|
|
Post by paulineuk on Jan 11, 2005 6:42:08 GMT -5
Hello.
Can anyone give me some advice please:
Nicky is 17 and has -
DS
AVSD with pulmonary hypertension
Eisenmenger Syndrome
chronic lung disease
gasto-oesophageal reflux
oesophagostomy and gastrostomy
thrombocytopaenia and thrombocythaemia
polycythaemia asympotamatic.
He has blood tests every three months and his HB is steadily rising, today it is 25.3 so he is at severe risk of a stroke. Our paediatrician was off sick today so we saw another paed who has known Nicky since he was a baby. He asked if venesection had ever been suggested and I told him it had but decided against as Nick could go into shock during the proceedure and it would have to be done every few months. The Pead, the cardiologist and the heamatologist decided after his last blood count three months ago which was 24.3 to 'wait and see'. At the moment his platelet count is stable at 116 and his heamatocrit three months ago was 71.
I am really getting very concerned and worried and wonder if I should be insisting that he starts on medication or just go along with the 'wait and see'. Any suggestions?
Pauline UK
|
|
|
|
Post by shellk on Jan 11, 2005 8:33:36 GMT -5
Pauline,
I have no advise or experience..Just wanted to send positive thoughts and prayers to you and Nicky
Hugs to you both !!
Michele
|
|
|
|
Post by Jessie on Jan 11, 2005 11:13:47 GMT -5
Pauline,
I'm also so sorry to hear about Nicky's condition. Honestly, I have never even heard of half the things you have listed, so I will be of no help to you - other than I will definitely keep you and Nicky in my prayers!
Jessie
|
|
|
|
Post by momofrussell on Jan 11, 2005 12:20:58 GMT -5
Are the test results due to the things you listed that Nicky already has? Or is it because something else is going on? I guess that would be my first question. I don't have first hand experience with what you are going through, but I would think you need to have a long talk with the docs and weigh out JUST what is best for Nicky for right now and long term. There is going to be pros and cons to everything... just weigh it all out. And if you aren't getting what you need from any or all of the docs... seek a 2nd opinion or even a 3rd if you have too!
Good luck Pauline and BIG HUGS to you and Nicky!!!! Keep us posted!
A.
|
|
|
|
Post by meghans_mom on Jan 11, 2005 16:11:37 GMT -5
Pauline, I can't be of much help either except to let you know that Nicky and you are very much in my prayers! hugs to you - laurie
|
|
|
|
Post by Debi on Jan 11, 2005 18:43:42 GMT -5
I am so sorry Pauline.. this is beyond scary stuff. Like the others I have NO idea what would be the best course of action but if he is relatively stable now I would be thinking like A and explore all options. Get several opinions so perhaps you can make a good decesion in the near future. I DO know Nicky is very lucky to have you as his Mom.
|
|
|
|
Post by christie on Jan 11, 2005 20:44:50 GMT -5
Awwww PAULINE girl, I am sooo sorry to hear this  Medical stuff always gets me confused but truly I have not heard of most of what you listed. Blessings going out to NICKY from New Jersey and HUGS to you girl  Christie ~ |
|
|
|
Post by justinsmom on Jan 12, 2005 8:52:15 GMT -5
Hugs and Prayers headed your way! I'm sorry Nicky is having a really rough time these days but I agree with the others you know what is best for Nicky after all you are an AWESOME MUM  and you will do what is best for him. |
|
|
|
Post by Trammy101 on Jan 19, 2005 17:45:06 GMT -5
On bariatricsweightloss.com there was an article comparing the different doctors offering weight loss treatments, Atkins, Surgery and the Bernstein Health and Diet Clinics. Does anyone know of any other sites like this one that talk more about bariatric or medical approaches to weight loss? I trust doctors in this sort of thing and hope that I can pick the right specialist for me by doing more study. If any one has any good sites they recommend, please let me know!!! |
|
|
|
Post by kimnz on Feb 8, 2005 4:45:21 GMT -5
Hi Pauline,
when you talk of venesection is this to lower the viscosity of the blood?
Jordan also had polycythemia at birth and with his approaching bowel surgery I voiced my concern to the surgeon in regards to this. There was talk of Jordan having to have blood taken from him when he was just born because of the polycythemia and mention was made also of the possibility of stroke.
After viewing your letter I will definitely be speaking to them about this before Jordan's operation.
I am sorry to hear of Nicky's health situation. I hope you don't mind me asking, is the pulmonary hypertension reversable especially when you mention chronic lung disease? I was under the impression it was not and if so I imagine that Nicky would probably be on oxygen from time to time.
I have a friend here whose little boy (now 11) was not diagnosed until some damage was done and he is on oxygen when needed.
It must be very tough to sit back with the "wait and see approach" when your son is obviously not a well boy.
If I am getting too personal please feel free to say so.
I am thinking of you.
Kim nz
|
|
|
|
Post by Jessie on Feb 8, 2005 8:10:19 GMT -5
Hi Pauline,
Wondering if you can give us an update on Nicky? You guys are still in our prayers.
Jessie
|
|
|
|
Post by robyn on Mar 23, 2005 7:30:41 GMT -5
This is the first time I have come across this site and I pray your childs' health has improved. Please everyone look into Mannatech products, I don't know if you have heard of them , they are fantastic, they have given my familys' health back . please please check them out
|
|
and you will do what is best for him.
jackie
