Cellulitis and MRSA infection, this stuff is bad: Thoughts?

Posted by rich81 @rich81, Jan 30, 2022

Hello to all, God bless all. Hi, I'm Laura
I have a son that I have cared or for 40 years, and I would not trade it for nothing, he is my life. Born at 29 weeks, he was fully developed, 2 days later seizures started. Diagnosis/ Cerebral Palsy. This is what I call a One in all issue.
Everything stems from this in my son, there are so many issues but now I feel like I'm fighting the gates of hell. 2 years ago he had his first assault of CELLULITIS. AT THIS TIME I HAD NO CLUE WHAT THAT WAS. But I caught on fast. He has had 2 since then. He starts with a pain in his side that basically makes him totally helpless, he cannot even bare his weight. So fast it comes on him, he gets open flesh wounds, it's like something is eating his skin very rapid.
The ER is always good to us. He never has a open wound , it ALWAYS seems to start from the inside and comes out.
The pain is like an electric shock that radiates all over, no one can tell me nothing except it's cellulitis, I think something neurological is going on to. I need some thoughts please.

Interested in more discussions like this? Go to the Infectious Diseases Support Group.

Hello Laura, What a blessing you are to your son, to be caring for him and looking out for his well being by reaching out. Recurring cellulitis is surely an indication of something hiding inside him. MRSA is very difficult to treat, because it is not cured by most antibiotics. When my Mom was in and out of hospital for other illnesses, she acquired MRSA there. Afterward, a special nurse helped us manage her care, and learn how to recognize in advance when we were approaching another episode. It has been 11 years, so I am foggy on the details of her care, and I hope things have advanced since then.

If he has had it 3 times now, it is time for a specialist. Have you consulted with an Infectious Disease Specialist who is expert at treating MRSA? If there is not one on his care team, it is time to find one.

Sue

REPLY
@sueinmn

Hello Laura, What a blessing you are to your son, to be caring for him and looking out for his well being by reaching out. Recurring cellulitis is surely an indication of something hiding inside him. MRSA is very difficult to treat, because it is not cured by most antibiotics. When my Mom was in and out of hospital for other illnesses, she acquired MRSA there. Afterward, a special nurse helped us manage her care, and learn how to recognize in advance when we were approaching another episode. It has been 11 years, so I am foggy on the details of her care, and I hope things have advanced since then.

If he has had it 3 times now, it is time for a specialist. Have you consulted with an Infectious Disease Specialist who is expert at treating MRSA? If there is not one on his care team, it is time to find one.

Sue

Jump to this post

I agree, but to add to our issues , ... Our Dr. Retired and they put another one over us. This Dr. Insisted it was Yeast, even though the hospital says different, she LAUGHED at me when I asked for a referral to the Mayo Clinic, she made us feel terrible, she wouldn't even give any referral to any Desease Specialist, she insisted on a Dermatologist.
All of his info is at her finger tips, but useless to her. Now she will not fill his seizure meds that are a life long need for him as well as a VNS IMPLANT. AT THIS MOMENT I FEEL HELPLESS AND CLULESS AS WHAT TO DO. His needs are now being ignored, I am lost.

REPLY

Can anyone please comment on this , I do not know what to do.

REPLY
@rich81

I agree, but to add to our issues , ... Our Dr. Retired and they put another one over us. This Dr. Insisted it was Yeast, even though the hospital says different, she LAUGHED at me when I asked for a referral to the Mayo Clinic, she made us feel terrible, she wouldn't even give any referral to any Desease Specialist, she insisted on a Dermatologist.
All of his info is at her finger tips, but useless to her. Now she will not fill his seizure meds that are a life long need for him as well as a VNS IMPLANT. AT THIS MOMENT I FEEL HELPLESS AND CLULESS AS WHAT TO DO. His needs are now being ignored, I am lost.

Jump to this post

I am sorry to hear you are going through this without good healthcare support.

We are not able to make medical diagnosis here, as we are all people having medical issues, and seeking answers. But we can make suggestions regarding next steps to take, depending on your son's circumstances.
May I ask, if you are his full-time caregiver, are you his guardian as a vulnerable adult, or is he competent to direct his own affairs? Does he receive his health care through Medicaid or private insurance? This make a difference in what suggestions we can make as far as getting help.
I am hoping with more details, someone here will be able to give you some idea what to do next. In the meantime, I am sending positive thoughts your way.

Sue

REPLY

Hello Sue,
I understand this is forum, I'm glad I found it.
I am his full time care giver , Mother, and he has a Duel Advantage through United health care, I am his SDM, Med POA. He is a smart young man, SDM is for Supportive Decision Maker. I keep him involved in everything.
I do not know why she won't refill his seizure meds, This is not right, never has a Dr. Done this before, so today I will have to do something.
I know she's putting a high risk person at risk for no apparent reason.
Thank you for your concern. And any suggestions are better then none. Thank you so much.

REPLY
@rich81

Hello Sue,
I understand this is forum, I'm glad I found it.
I am his full time care giver , Mother, and he has a Duel Advantage through United health care, I am his SDM, Med POA. He is a smart young man, SDM is for Supportive Decision Maker. I keep him involved in everything.
I do not know why she won't refill his seizure meds, This is not right, never has a Dr. Done this before, so today I will have to do something.
I know she's putting a high risk person at risk for no apparent reason.
Thank you for your concern. And any suggestions are better then none. Thank you so much.

Jump to this post

Here are some suggestions that might work for you:
If your assigned doc is part of a group practice, you could call the Practice Manager and explain what is going on, or ask to speak to the Patient Advocate. Explain the issues and ask for a reassignment.
If not a group, contact the insurance company customer support staff for help finding a more appropriate provider.
If neither helps, call the state insurance commissioner for your state and ask to speak to their Ombudsman or support person for vulnerable adults.

Did you ask the doctor why she will not prescribe his meds? Some doctors are very cautious/conservative with new patients, and maybe she wants to do a full evaluation herself?

Please let me know what you learn, I can only imagine how scary this situation must be for both of you.
Sue

REPLY

We are not new. She is, but we have been to see her in Nov. She knows his condition. She said filling his seizure meds was not her job, and I needed a specialist . My son may have a implant that needs special care, But I never had someone tell me this about the meds.
He needs a Desease Specialist , And Neurologist that knows about VNS IMPLANT, but he has been on these medicines for Decades, and no Doctor has ever acted like this, and I never saw a Doctor call staph ,MRSA, CELLULITIS , the same thing as yeast infection.

REPLY

Oh yes, this is a clinic , funded by Gov.

REPLY
@sueinmn

Here are some suggestions that might work for you:
If your assigned doc is part of a group practice, you could call the Practice Manager and explain what is going on, or ask to speak to the Patient Advocate. Explain the issues and ask for a reassignment.
If not a group, contact the insurance company customer support staff for help finding a more appropriate provider.
If neither helps, call the state insurance commissioner for your state and ask to speak to their Ombudsman or support person for vulnerable adults.

Did you ask the doctor why she will not prescribe his meds? Some doctors are very cautious/conservative with new patients, and maybe she wants to do a full evaluation herself?

Please let me know what you learn, I can only imagine how scary this situation must be for both of you.
Sue

Jump to this post

Hello Sue, I'm getting back to let you know that we found a Neurologist to take over his meds. That's the only good thing besides my son feels much better. But definitely gotta find him another PCP.. AND a Doctor to keep this stuff under control.
They have done know testing out of the ordinary because the ER Is for emergency. Someone needs to get a diagnosis on this. It seems to act different each episode, but thank you so much. Your nice, thank you.

REPLY
@rich81

Hello Sue, I'm getting back to let you know that we found a Neurologist to take over his meds. That's the only good thing besides my son feels much better. But definitely gotta find him another PCP.. AND a Doctor to keep this stuff under control.
They have done know testing out of the ordinary because the ER Is for emergency. Someone needs to get a diagnosis on this. It seems to act different each episode, but thank you so much. Your nice, thank you.

Jump to this post

Thank you so much for the update. Yes with his complex issues Neuro is a good person for med management. Good luck finding a new PCP to coordinate his care. It's really hard to find "that perfect provider. "
Have you considered finding a Nurse Practitioner? They often are given more time per appointment with each patient. Mine has been a blessing through over 25 years, and actually has 2 doctorates - one in nursing practice and another in gerontology.
Sue

REPLY
Please sign in or register to post a reply.