Hello I'm New

[sarseesue]

Hi there

I am Sarah from Kent, UK and have an 11 month old son, Oliver, who was diagnosed with Noonans Syndrome and HOCM at 2 weeks old. He is on beta blockers three times a day and is seen by the cardiologist at The Royal Brompton in London every 3 months. At present, his condition, although described as severe, is clinically stable with SATS of around 98%. He does sweat a lot but other than that you wouldn't know he had his condition to look at him.

His heart condition is linked to his syndrome as the rest of the family have been tested and are clear and HOCM is strongly linked to Noonans. He also has feeding difficulties and is fed via an ng tube with high energy milk and supplements. He has club foot which is being treated by the ponseti method.

He is the most gorgeous little boy and the hope is that his condition will get better or remain the same. We are due for another echo next week so fingers crossed.

Anyway, just wanted to introduce myself and look forward to chatting with you. I belong to a heart forum in England but am the only one with an infant with his condition so it would be nice to hear from somebody in a similar position (not that I wish this on anyone!).

Sarah xx

[Largehearted]

Re: Hello I'm New

Hi Sarah.

So sorry to hear about your son. There are many people in the HCMA who have walked the path of having their kids diagnosed. I am sure they will soon chime in to say hi and offer you the benefit of their experience.

Peace,

Leon

[Linda]

Re: Hello I'm New

Welcome Sarah - Linda

[Pam Alexson]

Re: Hello I'm New

Welcome Sarah.

Pam

[mflanagn]

Re: Hello I'm New

Hello Sarah, I have two children who are now 17 and 14 that were born with HOCM and Noonan's Syndrome. We didn't get the diagnosis of Noonan's Syndrome until my son was 2 and my daughter 5. We had many feeding issues and almost had to have a feeding tube when my daughter (now 17) was 6 months old. I know what you are going through, although it has been a looooong time. They are doing very well. The Noonan's is mild and there are no deficits for my kids. They've had open heart surgery for their HOCM and are doing well since. I don't know if this helps, but you can see they have outgrown many of the noonan's issues and are doing great. My son was recently in China and my daughter is in Hawaii right now. They lead very normal lives except for the no competitive sports issue. I used to be on a Noonan's support group on the web, kinda like this one. Maybe you should look into that. It helped to hear what other people went through.

Take care.

[gfox42]

Re: Hello I'm New

Hi Sarah,
Welcome.

Gordon

[sarseesue]

Re: Hello I'm New

Thanks everyone.

Hi Michelle, great to hear from you. Thanks for telling me about your children, they seem to be doing very well. Oliver's feeding (well lack of feeding) is getting me down at the moment but have an appointment at the end of the month to see his dietician and Speech and Language Therapist so will see how that goes. I know it will not be an issue forever but it does feel like it sometimes.

At the moment, his cardiologist is happy to continue with beta blockers as they seem to be doing their job in slowly the process down. He said at our last appointment that he would continue with drug therapy until or if anything should get worse and then would talk about surgery - so at the moment things look good. We have another appointment for an echo next week so fingers crossed that things have improved or stayed the same.

With regard to his Noonans, he has bright blue eyes, curly hair, short neck, wide spaced nipples, low set ears and is not growing in length very fast - he is very small for his age He is incredibly cute though and that part does not bother me at all, it the heart that does.

Your children seem to be doing very well and it is very encouraging to hear from people like yourself with good stories. I will check out the Noonans group thanks. xx

[mflanagn]

Re: Hello I'm New

Wide spaced nipples, wide set eyes (Blue), curly hair (slightly on my daughter, son's stick straight), web neck, short stature, low set ears all on my son, not so much on my daughter. They have really outgrown most of these physical features, my son is still small for his age though. He is almost 5'1" and is 14. They project him to be 5'5" when he is done growing, my daughter is 5'2" and probably done growing. I hope the same will happen for your son. We did have occupational therapy for fine motor delays in my son.

Take care.

[Carrington]

Re: Hello I'm New

Hi, Sarah!
Welcome!

missy

[sarseesue]

Re: Hello I'm New

Hi Missy.

Hi Michelle, my husband is 5'5" but has no outward features of Noonans. We haven't been tested for the Noonans but have for HCM and are clear. Although, our other son James, 11, will have to be tested soon, the consultants suggested when he is around 14/15. They are almost convinced that Oliver is a one off - cute little thing. Oliver has just had an assessment with an occupational and physiotherapist and is starting therapy sessions at the end of the month for development delays, so we will see how that goes. Anyway, great to hear from you again and I am sure I will have some more questions along the way, I hope you don't mind

[tripperthez]

Re: Hello I'm New

Welcome to the party love. We have your back. God bless.

[lara_kj]

Re: Hello I'm New

Hi Sarasue, the doctors suspect my 7 month old has Noonan's although all his tests have come back negative. He had HOCM and Pulmonary Stenosis which are indicative of Noonan's...from what they tell me. There are no physical attributes he shows right now. He too is on Propanolol but for treatment of SVT not HOCM. Would love to get in touch with another Mum with similar issues...I have a ton of questions and there are only two other kids (5 and 9) like my son in the city I live in...

L.

[Suzanne]

Re: Hello I'm New

Welcome. This is a wonderful support site. I have a 6 yr old wth HCM but no Noonans. Good luck with his progress, I hope things go smoothly for you.

Suzanne

[EmilysDad]

Re: Hello I'm New

Suzanne,
I don't know if you made contact with the Noonan's group, but they can be reached at: http://www.noonansyndrome.org/
Bob

[sarseesue]

Re: Hello I'm New

I have some very sad news. Oliver passed away suddenly on July 25th at home. He was 11 months and 2 weeks old and the most gorgeous baby. I will never forget him, I think about him every minute of every day. He had a very severe case of HOCM. I will not be posting anymore but thank you for all your messages and I am constantly thinking of all the other children out there with Noonans and HCM, wishing them all the very best. Love Sarah xxx

We have a fundraising page for Oliver at www.justgiving.com/dpearce for a charity in the UK if anybody wishes to look