Discharge Summary from the doctor

Admission Conditions: Pancy complaints of vague words and unstable gait for 6 years. Nystagmus (+); Dystagmus present; finger to nose test (+), heel-knee-shin test (+). Unable to stand with feet together and eyes either open or closed; Tandem gait is impaired; Hypotonia of four limbs; Berg scores:41

Admission Diagnosis: Spinocerebellar Ataxia

In-hospital Conditions: Pancy has accepted four times Stem Cells transplantations altogether. One time Stem cells transplantations via IV (Aug 29 2008) and three times via Lumber puncture (Sep 3 2008; Sep 8 2008; Sep 12 2008) were completed and physiotherapy treatments were performed. Now, the patient can speak words much clearer and fluenter than before. finger to nose test expressed more accurate than before. Nystagmus (-), heel-knee-shin test(-).Pancy can control balance much better on walking.Berg Scores:47

Pancy mentioned that she has experienced cold feeling of all toes for nearly 8 years. We ordered ultrasound for the arteries of both lower limbs which showed a angiosclerosis changes. After ST treatment, the condition improved a lot.

Related Lab tests were done completely. The results of Triglycerides, Cholestorol, HDL and LDL are all in normal range. The WBC account and Bacteria account were abruptly high in Urine test for 3 consistent tests. It was considered Asympomatic Bacteriuria since Pancy had no any symptoms.

Affiliated medical treatment: Physiotherapy


Pathology Result: N/A

Discharge Diagnosis: 1 Spinocerebellar Ataxia
2 Asympomatic Bacteriuria
3 Angiosclerosis of Both lower limbs

Treatment outcomes: Much Improvement

Discharge Advices: 1 Keep physiotherapy rehabilitation
2 Continue the ST treatment in 6 months.

Day 20 checking out of the hospital

We are scheduled to head home on Monday Morning 9-15--we will in the airports or on the plane for 25 plus hours. Lucy met us at the airport on August 26 and will take us to the airport on September 15.

Day 19 at the hospital-Final PT and acupuncture

Pansy, Jamie, Spencer, and I walked down to Restaurant Row Saturday night for supper--We had Lucy to write in chinese what we wanted to order. Spencer seems to rub his eyes a lot--I guess the stem cells are doing their thing. Lucy ( translator ) asks us if we would like to join her and Jack ( translator ) for supper Sunday evening 9-14 at her grandmother's home here in Qingdao. Lucy speaks perfect english--she graduates from the University here in Qingdao on September 19.

Pansy will have Physical therapy from 10 to 11AM and acupuncture and electric wave therapy from 2 to 3PM on Sunday.

Day 18 at the hospital-Improvements

Pansy will not get off the plane and go dancing as she had planned--but her quality of life has improved. She has the correct colored toes, better circulation in her feet and legs. She says her hips feel lighter--she can roll out of bed now. She is still very dizzy--she has had this condition for a number of years--this makes waking very tough. Her writing has improved--her vision has improved--she does not have the jerky eye movements. She can feel her lips--the facial nerve was repaired by the stem cells. Her speech has improved. She does not need a straw when drinking--she can drink from a cup and not cough--the coughing seems to be almost completed cured. Dr. Bing says the stem cells will be hard at work for the next 60 to 70 days and that they will be on the job for up to 6 months, so more changes might be on the way. There needs to be a lot more research on stem cells lines

Day 17 in the hospital-4th stem cell treatment

Pansy's treatment went fine on Friday--she said she felt hot all over her body.

Day 16 at the hospital

Last night ( 9-11 ) we went to dinner with 14 other people from the 8th floor. We went to a 5 star hotel restaurant about 5 miles away by taxi. The people attending were: Jamie and Spencer ( optic nerve ) from Wisconsin, Katrina and Brandon (optic nerve ) from Colorado Springs, Lisa, Rious, and Baby ( optic nerve ) from South Africa, Daryn, Tonya, and Robert (spinal cord injury ) from New Zealand, Joe and John (SCA) from Tampa, Tanya and Dave (spinal cord injury ) from Boston. Spencer and Brandon can now see after the stem cell treatments.A new patient arrived yesterday Allen ( ALS--motor neurons ) from Ireland.They had to call in extra help today ( 9-12 ) since there was problem on Wednesday with the air transportation--it seems that most everyone is to receive stem cell treatments today including Pansy.We have received two packages of moon cakes--one from Lily and one from Dr. Bing--plus there was a moon cake party this afternoon here on the 8th floor. The moon cakes are different favors: pineapple, dates, apple, chocolate and etc.--the flavor is written in chinese on top of the moon cake.

Day 15 at the hospital-Moon Cakes

Two people left today, Charles from Québec and Jarrack from Belfast. There was an air transport problem today with the stem cells arrival--the people scheduled to receive injections today will be rescheduled for Friday. Pansy said she could feel her calf muscle for the first time in years. The doctors are very pleased with her success. In fact they are saying that she has had made more improvement quicker than the other ataxia patients. She says that is due to her positive attitude.Sunday ( 9-14 ) is special day in China--it's the mid-autumn festival. It is a full moon. The people share moon cakes with family and friends. There is an ancient fairy tale: a beautiful lady, named chang'er, lives in the palace on the moon only with a white rabbit. She is lonely and unhappy because she deserted her husband on the earth, so she can fly to the heaven. But the so-called dreaming life is not that enjoyable at expense of abandoning her lover.

Day 14 at the hospital-Improvements

Spencer the 2 years blind boy from Wisconsin can now see for the first time this morning ( 9-9-08 ) --the stem cells repaired the optic nerve to his brain.

Pansy can see better today--she can read the writing on t-shirts with ease--her eyes do not have the quivering movements. She can feel her face and lips--she has not been able to feel her lips in about 20 years since the shunt was implanted in her ear at the Shea Clinic in Memphis and they cut the nerve during the procedure. Her balance improves each day--she is walking without any assistance device. She does not need a straw when drinking--the coughing condition that she has had for at least 10 years seems to have been cured. She is walking with ease--again the stem cells are doing their thing.The spinal injection procedure takes about 20-30 minutes--that is the length of time that they are wheeled up stairs in their own bed to the procedure room and back to their room. As I understand it they roll into a fetal position--the doctor makes a small puncture in the spinal cord almost opposite the navel. They draw out a small amount of fluid and reinject the same amount of stem cells and then those little fellows go work--they go the location that needs help--a number of tests are completed on the fluid that is removed.The electric wave therapy is completed by having a small devices ( 2" x 2" ) strapped to below and above the knee--the wires are connected to a machine with a control dial that will increase or decrease the amount of electric wave needed to stimulate the nerves or energize the muscle. You can see the muscles move when they crank up the current.Jason does the acupuncture--this therapy was learned by Jason from family members--for the blind children the needles are placed in the fore head above the eyes. Pansy's needles are placed on the wrist area, elbow, ankle, knee, and thigh area. For people with a spinal cord injury Jason puts around 12 or 13 needles down each side of the back bone. I don't know what those needles are suppose to do. I declined Jason's offer for a free acupuncture session.We went to supper tonight with Jason, Jessica, (translator ) Charles (broke his back falling from a ladder that fell sideways from a roof like Tommy Brown) and Danielle from Québec City, Charles ( back problems ) and Tonya from Boston

Day 13 at the hospital-3rd stem cell treatment/2nd via spinal injection

Pansy will receive a spinal injection today ( 9-8 ) around 2PM and also receive a spinal injection on Friday. She will attend physical therapy M-T-W-T-F and receive acupuncture and electric wave therapy Tuesday, Wednesday, and Thursday. Again she has to lay flat on her back for 6 hours without food or water--some way this prevents her from having a severe headache after the spinal. Last week 24-36 hours after her spinal injection she had severe pain in her hips and thighs--in fact the gentleman next door to her who has SCA-1 also had the same type of pain. A 55 year gentleman who has spinal cerebellar ataxia arrived yesterday from Tampa.

Day 11 and 12 at the hospital

The Hospital is new--built 2 years ago--when I look out the window here on the 8TH floor I can count 16 of the high rise cranes--there are more cranes in Dubai, but there is lot of building going on here. They are building a multi big Mall across the street from the hospital. The room we have is quite large with 2 beds, couch, micro wave, small refrigerator, water cooler, desk and chair and the usual hospital attachments--the bathroom is equipped for roll in wheelchair--they have the usual electronic equipment--telephone, cable TV, internet hook up. They do not furnish meals for patients--You can order meals delivered from outside or the caretaker can fix them. They insist that each patient have a caretaker with them to assist with what ever is needed. They furnish the first 2 rolls of toilet paper and 2 thin towels. We have air condition--everything is clean as a pin. There are generally 5 or 6 doctors when they make their morning rounds. There is one doctor on duty at night for the 8th and 9th floors which is the VIP unit for foreign patients.

Day 9 and 10 at the hospital-Improvements

Pansy's speech is very much improved--her balance has improved--Dr. Bing wants her to walk without the crutch or other assistance to the bathroom 2 trips today--4 trips tomorrow--to the lobby Sunday and etc.--she can tie the drawstring on her pants--she can walk up the stairs backward in the therapy room. She needs very little help from me when she is walking down the hallway. The doctors are very much impressed with Pansy's progress. She can do the finger to tip of the nose test very well.

Day 8 at the hospital-Spinal Stem Cell Treatment

Pansy's 2nd injection went real good. She had to lay flat on her back for 6 hours--no food or water. It was a spinal injection. Most all of the stem cells go the brain area with a spinal as I understand. She seems to have better balance--her toes have a healthy white color.

Improvements

They say you can have improvement up to 2 years--most improvements will come about in the next 70 days.

Day 6 and 7 at the hospital

Pansy did have almost instant change after receiving the stem cells, but this is not true with everybody. There is a 47 year old gentlemen here from Belfast that also has a form of ataxia--he has received two treatments and he cannot tell that he has received any change to his body. All of Pansy's vital signs are good--bp 114\80, Temperature normal, stool normal, urine normal, all other blood tests normal as per Dr. Bing. He is doing another urine test this morning (Tuesday) he wants the urine from the middle of the stream for the test--he is a little concerned about the white blood count. The ultra sound was performed Monday afternoon on the feet --it indicated that the arteries were not allowing enough blood to get to the toes--he did not recommend any medicine--just wear two pairs of socks and to soak her feet in a pan of hot water daily to get the blood flowing. Pull up stem cell china--on the right hand side pull up Dr Payne MD blog--he is from Alabama and had a form of ataxia--he writes a decent blog--he received treatments about a year ago across the border from Hong Kong.Pansy's appetite is good (I am the cook) we have a canteen area here on the 8th floor with hotplates, micro wave, small oven, pans,and etc. I do a pretty good job on boiled eggs, noodles, toast and stuff like that--we have never missed a meal in almost 70 years.Pansy has not any nausea, no rash, she has had dizziness for the last 20 years. she does not have the total body flush today--Pansy said that must have been one hot baby that the stem cells came from.The first injection was by IV--the second injection will be a spinal tap on 09-03--they do several tests on the fluid they remove as per Dr Bing--they also check the pressure of the fluid, make sure there is no blockage in the spinal cord. Someway the stem cells go direct to the brain area--I guess with past experience they know which injection works best at which time.Pansy is convinced she is going to get off the plane go dancing.I am doing the best--doing push-up contest with therapist--Jason the acupuncture therapist beats me doing push ups on his thumbs--I can beat him on the stretched out push ups--you lie on the floor with you arms out in front of you--it is a total core exercise.

Day 5

Pansy can not see with her glasses--her eye sight is improving.

36 hours after the 1st stem cell injection

Pansy's entire body feels hot like she has a sunburn--even the bottom of her toes feel hot. She has a flushed feeling--her checks are pink--her chest is pink. She can lift her butt off the floor with her hands on the floor and her legs laying flat on the floor. Her balance has improved--she does not need as much support from me when we are walking. I guess those little stem cells are doing their job. Two new child patients are suppose to arrive on Sunday--one from South Africa and one from Italy.Savanna (8 years old) left yesterday for Missouri--she can now see--the stem cells treatments repaired her optic nerve.

Showing improvement

Pansy can lay on her back with her feet pulled close to her butt and raise her hips off the bed. That is a big improvement if you could not do that before. Dr. Bing is very pleased.I was wrong when I told you that they used embryonic stem cells--they use umbilical cord stem cells.

Day 4 - 1st Stem Cell Injection

Pansy can move her feet, knees, and hips without pain–she has better color in her toes–her feet are not as cold–I guess the stem cells have improved circulation in her legs. She says she can see better out of her right eye. These might seem like very small changes, but all the parts have to work before you can walk or run. Dr. Bing is considering using ultra sound on her legs and feet on Saturday morning. I talked to Dr. Bing about one hour ago regarding additional injections–he said we could make that decision next week.

Day 4 at the hospital

The food from the catering service is mostly rice with side dishes of sweet and sour chicken, spare ribs with vegetables. Lucy (our translator) traveled with us to the market about 1 mile away. Most all items in the store are written in chinese–so you have to look at the pictures on the package. Dr. Bing compared the pulse in the left and right feet–the pulse in the left foot was not near a strong as the pulse in the right foot–you recall the nail on the big toe on the left foot comes off on occasion for no apparent reason. Pansy will receive embryonic stem cell IV treatment on Friday afternoon around 2PM. There 2 men here with ataxia–70 year man from Queensland has sca6-he will receive 6 treatments–he has shown improvement according to his wife–46 year old man from Belfast has had ataxia for ten years–he has received 2 treatments.

Day 3 at the hospital

Pansy had acupuncture, physical therapy, and electric wave therapy today–she will have these therapies everyday except when she is having embryonic stem cell injections. We cooked our meals in the canteen area today instead of ordering food from the catering service. Dr. Bing is very concerned about her lack of circulation in her left foot.

Day 2 at the hospital

Everyone is super nice–Pansy has been seen by a bunch of Doctors, had several x-rays, ekg, therapy and etc–she has her first IV stem cell injection on Friday afternoon. There are people here from all over the world–some blind children from the USA who can now see after the stem cell treatments.

Day 1 at the hospital

We checked in to the hospital Tuesday afternoon--one of the doctors checked Pansy this afternoon.

Chegyang People's Hospital in Qingdao

We will be travelling to Qingdao,Shandong, where Pansy will undergo a stem cell treatment program for diagnosis of "Spinocerebellar Ataxia".

Travelling to China

Pansy's Ataxia Blog for the trip China