Thinking about an ICD for Matan

[Danielaeh]

Hi!

Sorry for not writing..
We were very busy making echo's. having consultations. blood tets, etc...
We were in Canda - Toronto and then back home in Haifa - Israel we had more app. trying to decide our son's future.
Matan is now 6 years old.
He has severe hocm.
He is in 1st. grade.
He is on Betta blockers and anti-arrythmics.
There is no big change in his condition. but two different cardiologists adviced us to implant an ICD.
I would like to hear from other families who went throu the same experience.
Thanking you in advance for sharing,
SHANA TOVA!!!!!
Daniela - Mohter to Matan.

[Reenie]

Re: Thinking about an ICD for Matan

I'm not sure what I would do in your shoes, but good luck with whatever decision you make.

Reenie

[Glen Beamish]

Re: Thinking about an ICD for Matan

Hi Daniela, I am not in your shoes, but two endorsements from two different cardiologists is a strong recommendation.
I wish you luck in your decision.
As a matter of interest, I live just outside Toronto and have been seeing Dr. Wigle annually at Toronto General Hospital for 30 years now.
Who did you see and what made you come to Toronto for this??

[Linda]

Re: Thinking about an ICD for Matan

Daniela, Our son was 12 when he got his first ICD, 10 for the first pacer. I didn't feel indecision over either, it was pretty clear he needed both. No invasive procedure is to be taken lightly, so ask lots of questions and make sure you feel comfortable with the person doing the procedure if you decide to have it done. It's a tough call, but it's that assurance of emergency treatment immediately available to him should he need it. Wishing you the best as you work through all of this, Linda

[Danielaeh]

Re: Thinking about an ICD for Matan

Thank you for all the answers and wishes!
In Toronto we were in The Hospital for sick Children.
We were visitng famil members and decided it will be an opportunity to have a consultation.
The Name of the doctor in Toronto was Dr. Lee Benson.
Other Dr. who was visiting Israel was Dr. Fananapazir who works in the field of genetics and HOCM.
I know we still have a long way before the final decision.
We still have to find the right elctro-phisian and find out if it is possible to do perform the implantation in Israel.

Daniela.

[Sarah]

Re: Thinking about an ICD for Matan

Dear Daniela,

Dr. Fananapazir is very well known to many here. While I'm sure that there are some people who had good service from him; it is my understanding that he is responsible for flagrantly ignoring informed consent laws regarding research and treatment while he was at the NIH (National Institute of Health) and has had several lawsuits against him. If he were the last doctor on earth, I wouldn't go see him.

I don't know anything about the Toronto doctor, but I'm sure someone here does and that they'll report in. Or you can call Lisa and ask her --she keeps tabs on who is really an HCM specialist and who people have had trouble with.

You don't say if your son has risk factors. V. tach, fainting, septum over 3cm, family history of sudden death, etc etc. This is what the decision is usually based on.

good luck,

S

[Lisa Salberg]

Re: Thinking about an ICD for Matan

My thoughts are with you and your neighbors in Haifa - I worry about you all each time I hear of yet again a terror attach. Please stay well and thank you for having the strength to live through such stress and unrest.

Re your son: I would not give much value to Fanapaziar and his opinions he is not well respected in the HCM field, although he is very well respected in his own mind.
The people you saw in Canada have good reputations and are looking at current data. I would feel confident with that. Having an ICD implanted in a child is a hard choice but one that may mean that your child has a chance at a future.

Living with an ICD is not so bad...in fact you quickly forget that it is there!

I will reach out to a family who had an 8 yr old implanted 2 yrs ago and have since had the device fire and save his life.... I will have them PM you.

Be well and stay safe,

Lisa

[Danielaeh]

Re: Thinking about an ICD for Matan

A MILLION Thanks for all the information.
There is no history of sudden death in the familly, but the grand-father and the father have a minor-mild HOCM and Matan's case is severe.
The obstraction is very low in the left chamber of the heart and goes up all the septum-wall.Beside fatigue, he has no other symptoms.
I still feel I do not know enough about the option of implanting the defibrillator.
Why is so diferent implanting it in child?
And how much experience is in this field?

Thank Lisa for your thoughts and help.

[Linda]

Re: Thinking about an ICD for Matan

Danieleah, I have pm'd you with some personal experience about ICD's in children. Hope it helps. Best wishes, Linda

[Lisa Salberg]

Re: Thinking about an ICD for Matan

Why are ICD's more complicated in children...
1. Growth - kids wil grow and room must be given for the leads to move and grow.
2. Length of time the device needs to work - and the amount of replacement devices that will be needed in his/her lifetime.

there are other issues...but these are 2 big ones.

Lisa

[Danielaeh]

Re: Thinking about an ICD for Matan

Thank you for your response.
Yes - We found out this during a conversation we had with Dr. Bulus from Rambam Hospital here in haifa.
He explained it to us very well.
He also showed us a demo-device so we could learn about the size and weihgt.
We also learned about the procedure more and we are doing some reading.
Dr. Bulus adviced us to meet two Doctors - one in U.S.A - Dr. Maron and one in U.K. - Dr. Mckena.
He does not know doctors here in israel with many patients at my son's age (six years old and weights 20.5 Kg.) who performed the implantation of AICD.
I would love to hear from mothers with children that had the implantation in such an early age in life.
And doctors with experience on children his age.
The septum size in Matan's heart is 3.5 cm.! So we understand how important is to find a solution.
When he was 1 year old we made a consultation with clinica Mayo in the U.S.A and were told (also in our last visit in Canada - Toronto) that myoctomy operation is not a good option for Matan and he is still very little for the alcohol ablation so we know we have to decide - and the main question is - when?

with my appreciation,

[Lisa Salberg]

Re: Thinking about an ICD for Matan

Maron and McKenna are truely the best folks when it comes to overall HCM knowledge. I will tell you that the differences between HCM management can be seen from country to country. I have long suspected the differences in the health care systems may be the root of some differences.
In the USA it is far more common to see a child with an ICD. In the UK they are very reluctant to implant a child. This is not opinion with no basis in fact, this is based on patients I know and cases I have 1st hand knowledge of.
I would suggest a consult with Maron for an evaluation on the ICD issue in the young. You can find his contact information on the links page.
Best wishes,
Lisa

[Dolly (Andrew's mom)]

Re: Thinking about an ICD for Matan

Daniela,

Andrew had his ICD implanted when he was 9. He has done very well with it. Even to the point where we have to remind him about his ICD when he is playing too rough! It really has not slowed him down at all and the peace of mind it has given all of us is unmeasurable!

He will be having an ICD replacement surgery in the next month or so (date to be decided at his appoinment on Nov 14th) The greatest drawback, in my opinion, is the frequencey of replacement surgeries. But even with just 4-5 years in between replacement surgeries (for Andrew's anyway) I feel it is a small price to pay for the security it provides!

[Danielaeh]

Re: Thinking about an ICD for Matan

Hi!

We will have to decide. Our cardiologist knows many doctors in England and I have the feeling he is close to their way of thinking.

Dolly! WOOW it was telepathy!! I remember the first steps Andrew and your family with the ICD.
I read all your last posts about andrew and his maturation.
I can not believe it pass so many time!!!

Thank you and Lisa for writing.