Finding a medicine for my complicated son

My anxiety just keeps getting higher and higher. My son had a pacemaker put in last year. He was taking Abilify for Autism. His Electrologist stated that the medicine was aggravating his heart condition. He is diagnosed with a high grade 2nd degree AV block, and bradycardia. The medicine is also causing hypo tension, vitamin D deficiency, and low cholesterol. We took him off of it.

 

He is now having excessive scarring in his heart around the electrodes. So, his pacemaker isn't picking up the natural heart beats (reading at a 1.8 on the EKG). The doctor left the pacemaker as is, and we are sending monthly reports to make sure it doesn't drop down lower. He explained that there seems to be a pocket of unhealthy scar tissue around the electrodes.

 

He has now been diagnosed with mixed bipolar with psychotic episodes. So now he is being treated by the Electrologist, PCP, and Psychologist. The Electrologist referred him to his PCP for treatment of the symptoms, PCP only treated the Vitamin D deficiency and said that the blood pressure can't be treated because the medicine may affect his heart. Then, referred him to a Psychologist for treatment of the mental health. He starts therapy today, but has to go to a different Psychologist for his medicine next week. The Psychologist gave me the option of placing him at an inpatient hospital last week to get him on medicine, but I refused because I'm afraid that him being by himself will cause more anxiety. Now I'm second guessing myself. I feel like the conditions are all connected, and need to be treated by a team of doctors instead of completely separate locations. Nobody is talking to each other. 

 

I am in a catch 22 here. I feel like my son is falling apart and is just bouncing between the doctors. We need to find him new medicine to treat the bipolar without affecting his heart. So far, everything that I have found can cause aggravation to heart problems. 

 

He has tried: Ritalin (made him like a zombie), Adderal (caused night terrors), Abilify (aggravated or caused heart block, bradycardia, hypotension, low hdl cholesterol). Atavan (they gave it to him in the ER when having a psychotic episode, but no supposed to take if you have heart problems or hypotension).

 

Looked at: Lithium (can aggravate heart problems, Hypotension), Tegratol (can't take if have heart problems or psychosis), Depakote (can cause irregular heart beat, liver damage), Lamictal (can cause change in heart rhythm), Topiramate (shouldn't take if have heart problems), Risperdal, Clozaril, Seroqul, and Zyprexa all can cause heart problems and hypotension.

3 Comments

" Can" does not necessarily mean " Will "

by IAN MC - 2017-12-27 11:38:40

Just an observation ...  you seem to be dismissing lots of drugs because they " can" cause certain side-effects.  This may be unduly cautious and it is highly likely that your son may never encounter any of the listed side-effects

Drug side-effects have to be listed by law even if only a tiny percentage of people experience them and there are various categories of side-effect :_

Very Common ( more than 1 in 10 people experience them )

Common ( between 1 in 10 and 1 in 100 people experience the side-effect )

Uncommon ( between 1 in 100 and 1 in 1,000 people) 

Rare ( between 1 In 1,000 and 1 in 10,000 )

Very rare  (  fewer than 1 in 10,000 )

The side-effects which most concern you may never happen with your son

I do hope that you find a drug combination which is suitable for your son's conditions.

Larger hospitals have specialists known  as " Clinical Pharmacologists " whose expertise and training is in the effects that drugs have on the human body. They get involved in finding the right drug combinations for patients who have complex health problems, adverse drug reactions , multiple organ conditions etc

If you continue to have problems this could be a route worth considering.

Best of luck

Ian

 

Being overly careful

by lanena85 - 2017-12-27 11:53:56

Thank you for your comment. I recognize that I'm being overly careful. Seeing all that my son has gone through because of the Abilify, makes it hard not to be. They doctors recognize the threat, and do not want to put my son on any antipsychotic because of the potential side effects since he has already has the heart damage. These are medicines that we have ruled out together. I was to see if there are any people on here with these medical health problems that have had success with other medicines. 

University Medical Center

by BillH - 2017-12-29 00:39:45

You might want to look for a medical school hospital where they can coordinate all of the spcialties. They also pharmacy specialist to help work through the different meds.

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Hi, I am 47 and have had a pacemaker for 7 months and I’m doing great with it.