Desperate for some advice

(32 Posts)
Elizaraven Wed 02-Jan-19 20:31:11

I have been toying whether to write this post for the last hour as not sure where to turn to. My 10 month old boy is displaying some worrying signs & as much as I try not to google things I can't help myself because I am at a loss.

Ever since he was a baby he has never slept well, I have never had a full nights sleep & it is progressively getting worse, he will wake averagely 2-4 times a night moaning or crying uncontrollably. On some occasions it has been 10-15 times a night. I have tried the advice given by HV to stop with night feeds & same routine but still it is the same outcome.

Same thing happens during the day with naps, he cries uncontrollably for up to 30 minutes & when he does sleep it can sometimes only be for 20-30 minutes. Eventually if he doesn't sleep I give in to bringing him back down with me as he is so distressed but he still doesn't sleep he will stay awake until I try again.

He cries 80% of the day, I have tried to comfort him, ignore him, distract him, make sure he has a clean bum, give medication as he has been teething recently, feed him, give him juice, try for a nap ... yet nothing works. He seems to be a very unhappy baby.

When I cuddle him he will lay on me for maybe 1 minute maximum but will pull away from me & become very agitated & generally doesn't like cuddles unless he is facing outwards & preoccupied with a programme on tele.

He doesn't communicate very well, doesn't point to things or show much interest in any toys we have. He will twirl his hands repeatedly & his hands shake when his food is in front of him or if he is upset or excited over something.

He gets extremely upset before breakfast/lunch/dinner time & then when he has finished eating (a huge bowl of food) he then cries for a long amount of time until we distract him or give him juice. I now dread food time because it's extremely stressful.

He is very stiff in his movements, locks his back up when we try to sit him down. He doesn't have much control over his hands & everything tends to end up on the floor when he is in his highchair. He attempts to pick up food or his juice but his arms jolt out aggressively & every thing that is in his hand goes flying.

HV has advised to take him to the doctors to get him checked over because of his hands shaking & a couple of other things but I am still waiting for a doctors appointment to become available.

I have two other children, 14 yr old girl & 3 year old son. I can't explain why but I can tell there is something different with my 10 month old, I love him to bits but life is becoming unbearable now with the constant crying. Me & my OH are bickering as it's wearing us down & I'm really at a loss.

Everything I write in google for help it always flags up as autism but I don't want to assume it is that because he is so young. I guess I'm just curious if there are any other mums who has experienced anything similar to this & if they have do they have any advice as if there is something wrong I would like to be able to comfort my son to make him feel safe & not feel the need to cry all the time.

TIA for anyone who replies

OP’s posts: |
minipie Thu 03-Jan-19 00:17:54

I’m so sorry you have this worry. In your shoes I would want any physical and neurological issues to be considered and ruled out before turning to consider autism, as it sounds like there may be something making him physically uncomfortable. Also at 10 months I doubt any dr will really consider autism, they would say wait and see. So you may be best off asking the dr for a referral to a good general paediatrican, who can then refer on to any specialists they think are appropriate. Best of luck and hope you get seen soon (if you get fobbed off, make an appointment with another GP...)

Elizaraven Thu 03-Jan-19 08:01:17

Hi thanks for your reply, I did also think this. Doctors are pretty useless in my area & tend to make you feel like your overreacting but I will push for it to be looked into. Hopefully I can get to the bottom of it, just feel so useless when I don't know what's upsetting him so much

OP’s posts: |
minipie Thu 03-Jan-19 09:20:59

Hopefully they will be less dismissive as you have two older children so won’t be seen as an “over anxious first time mum”. I think emphasise the physical issues, the shaking hands “, jerky arms and lack of hand control, stiff back, the crying before and after meals. Not meaning to brush off the other issues you have noticed but I think it’s those physical things that are more likely to get you a referral to a paediatrician or at least a paediatric clinic. It’s very tough having an unhappy baby (and especially one who doesn’t sleep), I had one too and do feel for you.

LightTripper Thu 03-Jan-19 11:22:24

I can see why autism flags up but as PP said it's early to try to draw conclusions on that. My friend was worried her DS was autistic when he was smaller (I don't know the details I'm afraid but definitely issues around sleeping, feeding, constant crying, not responding to name, lack of babbling) and the medics' final theory was that a valve on his stomach had not formed properly yet so he was in pain a lot of the time - particularly lying flat and around mealtimes. They were in the US at the time and were just starting on behavioural therapies etc. when he turned 1 and it just resolved itself (at which point the suggestion that it had all been gastric was raised - nobody figured it out at the time even in the US with good insurance). He is now 7 and definitely NT.

May be worth trying more smaller meals to see if that helps? But I would definitely also pursue the GP and emphasise the rigidity, shaking, lack of hand control, upset around meals. In my area there is an OT drop in for children - may be worth seeing if there is anything similar in your area or whether you can self-refer if the GP is not helpful: I know he is very young but they may still have some ideas whether his physical movements are age appropriate or not, or denote that he might be in pain or have problems with motor control. If you Google your local authority name and "Local Offer" and then see if there is a page on Occupational Therapy that should have some contact details (e.g. www.hackneylocaloffer.co.uk/kb5/hackney/localoffer/service.page?id=MKmOf42KA6c)

Elizaraven Thu 03-Jan-19 23:21:54

Thank you to you both I appreciate the advice, I don't really think it's autism either but I think I'm so desperate for a conclusion I'm grasping at straws. I tried the doctors again today but appointments were taken up, I'm considering changing GP if I can & also looking into the other things you have suggested on the local help. I just hope it's something I can resolve soon as it's horrible seeing him so upset all the time.

OP’s posts: |
minipie Thu 03-Jan-19 23:35:28

Just one further suggestion, take some short videos of the jerky arms and trembling hands and maybe the crying pre/post meals, may be helpful at the GP (when you do get to see one). Do also absolutely mention to the GP that the HV said he should be seen by a doctor as that shows the HV thinks there is something worth investigating - in fact maybe if you say that to the dr receptionist it may help you get an appointment...?

Elizaraven Fri 04-Jan-19 08:58:39

I've taken a couple of videos of the hand shaking, didn't think about the crying so will take some videos of the crying before meals. I have the HV notes wrote down in the book to show the doctor & yes might be worth showing the receptionist. Thank you smile

OP’s posts: |
Jandapanda Sun 06-Jan-19 21:25:39

My daughter was showing similar symptoms when she was a baby although much younger than your son. She was diagnosed with dairy, soya and egg allergies which caused her great discomfort. Crying, not sleeping well, upset tummy, arching or stiffening back were all because of that discomfort she was having all the time. Is there any other symptoms that may suggest that he is physically in discomfort like being sick, itchy rashes etc?

Jandapanda Sun 06-Jan-19 21:34:14

Also re gp appointment I would just go first thing in the morning and explain that you need to see gp as baby is in great discomfort and tell the symptoms. They surely have slots available for acute problems which sounds like yours is.

laura2107 Mon 07-Jan-19 21:12:49

Iv just came across this post. I was in your position 3 years ago. My son acted very similar would never sleep, always seemed distressed, I couldn't have people over to the house without him getting to upset so they would need to leave, hand flapping, no toy interest...the list could go on.
Fast forward to 3 years on and we have just received his diagnosis for autism. I like urself noticed all this from a young age so when he turned 1 i pushed for my heath visitor to start making the referrals to asses for autism which has taken nearly 2 years on total and from now speaking to other parents that's not been that long as some people. What I'm trying to say is if you have any suspicions then push for the test as it does take years and even if your son is autistic then the younger you find out the more help you can get for him. My son is 3 and still totally non verbal with no communication skills. Since starting to get help through various places we have started to see small improvements.
If you have any question about your baby then just ask. Hope this post was some help xx

laura2107 Mon 07-Jan-19 21:16:23

Iv just came across this post. I was in your position 3 years ago. My son acted very similar would never sleep, always seemed distressed, I couldn't have people over to the house without him getting to upset so they would need to leave, hand flapping, no toy interest...the list could go on.
Fast forward to 3 years on and we have just received his diagnosis for autism. I like urself noticed all this from a young age so when he turned 1 i pushed for my heath visitor to start making the referrals to asses for autism which has taken nearly 2 years on total and from now speaking to other parents that's not been that long as some people. What I'm trying to say is if you have any suspicions then push for the test as it does take years and even if your son is autistic then the younger you find out the more help you can get for him. My son is 3 and still totally non verbal with no communication skills. Since starting to get help through various places we have started to see small improvements.
If you have any question about your baby then just ask. Hope this post was some help xx

Epiphany52 Mon 07-Jan-19 21:21:38

While you are waiting for some help could you sometimes wear earplugs? When my children were little and cried a lot I would sometimes do this for a bit of relief from the noise. I would only do it when they were safe eg in Pushchair. It may take the pressure off for a while.
I hope you find a solution OP

April2020mom Mon 07-Jan-19 21:27:48

Hopefully you’ll get a referral to a autism specialist soon. At the very least they should definitely be able to answer your questions and provide advice. Push the GP for a referral. What tests have been done so far? Do you have any of the results or not? It might be a idea to discuss any concerns you have. Don’t hesitate to insist on answers to your questions.

Elizaraven Wed 16-Jan-19 00:30:34

Hi sorry for lack of replying until now, I have finally managed to see a doctor. He did what I thought he would do, disregard all the concerns I had but was worried because his head had raised 2 centiles since birth.

Have left till today to reply as finally saw a pediatrician, he is not concerned about his head. He has suggested that we try soya milk to see if that changes anything & also referred for physio due to his stiffness. His reflexes are all okay but he said a physiotherapist can pick up things sometimes better than they can with how rigid he is. He also said it will take time if there is a problem it might be something that they won't be able to pick up until he is older & developed more.

So basically I'm left to try changing dairy to soya & waiting for another appointment but I'm grateful it's progress.

Some days I can cope, other days (like today) I want to break down & walk out the door. I'm exhausted, ill, need to be up for work at 5 & little one is currently on my lap fighting me because he doesn't know what he wants after waking three times tonight & a hour crying before he would settle to sleep.

Thanks for everyone's advice smile

OP’s posts: |
laura2107 Wed 16-Jan-19 05:26:07

Please keep pushing for help...I went through my health visitor as I felt she knew my child more than a doc that he never saw.
The sleep thing is horrendous, I never thought I was going to cope or it was going to get better but it has now. Have you tried putting a white noise machine in the room? Children on the spectrum can pick up on noise and background noise that can really upset and bother them which wakes them up. I would try putting a white noise machine in the room to cancel out any background noises. Really hope you get the help you need. My son is allergic to dairy...iv found Tesco to be great for kids dairy free yoghurt ect dunno if your near a Tesco but they do the best range Iv found xx

LightTripper Wed 16-Jan-19 10:49:15

I'm glad you got to see a paediatrician even if for slightly the wrong reasons - sounds like they took you seriously at least. Did they say anything about next steps if the soya does/doesn't help? I hope the soy does make a difference. Lack of sleep is the worst, even without the associated worry and trying to juggle work and home. White noise is worth a try. flowers

Elizaraven Wed 16-Jan-19 12:38:24

Thank you for the replies, I've started the soya today & yes we have a Tesco near us so will have a look for the soya yogurts & see what other bits I can get for. They didn't say what to do if the soya doesn't work so I will probably just have to try other things or go back to HV for advice.

HV wants to see him next month as he is behind a little bit on development side of things so I will be able to discuss it then with her then.

I haven't tried white noise so I will give that a go to, he is also in a room with his little brother & the bedroom door doesn't close properly so I'm thinking of moving his cot back into our room as it's more peaceful in there & maybe try some other bits that I've looked up, at this point I'm willing to give anything a go so he is more settled.

I shall update in a couple of weeks after the soya has got into his system properly & see if that makes a change smile

OP’s posts: |
laura2107 Wed 16-Jan-19 23:15:14

Good luck and update in afew weeks to let us know how your getting on xx

Nettleskeins Thu 17-Jan-19 12:52:19

Have you considered Silent Reflux which can cause a lot of pain and wuold be diagnosed by a paediatrician?

The most obvious thing with reflux is that food causes pain, as the acid in the stomach is constantly burning the aesophagus, and it takes specialist medication.

Lots of babies get reflux early on which then resolves when they go onto solids, but silent reflux can continue longer I think.Is it my imagination or is there something called Rantidine which helps severe cases (prescription) dd had the ordinary sort, but I remember that she was very needy and slept much better upright (ie in a sling for a walk)

Soy milk can also cause allergies in some babies. There is another milk which is hypoallergenic and not soy or dairy based but again a paediatrician would tell you the answer.

tbh I would be most concerned about the lack of sleep your baby is getting and try to get him to sleep in some other way, pram, car seat, white noise, upright in sling for long walks if you have the energy, rather than attempting to put him down in the cot.

Dd's reflux much improved as she got older but she is still a very fussy eater and very sensitive to textures, gets very tense if meal times aren't calm. I think having a bad experience with reflux gives them bad associations with mealtimes and food even when pain is gone.

Nettleskeins Thu 17-Jan-19 12:56:57

btw I have twins. The one with reflux does not have autism.The other one does have autism and he did not show any of the symptoms you describe, although he was a bad sleeper in some ways.

So autism may be a red herring. Sleep is incredibly important though, and affects a baby's behaviour. Autistic children often have poor sleep patterns but that doesn't mean that the opposite is also true, that children with poor sleep are always autistic.

Elizaraven Thu 17-Jan-19 13:27:57

I did also think this due to him waking so much through the night, it was the first thing that popped into my head. I asked about silent reflux when I spoke to the doctor, I was suggesting anything to get him to investigate but he told me he is showing no signs of that. Even the HV kinda wrote silent reflux off as well when I suggested it. Meal times are pretty stressful because he cries until he starts eating then when it's finished he has another melt down, on occasions he has cried mid feed & I've had to stop & get him to calm down with some juice or he would choke. I'm going to try the soya for 2 weeks to see how I get on & then if no joy go back to the doctor or get in contact with the paediatrician if I'm allowed to take that route to see if he can investigate silent reflux.

OP’s posts: |
ElyElyOy Thu 17-Jan-19 19:13:56

I’d be interested in the opinion of a gastro paediatrician: it sounds very Reflux/allergy related. It can take quite a few appointments to get it diagnosed!

Look at the CMPA website as that can often cause reflux/reflux like symptoms. Also living with reflux website. It’s up to 6 weeks for dairy to leave the system. You need to be completely dairy free so need to check all the food for milk/cheese/butter (EU regs for labelling are quite strict so most companies print MILK in bold if an ingredient is derived from milk, but occasionally labelling is poor/unclear and it will have BUTTER etc in bold instead). 50% of babies who react to dairy react to soya so if after 6 weeks there’s no improvement (or they are worse) then I’d cut soya.

Elizaraven Thu 17-Jan-19 19:27:38

They told me to try 2 weeks to see if it improves but seems a bit silly advice if it takes 6 weeks to get out of his system. I'll look into the websites & go from there, Thank you.

OP’s posts: |
Jandapanda Thu 17-Jan-19 19:34:22

Be aware that dairy and soya proteins apparently very similar so usually when babies intolerant or allergic to dairy they are also allergic to soya. This was the case with my daughter, when I replaced dairy with soya there was no effect but pediatrician then explained that soya is the only plant that is similar to animal food products by its proteins. I then replaced both with almond, oats and coconut substitutes

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