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Kleber-Congenital muscular dystrophy(Brazil) update on May 20th, 2015

Author Julia Views Posted at 2014/01/14

The second round treatment:

Name: Kleber Luiz Cohen Moreira         
Sex: Male
Country: Brazil
Age: 14 years
Diagnosis: 1. Congenital Muscular Dystrophy 2. Merosin-Negative 3. Hyperthyroidism
Date: Apr. 20th, 2015
Days Admitted to Hospital: 21 days

Before treatment:
14 years ago, when he was 5 months old, he developed difficulty to raise his head. His four limbs developed mild weakness and muscular atrophy. The muscles of shoulder girdle, collar bone and pelvic girdle were worse in weakness. He was diagnosed as Congenital Muscular Dystrophy( Merosin-Negative) after biopsy. He couldn’t raise his head, couldn’t sit,  couldn’t crawl or walk. His disease had progressive development. He could barely chew, had difficult to swallow and always chocked. His weakness of four limbs got worse. He developed lateral curvature and contracture of joint. The ankle joints, knees and elbows were worse. He developed breath problems 6 years ago. He needed BiPAP during sleep. The muscles of his neck, shoulder blade, collar bone, pelvic girdle and four limbs were depauperated badly. His four limbs were weak especially the proximal end. His four limbs had flexion and extension problems. He wanted a better treatment so he came to our hospital and was diagnosed as Congenital Muscular Dystrophy.

His spirit was good. His diet and sleeping were good. His defecation and urine were normal.

Admission PE:
Bp: 105/65mmHg; Hr: 131/min. Br: 46/min. Bt: 36.8 degrees. Height: 138cm. Weight: 25kg. His skin and mucous were without yellow stains or petechia. The respiration of both lungs was weak, with no dry or moist rales. The heart rhythm was normal with no obvious murmur in the valves. The abdomen was soft and bulge with no pressing pain or rebound tenderness. The liver and spleen were normal. The muscle power of full body was weak, proximal muscles were worse without false hypertrophy. Ankles, knees and elbows had contractures. The ankle joints pointing inward and abnormal. The knees had contracture for 135 degrees and couldn’t extend. The elbow joints had contracture for 90 degrees and couldn’t extend. He couldn’t hold up his head or turn over his body. He couldn’t sit and this was accompanied with lateral curvature.

Nervous System Examination:
Kleber Luiz Cohen Moreira was alert and his spirit was good. He had a lots of facial expressions and good speech. His memory, calculation and orientation abilities were normal. Both pupils were equal in size and round, the diameter was 3 mm. Both eyes had sensitive response to light stimuli. Both eyeballs could move freely. The forehead wrinkle pattern was symmetrical. The ability to close his eyes was strong. Both nasolabials were equal in depth. The tongue was centred in the oral cavity and the teeth shown without deflection. The muscle of tongue was mild depauperated. Both soft palates could be lifted, but the strength was weak. The distal muscle power of both upper limbs was at level 2, the grip of both hand was at level 2. The adductor muscle power of right upper limb proximal end was at level 2, the abductor muscle power was at level 1. The adductor and abductor muscle power of left upper limb proximal end was at level 1. The adductor and abductor muscle power of both lower limbs proximal end was at level 3, distal was at level 1. The muscle tension of four limbs was lower, the tender reflex of four limbs were abnormal. The abdominal reflex was weak. The pathological sign of four limbs were normal. The rough depth determination and epicritic sensibility of both sides were normal, he couldn’t finish the finger-nose test, rapid rotation test, and both legs’ heel-knee-tibia test. The finger-to-finger test, he could only do the thumb and forefinger. The meningeal irritation sign was negative.

Treatment:
After full examinations, he received treatment to repair and regenerate muscle fiber. Treatment was done to improve circulation, nourish neurons and improve immunity. We also gave him daily physical rehabilitation.

Post-treatment:
After the treatment, his condition was better. His respiratory function was better, his Br was slower, and it was 28-38/min. The respirations of both lung was better. His saturation oxygen: 90%-98%. The exercise tolerance was better. The grip of both hands was better, his feet could move more, his muscle power was better.


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The first round treatment:

Admission Date: 2010-06-10
Days Admitted to the Hospital: 35


When Kleber was 5 months old, his family members noticed that he had difficulty raising his head. It was soon discovered that he had myasthenia of the limbs and mild muscle atrophy, the atrophy was mainly in the pectoral region, the muscles attached to the collarbone, and the pelvic girdle. Kleber received a biopsy and was diagnosed with congenital muscular dystrophy. He was unable to raise his head, sit, crawl or walk. With the progression of the disease, he developed masticatory atonia, had some problems with swallowing, and regularly coughed. The weakness in his arms and legs gradually got more severe. This was accompanied with mild osteoporosis, scoliosis and articular contractures. The ankle joints, knee joints and elbow joints were affected the most severely. Kleber had mild breathing difficulty and needed the use of a breathing machine (BiPAP) to assist with his respiration. Because of the weakness of Kleber's arms and legs, especially proximally, he had difficulty bending and extending them.


Kleber's parents were understandably quite distressed with the suffering that he was undergoing with this disease, which prevented him from having a normal childhood. When Kleber's family found out about our medical center and the possibility that our stem cell treatment could help with his muscular dystrophy, they soon made the decision to come here.

Just like with all of our patients, Kleber initially received a complete physical examination. Then we administered the stem cells activation treatment to repair the damage to the neurons. He received treatment to improve the blood circulation in order to increase the blood supply to the damaged neurons and to provide nourishment for them. Kleber was also given daily physical rehabilitation training and Chinese traditional medicine to promote the recovery of his motor functioning.

During and after the treatment period, Kleber's condition had shown good improvement. His weight had increased by 1.5Kg, and his height increased by 3cm. The strength in his neck has increased and he can hold his head up for 1 minute independently. The chewing strength and swallowing ability has improved. He is now able to eat a small amount of meat. The oxyhemoglobin saturation has increased from 91%-94% to 95%-98% (daytime). The strength of the upper limbs has increased and Klebercan raise and extend his arms further. The muscle strength of his legs has improved to the point where he can now lift both of his legs free of the surface of the bed with some resistance. The contracture of the ankles, knees and elbow joints has improved. The left knee joint has shown themost improvement, with an increased movement range of about 20 degrees.


Before Kleber was discharged from our hospital, his parents said thanks to all the doctors, nurses and members of the international department staff. The family was happy with Kleber's results and hopes to be able to return for the next round of treatment.

 

Kleber's father write to us on July 26, 2010:

My Friends:

Nossa searchs for the improvement in the quality of life of our Kleber son exceeds some more rational or contemplativa position. Many people exist who will be admired and others one in such a way worried about our decision, however, fit we, the parents, to decide on the ways and treatments of our son.

For many years, since that it was born, necessarily 09 years, who the researchers in Brazil are dilatando the stated period here, "dourando the pill", for the effective application of Cell-Trunk in human beings, or better, making it difficult our access to this treatment, therefore it exists and is used "private", for more fond people and interests. Our decision occurs later that we hear of a professional of the area of Distrofia: "Treatment with Cell-trunk is not for the generation of its son". The allegation is the same one of always, everything is experimental, in rats and dogs, while in eastern countries they are used in resulted human beings and with excellent. We do not have another exit, if it is here thus we go in search of other places where it exists interest and respect for the people.

if mainly deals with an irresponsible adventure, as they will say some, the professionals of the medical area, therefore our decision is based in contacts in São Paulo with a wonderful family that its son for China took there, to deal with a much more preoccupying pathology here (Moyamoya) because here in Brazil it did not have more hopes, was undeceived. Know we them back in Abadiânia/GO, one year later, (Vide photo-Victor to the deep one), speak, walk, play, laugh, go to the school and interact with the people of positive form, not presenting more the previous picture the cell-trunk applications, in the WU Stem Cells Medical Center in 2009. (http://www.wustemcells.com/)

Os studies and research in Brazil are always the grace of decisions of politicians, influence of the Church here hypocritical and dinheiristas Catholic and some criteria, what also it weighed in our decision. The lack of resources and interest of the laboratories also. The Brazilian dependence in the release of research, the studies, follows occidental standards how much to the medical ethics, while back in China the ethics are another one, the culture and the standards also are. Has times that lace uses cell-trunk removed of umbilical, mainly of embryos, therefore abortion is allowed, while in ocidente the hypocrisy says high more and people here who could have a normal life, suffers due to adequate treatment.


Como said the Dra. Mayana Zatz, if is experimental they cannot charge, "this is a business of China", spoke of sarcastic form as if everything was missed there and the certainty would be here in Brazil (ocidente), in the expectation to leave in the front in the treatment that also would be charged, therefore nothing exists in Brazil of favour. if it does not have as to make the applications in human beings, while it uses rats and dogs, we go in search of more serious attitudes, instead of waiting the death to arrive.


Me enoja the passivity of the people when it says that here it is thus and thus it has that to be. If the Vice-president Jose Alencar did not have to be able and money to treat itself has much time would be died. It was to U.S.A. in search of what it did not exist here and tai vivinho.

A net Globe had an ambiguous paper in the spreading of the true facts, after all they cannot serve the two masters: The truth and the money. When they had presented in recent program results (not very positive) of people who had been to China in cure search, had not made it with the reach that would have and nor had looked for to interview those whose resulted they had been and they are very positive, as the case Victor, (http://www.wustemcells.com/en/patientstory/Moyamoya073849452.htm) that I cite in this text.

Os reporters if had not worried in looking for what of better he is being made with applications of cell-trunk back in the China, had placed superficial situations and only had presented a family whose father is neurologist and pparently against the procedures adopted there, as much are that while said not to believe mehorias the son said to be feeling the improvements. The Medical Wu Center (vide site) that we cite does not have nothing to see with the procedure that the Globe presented, quite to the contrary, beyond superior is commanded by one of the biggest neurologists of the world, Dr.Wu.

we Estamos going in search of what it exists of better in the planet today for the improvement of quality of life of our boy. We thank all the ones that, of one it forms or of another one, they had collaborated and they had stimulated in them to take so serious decisions. We wait that they keep the positividade and the conjuncts that as much help in them. God took in them for there.obliged Muito and until the return.

Daniel, Natascha and Kleber

2010-9-15: Kleber return home, his mother email the pictures to us:

 

2010-10-20

Kleber's mother email to us:
"We miss you!

How are you?

Kleber is much better. Walks on the treadmill everyday for 15 minutes.
Can sit without support! Have stronger arms!

Please send us your news!

Merry Christmas and Happy New Year!

 

A big hug!

We love you!
 
Natascha"

 

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