Challenges of Raising a Brain Syndrome Child Alone

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One young woman has impressed me so much. I know I will never forget her. She has been through so much in a short time and has come out stronger. I have shared part of her story before, you can read here. There is so much more to this young woman and I wanted you to know more about her and her son. I wanted you to see how Bree faces the challenges of raising a brain syndrome child alone.

 

Bree, 24 –

 

white matter abnormalities

What is life like raising a medically high needs child on your own? My two year old son has been diagnosed with multiple white matter brain abnormalities. What does this mean? It means the tasks you do without thinking about, such as using a cup or a fork, are nearly impossible for him. He keeps losing his ability to speak and use sign language so we have to start all over on learning words.

When we go to the store and a page comes over the intercom; he freaks out and starts biting me – it is his coping method. I have been judged for this because he looks perfectly normal on the outside. Which he is, it is his brain that is not normal. His doctors hope his brain will learn to compensate for these abnormalities because there is no treatment.

 

sensory-processing-disorderHe also does not want to be held or cuddled or give hugs and kisses. Do you have any idea how hard it is to know you cant hug the life you brought into this world? Or comfort them with rocking?

The cause is unknown. He has SBBO (small bowel bacterial overgrowth). His bowel is allowing the bacteria found in the intestines back into his digestive track preventing him from digesting carbs, sugar or lactose. He has chronic diarrhea from this and is on a very expensive diet. Because of his body fighting this bacteria he runs a low fever constantly.

 

When you have a fever and diarrhea you cannot stay in daycare. He also has acid reflux and will randomly start puking if his acid levels get too high. So I lost my job because he is so sick.

He has reactive airway disease (likened to asthma) and anything can trigger an attack. When he gets scared he becomes tachycardiac, meaning his heart rate is double the normal, and his oxygen levels start dropping.

He is now in therapy and getting the help he needs and will probably be starting pre-k next year. Next time you see a kid crying and hitting their parents or biting them don’t stare or say anything. You don’t know that poor child’s story.

 

mri

 

My son is also being tested for epilepsy on the 20th. I can’t even begin to tell you how many nights I have slept in hospital beds beside my son, praying that this ER visit will give us answers. He has had 7 IVs for dehydration. He was hospitalized for three days at three months old. He has had an adenoidectomyupper and lower GI scopes, a brain MRI. All of which involved anesthesia.

Most of the time I was told it’s a stomach bug go home, he will be fine in a few days. I’ve been told I take my son to the ER too much but when he quits peeing, I take him in. When he gets dehydrated, his left kidney gets blocked.

It has been hell fighting for answers for him and we are finally getting them.

 

Angela

 

12 COMMENTS

  1. It’s so easy to judge from outward appearances, I’ve been guilty myself when a screaming child grates on my nerves in a supermarket. Thanks for writing this article, I’d never heard of multiple white matter brain abnormalities and will certainly be more tolerant in the future. 🙂

    • Hi Kathy,
      I was the same way. It never occurred to me before either. I will definitely be more mindful of my negative and judgmental thoughts.
      Angela

  2. As a father I can’t even imagine how difficult it would be to not be able to hug your child. Or to have others judge you for your childs behavior. I hope they can find something to help him and in the mean I guess all you can do is love him for who he is.

    • Hi Jared,
      I agree. I can’t imagine how painful that must feel. Bree is a very strong young woman indeed.
      Angela

  3. Hey Angela,
    Bree must have a pretty tough time and my heart goes out to her. Great post and very informative.
    Best wishes
    Jason

  4. Thank you all for your kind thoughts and prayers. This is my story that i chose to share with Angela to bring awareness and understanding, not just to my situation but to what others might be facing also. I have found some great support groups to help me though none so far that have gone through what all my son is dealing with. Everyday is a challenge but seeing his smile makes it all worth it.
    Thank you again for the prayers and kind thoughts!

  5. God Bless You. Thank you for sharing this i had noidea how hard it is to go through what you do everyday. This takes a very special person and great love for your child.
    May God Be with You For ever
    Tommy

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