Hi, im new to this so not entirely sure if this is appropriate here? my son has been repeatedly admitted to hospital with chest infections, pneumonia three times, upper respiratory viral, lower bacterial infections... 16 admissions in 2 year... He is classed as probable asthma due to the fact his brother has eczema... My worry is that his symptoms present exactly the same each visit, but his diagnosis is always different... He has no interval symptoms, he does not get out of breath on exertion. When his episodes happen he starts off vomiting excessively within about 8 hours he is breathless and has ox levels around 88... He has had cf test and several blood tests... I don't feel this points to asthma... Any suggestions? Sorry for ranting!
Worried mum... My 4yr old son has rep... - Lung Conditions C...
Worried mum... My 4yr old son has repeated hospital admissions
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deacey
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He also gets a high heart rate leading upto episodes... 150 plus
IM also worried about the effects of repeated xrays, hes had 6 in the past 2 yr, repeated antibiotics and repeated predisonole ... IM at my wits end with worry and constantly waiting for the next episode.
Hi, has he had a immune test?...it may be his immune system is low.
I know that sounds trivial but all avenues should be explored, for a young lad this must be very distressing for him as well as yourself.
Probable is just not good enough, the hospital have had your lad 16 times in 2 years, although lung science is a vast field of uncertainty they should have a better handle on this by now.
Kick up a fuss don't be shy or be backwards at coming forwards this needs proper diagnosis and appropriate treatment. NO IF`S OR BUTS.
Tom.
like tomc says demand they find out what is exactly wrong with your son this is not on you can also ask for a second opinion from another hospital no wonder you are sick with worry they need to find out what is wrong before anything serious happens to your son good luck
Hi Deacey
You can demand to go to a specialist hospital like the Royal Brompton under the choose and book system. I certainly would get a second opinion. talk to the BLF (red ballon top right). They have specialist nurses that can advise. I hope this turns out well for you and your son, you must be out of your mind with worry.
deacey• in reply to
Thank you for your response 
Hi Deacey, you must be really worried by now if you keep getting different diagnosis. I agree with everyone on here its time to make demands you have a right to a correct diagnosis and appropriate treatment for your son, we are here to help and support you even if it's a relative who is ill not yourself. As an in patient on many occasions there is no excuse for doctors not to have come to a definite diagnosis for your son, but agreed each doctor has a different approach even for the same illness. You need to be assertive and try to find a doctor who takes on board your concerns as well as your sons medical needs. Best wishes
Thank you for your response
Sorry to hear about your little one.Its so worrying with children,it's hard to see them suffer.
You have received some great advice here,so I just wish you & your son,all the best & hopefully find out soon what's going on xx
deacey• in reply to
Thank you for your response
Thankyou for your responses, im overwhelmed that you all agree with my concerns. When we are in hospital we are treat with such a dis concern, the nurses all jovially make comments about the frequency of our visits, they repeatedly turn alarm off on his monitor as they say we know after a few days on oxygen he will be back on his feet. Can i just add one more thing, now that i feel in being listened to, last admission was 3 weeks ago, we arrived via our gps referral and were given an xray in a and e, i have started asking not to the last few times as worried due to radiation and his age, we were kept in for two days on children's ward... All three docs i saw said they hadn't seen his xray yet when i asked for results, the last one said i should insist on no more xrays when my sons admitted in future as it was obviously upper viral. We were discharged after repeated nebs and constant oxygen and prednisone on Tuesday, i struggled on at home, feeling i wad over worrying, only to receive a phone call from my gp Friday to confirm that he had pneumonia left lobe and infection right, when i said i wasn't happy he said as it was done a and e and transferred to ward its a common mistake? I know accidents happen but my worry is he is being over prescribed unnecessary incorrect drugs. Have any of you had similar problems. My sons airway entry is silent? When he has episode so hard to differentiate between viral upper wheeze or bacterial lower creps apparently upon clinical exam, he is completely well between episodes, thriving, happy.
Sounds very like my daughter when she was young but she has a firm diagnosis of severe asthma. I think you need to go to your gp and ask for a referral to a specialist so your son can have a proper diagnosis as to why this is happening it does sound allergic response but until he is tested etc you dont know. My daughter had many blue light trips to a e but once seen by cnsultant we were given open access to the childrens respiratory ward which was a god send. It is very worrying when they are little but with correct care etc he will be fine. My daughter is in her twenty s now and a mum to our granddaughter ......something she was advised not to have due to her bodies weakness through steroids etc but with a fab consultant who liased with obstetrics all went well. Youare right to be concerned re steroids my daughter has early onset osteperosis due to them so SHOUT LOUD for a diagnosis as other meds with much less harm are available. My daughter has an injection now which helps her but winters are very bad due to cold and flu. Keep us updated and very best wishes love Judith xxx
Thank you for your response. Did your daughter also have the excessive vomiting before her episodes? Also, was she exercise induced asthma or viral? They are saying if it is asthma it is viral induced as he can run and is well in between episodes? Im sorry to hear your daughter has early problems due to her steroids. Congratulations on becoming a grandma xxx
No she didnt vomit but each person presnts differently she used to go clammy and quiet then her peak flow would drop to 65 sometimes then wed be blue lighted. She used to drop quickly as shed be fine then five minutes later wham . She has allergic reactive which is also worse on exercise. Funnily enough although shes had it since baby it only really became problematic age 10 its controlled now by that injection but in winter she has to have steroids with her antibiotics when infection strikes. If he has asthma does he have his inhalers ? If i were you i would ask to seea specialist as most hospitals will offer the open access wards saves going to a & e plus its staffed by regular staff. Xx oh granddaughter is 3 next month and is a little poppet xx
As he is only four he cant accurately perform a peak flow. He does have inhalers, blue and brown, I was given the blue a while ago & told he didnt have asthma but that it would help open his airways? Then a few visits later he was given the brown, again I was told he didnt have asthma as he didnt present with interval symptoms, he could actively exercise without any symptoms, he doesn't audibly wheeze... but that it would strengthen his respiratory system.
However, the next admission the doctors insisted that because he had a blue and brown inhaler that he did have asthma? And from there on we have always been treat as given that he has asthma. Several months ago they put him on Singulair or Montelukast. Like I said in my previous post the last doc we saw asked me to insist he didnt have future xrays as it was obviously a upper viral wheeze, only for us to find out he did in fact have pneumonia. I found this a joke as I have fought to not have xrays previously as he seemed to have one a month for a while... Oh I could ramble on and on... worry, worry, worry... sorry! Thanks for your advice xxx
Hmm it sounds bit like me to be honest ! I was diagnosed with asthma after having pneumonia some 20 yrs ago now but i never presented wheezy etc anyways due to my keep getting lower left lung infections over last five yrs ivevnow seen different consultant and told no i dont have asthma! Yet i was on blue inhaler and brown but changed to purplecseritide and atrovent plus the montekulast a couple yrs ago . I definitely think you need another opinion theres lots of other conditions he could have so best get as much help and opinions as you can. I feel for you its so frustrating and hes so little but he has you for a mum so you shout for what you want its your and his right to know what is up and dont take no for an answer xxx
So sorry deacey your struggles getting to the bottom of the problems your little son is experiencing. Was the test for your son for cf negative? I am asking as the paediatric centres for cf have brilliant specialist paediatric respiratory consultants. If you wish I can pm a list or if you let me know a city within easy reach. I am not saying for one minute your son has this - what I am saying is that is you can have more confidence in them than you have with his medics at present. Has your son had a ct scan?
I can appreciate your concern re meds and xrays. I have had bronchiectasis since I was 5 months old and had numerous xrays and the machines were in 1948+ were in no way as sophisticated as they are now. But I was diagnosed correctly and I think you can accept treatment if you know it is essential, and at present you don't have this.
Have a chat with BLF tomorrow - I have talked to them about my little granddaughter in the past and they are so helpful and appreciate and are very knowledgeable about the differences in adult and childrens' lungs.
Hope you get the answers you are so needing and please let us know how you and your son get on.
Love to you both
cx
Hi, he did get a negative result from his cf sweat test. He hasn't had a ct scan, what difference are the results from this apposed to a standard chest xray. We live close to Middlesbrough, North East England.
I am finding it difficult to be more assertive, as ultimately I know the doctors are helping my son. However, I feel the lack of continuity with regard to different doctors each hospital admission, and each visit they heavily rely upon my version of his medical history, rather than his huge hospital file... Im just feeling when is enough... enough? Like you say if I had a definitive diagnosis I could accept our treatment but presently each doctor has a different opinion... I am losing confidence quickly & Im the only person who can speak up for him as hes too little. Thanks again for your advice. xxx
Really pleased his sweat test was negative. CT scan would give much more detailed information for the medics to make diagnosis. However there is a difference between little lungs and adult lungs, so that may be something to discuss with BLF initially.
Well how brilliant Judith has given you a great recommendation - word of mouth is often the best way. Another paediatric centre is
NEWCASTLE UPON TYNE
Royal Victoria Infirmary
Newcastle CF Centre
Queen Victoria Road
Newcastle upon Tyne NE1 4LP
Tel: 0191 233 6161
Dr David Spencer
Dr Christopher O’Brien
but as Judith has had a very positive experience it would probably be a good idea to ask to be referred.
My granddaughter has had snotty nose ruttly chest and cough ever since she came up from London 18 months ago. Docs said it was because she was building up immune system at nursery. My consultant said wait 'till she is 2 then get parents to ask to be referred to his counterpart in paediatrics. Their GP wouldn't and gave her inhalers and mucus thinners to sprinkle on her food. She had a shadow show up on her xray. When I told con he asked why on earth won't he refer. Then with a wink he said get them to say this........ Obviously thought it would scare the whatsname out of him. No way - he just said with the greatest of respect to this consultant etc etc. I am so frustrated and I am just the gran. My sil always takes her and the doc can do no wrong. So I understand just how peed off you are, and you are right you are the only one who can fight his corner.
Sorry went off on a tangent there on your post. Apologies.
Good luck and please let us know how you get on.
love cx
Thank you for your response
Just seen your not far from us we are in Northumberland ....my daughter was seen at RVI Newcastle she was under dr Mike McKean he is fantastic she too had negative sweat test but no ct scan. You would do well asking for a referral to the RVI ive just been myself for second opinion ive had every test under sun ct everything cant fault them . Xxx Judith xx
Thank you for your response
Hi Deacey, I'm so glad you found this site, can't bear to hear about a little child not getting the right diagnosis and treatment.
Tigershay is right about that access directly to the child respiratory ward. You should have this for your child without having to go to A&E and go through all that rigmarole.
This just isn't on with his tender young lungs.
I'm presuming the brown inhaler is Becotide? I believe it has an element of steroid in it, is he taking it regularly twice daily?
BTW, it's not easy for an adult to take inhalers correctly, they're all a bit different.
Do please call the helpline tomorrow, they will help you a lot. 03000 030 555, office hours - they may start at 10 am and I think it's the cost of a local call.
My son had asthma from age 3. I would be insisting on a CT scan for a proper diagnosis and skin prick allergy testing (doesn't hurt).
If only I knew then what I know now. Someone medical did once tell me that he might grow out of it at age 7 or 14. He didn't at 7 but did at almost 14 when he developed bad hay-fever for a couple of years which made me really suspect an allergy.
Montelukast is good for any allergic element of his condition. It does sound like allergic asthma but of course I'm no doctor and there are other chest conditions.
Poor you, I really understand how deeply worried you are. I'm wishing all the very best for your son. Please let us know how you get on. Sincerely, Peeg
I know how worried you must be, all three of my daughters were diagnosed with asthma when they were young, the middle one is now 39, but she was wheezy and had eczema from being a few months old. The other two were diagnosed after chest infections, the youngest (who was born in Middlesborough) had open access to the children's ward where we live now so there was no worry about going to A and E first. I was diagnosed just as they left home, so I have seen the situation from both sides. I suggest also ringing the helpline for advice. Hopefully also you can be referred to a consultant who specialises in children's respiratory complaints. Best of luck
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