Diagnosis after 15 month and my baby has something the matter with her heart

[mummytopebs]

I dont know what to feel. I am pleased we have finally got a diagnosis as it is better to know but I am now very scared.

Anyone any experience of heart problems in children, I just really dont know what to ask or say.

[lisad123isasnuttyasaboxoffrogs]

have the given you any idea of what is wrong? how they plan to deal with it? anything you need to do in the meantime?

Its a good thing that LO has got to 15 months before discovered as clearly shes doing well and its not major panic straight away.
Which hospital is she under? what signs has she got?

[deepbreath]

I'd like to second what lisad said. Also, as you have a diagnosis, at least the doctors can now keep a close eye on your daughter if they need to. I know it is kind of a double-edged sword though, my daughter was diagnosed with Marfan Syndrome when she was around a year old. She has the cardiac problems that go with that, but has annual echocardiograms and has been on medication since she was 18 months old.

[mummytopebs]

She has been on medication since she was 8 month as they knew she had some kind of blood vessel disorder as her hands kept turning black and her feet turned purple. She has had 3 echos but the problem has never come up on these, but she had an mri angiography on Tuesday and it showed up an irregular descending aorta beyond the left subclavian origin and the left subclavian was not well seen, basically i think it means a narrowing in blood vessels to her heart. She is having a ct scan next week before they decide what to do. What can they do?

[lisad123isasnuttyasaboxoffrogs]

oh I remember your posts been following for ages, I bet your glad they finally got somewhere as last time they were talking about some doctor aboard right?
I would wait for CT results and then go from there. Which hospital is she under now?

[Marne]

Hi Mummytopebs, i have seen you other thread (was going to suggest you posted here), sorry i have no expereance of heart conditions but i hope they get to the bottom of your dd's problems and hopfully its something they can fix. Can the blood vessels be widened?

[mummytopebs]

The bloods got sent to Germany but what they were looking for came back negative so they have took some more but unsure what they are doing with them - epsom testing I think something to do with breaking the blood down further.

I think blood vessels can be widened but not sure what they can do. I have looked up the subclavian origin on the net and that sounds like its in the neck area (i think a vessel from the neck to the heart) so maybe this is why it wasent picked up on the echo. She is under Newcastle hospital.

[CRAZYCREW]

Hello there there is fab site called heartline and if you google it and register soembody will be able to help you with that condition.

My little boys has cctga, his heart basically is the wrong way round and upside down and long term it will fail and need transplant but I know very little about you little ones condition. My little boys is on directics and other meds also. Good luck and the freeman hospital in Newcastle is fanatastic and he could not be in better hands. Nicola

[duckypoo]

I remember your other threads, hopefully there is something they can do, hope you get the answers you need.

Bump.

[mummytopebs]

Crazycrew the main reason I am stressed at the minute is we are due to o to spain in 2 weeks and now I dont want to take her, but it is difficult as we are goiong with family who paid for it for us. Wwyd? Can the pressure on the plane affect the heart? And also her consultant wont dianose till she has had a ct next week to double check. Are the Mri's ever wrong?

[CRAZYCREW]

Hi I do not know but we aregoing to Frnace and driving as did not want to take the rish and insurance was very expensive and some companioes quoted £800. I think because you did not know of the cndition when you booked you will be covered. What I would do is ring the hospital and check for details with consultant and get a letter stating what is wrong so can be handed to hospital over there if needed.

Dont worry too much at all... my email is [email protected] if you need to ask anything else. Nicola and good luck!

[devientenigma]

Hi, I was told by the cardiologist my ds was NOT to fly. HTH x

[mummytopebs]

What is the matter with your ds heart devientenima?

[CRAZYCREW]

we have been told Harvey can fly but needs to be insured and it is us that dont want to fly... please look on heart line as they will know more about your childs condition and try not too worry too much please. They are amazing as what can be done done now.

[mummytopebs]

Thanks crazycrew I have registered on Heartline I will have a proper look when I get dd to bed

[devientenigma]

When we were told not to fly he had tetraology of fallot. However since his 2nd op he has been able to, although he is still not to get too stressed etc. He has numerous stress factors in his life already. He's on prozac to keep him calm. Noise is one of his issues, so this has put us off flying. Plus the fact that once up there is no getting off and then having to do it all again to get back. Then knowing his other issues, knowing we may not get home. HTH x

[Twinky58]

Hi, just to say, my daughter had a double hole in the heart when she was born, was operated on at 3 months old, and we have never looked back. She has her heart checked once a year, and everything is fine and her heart is in full working order. This is just to reassure you that if it does come to an operation, they can do wonders. Hope you sort out the flying question, there must be someone to give advice, British Heart Foundation have a helpline, and have a lovely holiday.

[mummyplum]

Hi there so sorry to read about your daughter - i'm pretty new to mumsnet but my daughter has had a similar condition since birth. Infact your post is so similar to my story. The doctors are still unsure ofthe exact cause (no mri done), but we are on heartline :). Please feel free to pm me there, i am lollypop. x

[mummytopebs]

Hi Mummyplum I still havent had a chance to have a proper look at heartline so not sure how to message etc yet. Has your daughter had similar symptoms to my dd or similar problem with the heart?

[mummyplum]

She has similar symptoms but is nearly 4 yrs old! She has episodes of black/blue/grey limbs since birth, leg pains due to terrible circulation, grade 4 heart murmur but normal echo. A 4 limb BP shows abnormal results. She also has a slow heart rate during the episodes, which again suggests a blockage or narrow vessel. They are sure it is something cardiac but as we have the added complication of seizures (other medical prob) they are hesitant to sort it all out! The consultant has so far blamed immature blood vessels, acrocyanosis, reynauds the list goes on.
The symptoms my daughter has are described as similar to "coarctation of the aorta", which is a narrowing, but they can't see this on the imaging. She was on the list for an MRI but it was cancelled.
As for flying, I would recommend a chat with the consultant/nursing team involved in your childs care as the advice varies with the condition.

The children's heart federation is really helpful, including the afore mention heartline and BHF. Hope you find the help needed. Hope to see you on HL when you feel ready :) x

PS Happy Easter [bugrin]

[mummytopebs]

Mummyplum that is so interesting, very like my daughter. I would push for the Mri as nothing has shown up for dd on echos. We are waiting for a ct scan with the dye as apparently this is clearer for what they are looking for.

Was your dd in pain with the episodes when she was a baby? or is she now? DD didnt seem to be bothered by them but as she is getting older she rubs her hands a lot but she is to young to tell us if they hurt.

How do you stop the episodes when they are happening? Is she on any meds for it? My dd is on nifedipine and was on asprin but has just come off it as she had a tummy bleed.

Does she get blisters on her fingers? Can she feel heat in her fingers?

Sorry for the questions but I have never meet anyone with the same symptoms as dd, it has had her consultant baffled x

[mummyplum]

Hi again, I don't mind questions :) I have felt the same.

We have no medication, she is entirely unmanaged due to the opinions of our current consultant (however the nurse says this is highly dangerous!).

As a baby she was not too bothered by them but as she has got older, she has become uncomfortable by the experience. We had a little go at putting her legs to her chest as this increases blood flow to the heart during an episode, although she no longer tolerates this. We also do the actions for "twinkle- twinkle" when just her hands are affected, which doesn't always work but i feel like I am doing something!
She has had blisters on her feet which happened once and never again! Her extremities become very cold with the episodes.
The extremes of weather are particularly difficult for my DD, I am not sure if you have found this?

Sadly for us we have not found a sympathetic consultant. Our next step is for a second opinion!

[mummytopebs]

I would ask for another consultant. Our original consultant said it was normal, then it might be the way I was holding her!!!!! My gp was not happy with this as I have loads of photos of her during the episodes and said it was not normal, so he refferred her to a bigger hospital. Her next consultant has been fantastic and goes out of his way to help, he started medication straight away.

The winter is terrible but my dd seems to be cope ok with minus temp and is worse when the weather is between 1 and 6 degrees!!! She also has terrible episodes when she has a temp of over 38. Yes dd extremities go very cold and she usually has blisters on her fingers. Have you ever took your dd swimming? We have not done this as of yet as she goes blue in the bath so darent risk the swimming baths.

I have been having a look on the net about what was said on the mri report and the bit about the left subclavian artery seems to be associated with the head so was just wondering if our dd's do have the same if that could cause your dds seizures.

I would definitly push for a second opinion. Have you any pictures of when the episodes happen? As these are what dd consultants realy on

[mummyplum]

God, I can't believe I am reading this! Everything you describe is how my DD is, even down to the consultant! He will not allow her to be reffered back to the cardiologist at the moment, so I am gathering some information from her hospital records and PALS are helping. It has been a real battle so far.
Yes, I have taken D swimming but as she has behavioural difficulties she does not enjoy it. She does go purple in the water (bless) but I combated that with one of these www.konfidence.co.uk/acatalog/Warma_Wetsuits.html which really helped keep the chill off DD.
I have alot of pictures of DD when 'blue', and a couple of videos of her seizures. GP and others that have seen them all say it is not normal in the slightest.
It is mainly the extremites. Have you ever noticed your little girls tongue go blue? DD's lips & tongue have been known to go black, that was in her worst episodes though. All of this has me wondering if it is the same condition, it really is very similar!

[saggarmakersbottomknocker]

Do you have a date for the scan yet mummytopebs.

Hello mummyplum/lollypop

[HansieMom]

I think it would be helpful if you taught your daughter sign language, at least a few signs. My grandson is 2.5 and only has 3 words, and has started ST. His parents started teaching him (and themselves) sign language and DG has learned signs quickly. One he knows is 'hurt'. Your DD could use it to tell you where she hurts. Another helpful sign would be 'cold'.