Blindness in the eyes, holding back urine, stunted height development... In just over a month, these misfortunes suddenly befall a 4-year-old boy.
My son's name is Aijiu, a child with craniopharyngioma, who was delayed in seeking medical treatment during the Spring Festival epidemic in 2020, took a detour, and now his vision is legally double-blind (no light sensation in the left eye, about 0.02 residual vision in the right eye).
Because the brain tumor surgery damaged the pituitary gland, Aijiu used more than 3 different hormones to replace the treatment "life extension" a day, and the dose should be constantly adjusted, otherwise it would be life-threatening at any time.
On Monday morning, at 7 o'clock in the morning, I would take him from Tongzhou on time to the ophthalmology department of a Chinese medicine hospital in Fengtai to do acupuncture, three times a week, and there were more than 10 children who were blind because of craniopharyngioma.
(The picture shows the acupuncture of traditional Chinese medicine ophthalmologists for blind children.) Source: Courtesy of the author)
Blindness caused by optic nerve atrophy is medically ineffective. But I heard that someone once restored a little vision through acupuncture here.
Like other parents of patients, I hope that Aijiu will become the next lucky person to be favored by God - to regain, even if it is a little light.
To this day, I still feel guilty about my anger and love for a long time, and I think of my son's aggrieved appearance at that time, full of heartache and sadness.
In January 2020, Aijiu returned home from kindergarten and the winter vacation time officially began.
On January 16, the last day of his block interest class, looking back at the video taken that day, Aijiu's eyesight still looked normal.
But immediately after the Spring Festival, Aijiu's eyesight took a sharp turn.
Several misunderstandings finally turned into a "fight".
The first time, he was in the thinking logic line class, he watched the TV projection screen very close, from time to time did not listen to the class seriously, pulled him away from the distance, he ran close to the TV, I was a little angry, thinking that the child was naughty.
The second time, I was playing lego puzzles at home, and the diagrams that used to be put together quickly, but this time I couldn't put together a few pieces for a long time. I criticize Aijiu, but Aijiu does not speak, and looks for puzzles on the ground with his head stuffy.
The third time, I read comic book books, and I used to be able to read them quietly for half an hour once a day, but this time I was lying on my stomach reading books and didn't listen to anything. At first, I thought that Aijiu was naughty and deliberately made me angry, usually my grandparents were also used to children, and I couldn't help but beat him hard.
Ai Jiu cried bitterly, the top of his head was high, and he cried in the sky, and his throat was red with tears, but he did not speak. I had a vague feeling that something might be wrong with my son.
(Hee-hee and Grandpa take Ai-jiu to the hospital.) Ye Zhengxing/Photo)
A few days later, Aijiu and his 1-year-old brother were playing together, and there was a plate of Wangzai small steamed buns on the table, and the younger brother ate one by one, but the brother Aijiu could not catch a single one.
"Mom, I want to eat beans, but I can't see them."
Seeing this scene, Aijiu's father and I realized that Aijiu's eyes must have a very serious problem.
January 30 was the most intense period of covid-19 in the country.
My husband and I took Aijiu to a well-known children's specialty tertiary hospital in Beijing, and hung up the ophthalmology and health departments at the same time.
Ophthalmologists, by looking at fundus photographs and pupil pens to illuminate the pupils, did not detect any problems with Aijiu's eyes.
The doctor also took the light chasing pen to let Ai Jiu chase the light for a long time, but ai Jiu did not chase, and the doctor did not ask in detail, thinking that it should be the child's small non-cooperation (in fact, it is not uncooperative, but a long-distance weak light, Ai Jiu has actually been unable to see clearly).
At that time, I was very nervous, and I kept describing to the ophthalmologist the fact that I had found that Ai Jiu's vision at home had declined.
But the ophthalmologist did not believe it, explaining: "Such a small child, it is impossible for the vision to decline so quickly, or it may be born with amblyopia!" ”
(After Aijiu's surgery.) Source: Courtesy of the author)
Whether it is standing at a distance to look at the eye chart, or standing close to look at the big letters, Aijiu said that he could not see clearly.
I think there is a problem with the child's eyes, but the doctor judges that there is no problem, and the stalemate is not over.
After repeated pleading, the ophthalmologist was already very impatient, insisting that the child was small, did not cooperate with the eye chart, and if he still wanted to check, he could only do mydriasis.
In order to check the child's refractive or amblyopia, the doctor prescribed atropine, let the home drops of eyes dilated, and then check the vision.
Aijiu's father comforted me: "It doesn't matter, wear corrective glasses for big deals, and myopia must also be worn!" ”
Image source: Stand Cool Helo
On February 3rd, we did three days after the hospital review, but the doctor still insisted: "Because of the mydriasis, it will make the vision blurred, the vision measurement is inaccurate, so do not do the eye chart, wait for a period of time naturally good ..."
As an Internet product manager for many years, I still can't let go of the doubts in my heart:
First, the eyes were good before love for a long time, and it was by no means born with amblyopia;
Second, the child is originally unable to see clearly before the pupil is measured for vision, why do you say that blurred vision is normal after doing the mydriasis?
I learned later that my intuition was correct—
Not all ophthalmologists know about craniopharyngiomas, and only when a savvy ophthalmologist thinks of optic nerve atrophy and traces the cause.
Unfortunately, our ophthalmologists didn't notice this and missed the first chance to be diagnosed.
In desperation, my family and I felt that we had to go to the best eye hospital to see again.
At the beginning of February, just when the new crown epidemic was at its worst, the registration policy of major hospitals was tightening, and even scalpers could not be registered.
Two weeks in advance, I grabbed the expert number of the best eye specialist hospital in Beijing on March 3.
When he saw the doctor, the doctor coaxed Aijiu to take the things in the doctor's hand, and after the test, he told me that Aijiu's eyes were no longer the category of amblyopia, but a much more serious disease than amblyopia. He also advised us to go to the neurology department quickly, "it may be a brain problem."
There was no neurology department in this tertiary ophthalmology hospital, and after consulting with our families, we returned to the neurology department of the original children's specialist hospital.
(Anatomical diagram of the cranial nerves.) Source: Courtesy of Director Zhou)
This time, the divine physician was simply decisive, he only looked at the tremor of Aijiu's eyeballs, and he suspected that there was a lesion in the skull! Hurry up and give us an appointment for the next day's MRI.
That night, we did not go home, in order to ensure the next day's MRI smooth, we stayed at the relative's house near the hospital, according to the doctor's instructions to accompany Aijiu to play very late, almost did not sleep all night, deprived him of sleep, let the next day's examination go smoothly.
The next morning at the hospital, we fed him chloral hydrate, and after Aijiu fell asleep, he entered the MRI room to pat the orbital MRI.
After getting the image results, we saw a round, 2 cm tumor that looked like a small walnut!
The doctor's diagnosis came out: craniopharyngioma.
I have a high school classmate, I heard that because of the pituitary tumor blindness, this time found out that it is not a pituitary tumor, I was silly in the luck is not a pituitary tumor (I heard that I have to use hormones for life).
It was later learned that craniopharyngiomas are actually similar in position to pituitary tumors, but more serious than postoperative complications of pituitary tumors and more common in children's intracranial nerve tumors.
Craniopharyngioma has been diagnosed, and it is imperative to have surgery as soon as possible.
We followed the advice of relatives and friends, hung up a certain specialty of the third class hospital expert number, this old doctor is very kind, let Aijiu call him grandpa, he looked at aijiu's eye fundus photo a month ago, found that the optic nerve has atrophied, told us: vision can no longer be delayed, surgery should be done as soon as possible, can not wait!
But in the face of Aijiu, the old doctor was particularly patient, asking Aijiu where he was uncomfortable, Aijiu said that his left eye could not see clearly, and the doctor said, "It doesn't matter, Grandpa gave you surgery, and it will be better soon!" ”
Seeing such a good expert, diluting the unhappiness of the previous misdiagnosis in the children's specialty third-class hospital, the psychology is much calmer, and I hope that everything will get better quickly.
But the problem is that this hospital requires 14 days of isolation to be hospitalized, and another brain surgery hospital recommended by the old experts does not have enough blood reserves during the epidemic.
After several turns, we returned to the tertiary hospital where we first saw a child.
On Monday, March 9th, we went through the admission procedures, the test results were all right, and on March 10, the nurse shaved Aijiu's hair and prepared for the operation on March 11.
I handed Aijiu a yellow and white lollipop, and he told me that the left eye could only see yellow, he knew that there was a small white stick, the right eye could see, but the left eye could not see, I told him, everything will be fine, just tomorrow.
The first big winter spent in the hospital, there is no hot water supply, want to wash Aijiu's hair is not OK, I went outside to get some hot water, simply to Aijiu wiped his body, he was frozen and shivering, but he could only spend this night.
On the morning of the operation on March 11, I only told Aijiu's father the correct time of the operation, so as to avoid the worries of the elderly, and told them that the date of the operation was two days later. Let them prepare the red rope in advance and pray for the blessing of Aijiu.
(Before Aijiu goes to the operating table.) Source: Courtesy of the author)
In order to trick Aijiu into the operating room, after coming to the hospital, I made up a fairy tale hero dream for him, which was Aijiu's favorite Ultraman, and cheated for a few days.
He was expecting that he would enter a laboratory and would receive the Otter energy given by the professor from the Land of Light and would eventually defeat the villain Beria.
I don't know what it would be like when he went into the operating room without me, and he should only remember this, he wouldn't have known about the operation.
Before the operation, the doctor and I talked again.
I have only one request, Aijiu's eyesight must be preserved.
The doctor said not sure, there is a 20% probability of blindness, I asked if it is both eyes, he said one eye, I laughed again, I think this probability will not be shared by us...
After the operation was done, less than four hours, the green light of the operation was turned off, after the operation was completed, the awakening room woke up after half an hour, Ai Jiu was soberly pushed into the general ward, and did not enter the ICU that was expected to enter...
"Mom, I'm cold, I'm scared!" Ai Jiu didn't wear anything on her body, I leaned down and hugged Ai Jiu on the hospital bed, the tears couldn't stop flowing, and my heart hurt to death.
The paramedics pushed him back to the ward, wearing patches that tested vital signs and a needle for infusion at the base of his thigh. Just after the placement, another doctor came to intugate him, and Ai Jiu cried out in pain that he couldn't pee.
The director of the divine surgery of the main knife told me that the operation was successful, cut very clean, and would not recur!
That night Aijiu had a low-grade fever, but the next day the state began to recover, and I thought that all the sins that Aijiu had suffered should be almost over.
But soon the problem came again, Aijiu could not control the urine, the doctor said that it was diabetes insipidus, and it was necessary to prescribe drugs to control it.
Immediately after, the eyeballs of both eyes were also swollen, full of blood, and Aijiu's vision made me collapse again, and my vision became more and more blurred, and I couldn't see again. After measuring my vision, my left eye no longer sensed light.
That is to say, the probability of blindness of 20% is 100% here in Aijiu.
I began to frantically grab the number on the Internet again, looking for scalpers, after several twists and turns, hung up the number of a well-known ophthalmologist in the 301 Hospital, turned to the hospital to start the treatment of hyperbaric oxygen chamber, although the effect is not obvious, but at least I see a glimmer of hope.
In addition to vision problems, I also learned that one of aijiu's surgical complications is pituitary and hypothalamus damage, which directly affects the child's endocrine, including slow or even non-growth in height growth, non-development during puberty, diabetes insipidus, etc., and need to take medicine for life.
For example, imported desmopressin (an artificial replacement of antidiuretic hormone, 3 times a day) to control diabetes insipidus; prednisone (a cortisol hormone), used to improve the spirit; hydrocortisone, when the child has a cold and other low immunity, if the drug is discontinued may occur insufficient stress and serious electrolyte disorders, causing organ failure and pituitary crisis and other life-threatening problems!
In addition, growth hormone is injected according to the height needs, and sex hormones are used according to the developmental needs.
(The group of patients will exchange experiences in cutting 1/4 and 1/8 of the medicine.) Source: Courtesy of the Author)
In the process of seeing a doctor for more than a month, I took Aijiu to 5 hospitals, met many similar craniopharyngioma patients, and joined some patient groups.
Every day, I will ask you about aijiu's medication problems (such as how many servings of the medicine is broken into parts, how to adjust the dose of 1/4 or 1/8), and also try to help others.
Initially, as soon as I entered the group of patients, I first subverted a lot of cognition of this disease, they said that hormone drugs should be eaten for a long time, can not be stopped, otherwise there is a risk of death; they said that even if the craniopharyngioma is completely resected, there is a 20% recurrence rate, and most of the time the tumor can not be fully cut, the operation is only a total cut under the meat glasses. But while I was in the hospital treatment while looking for medical journal information, in the end I had to believe that a lot of what the patients said was true, not the information on the Internet can be found, everyone's nursing experience is extremely rich, and the powerful people have become their own family doctors.
(I love to use the dispenser box every day.) Source: Courtesy of the Author)
In the WeChat group, some parents of children will transfer the inexhaustible drugs at a low price to the new parents who need to buy drugs; there are also some children who have passed away and transfer the remaining drugs for free; there are also some very active people who can't stand the high recurrence rate of group friends for a long time and silently quit the group...
Every day, new people in the group of patients come in, and some people leave silently.
Now, I have started a "craniopharyngeal tube home" public account, hoping to let more people know more about this disease and take fewer detours.
We also organized a volunteer group to make targeted donations to families in need, and invited well-known endocrinologists to do free clinics and popular science Q&A for new patients.
Happily, in March 2021, the state included 12 pediatric tumors such as craniopharyngioma into the category of treatment and management diseases.
We are waiting for the specific details of the landing in various places, hoping that craniopharyngioma can be taken seriously, and can be reimbursed for long-term outpatient self-expenses because of endocrine problems.
The other day, Aijiu was playing in the community, and a little friend pointed at Aijiu and said to the others, "He won't live long!" ”
(After Loving can't see it for a long time, she always has to rely on her mother.) Ye Zhengxing/Photo)
I asked who said it, and the child said "Grandma."
I have never been shy about loving a long illness, his bravery and strength have always been my driving force, I had thought of gossip, but I did not expect that this kind of unknown community can also spread so quickly.
I found the child's grandmother, and she was very guilty that the child listened to other old people, and I had no intention of investigating.
Before I went home, I put away my tears, afraid that it would have an impact on Aijiu's psychology, but talked to him about this:
"Aijiu, what did that little friend say about you, did you hear me?"
"Heard, he said I was going to die"
"Then do you believe it?"
"Oh, Mom, of course I don't believe it, it's just a game, what he said is fake, don't you understand?"
"Oh, yes, you know."
I also seem to be gaining energy from Aijiu' classmates, strong in patience and brave in exhaustion.
I believe that Aijiu will grow up optimistically and strongly.
Big-name views
There are 3 key points for craniopharyngioma to save vision, and parents should learn to recognize 4 signs.
Craniopharyngioma, the age of onset from 1 year old to more than 70 years old, clinical symptoms make it difficult for many ophthalmologists and endocrinologists to identify in time.
The main reasons are twofold, first, this is a very rare central nervous system tumor; second, the peculiarity of the tumor location.
The common site of craniopharyngioma is in the saddle area, which belongs to the central area of the cranial brain, is deep, and is surrounded by visually related "life gates" such as the optic nerve, optic cristian, and visual beam.
Craniopharyngioma grows to a certain volume, will compress the optic nerve, optic cristian or visual beam, resulting in vision loss, or visual field defects, severe even to the extent of almost blindness, if there is vision loss, should be treated as soon as possible and timely surgery, treatment mainly has 3 key points:
1. Lifting oppression comes first. If it is for patients who have been blind, it is necessary to operate as soon as possible, more than a certain time, the optic nerve may be completely necrotic, vision is difficult to restore; if the vision is reduced and not yet blind, after the operation relieves the compression of the optic nerve, most people's vision will improve, and a small number of people will further deteriorate.
2. Avoid damaging the blood supply to the optic nerve. Both the optic nerve and the optic chiasm have very small blood vessels, and the blood vessels should be protected during surgery.
3. The hyperbaric oxygen chamber is effective in helping to restore vision. After the operation is done, the patient's vision is restored and hyperbaric oxygen chamber treatment can be tried.
In particular, I would like to remind that parents must pay attention to the changes in children's vision, because children who are too young cannot correctly express their vision loss.
If parents find the following 4 phenomena, indicating that the child may have decreased vision and impaired visual function, indicating that there will be brain nerve compression, parents should do further CT/MRI and other examinations for the child as soon as possible to confirm:
1. Your child's eyes are trembling and your eyes are shaking. This is nystagmus, indicating that there is a problem with the posterior nerves in the brain at the back of the eyeball;
2. The child's eyes are skewed on one or both sides. Atrophy of the optic nerve and other conditions will cause the eyeball to be skewed;
3. The child inexplicably rubs his eyes, reads in the wrong posture, and has poor eye vision ("myopia" or "amblyopia");
4. Walking against a wall and knocking on a door, it is easy to be tripped by small things, or ask "is there a light on" when the lights are turned on. The field of vision of the eyeball is blind or the light sensitivity is poor.
In addition, there are some atypical symptoms that are actually caused by brain tumors, which are often prone to misdiagnosis.
For example, symptoms such as listlessness such as "depressive symptoms", delayed growth and development, irregular menstruation (in women), infertility, decreased libido/low sexual function, etc., may be caused by organic causes (such as craniopharyngiomas in the brain), which require sufficient vigilance.
*The content of this article is a popularization of health knowledge and cannot be used as a specific diagnosis and treatment recommendation, nor is it a substitute for face-to-face consultation by a practicing physician, for reference only.
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