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The most stressful 7 weeks of my life - i need help

(18 Posts)
Sirzy Tue 15-Jan-13 22:23:36

Glad you are finally getting the help you need.

Alamaya Tue 15-Jan-13 22:17:33

Hi all, sorry i havent replied earlier crazy crazy.

just over a week ago my son had another fit causing me to call an ambulance. On reaching the hospital i yet again expressed my concern over feeding and his very tiny frame. Still only 7lb 8oz at 9 weeks.

The doctor came to do a quick check and was concerned about his size. I explained i had expressed concern numerous times and no assistance really given. She admitted us.

During our week long stay in hospital my son had two more seizures. Was sent for an eeg (we have to wait for results) and was put on a medicine called Carbemazapine to stop futher fits.

With regards to feeding they believe he has a cows milk intolerance so put him on Aptamil Pepti (cows milk intolerance milk), after two days the dietician demanded he be placed on a new milk called Infatrini Peptisorb (cows milk intolerance milk, high calorie). Weighed after 2 days on new milk was 7lb 11oz. After another two days 7lb 13oz. So they have said if he continues to gain well for next 3 weeks they would be happy.

The new milk made him projectile vomit which they believe hes always had a form of reflux and so drinking hurt him. So now hes on a liquid Zantac called Ranitidine.

Meeting with SALT indentified a poor sucking reflex although did admit a very mild poor suck if that makes sense. She recommended the orthadontic NUK teats. Brought some wide neck ones and he wont take them but did take standard neck hospital version so ordered some standard necks tonight.

Got an appointment with physio to ensure his muscle tone and flexibility is ok after GP had previously told me he expected delays in these areas. Consultant had no idea where he got that info through and referred to reassure.

He now looks at me more and smiles and coos every now and again. They believe he was having smaller seizures that affected his sight.

Final thing they want a urine sample but as of yet i cannot get one as he poos a lot and it keeps contaminating the sample. two bags left!

Think i covered everything but least i have a little support now. We are under the care of SALT, dietician, epilepsy nurse (for fitting support), consultant still, hv still.

Oh and hes now in 0-3 clothes yeeeeeeeeeeeey smile..

blondefriend Thu 27-Dec-12 21:36:01

At his current age I wouldn't worry about the development and concentrate on the feeding and fitting. Any fitting could be serious - if you're not sure then phone 999, dont be embarressed (video it and let your pead know ASAP). It is also important to try and get the weight gain under control and I would start to raise hell if it's not happening. I really struggled to get anyone to take his reflux seriously and it caused me and him untold stress.

My son had brain injury at birth due to low blood sugars and had fitting at 6 weeks which was controlled with drugs. He was weaned off these at 6 months old. He was also FTT and needed to be tube-fed until 10 months. He definitely didn't smile at 7 weeks and was restricted to his hospital cot until 3 months old. However at 2+3 he is now doing very well. He doesn't speak and is under SALT but is a sociable, happy little boy who is developing steadily if a bit behind his peers. If you didn't know his story you would think he was a perfectly normal toddler. Good luck, it can be a hard road. xx

ArthurandGeorge Thu 27-Dec-12 18:34:17

When are you next seeing the paediatrician? Would it be helpful if you could ask your HV to come with you? They may be able to and you may find you get a more coherent plan. You also need to see a dietician, they can help you with the teats and observe him feeding, he might need high calories milk and he might need tube yop-ups, even if just a short term thing.

I am so sorry you have had these stresses and that you do not feel that the professionals involved have helped.

redwellybluewelly Thu 27-Dec-12 00:59:05

Will be back in the morning but think your son needs to see a paediatric neurologist, my DD also suffered a brain injury at birth due to hypoxia and is now 2. We've kind of done the rounds but think you have some misinformation and thwarted feeding thing really really needs taking seriously.

cestlavielife Wed 26-Dec-12 22:54:53

Ask to be referred to child development centre ,and refer to specialist . Feeding therapist dietician, physiotherapist etc and plug into all the services for babies with special needs. What kind of paed are you seeing?

You don't know yet what the outcome will be but far better you plug into all the services available and graduate out of them than wait and find out in six months he could already have been seeing specialists. And it is all supposed to be joined up now in child development centres ...if you post on sn board with your locality I am sure people will pont you in The right direction or call contact a family helpline.

OpheliasWeepingWillow Wed 26-Dec-12 12:34:11

Also 480ml (6 x 80ml) for example not enough as we both know.

I hate it when doctors just won't step up and treat issues aggressively especially when us mothers are begging for help.

Can you contact ped directly? When is next appt?

TackyChristmastreedelivery Wed 26-Dec-12 12:32:43

One tip - if the hospital bottles/teats worked well, then get yourself the pound shop bottles. They seem to work too. Slow feeders always seem to do best on those!

OpheliasWeepingWillow Wed 26-Dec-12 12:32:21

Bloody hell. I think your baby should be seeing a pediatric neurologist or at least someone with a little bit more proactivity. HV is not a consultant though no doubt doing her best.

Can you self refer to a consultant or request a second opinion? I say raise merry hell and get answers to your questions. Don't worry about being a nuisance or seeming neurotic. This is your baby!

As for the teats - I would just buy yourself if possible. Are they on eBay?

You sound like you are not getting the support and reassurance you need from your doctors.

Alamaya Wed 26-Dec-12 12:23:44

Hi all,

Sorry didnt reply earlier had a horrible bug over xmas sad.

My son is seen by HV every week for head circumfrance and weight checking (apparently head check tells them if the bleeds are continuing- so far they are normal).

We see a pead every 4 weeks although they have been useless. Last one we saw didnt know why we had seen him as we were under another doc and when hv chased it turns out we were under him after all.

HV is the one going on about the weight mentions high cal formula and all that (bottle feeds) but when she mentioned to pead they just said all they would do it tube feed him which wouldnt solve the problem but would refer to get his swallow relex testing. I explained time and time again the sterifeed disposable teats you get in the hospital work for him. They wont give me any. I nabbed some last time in hospital and have been miltoning them past few days and hes taking 90ml sometimes now where as on dr browns he takes 60ml max. Im going to have to buy some at £30 for 100.

Ive noted every feed since birth anyway did it with my last child so i remember. So they check that. Hes on 8 feeds a day. On dr browns (which by the way are the only reusable bottle that he would take after trying every other one) we get feeds of 40-60. On the hospital ones we get 55-90.) Currently alternating them and hes hit his target 5 out of the last 6 days.

Oh and we have caught a smile over the xmas hols and we think his eyes are looking at us now.

I know the pead at hospital said when a baby fits they dont develop. Now my son had them a week before diagnosed. Do i take it he will be a week behind. If so it would make a little sense.

If i have missed anything let me know.

Major thanks for the support. I was really really low when i wrote this post. Im still a nervous wreck but dont feel like the end of the world today

hugs and kisses
xx

OpheliasWeepingWillow Wed 26-Dec-12 07:39:15

<afterthought but here's a hand to hold too>

OpheliasWeepingWillow Wed 26-Dec-12 07:37:24

I would also go to the dr yourself. I am almost scared to try and feed dd and have ended up on Xanax. and am bloody grateful for it

OpheliasWeepingWillow Wed 26-Dec-12 07:36:14

I have a FTT baby.

1) are you under a consultant pediatrician? If not can you afford to go private? Otherwise get to your GP ASAP and get one.
2) call GP or consultant and explain your fears now. K
3) keep a diary of any apparent fits or vacant moments, all feeds, all nappies
4) breast or bottle by the way?
5) my dd was definitely only smiling web she farted at that age btw smile

I would get back to the doctor or hospital ASAP and move this up their priority chain.

I know the horror of a baby that doesn't gain weight. Always trust your instincts. Don't be afraid of making a fuss. Push push push.

I say this as someone who's dd was born with cord around neck, has failed to thrive and won't feed for toffee half the time.

ArthurandGeorge Mon 24-Dec-12 14:27:14

My first concern with this is the poor weight gain. This needs looking into very carefully by someone who can offer you direct, experienced help not just stating that it is a concern. Does he have any appointments to be reviewed specifically about this with HV/Paediatrician/Dietician? Has anyone taken a thorough history of his feeding? This needs to be done, not today, tomorrow or Boxing day but plans must be in place for after that. His feeding difficulties may well be an early manifestation of dvelopmental issues but the point is that they can be addressed through practical means to ensure your son's health and well-being. If no plans are in place go to your GP/HV, whoever you can see soonest, and demand review by a paediatrician and dietician.

With regard to his developmental issues, this is much more difficult. Has anyone discussed his scan results with you thoroughly? Do you feel that you were able to retain the information or did worry make it too difficult to take on board? You need the opportunity to go through this again, and again after that if necessary. It will be very difficult to predict the future for your ds at this stage. Unfortunately watching and waiting may be the best way to do this. Is he on any medication for his seizures? Did the paediatrician who saw him tell you what to do if they returned? If you do not know then you must go to see your GP asap and find out.

Does your HV know about the situation, has she been round to support you at all?

MammyKaz Mon 24-Dec-12 14:15:37

Sounds like a very, very stressful time for you hmm I think you need to get a treatment/investigation plan in place. Are you under a paediatrician? Shout for an appointment if necessary. Put all your concerns & questions on paper & get the answers you need. Speak to every person that can possibly help - GP, HV, consultant. Be polite but very firm, & chase constantly. It is true that he who shouts (or cries wink) loudest/longest gets action.
I hope DS improves quickly for you & you can enjoy your new addition. X

BillyBollyBrandy Sat 22-Dec-12 21:18:50

You are doing a WONDERFUL job - d'ya hear that? You have delivered a baby in an incredibly dangeours position and you got him out okay. You did a job no doctor/pead/midwife could have done better, you did that.

I am not a medic, but I know my dd's weren't smiling at 7 weeks. What I do know is that you need support. You need to talk to your hv and ask for help, someone to talk to. PND is incredibly difficult and can strike in the most simple of newborn situations. You are in a very stressful situation and need that extra level of support. It doesn't mean you are not coping, it gives you an outlet where you can talk about your fears.

I hope someone with more practical advice will come along soon.

lougle Sat 22-Dec-12 21:15:28

Alamaya, congratulations on the birth of your DS. I'm sorry you are having such a worrying time. We have a board on here for Special Needs - you might well not need it, but right now, while you are having concerns, we all understand what that's like over there smile

Alamaya Sat 22-Dec-12 20:55:30

Hi all,

Need to talk need to write it all down.

on 4th November i went into labour at home and didnt make it to hospital. My son was born at home an unplanned breech cord round neck x3.

A week and a half later after noticing twitching and weight loss we went to hospital to be told he was having seizures. A few days later we found out he had had two bleeds on the brain at birth. They appeared to have stopped but they could not tell us what the future held.

In this time his weight has gone down up down up.

Then we got a severe thrush rash on his bum which got infected.

Then we gained weight phew!

This week we have found out he has a umilical hernia, hes not smiling so apparently we are to be worried, he doesnt look at objects in anyway so apparently we are to be worried. Also he had only gained 2oz in a week.

He was 6 14 at birth and at almost 7 weeks he is now 7lb 1oz.

We are now labelled failure to thrive.

Tonight his leg twitched again now could of been on a nerve so keeping an eye on him but could be fitting again.

I really dont think i can take this anymore. No one helps me they just tell me he is not gaining weight enough, they tell me they cant tell what the future holds and i sit here worried sick.

Its getting to the stage i dont want to be near him because im frightened i will find another problem.

Oh yeah and i have a 19 month old who wont sleep without daddy so im on my own everynight.

sad

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