Feeling like there is no end?! :(

Replies to This Discussion

Permalink Reply by Jenny Rawling on February 6, 2012 at 13:35

Hi Tasha + welcome to LR. Don't feel guilty or blame yourself, you can only make what you think is the best decision at the time based on the information you are given.

I'd say cow's milk protein intolerance is a strong possibility and needs to be ruled out. Most refluxers are not truly allergic to milk (don't have IgE antibodies to milk) so will be negative on allergy tests. You would need to exclude it from his diet by a trial for at least a month on a hypoallergenic hydrolysed formula (Pepti/Nutramigen 1) or an amino acid formula (neocate/ Nutramigen AA) and a dairy free diet as far as solids are concerned.

He sounds like he's on a lowish dose of ranitidine. How much pain is he in? The other med to try to control acid is omeprazole, but it's not likely to affect how much he is sick, only whether it is causing any damage to his oesophagus.

Can't write more now, on lunch, but will check back later. I'm sure some of the others will help.

Jen x

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Permalink Reply by Beth on February 6, 2012 at 14:34

Hi Tasha. My LO (20 wks) has silent reflux and is cows milk protein intolerant. He also had a small patch of 
what the paed said could be eczema on his face. 

Kept using cream recommended by pharmacy and sort of helped but seemed to keep coming back. It was a very light patch but as a mum you notice everything! Anyway, once we got him on nutramigen AA which is an amino acid formula, it cleared up completely and hasn't returned since. He's also on Omeprazole as reflux got so bad and we were in A&E 3 times
(I decided it was the only way to get health professionals to listen to a 1st time mum).

Please don't feel guilty about the breastfeeding. I understand why. I breastfed for 3 wks and for reasons couldn't continue which I felt guilty about. You don't need to though - you love your LO and only want what's best X 

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Permalink Reply by Tasha Jones on February 8, 2012 at 9:00

Hi Beth, think my best option is to insist on the milk as its really sounding a strong possibility. His eczema is on his stomach, back, legs and worse on his chest neck and face. It never goes with the cream it just controls it sometimes! Thankyou, the breastfeeding really gets to me but on good days i know i couldnt of done much else!
Tasha x

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Permalink Reply by Tasha Jones on February 8, 2012 at 22:17

Hi Jenny thanks for replying, my gut instinct is the milk intolerance doctors are just quick to dismiss it as 'reflux that alot of babies suffer with' I think ill make an appointment again this week and insist on a trial for the specialist milk. His pain is thankfully not an issue anymore, he used to scream in pain and refuse to be on his back but grew out of that before the medication was given, its how much he is sick that keeps getting worse although he hasnt lost weight which i know is brilliant but it just makes the doctors say its fine just let him grow out of it, they dont deal with constant sick all day doing 2 wash loads a day! Doctor also said he was on the highest dosage allowed for his weight. Omeprazole is the next step they will offer although if it doesnt affect how sick he is i cant see much point!
Tasha x

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Permalink Reply by Beverley on February 6, 2012 at 19:51

HI Tasha,

How are your little one's bowels? Does he seem to have pain lower down and struggle to pass stools? Are they loose and runny or hard and do they ever look stringy, slimy or mucousy?

I ask all that because bowels can be another key to cow's milk protein intolerance. And, it seems to me a likely possibility that he does have cmpi. If this is the case then a prescription of neocate or nutramigen aa milk may be exactly what you need to make things a whole lot better.

Excema is common in cmpi babies. I had the opposite experience in a way because my LO was cmpi (in fact he's intolerant to most foods) but people kept saying it wouldn't be that because he didn't have excema! Steroids are generally used to treat allergy so if steroid cream helps, wouldn't that suggest that it might be allergy?

Ranitidine seems to only work for some people for a brief period and then they move on to omeperazole. Maybe this might be something else to think about.

Big hugs to you. Don't feel bad about the breastfeeding thing. As mums we set out with all kinds of plans and expectations, many of which don't work out, particularly with a poorly baby. In my case breast milk was awful for my allergic baby so it may be that breast milk may not have been the right thing for your LO anyway.

X

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Permalink Reply by Tasha Jones on February 8, 2012 at 9:14

Hi Beverly,
his stools since a few weeks old have been dark green and he used to be in a lot of pain with them & wind & would only go every 4 days which is why I put him on the comfort milk which did help a bit as now its every 2 days. They are not slimy runny moucusy etc they are still dark green and quite thick, although now he is being weaned he goes everyday smaller and harder. Well the doctor at the hospital quickly dismissed a milk intolerance saying that because the steroid cream had made it a bit better it couldnt be an allergy! Think I will make an appointment and discuss this further now I dont want to be fobbed off if it really is an allergy!
Thanks, its hard when you have such a set plan on what you will do how you will parent then all these things happen & it throws everything out of the window!
Tasha x

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Permalink Reply by Beverley on February 8, 2012 at 11:44

Hmm.

Not sure about the poo thing then but still worth investigating just to be sure it's not a milk allergy.

x

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Permalink Reply by Tasha Jones on February 8, 2012 at 22:19

Yeah I guess the only way of ruling it out is by having a trial of the milk, every doctor I have seen has just dismissed it though so fed up of trying to get them to understand what its like! Will keep persevering though, hopefully get somewhere x

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Permalink Reply by amanda on February 6, 2012 at 20:17

 

Hello, Tasha,

               I am a grandama new to this site also only  a few days, as I am still learning too trying to support my daughter and son-in-law as well as desperately searching for something to help my8 week old grandson Noah I am not best placed to give you advice at the present moment, but what I would say is read the infromation posted to me by Sara only a few days ago it is most informative. Don't accept what the dr's say - be clear in your own mind what you think the possibilities may be and push the dr's to explore further. If you are not happy with your child's dr then request a second/third opinion, don't always accept what they say as in my grandson's short life I have discovered that some dr's know much more about reflux than others.

 In Noah's short life (now 8weeks old) he has been to A&E twice discharged home with colic, referred urgently by his GP to a peaditrician who diagnosed colic prescribed paracetamol and gaviscon and discharged. We requested (demanded) a second opinion was seen and diagnosed with reflux and prescribed ranitidine 1mg twice daily(he took it for 6 days only which did not appear to  help him at all, although I now know perhaps we should have persevered a little longer) but in desperation and a refusal by his second opinion dr to give us any advice or reassurance after a 14 hr screaming session yesterday we decided to take him to Birmingham children's hospital. Despite 50-60 people waiting in the dept to be seen the consultant peadiatrician spent approx 45 minutes with usand we finally felt someone was hearing what we we were trying to say.Noah's medication was changed to Omeperazole which I think stops all the production of acid in the stomach allowing healing to take place.

I understand that your son has different symptoms to Noah but I guess what I am trying to say is keep fighting until you get what you feel you need for your son. I know how exhausting this is believe me, Im sure more knowledgable & experienced people here will give you some advice. Take care Amanda.

Also read the food intolerance article on this site - it may helpyou.

 

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Permalink Reply by Tasha Jones on February 8, 2012 at 22:25

Hi Amanda, Thanks i read that information, very interesting makes this all a bit clearer! Yes I've learnt I have to keep pushing and pushing its the only way doctors will take me seriously! Fed up of trying to make them understand but I shall keep persevering for answers, and request to have him changed to omeperazole sooner than in 8 weeks time which is what was originally the plan. 8 weeks may be nothing to them but for a baby who throws up pretty much constantly each day it feels a life time :(
Hope your grandson gets better quickly, he is lucky to have such a caring grandmother!
Tasha x

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Permalink Reply by Vicki Gilbert on February 8, 2012 at 14:41

Hi Tasha
Sorry not had chance to read all replies so apologies if any repeats! We went down similar route with the meds and TBH it wasn't until he was on omeprazole he improved at all. He is now on combined omep and ranitidine which is generally v effective for him. So sorry to hear you feel bad. Easy for us to say don't but just remember from the minute you become pregnant then become parent there is ALWAYS something to feel guilty about (I'm an expert at it believe me ;-) Re weaning I waited until about 24 weeks and have BLWed I found food made no difference except actually increasing sickness for about a fortnight.

My eldest son developed v bad eczema after I stopped BF (age 1) and has been DF for about 3 years and it makes BIG difference I know when someone has made a dietary mistake cos of his skin. He still has the eczema but nowhere near as bad. We have been using a brill non steroidal cream from hospital for about 6 months - Protopic and it's fab (believe me we've had EVERYTHING!) he wears the clinfast vests and leggings at night with epaderm underneath which help a lot (not least to stop the scratching!) DS2 it seems is CMPI even through my breastmilk (no eczema though - yet!)

Ah good luck and things do get better little by little but I've also found you have backward steps too Vicki x

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Permalink Reply by Tasha Jones on February 8, 2012 at 22:33

Hi Vicky thanks for replying, seems like the general thought is to get him on to omeprazole, they say they will put him on it in 8 weeks time but I am going to contact the doctor earlier as 8 weeks is a long time when my son is sick pretty much all day, it only stops when he sleeps. Did you find omeprazole controlled the sick? As his pain is luckily pretty much gone now but the sick gets worse. Started weaning him 2 weeks ago now, the usual blended foods - butternut squash, bananas, avacadoes etc. he seems to keep it down better than milk but sooner or later it will all come up regardless. Oh thats interesting, I havent introduced dairy in terms of weaning as my gut feeling is dairy interolance, which is is why I need to insist on a trial run of the specialist milk, even if I am wrong!

I shall ask about the cream, 5 times I have been back to say his creams are not doing much (hydramol & hydrocortisone) but all they say is keep putting it on, keep him moisturized etc. even when I mention other creams they could give me! Thankyou, I shall get some of the vests and leggings and look up the cream, its horrible to see him scratch himself and draw blood, I feel helpless!
Tasha x

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