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

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.

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

2. Write 100% original content

3. Join and submit 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.

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100% original content.

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Video from Youtube, Cameron Cretney channel