Son’s health problems and lack of answers frustrating …..

Our son Matteo, whom we adopted from Ethiopia about a year and a half ago, has had numerous health problems since arriving to the United States.

Matteo had been abandoned by the side of a road, so the orphanage he came from didn’t have any background information, which can be common with international adoptions, and some of the blood tests he underwent while in Ethiopia turned out to be either false, or inaccurate or simply from another child.

The lack of information, combined with incorrect assumptions about these tests has added to our frustration in trying to figure out Matteo’s health problems.

Our little fellow has lots of digestive problems and seems to fall ill every other week. I don’t mean colds, or even the flu, but his digestive system isn’t working. He has lost weight and has seen more doctors and specialists than all of his siblings combined (which is a lot considering he has four sisters). It has been a bit discouraging to be unable to find out what exactly is wrong with him even though the pediatrician and the specialists we have seen have tried to do their best with the information available.

We were able to find out that Matteo has many food allergies, but the little guy has also had parasites, salmonella more than once, unexplained vomiting and loose stool on a regular basis and there are times when he cannot keep anything down.

At first, I kept a fairly positive attitude and thought that this happens to every child in different ways – we are all susceptible to certain ailments, some are more prone to dealing with skin issues, others with respiratory problems and Matteo with his digestive system.

But unfortunately, in the last few months he seems to be getting sicker and his health has worsened rather than improved. I have found myself increasingly impatient and frustrated by the lack of answers.

Little things seemed unbearable. Navigating through the military health insurance, Tricare, when Matteo didn’t show up as a dependent and we were presented with a bill for several thousand dollars was infuriating. I know it’s no one’s fault, perhaps a system glitch or mis-spelling of his name, but I have been short tempered and annoyed that I have no control.

In fact, just a few days ago, after one of Matteo’s particularly bad episodes, I found that I was angry and frustrated not because of the Tricare system or the specialists that we have seen, but because I have no control over any of this and there is nothing that I can do to fix the situation!

Not that I felt happy about what was happening but at least I came to terms with the fact that I just have to learn to deal with uncertainty and frustration. And even though Matteo’s health problems are difficult to solve, or even diagnose, he is getting the best care he could get here in the United States.

The road may be bumpy and there is no clear map, but I am trying to enjoy the ride with all its twists and turns because I love the passengers so much.

7 Comments

  1. Posted February 29, 2008 at 11:46 am | Permalink

    Many (((hugs))), it’s got to be so hard…

    I am so glad you are vigilant! I do hope that they find some answers.

  2. Katrina
    Posted February 29, 2008 at 1:39 pm | Permalink

    Bless your heart for still being sane! I cannot imagine the frustration (putting it mildly) you must be feeling. Hopefully they find out something to help your son get better soon.

  3. Posted March 1, 2008 at 1:38 am | Permalink

    I am so sorry to hear that you are going through this. Nothing is worse than when our children aren’t feeling well. I know there are many times I wish I could just take it from my kids when they are feeling ill. I had a lot of problems with my son and daughter when they were babies with digestive issues. Come to find out they were lactose intolerant. I am Mediterranean and it is a common trait for Mediterranean people. Both of my brother’s were allergic but I wasn’t. So, I never thought of that until the Dr. Pointed it out! Hopefully Matteo’s problem will be something simple to correct! He will be in my thoughts and prayers! So will you! Hugs!

  4. Chelle
    Posted March 1, 2008 at 10:37 pm | Permalink

    Please let me know what I can do for you. Babette has my contact information. If you haven’t been assigned a Tricare Case Manager, you need to get one immediately. They are there to create a cohesive care plan for your son, take care of those annoying glitches (I get at least one bill a week for well over $100,000), and support you while you go through the path of the military.

    I can also assist you in finding the specialists you need and coordinating with his EFMP coordinators and specialists. There are MANY doctors out there who would love to assist your son. Believe me, I truly understand where you are coming from and I believe it would be in your best interest to contact me, if not to help dig through the frustrations then to be a friend because my daughter is dwindling before my very eyes and I have to have faith that she is going to gain the weight she needs for this surgery she needs to survive.

    Hugs,

    Chelle

  5. Posted March 2, 2008 at 6:05 pm | Permalink

    Chelle:
    I will ask Babette for your contact info
    Looking forward to speaking with you soon
    A

  6. Posted March 2, 2008 at 10:53 pm | Permalink

    Anita,
    First of all, a big hug to you. Ugh. How frustrating. Remind me how old Matteo is?
    Our son Eli had serious allergies to everything and skin problems and after going to pediatricians, homeopathic dr.s, allergists, etc. we finally discoved a formula called Elecare that he could tolerate and I remember really pushing for insurance to cover his blood tests and pay for his formula. You have to go through a lot of back and forth and be assertive.
    I love your positive attitude and the best thing your son is getting right now is a loving mommy!! We are all praying for his road to recovery!!!!
    God Bless,
    Krista

  7. Wendy
    Posted March 4, 2008 at 11:30 pm | Permalink

    *Lots of Hugs* - What an awesome mom you are and advocate for your little one. Matteo is blessed to have a mom like you. I’ll be praying for him and your family. :)

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