My worst nightmare is: That my son does not regain his strength

41 116
Avatar for Infinity
3 years ago
Topics: Shortstory, CIDP

October 12, 2021. No. 33

We have all had something that haunts us in our life, at least once. Those moments of helplessness, where no matter how hard you do things don't go well and maybe they never will. As much as you want and try, you keep wondering what you did to deserve what is happening in your child's life that is something defining for the rest of his life. We have all had these nightmares, which are not dreamed of because of their name. In this case, it is completely real. I comment a little.

As many of you will know if you follow me for a few weeks now, my little son suffers from a very rare disease. I say rare because the prevalence of it in children is 1/200,000. Although it begins at any age, it is more common to see it in people 50 years of age and older, my little one only touched the 2 years of life. We are talking about Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) disease. It all begins one day when my son tells me that he does not have the strength to pull the toilet chain, something he always did without a major problem. As we sat down to eat at the table that day, he couldn't hold the spoon. His strengths and motor skills in both of his hands were almost 90% gone. We urgently leave for the hospital. There they began a series of tests, which included puncture, MRI, and electromyography to name just a few, they showed that what he was suffering from was indeed CIDP. Months of hospitalization, while his strength in his arms, wrists, and fingers, in general, was almost nil.

Later he began with physiotherapy. Eventually, he got better, regaining his shoulders a bit. The right hand recovered its strength a little since it is the predominant one, but the left does not improve, loss of 99% of mobility in his wrist and fingers. Physiotherapy, despite having all the equipment and experienced physiotherapists, sometimes the disease is so hard that you can only advance up to a certain point. It has to continue to be done for life, even if it is not in a hospital, at home. Because you have to do exercises constantly so that the muscles exercise their function and do not atrophy.

We have read hundreds of articles on the internet, hundreds of comments on various YouTube videos where there are people who post their stories about the CIDP. Some say that the disease is redeemed by applying intravenous immunoglobulin (IVIG) treatment. When we wanted to give him this treatment on the recommendation of his doctor, the surprise was that the veins were so small that they could not be applied. There was no way the needle would go all the way in and pierce the vein. They literally punctured him on various parts of the body, without success. There are several variants that are oral, but we do not have them in availability. So we have to resort to buying in other countries as the best option, and the cost of them can reach $ 1500 - $ 3000 USD, money that I have never seen in my entire life. There is no choice but to keep trying the IV variant.

The pandemic came to screw up everyone's life. After all those infected and deceased, I believe that we are one of the most affected. Stopping treatment for two years, when it is vital to continue with it, due to the repercussions for life was difficult. Hospitals closed or became part of covid-19 patients. Luckily in these months, everything is already taking its way, and we hope that in November-December it will return to "normality" if at some point we can get there.

Also after a few months, the feet also suffered a bit from nerve damage. Affecting the lower part, in the ankles. Luckily it has reached a point where it does not improve anymore, but it does not continue to get worse either. It has been stable. Every day we do exercises together at home, to improve their strength. Despite all its limitations, we try to make it as independent as possible and doing things on its own, so that it learns. As you can imagine, in this situation, he needs a lot of help to take even the smallest action, like even putting on his shoes. He has to face life alone. We are teaching him to read and write, to take a pencil and write. He can now take the spoon and eat by herself. His intelligence has not been affected at all, I think he will be more intelligent than his parents, although for his age it seems to me that he already is Ahah. By telling them that even without knowing how to read, he has been doing anything on the computer or on the cell phone, for a long time. I think he will follow in the father's footsteps. Children's are a sponge, and this is their age to learn everything.

So is that my worst nightmare is that, that my son is not able to redeem his illness, even if it is at least for a short time since it can be recurrent in 30% of the cases when it is normal, but when it is chronic, it becomes 60% recurring. Only in 10% of cases is recovery complete and permanent. Hopefully, we are in the other range of numbers.

This is all friends. I hope that this article has been instructive to some extent, and you learned a little more about the subject. Generally, I don't like to talk about him a lot, because of all that he represents for us.

I want to open a new #prompt "My worst nightmare is ...". I would like you to share with us what is tormenting you and that you do not want it to end now or never happen. Share these experiences or thoughts, to release the pressure they carry and perhaps even find help and strength in our comments.

To participate, the rules are simple:

1. Write about "My worst nightmare is ..."

2. Writeย 100% originalย content

3. Joinย andย submitย to the community Just Write (e5e5)

4. Tag me @Infinity

5. Have fun!.

Thank you very much for reading me today. If you have not read the article yet: BITYARD. Grow Your Future In The Yard I recommend it. It's my participation in the recently launched #Club1BCH contest, don't let them tell you about it, read it yourself.

Thanks to my sponsors, you are the best!

Credits:

100% original content.

All designs are made with Canvas.

Video from Youtube, Cameron Cretney channel

25
$ 15.89
$ 14.94 from @TheRandomRewarder
$ 0.20 from @PVMihalache
$ 0.10 from @Jane
+ 18
Sponsors of Infinity
empty
empty
empty
Avatar for Infinity
3 years ago
Topics: Shortstory, CIDP

Comments

I felt sorry for you son Sir. I know its never be okay to see your child suffering that rare disease. No words can compare the painful scene of it. But then don't lose Sir sooner or later God will extend His miracle into your son life. Keep strong. I'll include your son health unto my prayer.

$ 0.01
3 years ago

Thanks! ๐Ÿ™ We never loose our hope. Thanks for stopping by.

$ 0.00
3 years ago

I hope and pray he falls in the 10% that recovers permanently. My prayers are with you and your family. I'll join the prompt in coming days...

$ 0.01
3 years ago

Thanks very much buddy. Right now we are in the hospital to take care of him on a medical shift. Glad you want to join this idea. I look forward to your article. Here I am now trying to clear dozens of notifications of articles that I have accumulated.

$ 0.00
3 years ago

It makes me cry for what happened to your son and ill pray for him that god can heal him, hope so friend.. God bless

$ 0.01
3 years ago

Thanks. It means a lot to us. ๐Ÿ™

$ 0.00
3 years ago

Let's just keep on praying Sir, all things are possible to GOD and we can have it through prayer. Keep on being strong too, as you are the mirror of your son. GOD Bless!

$ 0.01
3 years ago

Thank you my dear friend. We always try to stay strong. The hope is still present in us. ๐Ÿ™

$ 0.00
3 years ago

So sad, I think we have the same worst nightmare, its my nephew who is just 3months when diagnosed with leukemia, gonna share it here with your prompt.

$ 0.01
3 years ago

Oh, I'm really so sorry, my friend. I hope your treatment is effective. Have a lot of strength, so that you are able to transmit it. ๐Ÿ™

$ 0.00
3 years ago

They say its uncurable

$ 0.00
3 years ago

I know the disease. I have read about her on other occasions. That is why I tell you that they have to have a lot of strength to transmit it to them. I'm really, really sorry.๐Ÿ™. Keep strong.

$ 0.00
3 years ago

Yes, we are standing strong ang believing that he can endure it by Gods grace

$ 0.01
3 years ago

I felt sorry for your son๐Ÿฅบ, at a very young age he had to experience that kind of rare disease. I know that its hard to witness your child suffering from a certain illness but keep your hopes up and never ran out of faith that sooner or later he will completely recover. I'll definitely include this matter in my prayerlist, because God is our greatest physician.๐Ÿ™. I'll join this prompt too๐Ÿฅฐ

$ 0.01
3 years ago

Thank you very much my dear friend for your words. ๐Ÿ™ We are pending your recovery and trying to get you to exercise daily. Soon if everything goes well we must start with the appropriate treatment. Thanks! I look forward to your article.

$ 0.00
3 years ago

Oh my, at a young age he's experiencing this already. Please be strong for that child, he'll get better for sure ๐Ÿ™

$ 0.01
3 years ago

Thanks! This is how we stay, trying to keep it active on a daily basis. We are sure that it will improve with the appropriate treatment. Hope is not lost. ๐Ÿ™

$ 0.00
3 years ago

I feel for you. As a parent with that child, you must always e sad seeing your child losing strength. But i know you won't give up. There will be a time when your child will get the right treatment and improve so muc more than you expected. :)

$ 0.01
3 years ago

Thank you Ellechim for your wonderful words. Hopefully that day will come. Don't worry that we don't give up. We never give up.

$ 0.00
3 years ago

I hope and I will pray that your son can still recover his strength. I know how hard it for you, specially to your wife. As a parent it is hard for us seeing our son suffering from any illnesses. Keep strong my friend, for your son is also gaining some strength from you as his parents. Don't let him felt that your losing some hope. He can sense it . Be his strength and hope.

$ 0.00
3 years ago

This is my friend. We always try to give him strength and encourage him to do things with his most affected hand. We try to make he use it so that he don't forget it.

$ 0.00
3 years ago

It must have been a hard period of time for all of you in your family. I really wish, that your son will recover as soon as possible.

$ 0.01
3 years ago

Thanks friend. It still is unfortunately. Tomorrow we have to go to the hospital again to see the treatment. The covid is already beginning to pass by luck and they are resuming their usual work.

$ 0.00
3 years ago

At least that is a progress.

$ 0.00
3 years ago

I really have no words to comfort you. It saddens me that your little boy has to live through this illness. But God will in time have the solution to your case. You are doing your best to help him to be independent. Never lose faith no matter how bad the situation is. Because at some point healing will come to his life. God hears the prayers of the afflicted. I assure you that I will put him in my prayers, my friend.

$ 0.01
3 years ago

Thank you very much for your words friend. Some day it will happen. We do not lose hope that it will improve. ๐Ÿ™

$ 0.00
3 years ago

That's right. Keep your mind positive. I know you will.

$ 0.00
3 years ago

as a father, I am very sorry to read that about your son's condition. Let's hope in God that he will be the one to multiply your little one's strength. Remember, "The Lord gives strength to those who are tired. He gives more power to those who are weak" Is 40.29. That promise could be yours if you believe. Greetings my friend.

$ 0.01
3 years ago

Thanks! ๐Ÿ™ We will never lose faith in seeing him with all his strengths reestablished.

$ 0.00
3 years ago

First time i hear like this, feel sorry friend. Hope everything will be fine

$ 0.01
3 years ago

Thanks! We hope that he can revert this situation.

$ 0.00
3 years ago

God is good, I know your son will made it. Think positive always

$ 0.00
3 years ago

I include your son in my prayers and you too to give you strength too.

$ 0.01
3 years ago

Oh thanks dear. ๐Ÿ™ It means a lot to us. Thanks!

$ 0.00
3 years ago

Feeling sorry for your son brother. I wish him a speedy recovery and I hope he will return to his normal life sooner. He is in young age and facing this kind of difficulty I hope his next entire life would be a filled with happiness. God give you more strength brother for dealing this because I thing for parents this time is very difficult. God bless you and your son.

$ 0.01
3 years ago

Thanks. We hope that at some point with the appropriate treatment, the disease can be redeemed to a certain extent. ๐Ÿ™

$ 0.00
3 years ago

InshAllah one day.

$ 0.00
3 years ago

I don't know what to tell about this serious matter. A son of our neighbours is also facing the same problems. This kind of situation is a nightmare for parents. But it's early age, I pray to God your son will get well soon. And I hope of course he will.

$ 0.01
3 years ago

Yes, the situation is not easy. It requires constant attention. We hope it can improve. It is still very small, it only remains for the pandemic to finish to continue treatment.

$ 0.00
3 years ago

Who's video is that? I feel sad for your son. He's just too young to suffer that dismal life. And it's even tougher for a parent to see his son struggling at a young age. If you're son can not regain his own strength, then you have to regain more strength for him. .it will hive him hope and determination to get better..praying for your son ๐Ÿ™

$ 0.01
3 years ago

The video is from one of the many stories that you can find on YouTube of young people suffering from CIDP. This story of his was quite similar to that of my son, although he began to suffer it already in adolescence, after the treatment of him favored and redeemed him. So it gives me hope that when my son gets his treatment he will actually improve. Thanks friend. We are always getting more strength to help him in everything and teach him to be independent despite his physical limitations.

$ 0.00
3 years ago