Today's appointment with the consultant

[Thomass_mum]

Well we had Thomas's latest appointment today and it has taken me by surprise. His consultant has said he is very concerned about Thomas and doesn't know what's going on with him. He is worried as his asthma is difficult to control, still drinking loads, constant colds and infections and his poor weight gain and height growth. Plan now is blood test for just about everything lol , urine sample and possibly MRI of his head. I was ok(ish) but now feel really down but at least they looking into things thoroughly I guess. He is being seen monthly for forseeable future.

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HI Jenny,

I completely understand what you are going through, having been through similar with 2 of my children.

fingers crossed all is ok.

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I can sympathize as I have had this happening to me several times. It is scary but at least they are looking into things thoroughly.

Take care and let us know how you get on.

Rose xx

[Thomass_mum]

And we are now back in hospital after having to call ambulance as his breathing took a turn for the worse this afternoon. Can't believe it after the consultant only listened to his chest this morning x

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Oh bless you so sorry you've ended up back at the hospital. It sounds like this mornings appointment went well in that they are keen to get to the bottom of things and investigate further. As a parent that must feel very difficult. I had a similar conversation with my consultant today and am waiting for a raft of tests, but I cant imagine how it would feel to have a child in that situation.

I hope you manage to both get home soon x

[Thomass_mum]

I am pleased they are looking into things with him it was just scary hearing the doctor admit he is concerned about him all the times we seen him he's never said this. His blood tests should be done at 9am so at least its being done quickly. One registrar was on about doing a bronchoscopy tomorrow but I'd rather they didn't do that while his asthma playing up. It is very stressful when its for your child.

How are you now? X x

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Jenny, I'm sorry to hear Thomas is poorly again but glad to hear that the cons appointment was fruitful anc they are looking at all sorts of thimg to try to find sn answer.

I hope they can find something to help soon.

X

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Hi Jenny, Im bumbling along... back on third lot of IV antibiotics in three months. Waiting for a raft of tests including bronchoscopy - and probably a referral to Leicester to see if I have PCD, makes for an interesting read:

pcdsupport.org.uk/index.php...

Im nil by mouth in terms of food now, to try and reduce incidences of aspiration pneumonia. This is day one, Im wondering how long I will last before the cravings start!

How is Thomas this morning?

Lynda x

[Thomass_mum]

Thomas is back on antibiotics again it seems there is something on the right side again but the chest X-ray not showing anything significant. I don't think they are now going to do the bronchoscopy the reason hasn't been explained.

I had a look at that website although couldn't view the video it makes a very interesting read and has left me with some questions for his doctor. I am worried about things about hereditary illnesses my sister has several auto immune problems that have recently been discovered. Despite me not mentioning them to Thomas's consultant one of the blood tests he has requested is for cortisol levels which is one of the things she has problems with. It isn't very reassuring when the consultant tells you how concerned he is and doesn't have any idea what's going on. I want to hear he knows everything and will get to the bottom of it haha. I am still wondering should he be under a specialist children's hospital such as GOSH or the Evalina I just want the best care for him.

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I thought you might find it interesting, its a shame you cant view the videos. You must be so terribly worried, but to be honest, I would rather a consultant be honest and say he doesnt know whats going on, so long as they are willing to do all the investigations to find out, which it sounds like they are prepared to do.

Sadly we dont all fit in normal boxes - I certainly don't, and my consultants at Papworth, who are used to seeing all the 'out of the box' patients have apologised to me several times for struggling to work out which of my issues is causing which problem. Its reality unfortunately, but the important bit is having a consultant you trust to be open and honest with you, and willing to have a dialogue about your thoughts and questions - as well as willing to investigate.

I've been going to Papworth two years, and whilst I have no doubt that they have kept me alive, they are still struggling to work things out. That doesnt make them bad consultants though

Is the consultant you see a respiratory one, or a paediatrician?

Lynda x

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Just so you are aware, for PCD diagnosis, you need to go to, Leicester Royal Infirmary, Royal Brompton in London, or Southampton General, they are the only three centres which can test. I was told that if I get referred to Leicester, it will be the paediatric clinic LOL!

[Thomass_mum]

I have just had a very long time of being told there is nothing or they don't know. It is a paediatric respiratory consultant he sees. Thomas definitely doesn't fit in the normal boxes it is frustrating I would much rather he did. I actually really like his consultant and have a lot of respect for him its just I want my son to see the best person possible. But then I guess we have to work out what's going on to figure who that best person is. One of the latest theories is the pituitary gland may be a problem. Hopefully the blood tests will show something they seem to be testing for everything lol.

If he does need to be referred the Royal Brompton is nearest to us

X

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I really hope you find some answers and make some progress soon. Hugs to you and Thomas

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Hi Jenny,

I totally understand you wanting the best care for Thomas.

My son has severe reflux due to cows milk protein allergy and used to vomit repeatedly on a daily basis from the moment he woke up.

The pead cons we saw locally was getting nowhere and we couldn't bear to see our son in pain qnd unable to eat. He was missing school too and had no energy.

Eventually we were very lucky and my son's grandparents paid for him to be seen at GOSH privately (the nhs wait was months) and I can't tell you the difference its made.

The consultant spent an hour going through every stage of his life from pregnancy .

He changed his meds completely as he was coming at it from an allergy angle and within days we saw a vast improvement.

He's not perfect and we now see his cons on the nhs (hes having a gastroscopy and colonoscopy next month at GOSH).

I suppos my ramble is just really to say that in our experience going to a specialist hospital where they have the top people in the world working has made a difference to us and was well worth it.

X

[Thomass_mum]

Nursefurby - I have just read something you have put on another post about rarely having an audiable wheeze. I called an ambulance on Tuesday for Thomas as was extremely concerned his breathing, it wasnt being improved by massive doses of ventolin, he was floopy and could barely keep him awake. When the ambulance turned up their finger pulse oximeter didnt work so they listened to his chest and decided it was ok because there was no wheeze? He had intercostal recessions and retractions around his neck so knew it wasnt right they decided to take him to hospital to be checked over putting it down to a virus. In the ambulance their other monitor didnt work properly so they couldnt check his sats. I was worried and said he really doesnt seem right and always needs oxygen but they didnt seem concerned, until we were almost at the hospital and decided to put him on oxygen and put the blue lights on (although that seemed only because we were stuck in traffic). At the hospital he had perked up and was sitting playing in the waiting room, we waited around 20mins for triage. Once they checked him over his oxygen levels were 86% and rushed us into a cubicle to get him started on nebs. I always tell people he is a happy wheezer who will run around happily even when he is struggling. I only usually become massively concerned once he stops running round and lies still refusing drinks (he is a massive drinker - another symptom they are concerned about). Most of the times hes been checked in A&E there is no wheeze he is past that his airways close up very quickly.

Anjelica - we are actually considering paying for a private consultation if we dont get some answers soon, if you consider all the symptoms they are now looking at combined its been going on for well over a year and i just need some answers. I just noticed you put they wanted to know about his pregnancy - well while i was pregnant with Thomas my asthma has been the worst it was ever. I was in hospital 3 times and I have never even had to go before or since that! I was also crashed into when I was 30 weeks pregnant and suffered from severe neck and shoulder pain for the rest of the pregnancy, now feel bad for taking painkillers

Sorry for a bit of a rant, feeling really fed up today.

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Crikey Jenny, no wonder you need to rant!! An ambulance without a SPO2 monitor which works properly?? 86% is terrible, surely they should have checked them straight away as part of triage if they couldn't do it in the ambulance?? I would be livid. I dont know how you cope with all this stress - I know you dont have a choice, but it must be just so wearing emotionally and physically.

Is it worth explaining to your consultant that you would like a second opinion from somewhere like GOSH before paying privately? He may refer you, (should, actually as you are entitled to a second opinion) and then you wouldnt have to find the money to go private.

How is he this morning?

x

[Thomass_mum]

We see his consultant again in just under 3 weeks so will bring it up then it would be good if we didn't have to pay for it. But I'm at the stage where I just need some answers so if need be I would pay cos it would be worth it for some answers.

He seems ok today he's just about making it the 4 hours between nebulisers. The challenge will be Saturday, he has his last day of pred this morning so will usually be ok the day after and if he's going to get worse it will be the day after that. It does worry me his blood tests are for similar things to my sisters who they think now has addisons so I am terrified but have to wait and see. It's horrible he's wanting to be carried and he's not usually like this its heartbreaking to know he knows he isn't right.

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Jenny, funny you had bad asthma during your pregnancy, I did nothing but vomit for eight and a half months and had lots of antisickness meds and my sons main issue is vomiting.....weird eh?

It is.such a worry, pqrt of you wants them to find out whats wrong so you can then get the right treatment but part of you is scard at what it willmean going forward. So hard with kids :-S

X

[Thomass_mum]

That is strange isnt it! My friend also had bad asthma during her pregnancy and her son had breathing problems. Makes you wonder.....

He seems a bit worse this evening, have just given him his 8 puffs a little bit early as I could hear his wheezing from the other room. Bless him, he sounds like an 80 year old who has just run up the stairs hehe, not normal at less than 3 years old.

Does anyone take Nedocromil? x

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Hi jenny p so sorry to hear all about what you and little man are going through bless his heart just been reading the above posts and just wanted to say josh my 4 yr old doesnt have a wheeze on most of the occassions he has been really bad and needed neb and steroids but i only have to lift up his top to see his stomach muscles pulling in so much there is an arch way formed at the moment josh is very up and down some good days others really not good at all he has another asthma review this wed so will see what they say then , hope all is a bit better for Thomas at the moment xx

[Thomass_mum]

Thomas is exactly like that he had obvious signs of resp distress do couldn't understand why I was being told he was fine. Thomas is still on the reducing salbutamol dose but not convinced he's past the worst as he's still quite wheezy. I think I may have to take him back to GP Monday for review.

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I believe you know your child better than anyone else so you know if they are right or not , one gp tried to tell me josh was fine and he didnt need anything but later that night he was rushed into hospital because he had phenmonia of the lung and was needing oxygen for 4 days non stop so always listen to yourself gp dont always get it right , really not looking forward to seeing the nurse for asthma review as not well myself at the mo having lots of tests and continuous blood tests every week so just havent got the energy for her stupidty lol x

[Thomass_mum]

I know exactly where you are coming from. I have already started writing a list of things for the next consultants appointment that I am not happy about. Just remain strong, if you are not happy, demand he be re-referred. I don't know what they are going to do with Thomas he is on so much medication can't understand why they can't get his asthma under control.

I had my MRI on my foot yesterday I should get the results at my next appointment which is on the same day as Thomas's appointment. Don't understand why they bothering with it though because I did it in November and X-ray showed it looked like fracture has healed I suppose they jus have to check its healed properly.