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Zellweggers syndrome infant

I am soon to be working with a 2 YO with zellweggers syndrome; my basic understanding is the child is on hospice, the disease process is sort of an over abundance of mucous and the child lacks muscle tonus. I am concerned about using techniches to open the flow of mucous, will this child be even able to cough effectively enough to expectorate ? Has anyone had any experience with this? I have worked with infants , and have worked with adults with CHF, pnumonia etc.

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Permalink Reply by Tina Allen on March 22, 2011 at 9:09am

Hello Hanna,

It is hard to anticipate the child's ability to expectorate without meeting the child in person. If the muscle is too low, then this could present a challenge. Proper positining could be helpful, if this is the case. One thing to remember when a child is in hospice, our main goal is usualy to make them as comfortable as possible. So, using gentle, nurturing pediatic massage techniques will be your best route. It would also be advised that you show the parents some techniques. Parents can often feel disconnected from their child when their health is compromised.

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Permalink Reply by Hanna Eakin on March 22, 2011 at 4:48pm

Thanks Tina, i appreciate the comment. Yes, from what I have been able to gather, he is not compromised in his breathing as of yet. I think my best bet is to educate mom and help her to have a sense of giving comfort to her child.