Advice needed

[Mar19901]

Hi haven't posted anything in very long time as things have been very hard with my 18 month old son.

Bit of Background..
My DS was born at 41 weeks by emergency section. after birth he was well although several doctors had noticed his breathing rate was faster than normal nothing was ever investigated at this stage. both of us stayed in hospital about 6 weeks due to me having a nasty wound infection which needed me to be in the high dependency unit.
After discharge from hospital I started to notice when sleeping DS took pauses in his sleep (apnoeas). he might have had it all along in hospital but I was very unwell unable to look after him as well as being very drugged up so I noticed it first time after we got home.
After only a week at home at 7 weeks old DS developed a high fever, dry barky cough with a wheeze and recession under his ribs. took him to gp who sent us to local children's hospital where he needed oxygen and feeding support. I was told he was suffering from Broncholitis little did I know than it would be the start of his health problems. Since that episode he went onto have another 4 episodes of hospitalization with oxygen n feeding support needed.
At 7 months old DS was ventalited after developing a stridor thankfully we were already in hospital when he deteriorated so he was taken to intensive care and ventilated. At this point I was told he had right upper lobe lung collapse with very thick secretions. whilst ventilated he underwent chest physio and CT scan showed calcification to lymph nodes.
Since ventilation he has literally had a chest infection of some sort every 2 weeks and is on antibiotics every 2 weeks. we are at a point now where he is becoming resistant to antibiotics so amoxicillin and penicillin no longer work has recently been changed to coamoxiclav and azithromycin.
he is under several consultants including a respiratory consultant and paedritician. in the past year since ventilation we have gone under various tests as there isn't a clear diagnosis as to the symptoms he displays.
he was referred to speech and Language and in November
had a video study done which shows he is suffering from aspiration pneumonia. he is now nil by mouth and fed solely through an NG tube. His consultant has told us his symptoms should improve as his food now goes direct to his stomach so his lungs should clear.
However in the 4 months he has been NG fed his symptoms have persisted and I feel with each episode he gets that little bit worse each time for example his temp goes that slightly higher his oxygen level go slightly lower. we not due to see his respiratory consultant until April as she wanted to see how his chest improves being nil by mouth. we end up in hospital almost once every 2 to 3 weeks.

I guess I really don't know what to do. I don't know what I have done wrong. He also has some delays such as he learnt to sit at 11 months and just about crawling now at 18 months. He also has runny stools all the time as result of antibiotics. his bottom is so sore and have just noticed a blister form on his testicles and totally broken down. feeling really helpless on how to help him. could anyone recommend anything to use on his blister he has been put on timodine for his nappy rash for last 2 weeks and on friday Its been changed to Canestan HC cream as gp said it looks like fungal infection but his bum very raw bleeding and now the blister.

sorry for such a long post.

Aw sounds rubbish. My lo is about your sons ages and we’ve had a crap time too - we’ve chalked up 7 hospital admissions, numerous a and e visit and specalists (different issues to your dc tho). It’s really crap isn’t it - having a young baby is hard enough when they are sick it’s so so hard. So I guess all I’m really saying is I sympathise!
On the things you mention a few things spring to mind which might help -
Firstly is he getting the nappy rash from the antibiotics- use metanium and canestan as antibiotics gives them thrush. Use almost as a preventive every time he has antibiotics.
Use probiotics - you can get baby ones from the pharmacy
Get given azthromycin or ethtomycin where you can as they are shorter courses (one is one a day for 3 days can’t remember which) so much easier to give and they are stronger too then amoxicillin I think (not a dr don’t quote me on this!)
See if you can referred to an immunologist to see if there is anything underlying
Also ent - has he had his ears checked for glue ear and adenoids checked aren’t too large?
Basically keep pushing until you get some answers - it’s really hard and on the whole the nhs treats mums fairly crapply which doesn’t help.
Remember you are doing an amazing job

Oh and get some counselling for you if you aren’t already - your hospital might have a program you can access since he’s been in intensive care? Ask about - I’m sure your gp would do a referral if not.

Thank you for reply. Sorry to hear about ur DS. It is so hard I had a terrible pregnancy and birth just feel like we can't get to normality. I don't normally let it get me down so much I just get on with it but these last couple of weeks been hard. I have received some unsettling news about my own health so just got lot on my mind atm.

thank u for the tips regarding the nappy rash. it's hard to call whether the nappy rash in relation to the antibiotics he has always had loose stools but when he is on antibiotics the frequency multiplies sometimes up to 3 times an hour😔 his stool has tested positive for ESBL. I tend to use metanium as a barrier cream all the time and only been using Canestan since yesterday so will see how we get on with it.
I didn't think of probiotics I will look into that.
I should have mentioned he had been given azithromycin one 3ml dose of azithromycin once a day until we get seen in April. He doesn't tolerate erythromycin at all. He also has 5ml of coamoxiclav 3 times a day also until April and we get seen again. In regards to Amoxcillin he became resistant to this when he was about 5 months old. Hate him being on antibiotics so much.

He has an ENT consultant who has said his adenoids and tonsils are on larger side but not to the point of causing DS symptoms. they carried out a bronchoscopy on 15th Feb so awaiting results from that.

I just feel really helpless he been suffering so much and in the 18 months of his life we no closer to getting answers. I mean I appreciate all the doctors and nurses do for us they really do go out of their way for us I can't fault them but just feel frustrated I guess. It's so hard because in between his episodes we get a couple of good days during which DS is like a dream he so self content and happy hate seeing home so unwell. don't know what's come over me today.

Regarding the couselling after birth the midwife did say she would refer me due to my traumatic experience but never had any follow up and been so preoccupied with DS. I should really go to GP.

Yes do go to the gp - you can’t support your ds if you are on empty. It’s a right old pain having more appointments but it is worth having someone to talk to
Our bronchosophy didn’t show anything of note as they have to be well to have it - my dd’s symptoms only came on when she was ill - her adenoids would swell then go back down again with antibiotics a bit.
You aren’t getting the support or answers you need - push your general paed - ask what the plan is - if you haven’t an appointment for ages then you can ask your gp or your consultant to bring it forward a bit (some consultants will let you contact them direct to do this others make you go via your gp).
In general I would book a double gp appointment with someone who knows your son and you and ask for help on what to do next with your son and ask for counseling/support for you. You’ve got too much on your plate.

Thank u for all ur replies. I will go to the gp next week I'm very lucky my GP very nice and actually acknowledges concerns. She very hands on with DS condition. I have contacted consultants secretary but the next available appointment isn't until April which is when our appointment is anyway. Honestly very grateful for all ur kindness thank u.

has your DS condition improved?

Dd yes - we had one intensive care admission as a newborn with heart failure and renal issues - heart has improved and renal issues on going - separately we had adenoids and numerous infections - probably as a result of a low immune system which has improved since she got her adenoids out at a year old. We were on antibiotics every two weeks all last winter - in and out of hospital it was a nightmare. We’re off all meds now and it’s wonderful although she has a speech delay. Oh that’s the other thing - spring is round the corner and there’s less colds and bugs so life will definitely get better in the spring/summer. It is truly crap and I’ve never done anything harder - Very few of my friends and family get how hard it’s been - you just can’t know until you’ve been through it - the uncertainty, the tiredness, the relentlessness, the worry, the sadness at missing out on a normal babyhood

sorry I meant DD this phone autocorrect is a nightmare.

sorry to hear of ur troubles glad she is a lot better now. My little one doenst really say anything other than baba which he been. saying since 3 months old.

I totally understand when you say no one can understand it until they experience. sometimes I feel like even dp doesn't understand just how hard it is. DS is the eldest of 4 of his younger cousins. they are all thriving meeting their milestones it's so hard having to constantly answer to people saying so and so younger he already talking walking etc. it's just so hard sometimes. last summer was very hard ended up staying in hospital for a month he had a particularly bad spell just as he turned one in July.

I would really push for the consultant appointment to be pushed forward. There's been no improvement and your LO is suffering.

Do you get clear low ph readings from the NG and aspirate it before giving anything? NGs can be such buggers at getting in to the wrong position and end up adding more risk.

There's a brilliant (very expensive) barrier cream called proshield. You can get it on prescription and is generally used for elderly who have very fragile skin. Antibiotic poo is horrendous for breaking down skin, your poor little boy.

Your gp might be able to get you referred on the 2 week pathway for an urgent appointment which would open up an appointment for you before April - they’ll keep some back for urgent referrals - you’ll be on the 6 week or 3 month pathway at the mo?

Perhaps look at a children’s probiotic to improve his digestive system (consult doc first) may help if on long term antibiotics. Seek as much support as you can and try to live each day as it comes. His quality of life may not be great at the moment but you can ensure he has lots of cuddles and fun in between the difficult bits. for you and your little boy, he sounds like a little trooper.

Has he been tested for cystic fibrosis?

Actually I have to admit i thought Cf too.

Thank you all for replying.

Pat- I will bring it up with gp next week about bringing forward appointment hopefully she can help. In regards to his NG feeds his PH mostly comes back at either 2 or 2.5. we had one episode of it coming back at 7 but thankfully we were in hospital at the time so tube was passed again. Thank you for the prosheild recommendation I did a quick Google search came as cavilon wonder if it same thing? will look in to it further.

Rainbow- yes I will look into it with gp an appointment before April would be great. We were seen by respiratory consultant every 4 to 6 weeks up until January when she said she would see in April as it would give DS a good chance to clear his lungs and he would have been nil by mouth for about 5 months than. she said she would than talk us through some preventative antibiotics and discuss test results etc. He sees his general paed every 3 months and ENT every 3 Months. he is also under craniofacial consultants they seen us about 2 times due to see them at end of month.

Sandys- I will speak to Gp about probiotics I'm actually making a list of everything I want to discuss with her and adding to it as I go along. It just hurts to see him go through so much we had such trouble conceiving suffered 1 miscarriage and stillbirth before we were blessed with him. we do have lots of cuddles and we definitely make the most of the good days only wish we had more of those. He is a little fighter even at his worst he is smiling.

Toddler: His consultant referred him for 5 sweat tests so far they have failed to get a sufficient sample to test so was gonna discuss this again at next follow up and take from there. I was reading up about cf and I was under impression new born screening would have ruled that out? I may be wrong.

Has he been referred to geneticist to see if there is underlying condition? Given he has delays as well as health needs.
Has he has any micro array or other diagnostic tests ?

Dud you get any genetic tests done on your child you lost? Any family history of similar issues? A geneticist can help pull everything together and suggest tests to diagnose underlying condition .
Have they ruled out any neuromuscular issues ?

www.cysticfibrosis.org.uk/what-is-cystic-fibrosis/diagnosis

Newborn screening doesn’t pick up all Cf - I only know as at one stage I wondered if my dd had it too (she doesn’t). Does he taste salty if you kiss/lick him?

I agree get more tests done - I’d push for an immune screen too - it’s just a blood test if he’s not already had one.

*Cest- no referrals to geneticist should I ask for one if so who shall I be asking? No tests were carried out on my stillbirth. Family history why no long term illnesses other than NIL has rheumatoid Arthritis.

*Apples thank u for the cf information it's really helped.

Ask paed to refer to genetics. It might take a while and you need to continue treating symptoms individually.
How is his muscle tone? Did physio say why he crawled late e.g. low muscle tone?
What is his understanding like?

when you have various issues going on so health issues plus delays in motor plus speech and language referral then a geneticist can be useful in seeing if all those together are due to something underlying. Having a diagnosis can help. And there may be specific support for a named condition.

Ds has a microdeletion (affects specific gene) had some health issues as baby with delays etc. Others with his same condition had similar pattern of health issues to your ds as babies. It is possible there is an underlying condition . A geneticist can help see if his set of issues match a known condition . Information is useful.

Having a miscarriage and a still birth may raise red flags for something though of course that could be totally random. If you do see a geneticist they will ask for family tree. But some things are just random. But a gene missing or altered can cause a series of issues.

Ask paed to refer since you would like to know if anything ties everything together.

Is he growing ok?

*Cest he had chest physio when he was ventilated to help clear secretions from his lungs. His paed consultant said he has obvious motor delays as crawling so late not yet walking but she said when his entire body focussing on fighting infection these type of delays can be normal but she would look into it further as chest issues resolve. I will mention the referral to geneticist a diagnosis of some sort would at least shed some light. His growth has picked up since being on NG feeds but even before there was never any major growing concerns.

Oh op, sounds all so stressful and hard for you. I don't have any great advice to offer I'm afraid, but friends with a little one who has also been in and out of hospital for endless issues / tests without any answers as yet, have found SWAN to be very helpful / supportive; for families with children with as yet undiagnosed illnesses, may be worth contacting for some support?
www.undiagnosed.org.uk/

What a brilliant support group adara - wish I had come across them last year!

Have you looked into peg feeding? It's soooo much less stressful than ng. There may be a huge waiting list though x

Yes health can delay motor issues. Hypermobility and undiagnosed coeliac caused late walking in my dd. But she had no speech delays. She couldn't walk or crawl at a year old but she was already talking. Whereas my d's with complex issues and a diagnosis (eventually) also had the speech delays. Also knowing why he has those health issues e.g. something neuromuscular or metabolic or something like c.f.. geneticist can sometimes see the bigger picture.