree, we asked the doctors if there is anything else we can do. The doctor suggested of asprin and Solu-Cortef instituted on June 29, 2000 was successful. The pericardial effusion has resolved as of July 20, 2000, the steroids were subsequently discontinued. On May 31, 2000 gastrointestinal tube was put on her for her feeding since she is not gaining enough weight and a left IJ central Broviac for IV treatments and drawing blood, Tiffanie is known for a hard stick. After the surgery, Tiffanie was intubated. She expected to wake up within 15-20 minutes, but it was hours after. My husband and I were very scared. The doctors told us that they did not know when she was waking up. We just have to wait patiently Due to metabolic prognosis it cause her not to wake up right away. The Broviac did not last long, it was infected and generated a thrombus in her heart. The doctors removed the Broviac, she had multiple problem in placing lines and countless central line infections. They also tried to do a PICC Line on both by her ankle and was intubated again. But the result was unsuccessful. Tiffanie stayed in the hospital for 5 months with numerous complications. She was in and out of PICU. Tiffanie's mediations includes: Coumadin for anticoagulation. Nystatin ointment for diaper rush, Polyvisol vitamin, lasix for diuretic, propanolol for her cardiomyopathy, diazoxide for her glucose, reglan for reflux, semithicone for gas, calicium, magnesium, zinc sulfate and nutra-phos powder. These medications are on daily basis and around the clock.
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Tiffanie
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After that 5 months of hospitalization, Tiffanie was Hospitalized again. After 2 weeks of her one year immunization (Feb '2001). She had her first seizure.The Doctors said that her glucose was too low. She was only in the hospital for 2 days on control of diazoxide medication with no other complication this time. Tiffanie was hospitalized for the third time was on May 2001, she got ascites on her stomach. She stayed at the hospital for about 2 weeks. The Doctors did not know where the fluid was coming from. The ascites was controlled with "aldactone" another diuretic medication. The fourth Hospitalization was on November 2001, She had her 2nd seizure right after she has her supposedly 17th month immunization. This time she only stayed overnight and went home the following day. They performed an MRI and EEG to determine if she still have continious seizure, but it did not show any sign. We asked Tiffanie's pediatrician if we can hold back on her immunization. We felt that the immunization are the source of the problem. After every incident, she was extremely ill or hospitalized.
Tiffanie's developmental: At around 7-8 month Tiffanie started to roll over both sides. She also spoke her first word "dada". San Andreas Regional Center had provided Tiffanie an Occuapational Therapy visit for once a week. It took us a while for an autorization for her physical therapy through our private insurance. In fact, she was almost 3yrs old before we received the autorization. The first year of her life was the hardest of all. But as the days goes by Tiffanie is doing so much better. On November 2002, we visited at the church and a statue of the Virgin Mary, Tiffanie stood up with support and started to do a few steps when I was holding her hand. I broke into tears and this had given us so much hope that maybe someday, Tiffanie will do much more. Tiffanie had started pre-school on March 24, 2003.
It has been a year now since Tiffanie started pre-school. Tiffanie's teachers are amazed of her accomplishments. Tiffanie is no longer using her G-tube during the day. She drinks lot of whole milk now. (Berkley farm brand only) We are still trying hard to play with her mouth to open up and exlpore more variety of foods. She likes cracker or any crunchy snacks, she likes it when it cracks between her teeth, we need to put it in her mouth playfully or else she would not take it. Tiffanie finally got her walk about walker to help her mobility. We are still waiting for her wheelchair. Hopefully we would not use it for so long, now that Tiffanie started to pull-up on the couch to stand up on her own. She also, loves to go up and down the stairs. Loves to walk when you hold her hand. Tiffanie knows the people around her call their names. She loves to watch video, especially Elmo, as soon as you put Elmo on Tiffanie will stop whatever she is doing and will sing a long with Elmo. Tiffanie is a happy and contented child. Whatever the diagnosis, Tiffanie are doing more of what the text says about CDGS. We thank God that our little angel is improving each day and hoping that someday that Tiffanie will walk and eat on her own. We won't give up whatever it will take to help our angel.
To all the parent's with CDGS we also wish you luck and lots of patience with our little one, they will make it through.
Leon & Shine Kin
Email: shinekin4037@yahoo.com
eff: 04/21/2005