Desperate for some advice

[Elizaraven]

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

Hi all just wanted to update as

Sorry little one jumped on me so my post was sent to early lol wanted to update incase anyone else was going through the same situation as me ....

We tried cutting the dairy out but it didn't seem to make much difference so we've carried on with the no dairy but have given my son reflux medicine on top as a last resort & I can finally say he is now sleeping & a completely different child altogether it has been such a relief to finally figure out what was wrong & I can't express enough if you feel there is something not right keep pushing to be listened to as the doctor gave it to me purely because I mentioned reflux on a whim & he said give it a go.

We are still due to go to physio for his stiffness but apart from that he is a completely different child. I enjoy being a mother again & don't dread each day. Hope this helps anyone going through the same

Another update just incase anyone is in a similar situation.

Compete U-turn since my last post we carried on with the no dairy & reflux medicine, at first things seemed to be looking up with some quiet nights & we finally thought we had cracked the problem but 2-3 weeks down the line & we was back to square one. We had the physio appointment & have since found out our son has low muscle tone in both legs & exaggerated reflexes in one side, we are due to go back in a couple weeks to see what progress he has made & we will see what happens from there.

Of course when I received the letter I done the worst possible thing & googled what that could mean & something that keeps flagging up is mild cerebral palsy. Reading more into it all & the symptoms add up to what we have been experiencing since birth, I'm a firm believer in not taking what is said on the internet as gospel but i want to try to prepare myself incase it is something we have to deal with.

I have always had a feeling that there is something different with my little one, he is my third child & when I say this to people I can see they pity me & even have said could I have some sort of postnatal depression. It is incredibly frustrating, to even the doctors & health visitors not taking what I was saying seriously.

If you have doubts or that mother's intuition that something is not right, keep pushing. I will update again as soon as I have more information incase anyone is struggling as much I have this past year & hopefully I will help someone else because it's a lonely situation to go through

Ah, what a roller coaster for you :( Will you ask about CP in a couple of weeks when you see the physiotherapist? It's so frustrating waiting but I think the problem is at this age they often genuinely don't know what the problem is. It is horrible from a support perspective though, as it just means you get no help or reassurance when you need it most.

I don't know much about CP but a friend of a friend of mine who has it did a good YouTube video about it called "I got 99 problems ... palsy is just one" (she's called Maysoon Zayid - she's a stand up comic so it's very funny - linky here: www.ted.com/talks/maysoon_zayid_i_got_99_problems_palsy_is_just_one?language=en).

I think I will as I feel like I need answers & hopefully they will get the ball rolling. It is the emotional support side of things I'm struggling with, I feel like I'm boring everyone talking about things & I don't want to be that person. Also my partner is a 'bury my head in the sand' type & trying to talk to him about things I get a angry response so I keep my worries to myself.

Thank you I will take a look

Maybe see if there are any parent drop ins or support groups you could use? I know it's really hard pre-Dx as you feel like you somehow don't "deserve" to be there, but in my experience people are very welcoming and if you explain you are worried and have questions/need to talk, I think most groups will be extremely welcoming. If you Google for your local authority name and "Local Offer" you may well find something local listed there. Otherwise Facebook Groups can also be good (they are usually private - but again, I think if you explain you have concerns but not a DX but want to learn and talk to other parents they will definitely let you join).

Best of luck with the physio. I hope you get some answers soon.