Newbie here, not sure I am in the right place...

[connorsmum]

Hi All,

I have bee lurking on this board for about a week. I have wanted to post before, but really am not sure if this is the right board for me. I guess the problem is that I don't really feel like I fit in anywhere else.

Anyway, my name is Kerry, I am 26 and have 2 sons, Connor who will soon be 4 and Jamie who is 7 1/2 months old. We have had alot of problems with Jamie almost from the outset. He has been under the paediatricians care for 7 months of his life. He had prolonged Jaundice, then a UTI at 4 weeks old. He had to undergo tests to check for urinary reflux and kindey damage (he has to go back in april). The his weight gain slowed down at about 10 weeks and completely stopped at 17 weeks. He weighs 14lb even and has done for coming up to 16 weeks now. At Jamie's last paed appointment (13th Dec 04) he was diagnosed as failure to thrive. He had bloods done, urine,stool and sputum samples and a chest x-ray, but so far, nothing has been found. We have tried the sweat test 3 times but have had to give up each time as Jamie has severe eczema. I still exclusively breastfeed as Jamie has issues with food and still doesn't eat solids. He has so many consultants and appointments that I am starting to lose track. He has a dietican, as well as a SALT, a dermatologist as well as his paed. I feel like a
complete failure as a mother. My dh & I are going crazy with worry, our baby is nothing more than a bag of bones, it makes us cry to see him naked. We have to take him back to see his paed on the 14th Feb, and I am dreading what he is going to say, although I am feeling like I should refuse to leave the hospital until they can tell me what is wrong with my precious boy.

I really don't want to cause anyone any offence by posting here, especially as Jamie is not techincally a SN baby, but like I said, I really don't feel like I fit anywhere else.

Kerry & Jamie

hi kerry and welcome. It sounds like the right place to post to me- ther are other's here whose children have health issues, and we all have to deal with paeds etc- so that's horribly familiar.

ds2 didn't put weight on until an infection was spotted at 6 weeks- and I know how dreadful I found that time- so I can't imagine how difficult it must be for you.

One thing though- you are NOT a failure.

Are any of the pros being helpful? If one is really good then talk to them about the other issues as well- it can help. Is your HV being any help?

I do hope you get some answers on 14th- not knowing what is wrong is always worse than dealing with whatever it is.

of course you "fit in here"

There are loads of parents on this section with children who have many different health problems....min are autistic so ten to be 'behavioural' problems... so cannot offer practical advice to you- but certainly will think of you and jamie every day.

there are people on here with so much knowledge- you will have us with you whenever you need it- i tend to be on the p.c often around midnigt- so if you feel alone- even late at night someone can listen>

meant to say that my friends son was classed as 'failure to thrive' 6 months ago- turned out he has coeliac disease.....and now as long as he has no gluten- he is fantastic!!!

his month went throu hell getting peole to notice- her HV even thought she was starving him....he got to the point wher he made no noise- not even cried- as he simply was so weak- now at 2 he is walking-has glossy hair (even that stopped growing) ....

so basically- totally understand your need to find out what is wrong...... my friend was certain he had Cystic Fybrosis.....and though to me Coeliac disease seems major too...his mum sees it as a huge relief- as for him aslong as he eats the 'right' food- he will lead a totally 'normal' life.

hope this helps- she would be a great person to support you by email- so let me know...even though your babe is not diagnosed with coleac disease etc....she had a year of what i imagine you are going through-spending nights at hospital just watching him- so she would understand .

Hi Kerry. I gather Jamie is having the sweat tests to rule out cystic fibrosis (I have a 12 y/old with it.) Can I ask (rather intrusively, sorry!)what his stools are like? Does he poo more often than your oldest son did? What consistency is it etc? A baby failing to thrive because of cf usually has a real 'poo issue' going on, although is is not always easy to recognise due the fact that younger babies do such soft poos anyway... and can poo really often even if there are no problems!

Seeing as the sweat tests are having to be abandoned, has anyone suggested cf screening? This will tell you once and for all if it's cf.. (genes and all) and it doesn't even have to be a blood test these days.. it can be from a mouth swab which is simple and painless! A little wait for results but when they come, they are conclusive.

How is Jamie, deveopment wise? Is he alert and taking an interest? Can he sit up, use his hands in the usual way, etc?

I know how you feel re: the upset of seeing how skinny he is when naked.. I have been through this too! Just rememeber (although I know it's hard).. you WILL get through this.. this phase will resolve itself somehow.. and you will get SOME answers re: Jamie at some point. My youngest DS (now 4) has never got a proper diagnosis (to date) - although is classed as having a type of cerebral palsy (nothing in common with Jamie's problems.. don't worry!).. but initially I thought we would never cope until we had proper answers.. but we did cope.. and DS, in his own way, thrived and made progress, even though he has many problems.. we wouldn't be without him for the world... he is a real joy.

Keep us posted. ((hugs)) lots of love

SJx

Welcome Kerry

I don't really have anything to add but just to let you know that we will all support you and Jamie.

And welcome to MN and SN

Hi kerry and welcome - yes this is the right place - you will find lots of advice and comfort here. Good luck with your appointment.

hi there Kerry
I just checked my dd's record book, at 50 wks old she weighed 14lbs 1 oz
She has a genetic condition (noonan syndrome)which causes her to be slow weight gain, she was also fully breastfed and delayed on solids
She had reflux too which she finally grew out of at 11 mths
There is always a reason for these things and once you have the diagnosis you have a way forward, it is very very hard to see your child in this position, we were fortnate to get an early diagnosis.
I take it his heart has been thoroughly checked out as even minor things can stop weight gain. although with the eczema it sounds more like an allergic thing perhaps?
I am so sorry that you feel this way, you're doing your best, do not beat yourself up
And you are welcome here, we will all help as best we can, anytime you need
jane xx

Hi Kerry - welcome to mumsnet. I've just posted on your thread on another board so I won't go over it again other than to say that you'll get loads of support here too.

Thank-you all so much for your warm welcome. It was nice just to be able to get all my pent up feeling off my chest!

SleepyJess: I am starting to think that I could be a poo expert!! Jamie's stools are different to Connor's, but not sure how much of that has to do with the fact that Connor was weaned at 3.5 months. Jamie normally dirties a couple of nappies a day, althoug he has the odd day where he may only go once (or like yesterday and today, he hasn't gone at all, am expecting a real blow-out when the time comes ) I will say this though, his stools have changed quite alot in the last few months. He used to have typical BF baby poos, but now they are almost always liquid and OMG, for a baby who eats very little solids, he STINKS!! On the odd occasion his poo has any bits in, they are white.

Not sure what this all means. Dh & I have been doing our own research and think that Jamie may have some kind of malabsorption syndrome, where he isn't able to digest some of the nutrients/vitamins from his food that will help him to grow and put on weight. Malabsorption always has an underlying cause, whether it be CF, Chron's disease, coeliac disease, or some other gastro problem.

Developmentally, he seems to be "normal" (is there such a thing?) He is sitting unaided, rolls everywhere, stands with support, babbles (but won't say mamamamama) and has 6 teeth already.

MrsFROSTgetful: Thanks for the info, I also wondered about coeliac disease. If you don't mind, it may be useful to get in touch with your friend.

Kerry & Jamie

welcome to mn

Your liitle boy sounds exactly like mine at that age

He had jaundice until he was 6 weeks old (iirc, he is 4 now), and also had a urine infection, so had all the investigations as well as antibiotics for 6m. He was also dignosed as ftt, he still sees a dietician, as he developed allergies to wheat dairy and soya, so was put onto a high calorie formula even tho i was bfing him, thenrejected me completely and developed an allergy to the formula they prescribed, so was on a non dairy non soya one until he was 2. He has a tiny appetite even now, is a skinny thing but he is healthy and active and happy. I sympathise with the feeling of utter helplessness and frustration, we felt exactly the same. In fact we were so frustrated with the hospital we took him home on the same day he was admitted for obs, as they had left him to scream for hours unattended, when we had gone home for a break and to see the other kids.

Only time and moving away from the area we lived in, to a better , more understanding hospital helped our frustration. Ds is still small for his age, and puts on weight, v slowly, but like i said he is basically healthy, and the paed we have now is wonderful in not making us feel like we failed him.

i am sorry I have no answers for you, but thought you would like to know that someone else has been there too

Just wanted to say hi, Kerry, and welcome .

My ds2's problems seem to be much more on the developmental side, but I can imagine how worried you must be about your little chap - I hope that you get some answers on the 14th.

We are all a mixed bag on this board and very welcoming. I've only been posting since last Autumn, but feel quite at home now . I lurked for a while too - as ds2 hasnt really been diagnosed with anything specific I didnt know whether it was relevant to post here, but it was the best thing I could have done!

Hi Kerry

Yes you're right.. those poos do indicate typical malabsorbtion.. which can be caused by CF.. but CF is probably one of the least likely of the few things you mentioned, which could be causing it. Screening would rule that out once and for all though.. so you could ask for it to be done and save messing with any more sweat tests.

Please keep us posted.. or just keep posting for the support in the meantime. They are lovely people on this forum.. have me such a lovely welcome last Autumn when I first found MN. making me fee much better and helping me through a difficult time.

SJx

Hi Kerry, welcome from me too. I'm another autistic mum, err I mean mum of a DS with autism!! Socci, can't believe you're "new"!

Hello Kerry.

My ds3 was diagnosed with failure to thrive at two years old. We went through tests for coeliac and cf but they were negative. Even though the coelaic test was negative we did remove gluten from his diet for a year and this did clear his diarrhoea but he still grows slowly.
Like Lou, we never really got a clear answer. He is still very small and at the age of six wears age three clothes. He is also basically healthy although he looks unwell and every now and then the paed will comment on his growth and suggest having him looked at again.

I do sympathise as I remember how stressful it was at the time of the tests. I also remember how every other child seemed huge. At the age of two some six months old babies were bigger than him and I felt sick with fear when I realised this. Now as his teacher says his size just adds to the atttraction of his personality. Big girls always want to look after him.
Good luck with the paed appointment. I hope you get some news.

Hi Kerry -our children have such a wide range of issues on this section of mumsnet but I think the best thing about this board is probably that whatever the SN, we all understand the additional pressures this puts on us as parents. And as Jimjams says we are all used to dealing with paeds and additional appointments etc etc.

I hope you feel at home here, you will certainly get support and advice on anything we have experience of.

Ah but Socci you are one of the family now (says she who has only been posting about 3 months longer!!).

Hi Kerry.

Welcome to mumsnet and the SN board. I have 2 boys. My 4yr-old has been diagnosed with autism and my 2yr-old has a preliminary diagnosis of autism. I hope you find the site as useful as I have.

Hi Kerry / Connorsmum, welcome to mumsnet.
Listen hon', of course you belong on here. Your little one is poorly and you need some support, this site, and in particular this section of mumsnet is worth it's wight in gold, and then some, with regards to someone to pour your heart out too, tell all the bad, and the good stuff too, advice, support etc.

My little girl is 3 and she has Down's syndrome. Sometimes I feel I don't belong her, she's a healthy, happy little angel/monkey! You're going through so much more than I have / am. You wouldn't think I shouldn't be posting, and NO-ONE will think that about you, far from it.

So sad to read that you feel like a failure as a mother and I really think you need to deal with that. It's totally not true and you're beating yourself up, how will that help anyone, it won't, it'll do more harm than good. Why have YOU failed, what have you done wrong, nothing, you adore your son/s. Life's tough babes, and when babies are born there is so much that can and soes go wrong, it's a miracle that there arn't more children with special needs in the world.

Please, please keep posting, tell us how you feel in the build up to the 14th and let us know how tha appt goes.

Thinking of you, TC xx

connorsmum- i will email her and we will get the 2 of you 'talking'

xxx

Hi Kerry - I just wanted to say welcome too. You must be so worried about Jamie. I am quite new here too, I have a 3 year old ds recently diagnosed with autism. I know you'll get lots of support and information on this board. Let us know what happens at the paed appointment - fingers crossed.

have just emailed her...when ever i see her little lad now i feel so proud- he can have many 'treat' foods...so i love giving him 'cadbury's choc buttons'....