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Post by vickia on Sept 13, 2006 20:16:26 GMT
Hi. My name is Vicki and I'm new to your site. Just thought I would introduce myself and tell you a bit about my family. I'm married to Dan and we have 2 boys; Daniel is 4yrs and Thomas is 11 weeks old. Just last week Thomas was diagnosed with having Down Syndrome and also AVSD (Atrio-Ventricular Septal Defect). This has come as a complete shock to our family as I only took Thomas to the docs because I thought he had a cold! We now face open heart surgery in the next few weeks to correct Thomas' heart defect but we still don't know very much about his Downs. It would be great to hear from anyone in a similar situation. Also, has anyone else on this site ever had such a late diagnosis of Downs? We feel very let down by every doctor, midwife and health visitor that we've seen in the last 3 months. And we've seen a lot!! I hope that I can learn a lot through your site and look forward to chatting with other parents who can give me hints and tips as well as support and info. Thanks in advance Vicki
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Post by lizzymd² on Sept 13, 2006 20:28:27 GMT
Hi Vicki and welcome.
Awww 11 weeks old, post us a pic. What a shocker, i remember being in your situation, if you've any questions we've all been there some before birth some after. My heart goes out to you, but we're here to help you as much as we can.
I know a woman from our support group in glasgow and her son was diagnosed 5 weeks after birth but he was premature and in special baby unit.
No wonder, can't believe they let you leave hospital, having said that, it probably means good news for his health and muscle tone, can't believe they didn't pick up heart defect, did they not listen to his heart, i thought that was standard in any newborn.
Little lisa was a a late diagnosis as well, jojo will fill you in on how long.
Best wishes
Lizzy
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julie
Junior Member
Posts: 84
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Post by julie on Sept 13, 2006 20:31:25 GMT
hi ya my names julie im quite new 2 this site 2 im 28 an have a daughter whos neally 10 shes downs it was a shock at 1st cuz i was only 18 at the time but shes amazin an really is the best shock iv ever had if ever u want 2 talk bout anythink im here 4 u cant believe uv only jus found out take care chick
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Post by Daddy2Josh on Sept 13, 2006 21:21:06 GMT
hiya vickia Welcome to Up for Downs. Please have a good look round & tell us a little about yourself. If there is anything we can do to make you comfortable just let us know XXXXX
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Post by Rilith on Sept 14, 2006 11:16:42 GMT
Hiya Hunni.
Sorry to hear about your awful shock. I can't believe its taken them 10 weeks!!
My DD also has a heart defect too, hers is a little complex but also has a complete AVSD. She has already had a few surgeries.
If there is anything I can help you with, advice, or if you just want to ask if this is normal for a heart baby I am MORE than happy to help out.
I hope you settle in nicely on here.
(((((((((((HUGE HUGS)))))))))))
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Post by Jojo on Sept 14, 2006 17:15:56 GMT
Hi and welcome aboard!
Lisa was 6 days old before it was picked up, and about 2 weeks old before we knew for sure.
Was a massive shock, which I didn't take too well at the time, but the more I found out about Downs, the better I felt, and Lisa is 17 months old now and an absolute angel, very contented and very outgoing!
What a shock at 10 weeks!! Though I'm glad I found out a little later as I expect finding out straight away, when telling everyone that your lo has arrived, then having to explain straight away that they have downs must be pretty hard.
Well, we're all a friendly bunch on here, and any questuions don't be affraid!!
Look forward to getting to know you, would love to see a pic of Thomas, I bet he is gorgeous!
Take care hun, Jojo.xxx
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Post by njcorbett on Sept 14, 2006 21:07:19 GMT
We found out within an hour of birth, but by that time Ryan had texted everyone to let them know the flavour etc. so we let a few people know and asked them to pass on the news as we also had a complete AVSD to handle. Lucy had her surgery at 5 months and has not looked back since. She doesn't have her next cardiology appointment until next Sept.
If I can help with any questions etc. just shout. Take care Nicola
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Post by vickia on Sept 15, 2006 6:30:55 GMT
Thank you all for your support. I think I'll like it here! Thomas is going to me readmitted to hospital today as his meds don't seem to be working properly (he's on captopril, frusemide and spirolactone) and his feeding is dropping every day. I feel totally stressed out by this but it is nice to know that there are others that have been through this and come out of the other side. Thomas has complete AVSD too and I never realised it was quite so common. Anyway, must dash off to get my other little one ready for school. Just wanted to say thanks really and I'll keep popping in when I'm not at the hospital. xx
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Post by Rilith on Sept 15, 2006 8:24:27 GMT
A quarter of babies with downs have a CHD and the most common one is AVSD. I know its a scary stressful time for you right now hun, but you will do just fine. Which Hospital is Thomas under?
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Post by Jojo on Sept 15, 2006 10:44:47 GMT
Good luck with your appointment, and keep us posted when you can.
He is gorgeous by the way!!
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Post by vickia on Sept 16, 2006 14:55:32 GMT
Hi all. Thomas came back home today. He's doing fine now, just need to spk to dietition on Monday about some high calorie milk. They think that his op may be brought forward a bit because of his feeding and breathing getting worse. I'm terrified now. We have an outpatients app in 2 weeks and should get a date then. Thomas will have his op at Leeds General Infirmary. Has anyone else here been to the LGI?
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Post by Rilith on Sept 16, 2006 15:15:09 GMT
Not been to leeds, but have heard they are very very good. He'll be in safe hands there.
Holly is on a high cal milk too. She is NG fed aswell (tube), weak suck and tires easily.
I always told myself, if it was so serious the babes would be in hospital all wired up. Thankfully its not the case.
Have they sorted out any O2 for you??? Ask the community nurses about it when they call to see you, they should come out to you pretty regular now. They are fab at sorting things like that out. and they can push the dietitian for you as weel so you get seen sooner.
Take Care hun
XXX
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Post by vickia on Sept 16, 2006 19:17:49 GMT
mmh. I'm a bit confused now as we haven't been assigned a community nurse. The next time we will see anyone is on the 27th when Thomas has his outpatients app. When we were in the hospital yesterday the docs said that if Thomas' feeding keeps falling then an NG tube would be the way to go but we won't be having any follow up at home. The dietitian will ring us but thats about it. We don't even have any special growth charts that I know are available for babies with Down's. Is this normal or have we been abandoned?? Sorry for all the questions. All this is new to us!!! Its just so nice to have someone to ask all these questions. xx
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Post by Daddy2Josh on Sept 16, 2006 20:16:13 GMT
hi vicki
not sure about the community nurse etc, but as for the growth charts we didnt actually get them for josh until we saw our consultant community paediatrician in march & josh was born in november. have you been assigned a community paed?? as ours has been a great help in getting various referals done.
hope that helps a teeny bit!
best wishes
adam
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Post by Jojo on Sept 16, 2006 20:36:10 GMT
I pressuming we all have 'The red book'
If this is the case, they put the downs charts in mine within a week after finding out.
It does seem like you've been a bit abandonned hun, here in Devon, I have had loads of support from day one. I can't praise the system enough.
If you're ever worried your H/V should be able to help until you get a key worker, (which I' also pressuming you'll get)
Perhaps have a word with your H/V anyway. Hope you get the support you need, as it IS out there.
xxx
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Post by Jojo on Sept 16, 2006 20:43:19 GMT
Can I add, I have rarely seen my key worker. The main people I'm in contact with are the consultants, which is only every 6 months atm...and Portage, (which you will get soon,) and I see her every 1-2 weeks. She is a God send, and does all the chasing up for me. Lisa loves it when she comes around. She gets a full hour of undivided attention from 2 people!
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Post by Rilith on Sept 16, 2006 22:19:45 GMT
Get and see your GP.
Tell him to do a letter to the Paed at the local hospital and ask for a community/district nurse to call. Tell him that Thomas has a heart defect and no-one has mentioned anything to look out for, and you are worried about blue spells and someone has mentioned that he should be able to have home oxygen. Tell him that you are also worried about feeding and weight gain. Again the nurses will come out and do the weighing, failing that the HV can do it for you.
Tell him as well that you have had all this dumped on you in the last few weeks and you feel let down and abandoned. If your GP has anything about them they will do all the letters of referal ASAP.
You should also get a social worker assigned.
Don't forget to order your DLA forms and get them filled in ASAP. I know money is the last thing on your mind ATM, but trust me, it helps when it comes to stopping in hospital and living on takeaways and junk food.
There are loads of people out there that are there for you. With it being a new diagnosis it can take a little time for them to get to you. There is no harm giving them a push to get them to you quicker. At this moment in time you need all the support you can get.
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Post by vickia on Sept 17, 2006 12:27:04 GMT
Thanks for all the info. I'm glad someone knows what to do cos I wouldn't have a clue!! I'll get on to it this week and get things sorted. xx
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Post by Jojo on Sept 17, 2006 12:45:52 GMT
It does all seem really confusing to start out, but it will all settle down soon, and you'll get to know people, as Rilith said.
And yes, Sort your DLA out, as it can take ages to go through the system. As Rilith says, it will be the last thing on your mind atm....but it will really come in handy, even for toys and such, which can be expensive.
Lisa didn't get it till she was over a year old, but hasn't had any medicle problems, so really had only the same needs as 'normal' child.
I took Mash's advice on filling the forms out, and got it all sorted, so if you're confused Mash is a good person to talk to about it.
Oh and not forgetting carers allowance, which you should get if you get the middle rate DLA or higher. Not sure if you can claim it on lower rate.
If you're ever confused, ask, there should always be someone around who can answer your question.
Take care, Jojo.xx
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Post by pinkshell1110 on Oct 4, 2006 20:26:58 GMT
hi thomas is beautiful. my little boy charlie was born eleven weeks early weighing only 1lb 14 ounces and it took them 8 weeks to diagnose Down's and they only tested him after he was diagnosed with an ASD and VSD, the nurse looking after him said she swears he "caught" it .After such a long time it is hard to take in but as we said we loved him so much before the diagnosis those two words didn't change a thing.Your son will bring you so much happiness ,joy and love unconditionally.Good luck with surgeries and keep in touch.There is so much information on this site and someone to talk too,the Downs heart group are also a great source of information.Best wishes michelle
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