| Margaret (Maggie) Partlow was born on February 6, 2003. I had a normal pregnancy and Maggie was born a "normal" size (7 lbs, 1 oz and 18 3/4 inches long). She is my second child and was breastfed for her first year. Once we started giving her regular foods all she just wanted to eat was bananas. She gradually started trying other foods but did not seem to eat much. Her low weight we (doctors and us) were thinking may have been caused by chronic ear infections starting July 2003 through January 2004 for a total of 8. In January 2004 we had tubes put in both ears and hoped that our little Doodles would gain weight. She started eating everything. During her 1st birthday party, she started to get real warm. I took her temperature and it had risen to 105.8. Her temperature remained high even with doses of Tylenol and Motrin recommended by her pediatrician. Her little heart was beating so fast that I called the doctor back for a 3rd time, where she quickly decided to send us to the hospital. We were admitted for 2 days mainly to rehydrate her and kill an infection believed to be in her blood (she had a cold for several weeks and just couldn't shake it. On March 26, 2004 she started vomiting repeatedly. The pediatrician said it probably was the stomach flu BUT my gut told me otherwise. We ended up at the pediatrician office on Saturday and Sunday. We then ended back in the hospital for 2 more days as she kept vomiting. She had no diarrhea so it was determined that it was not the stomach bug. On Tuesday, we ended up at Albany Medical Children's Hospital. Albany Med stated that if they couldn't figure out what was wrong with our little girl, then we would be |
| Maggie Partlow |
| sent to Boston Children's. We ended up in the PICU for 2 days, to monitor her falling glucose levels, which was due to her refusing to eat. At this point her weight was down to 16lbs and 5 ounces from 17lbs and 12 ounces just a few days earlier. The weight is a concern still and we have been told that if she can not put the weight on herself then a feeding tube will be needed. They took so much blood from her that when the nurses drew more she would bleed from the other holes in her arm. Eventually they had to take blood from either her neck, her groin or her scalp. The blood drawn from her scalp was the SCARIEST thing for me. I NEVER LEFT HER SIDE!!!! I REFUSED TO LEAVE!!! My husband would go to work & take care of our 3 year old daughter Virginia, then drive down to the hospital to be by our side for a few hours. We finally left Albany Med on Friday, April 2. We ended up back on Saturday, April 3rd as she started to vomit again and stayed until Sunday, April 4. We went for more test including an upper GI scan and a CAT scan of her little body. She was reluctant to eat because whenever she did she would vomit, so we assume she thought it was easier not to eat or drink. We ended up back at Albany Med Wednesday, April 7 until Saturday April 10. We were home for Easter and very happy to be home. By this time we were on a first name basis with most of the staff in Albany Med.. The Geneticist got a lot of the results back and didn't see anything abnormal except her homocystein levels. He took more blood and reran some of the tests at Mt. Sinai Hospital in NYC. He actually went down to see the tests and look first hand as he suspected something with her proteins. In May 2004 we found out about ASA from the Geneticist. We are thankful and fortunate that she has a mild variation of ASA, you can't tell by looking at Maggie she is sick. In June 2004 we found out Maggie was highly/deathly allergic to eggs. She couldn't even have egg substitute or replacer. We need to carry the Epi Pen Jr. with us at all times. In August 2004 Maggie had trouble breathing after playing with our pet bunny, Blackjack, to find out she's allergic to bunnies, dogs, cats and peanuts. September 2004 we finally were approved to receive low protein foods from Cam Brooke Foods, located in Farmingham, MA. The company was started by parents of PKU children and have been a great source of information and support for our family. In October, 2004 with the help of Dr. Malone, a pediatric developmental specialist, Maggie started receiving speech and language therapy through Early Intervention, a state program. She receives Speech Therapy once a week and has been doing very well. All of our friends and family have noticed a change in her speech and the way she conducts herself, less frustrated when she is trying to ask for something. January 14, 2005 was the first time since her diagnosis that we ended up back in the hospital. Maggie got the flu and was unable to keep her Arginine in her little body so we needed to be in the hospital for 24 hours and now she seems to be doing better. In February 2005 we started giving Maggie low protein, high carbohydrate food supplements as she only weighed 20lbs and 3 ounces. As of February 2006 she weighs 25 pounds and is 24 inches tall. July/August 2005 Maggie became very ill again. Her ammonia levels were elevated, slurred speech, dehydration, vomiting, diarrhea, and weight loss, which she is already underweight. After numerous blood tests, cat scans, ultra sounds it was determined to be ileitis, inflammation of the intestines. She was a on very bland diet for over a month. It took almost 2 months for her to bounce back. In November/December she became ill again with colds and stomach bugs that kids get and lost more weight so our doctor, Dr Darius Adams, genetics, asked us to consider a port to help when ill as Maggie crashed very hard. We had her taken by ambulance and it took over 2 1/2 hours for the hospital to finally get a line in after several tries as she was so dehydrated with all the vomiting almost 5-6 times in an hour. In January 2006, we had the port implanted into her right jugular and things have been stable since. the monthly port flushing are difficult as she's scared but Jeff, comes each month. Hopefully Maggie and Jeff and build a relationship so she doesn't get so scared and knows he's here to help. then end of January we received some wonderful news that her body had out grown her severe egg allergy so now cooking in our house is a lot easier even though we still need to be very careful of any type of nuts as she is still highly allergic to nuts. For Maggie's 3rd birthday we were actually able to order her cake from our local bakery and they made it first thing to ensure there would be no cross contamination. It was wonderful to eat birthday cake with eggs again. There was no cake left over as Maggie had 2 slices. Maggie had her first seizure July 2006 then August 2006. We went for an EEG but it came back perfectly normal (thank goodness). March of 2008, Maggie had another seizure during her dance class and was taken by ambulance. They said her sugar was low and contributed to that. In May, 2008, she had another seizure and we were able to get her to respond to us, called the doctor and did not go to the hospital. We had another EEG done and again it was normal. We did go see Dr. Kang, a specialist. We discussed medication but her seizures are not frequent enough so we decided to wait and see. November 2008, Maggie had 3 seizures within 24 hours. In January 2009, we are going for a 24 hour EEG study to see if that can help shed some light on Margaret�s seizures. Her weight gain has been slow but over the past year and a half she has sprouted up. The zinc makes an amazing difference in her hair, nails and skin. We have had several hospitalizations over the past 2 years but they aren�t as frequent. Maggie received services thru the CPSE program for children under the age of 5. Now that she is in kindergarten, she has a 504 plan and being monitored for speech and other developmental delays. We have learned you need to be diligent with your school system to make sure your child is not lost especially with the extra medical and educational needs of a child with ASA. Each day is an adventure. They may wake up feeling fine but mid day be ready to drop without any notice. We would like to extend a SPECIAL thank you to Dr. Gayle Buckley & staff, Dr. Darius Adams & staff, family, friends and the Corpus Christi community. |
| Maggie's Information as of January 2009 |
 |
| Contact Person: Rob or Lisa Partlow Birthday: February 6, 2003 Age at Diagnosis: 15 months Siblings: Virginia, 7, unaffected Weight & Height: 41 inches, 37 lbs Development: Speech Delays |
| E-mail: [email protected] Home: New York Other Diagnoses: Severe nut allergy Protein Allowance: Meds: 55cc Arginine daily 7 cc Zinc daily |
 |
 |