Introduction of infantile spasm clinic and treatment cases
In addition, over time, even after the disappearance of another kind of spasm medication switches to Epilepsy and left intelligence failure.
DSY Hospital has released from time to time various treatment cases of infantile spasms.It is time to give accurate statistics, but guessed approximately 30% cure rate from chinese medical treatment which looks the level of the effect of a ketone diet. However, recent estimates of the treatment to completely overturn the results of these statistics shown. Recently, five patients starting treatment infantile spasms are appearing all the results from the improvement.
First, the case that has been complete recovery was early onset patients within 40 days of onset all.
Second, it was state of the patients who took the Sabril shortly.
First, there is a possibility that as the time has elapsed, because of accelerating the regression and delayed development of the brain, the therapeutic index of infant fibrillation is reduced.
Second, it is the possibility of serious side effects anti-epileptic drugs that appear in the case of a mixed treatment anticonvulsant agent to act as a failure of normalization and development of the brain.
Fact is very clearly there. If you have applied Chinese medicine treatment in early stage infant fibrillation, it is a fact that the treatment result of the improvement from most patients appear, for many patients , it is possible to cure.Still, in our hospital, this fact has been demonstrated on a daily basis.
Check point for Infant spasms who is under medical treatment
Currently, most patients with infant fibrillation is processing the treatment with the anticonvulsant.Expecting treatment with the aid of modern medicine (anaticonvulsant) is obviously parents's choice. However, here is the problem that the result is not good to most. Medically infant fibrillation is a refractory disease which is only about 5% of patients become normal. Moreover if patients becomes normal , it is only a case of the upturn of good omen rather than causing by a therapeutic function of anticonvulsant.
If normal medical circumstances, the physician has to talk openly to a parent or guardian of a patient that the current treatments has no meaning indeed and they must ensure of choice of medical care.
However, the fact is that without any evidence, physician talk to parents that using anticonvulsant is the way to less break a child, and dose with anticonvulsant to children without no option. The administration of the anticonvulsant regardless of the treatment, is reducing frequency and intensity of seizures.
If physician does not explain exactly, parents get the wrong end of the stick, when the convulsions decreased, parents think treatment is going well. However, the truth is, most children's is on the way of children with disabilities who has spasms disappeared. Therefore, if parents of infants fibrillation taking anticonvulsant medication, it is necessary to inspect thoroughly the following to determine whether their child is in good process.
First of all, it must be checked whether children's cevelopment is going well, It is most important than reduction of convulsions.Infantile spasms is a spasm in infancy. About 50% of patients, the spasms have disappeared in an year snice birth and about 70-80% of the patients, the spasms disappeared in two years old. This means that most of the spasm patients, after infancy, it is a natural tendency to be destroyed.
However, the problem is developmental disabilities. Patients with infantile spasms cramps accompany mostly severe developmental disabilities after seizure disappeared. While seizure extinction is a natural tendency, development tends to be rather regressive.
Therefore, the weakening or disappearance of seizure does not mean the treatment. It also improves naturally. The problem is the state of development. Infants reduced or weakened seizure while feeding anticonvulsant should be checked the status of their development. If there is no improvement in development of the child, it is not they are being treated but going to the disabilities.
Second, the eye contact is very important in developmental order.The infant fibrillation shows a variety of developmental disorders, but in essence, it is displayed in a serious condition of cognitive impairment and intellectual impairment. The movement disorders is severe at the beginning but there is a tendency to be improved gradually, so treating cognitive disorders in a developmental disorder is the most important.
The most important thing to determine whether or not improved cognitive disorder is the eye alignment. Eye contacting with the parent is a first step to recognize the world. Even when the convulsions had ceased after taking high-strength anti-convulsants, if children have no eye contact, they are not on the way of cure and improvement but on the way to cognitive impairment child
Beside of eye contact, increasing babble or laugh could be also important index for judging normal cognitive development.
Third, heading up has to be checked very importantly to confirm motor developmentChildren with infantile spasms has shown improved exercise capacity even it is very slow, and so it may be mistakenly understood as a developmental improvement. To distinguish, please check if children hold neck properly.
Infant fibrillation patients who is in good progress during treatments, successfully hold their neck when development process is on going. It is like development process appears from the top of the body to the lower body. In other word, neck holding is firstly displayed than flipping body. On the other hand, there is a tendency to try flipping and rolling without neck holding when the treatment results are not favorable.
Therefore, even though there is an improvement of motor skills, if without neck holding, we never say that it is right on progress.
Perhaps most of children of infantile spasms who only takes care of anticonvulsant therapy may show above three symptoms. In such cases, this child is not on the process of recovery, but on the way of fixing development disabilities.
About DSY Hospital Infantile spasms Clinic
It is obvious that we have unprecedented high cure rate in treatment of infant fibrillation. After all these results and data collected in the clinic, we came up a few important features in the treatment of infant fibrillation.
Following findings are not only feature of the treatment but it is important information to know the prognosis, it will be exposed through the work of the papers later. However, it takes a few years to complete paper work to make understanding prognosis, we want to share the information briefly only for parents with infant children fibrillation.
The biggest feature of infantile spasms treatment consisting of DSY hospitals are as below:
Cognitive development is ahead, followed by a decrease of convulsions. If you use anticonvulsant there is a visible effect of reducing spasm but almost no cognitive improvement is shown. However, with the treatment that was done in our hospital, prior to the effect of reducing spasms, improvement of cognition is listed first. Then right after we find decreased convulsion. We estimate this results are not from direct use of anticonvulsant but come indirectly through the effect of improving malnutrition and impaired blood flow in the brain.
After the convulsions disappeared it is tends to follow leaping cognitive and developmental improvement. Even infants who has normal development, if infantile spasms occur, they starts to be regressed. If this regression is fixed, the children becomes intellectual disabilities. But we make degeneration to be stopped and the cognitive development is conducted slowly again. Through these process, disappearing convulsions and normal cognitive development is maintained. In most case, about a six-month delay in the development is confirmed.
there is a seldom returned convulsions after patients was diagnosed as complete recovery if he/she was taking early treatment. In case of infant fibrillation, as it is a rate disease, there is no following-up data of long term prognosis. It would have been no need of long term following-up as it is such an intractable disease which does not mean to discuss even the cure rate.
Infantile spasms cure rate statistics 1
Statistical analysis papers associated with the treatment of infants fibrillation that were made in the DSY hospital is being created, and it is planned to be published soon. Because it is a stage of only basic statistics, I would like you to refer to my column at this moment, Soon, you will find more specialized information through the thesis paper.
We analyzed 23 cases of infant fibrillation patient of past three years. All of them were diagnosed as serious infant fibrillation by general hospital and situated on non adjustable convulsions even with anticonvulsant agent, I.e. they were all intractable epilepsy which medical treatment is meaningless.
Above 16 cases could be analysed as below:
Based on above, the complete recovery rate of infantile spasms shows 56.2% (9 cases considered as full recovery out of total 16 cases). Including cases of Effective shown significant improvement, it could be extended to 81.25% of effective ratio. (full and effective recovery 13 cases out of total 16 cases).
Infantile spasms cure rate statistics 1
As mentioned earlier, infantile spasms complete cure rate in our hospital reaches to 56.2%. This is amazing outcome compare to existing cure rate in general western hospital.More surprising fact is that this complete cure rate shows significantly higher for patients who starts to get treatment from earlier stage, Out of total meaningful 16 cases, cases only took anticonvulsant less than 30 days were 10 cases.
Out of them, only 1 case was void, and 8 cases shows full recovery and 1 case was effective. That means the full recovery rate reaches 80% in this group. Even it takes about only 3 months to become EEG normal. Among them there was patients of charge syndrome and brain malformation on MRI.
Ultimately it says that the majority of patients with infantile spasms could be completely recovered if they get chinese treatment from early stage.
The challenge is to find whether < it the matter of the exposure period of anticonvulsant?> or < it is matter of "disease duration>. This would be another challenge.
In other words, we have to distinguish whether declining cure rate is because of long term use of anticonvulsant or longer history of infantile spasms.
To prove this, it is necessary and required special statistical process and further studies.But because all of above facts (duration and dosing period) could be variables interact to make it worse, it would be a reasonable to treat infantile spasms combining chinese herbal treatment to cure premature for now.
Each year about 120 cases of infantile spasms occurred, and most of them becomes physical disabilities.
According to DSY hospital's statistics, with the early chinese treatment, it can prevent a significant number of children out of hundred in danger of disabilities to be disabilities
Treatment of infantile spasms cases
The terminology "Infantile spasms", it was just so strange to me indeed. Well, I suppose not so serious, at least it is not a cancer, leukemia, something like this ... And I started to browse the internet. I was getting stunned... and my world turned black.
I am a father of girl twins with infantile spasms. There was a lot of things happened in the past 4 weeks. Too much despair and cried so much. I think the parents of a sick child, they are all same like me as if I could be sick instead of my child...
I am writing this letter for parents situated like me, hoping my letter to be helpful and referable in making any decision.On first showing of symptoms, twins were diagnosed with infantile spasms at a university hospital. We went to another university hospital. We wanted to deny and thought what if maybe not.... But it was same result. I despaired. Because anticonvulsant therapy did not reduce seizures. The following journal is ever since from the beginning.
Night, May 14, 2010Second child was suddenly convulsed little bit something like spasm(?). Arms up towards the head, at the same time eyes became a bigger and pupils were in the middle..both legs flinch. It was 3 to 4 times happen occasionally. I did not take it seriously.
AM on May 15,Spasm shown regularly for 3-4 minutes 20 times. I felt foreboding. I took her to University Hospital Emergency Center near home as she was born in there. They were premature babies. Got tested this and that in the emergency room and asked to be hospitalized. Even when in the emergency room there was twice spasm over 2-3 minutes. Hospitalized on Saturday and from Monday, she took anticonvulsant. Spasms were not reduced.
May 18 evening'Infantile spasms'' stated. Once the ' Rivotril ' is to put to control convulsion. Until the next day noon there was no convulsion, but in the afternoon convulsions began. Hospital recommended to use 'Sabril' After Sabril, frequency of convulsions have been reduced.
May 20Discharged from hospital. While not completely stoped convulsions. Doctor advised to watch until the next meeting, and decide medication dose adjustment. And he said we should have first child to test EEG. Because they are identical twins. I am just so anxious. I found there is top expert in child epilepsy in other university hospital. That was long waiting list, but luckly on May 25, 26, I made an appointment.
Seizures continued even after discharge. Three times a day, when to sleep or when to wake up. And numbers of seizures began to increase. 50 to 60 times at once...
May 25New university hospital expert doctor's diagnosis, second child is got also 'infantile spasms'
May 26After the examination of first daughter, the doctor said this child got 'infantile spasms' too upon EEG test. There is no convulsions yet but it is a matter of time. you have to start treatment first daughter along with the second child ...........
Discharged on May 20, situation was not getting any better. Wanting to hold a straw like a crazy person, try to find a key through Internet and read a few articles about pediatric epilepsy written by Dr. Kim Moon Ju joining his internet cafe.
Originally I did not think about herbal therapy or chinese medication. First, I believe it is not scientific second, I did not want feed uncertain herbal ingredients to my kids, and third, I just did not trust chinese medical for some reason. I'm ashamed even to doubt that there must be some fraud chinese medical clinics who only forces to make money cheating parents in panic.
I perused all the articles and cases listed in his blog and cafe site, My conclusion is as follows: First, about matter of scientific issue - it has not changed significantly. But I could understand vaguely chinese medical how to approach to this disease and what sort of principles are behind. Obscure ingredients (whether it is trusted materials or not) - has changed. They are a part of the faith, at least I got trust Dr. Kim after read his articles.
So I went looking for Dr. Kim Moonju. It was May 27, 2009 right after the day received a diagnosis of infantile spasms of first daughter. We had the long time of explanation and consultation. Particularly, Dr. Kim tried to explain to make us understand the pros and cons of western and chinese herbal treatments fairly. That day was so hard for us especially the second daughter never stop to cry while we had a meeting.
Because we visited with trust, we decided to starte treatment immediately both acupuncture and herbal medications combining Sabril as used to. We went clinic every day to get acupuncture though Dr. Kim said every two days would be ok.
May 29thIt is third day since we start treatment with Dr. Kim. Convulsions reduced once a day...
Sun, May 30Fourth day since started of treatment. A slight convulsion was happened once early in the morning. And She contacted eye with me and smiled. Oh god! Since onset, my second daughter did never eye contact with me or smile to me. I smiled, too. The tears flowed.
May 30 morning, Second daughter, after fine spasm till today (June 13) no convulsions recurrence were shown. As the first daughter did not have seizure yet, a consequent loss of cognitive ability was not occurred. Since that smiled day, the second daughter has been continuously improved. Hmm, it is a kind of little step by step recovery. After very good state for a while, then maintaining stage followed and then noticeable improvement again came back. There was about two weeks time between the onset and since started combination herbal treatment, And I found that the second daughter started to follow the development speed of the first child retaining two-weeks time gap. For example, fliping is one of them.
On June 08, 2009 we met a doctor of University Hospital, I spoke to him about stopping convulsions of second daughter. The doctor was surprised and said it was unbelievable, he said he did not expect that much as EEG results was not that good. And he recommended to take a more precise test which will takes 4 hours in June assuming no seizure recurrence. There is no limit to people's greed. I wanted to see no more seizure EEG
I would like to thank so much for upper most efforts of Dr, Kim Moon Ju and all of Zayonin family (Zayonin is previous name of DSY hospital) who really care my daughters. Thank you so much.
(p.s.) since last Saturday it seems she is better one step from another. Our family is very pleased and thank you again. even some them who was initially reluctant herbal remedies said concurrent treatment with chinese medication was right and good choice. My wish is only to be fully restored.
I am going to tell you about our children's progress since June 13.Since 13th, the convulsion of second daughter was never shown again. It has been exactly one month since stop convulsion. She now started to flip up side down. Being face down with arms stretched straightly she stands head and look around here and there. ( I heard that is banana pose ) She repeats freely lie down and turnover. I can say that it is almost rolling on the floor.
Development of cognition and concentration seems to continue. She laughs and smiles more frequently than before. Even it is a bit behind of her sister who had not convulsed, her development is going to continuously chasing to her sister who is in normal condition.
Yesterday she took EEG test in the university hospital. It was 4 hours long test. Tomorrow, her sister will take check-up, too and we will get to know the results on July 5th. I wish to hear that things are getting much better.
I would like to keep informed any further future progress, if you do not mind, for parents of infantile spasm. I want to share a light of hope with all of father and mother of sick child.
2010년 6월 30일, 쌍둥이 아빠
June 30, 2010, twin dad
Hi, This is twins' dad again.As I mentioned in the last article, kids took 4 hours precise EEG test a few days ago. I went to hospital to hear the test results yesterday.
" This is so good! Infantile spasms wave is gone!" " Found a little bit of spasm waves from second daughter but not related with infantile spasms, it will be gone in the near future. The EEG of the first daughter is completely normal." "Second daughter's physical development tests came out normal." "When you came to hospital first, we worried for bad statement of brain wave, but now, It is really fine. Dont's worry.".....
I was struck dumb. I could not speak at all. Looking at my wife and mother-in-law, laughed and alternately tears were welling up. but it was tears of happiness.
Thank you very much Dr. Kim Moon Ju. It was so desperate when we started the treatment. But now, I am facing to this good result. Thanks for smiling nurses always giving us energy. They are all savior for our family and we owe all of them.
Since diagnosed, I found one post articles written by one mother who has fully recovered child. There was nothing enviable than that. Now I am the one writing such posts. The treatment is not yet finished, but at this moment, I can say that I am the happiest dad in the world.
Again I want share the light of hope with parents has sick children who want to be sick instead of their children.
July 16, 2010 the happiest dad of twins