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it is looking like my ds has an immune system problem :((17 Posts)
not sure why i'm posting this but just hoping anyone has any information really...my ds has been suffering from recurrent skin infections since he was 19months old and they thought he may be a carrier of something on his skin, they have swabbed him nd he doesn't carry anything, not even the common staph that most people carry, i'm waiting on a specialist ringing our peadiatrician about some specific tests and stuff, i'm really worried about him, its one thing after another. my friends answer to the news was "well, if hes got something, get the dla form in" thats the last thing on my mind..
the dr seemed concerned yesterday, i never like that look iykwim, hes doing alot better development wise its like 1 step foward 2 back all the time xx
Sorry, salad, I don't have any advice, but I'm happy to offer virtual and (((hugs.))) Let us know how things are going.
awww thankyou, need them really bad right now as i dont get any in RL. still waiting on the hospital, i hopee it's nothing too serious but th its sounding like it is i hate this suspense xx
im not sure if it cold be linked to food, my ds gets massive abscesses and cellulitis that need iv antibiotics and hes had a uti which are all rare in children, he also gets a strange petechia rash on his neck from time to time. all his lymph nodes have swollen up today so i'm expecting him coming down with something, i know one of the tests is to rule out something called chronic granulomatous xx
(((hugs))) salad. My friend's son got cellulitis a couple of years ago and was hospitalised for quite a few weeks. I don't think anything taken individually seems terrible, my DS3 has had a UTI, it's the combination that is probably a bit concerning. May be coincidental? At least they are taking it seriously. When do you get tests or results?
if youre having to cream him and comfort him a lot because of the infections then id apply for DLA. When my son was 19months old I claimed DLA, he didnt have a firm diagnosis (has now) but had plenty of doctor/hospital letters to back up how much more care he required. x Good luck with the tests, its awful seeing your child suffer at hospital during tests, but try and think of the end result in that you will hopefully find out what is causing your sons skins problems. xx
Don't know if this is relevant but DD has Emanual syndrome. She has had continual diarrhoea for nearly a year all cultures have come back negative, due to this her butocks are excoriated and seem resistant to all treatments. She also has a continualgreen runny nose, a red gastrostomy site and periodically has a red raised rash over her body. As a point of interest she also has a low grade pyrexia (37.4 - 37.8) At present she is being treated for bacterial bowel overgrowth with cycling antibiotics...useless. Would be gratefull for anybody's input.
So I have no idea what I am talking about, but could a certain treatment be breaking the "cycle". I moved to a drier climate and all my skin problems
(mild in the first place) disappeared. Where I live now there are lot of hot spring that contain low doses of radium, arsenic, lithium etc. and the skin feels amazing when you are done bathing. I know this is not a long term solution, but if it is something like an overgrowth (I know only candida really), then you might break the cycle and get rid of the "infection" and maybe his immune system can take it from there?
Salad, frequent/prolonged antibiotics can seriously lower immune system and lead to fungal and bacterial infections (speaking here from experience with my ds) and some abs seriously suppress immunity and white cells. Have you considered/tried probiotics at all? It might be a small step but could start you on the road to recovery whilst you are waiting for more tests etc.
Another way to help would be v nutritious diet with the proverbial chicken soup type of meals and maybe egg for breakfast rather than cereals and go easy on wheat and dairy too for a while (not for ever). Both wheat and dairy (esp cows, so try goats instead?) can and often do put an additional pressure on the immune system which tries to fight not only external microbes but also the proteins in food - in people who are susceptible.
OTOH, easy to digest proteins help to boost the immune system (eggs contain zinc and also aminoacids that are v important to recovery). And it's a process, so has to take time.
You could read up on GAPS diet, it contains a lot of wisdom on good nutrition.
Thanks for the above advice, it all makes sense to me. However DD is completely fed with a low osmolarity milk. she is unable to eat due to a cleft palate not able to repaired adequately. Gastroenterologist feels her gasrostomy is growing candida (I am convinced her bum is due to candida) BUT WHY NOT GIVE HER ANTIFUNGALS!! Off to change 5th shitty pad
oo thanks for all the input, im still waiting on the hospital ringing me he never gets diarrhoea, its the opposite for ethan he is always bunged up and i don't understand it he eats well, loves his fruit and veg, tried the probiotics yoghurts before because he kept getting stomach ache but they didn't make any difference, he only has the antibiotics if he really really needs them, but he never responds the the nrmal antibiotics like flucloxacillin always needs something different or stronger. they think he has problems with dairy because he gets so many stomach aches so waiting to see the dietician over that, its endless. hes got a caf meeting next week so hoping i'll get some help there xx
2old, how old is your dd?
Anything with zinc /zinc supplement helps to get rid of fungal infections better, nothing worked on my ds until I found he was Zn deficient and gave him Zn supplement. Chemical antifungals tend not to work long term, as soon as you stop them, it comes back. My vote is for Zn, if she is v young, try asking chemist what's best I'd say, liquid and a drop at the time maybe?
Normally no zinc in milk, unless maybe fortified AND if it can be absorbed.
DS is 5. We adopted her nearly 2 years ago so have a very scant medical history. She appears to have multiple problems since birth but medical intervention seems inadequate. However have just discovered (in the last 24 hours) 2 close relatives have crohn's disease and another 2 have rheumoid arthritis. But to get the gastro chap to listen....grrrr. Will have a word with the lovely dietician regarding zinc supplements sounds hopeful. Despite my longevity and my paediactric experience my confidence is ebbing away!!
many thanks 2old
I think you are right that it could be some genetic susceptibility, there are signs in my family too, some are affected more than others, 2 are celiac, others have various gut symptoms too. From my reads, RA & Crohns can be complications of wheat/gluten/celiac, plenty of reading around, eg here. I questioned once our consultant on the link b/w gluten and immunity and found out that gluten can have adverse effect on immunity.
PS. I have a friend who is a nurse and she tells me that it's hard to see her nearest and dearest in a professional context, so you are not the only one.
hello everyone again
had to mess about chasing up the hospital but finally ds registrar rung, they are doing his testing on tuesday and giving him some meds yet another antibiotic but tbh im tempted not to go along with that just because he has been free of skin infections for around 6weeks which is a long time for ds, god knows why they didn't do the testing when i was there last time.
ds hasn't had anymore skin infections though so i think the sunny weather is doing him some good, all the talk about gluten, crohns, rheumatoid atheritis they are all stuff that run in my family, we are waiting to see a dietician about intollerances to red fruits/veg and dairy so will definitely raise the subject then xx
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