Toddler like newborn again?

[MummyofBaby]

Hi, I just wanted the experiences and advice of others. My toddler is 21 months old. He reached all his milestones early/on time, feeding very well and was very healthy/strong/super energetic. When he was almost 1 he caught a nasty virus and he stopped sitting unsupported, developed low muscle tone and couldn’t gain weight properly. Other than that, he was still developing in all other areas appropriate for his age. When he was 17 months old, I took him to see a Paediatrician as he was still not fully back to himself and still couldn’t do some things which he used to. I was hoping for a treatment. Well, he was hospitalised and given some strong medication but they never gave a final diagnosis. Once we came back home, strange enough he couldn’t sit in his chair anymore and fell, his head was wobbling out of control as it did when he was a newborn, kept sleeping and he couldn’t move any part of his body properly including his hands! He is still like this now - literally like a newborn! - with no answers from any healthcare professional as to why. Funnily enough, once his medication was stopped two months ago and with some physiotherapy he has been slowly moving his hands/arms/etc - very slowly - turns out these medications shouldn’t have even been given to him.

I just wanted to know if any of your little ones had severe side effects to viruses/strong medication and how long it took for them to get back to normal?

That must be so worrying for you. I hope you get some answers soon.

Are you getting any help apart from physio like SLT?

Thank you. Yes he’s getting help from a multi-disciplinary team for his needs, however, it’s just been such a drastic change going into hospital normal with a few problems and coming out with so much more. I hope I get some answers soon.

That sounds incredibly concerning. What medication was he given? Did they tell you what virus he had/what body systems it affected?

Has he had a mri scan?
We're they aBle to say shat virus it was?
What medication was it?

Yes. It was a recurring mystery virus. Each time my baby got it they started back at new born. It is a long story but they are now a big cheese at Whitehall!

Have they ruled out metabolic issues? How awful, I'm so sorry. Do you know what the strong medication was meant to be treating?

Has he had any seizures?

That must be such a worry for you. What have paeds said so far?

Hi everyone, thank you so much for your messages. They performed some blood tests and found he had previously had two different viruses - Cytomegalovirus (CMV) and Parvovirus B19. He was given some strong anti-reflux meds (only meant to be prescribed to adults) for his very mild acid reflux (he would frequently burp after feeds and posset but normal amounts) and strong antibiotics (which were given just in case to prevent any chest infections in the future - (as he had one in the past due to the virus). The antibiotics was not given because he currently had a chest infection and it’s strong enough to cure pneumonia. I of course agreed to everything as I honestly thought they were onto something and knew what they were doing but turned out they didn’t even have a diagnosis but were only ‘managing’ symptoms. Some of the symptoms I mentioned to them were really blown out of proportion. Anyway, his full blood count was fine. Other tests were normal but they did find he had low muscle tone (very mildy affected as he was still super energetic), enlarged adenoids, glue ear, enlarged liver/spleen - all of which can occur as complications of a virus in some cases - and all these symptoms only appeared once he got ill. After these medications, he has become so weak. No one would have noticed he was an ill child before going to see the paediatrician, but now he needs 24/7 care. It’s heartbreaking. Waiting for him to recover as I know he will but it will take time. Just looking for some similar experiences, advice and reassurance.

Also, no he hasn’t had any seizures and they performed an EEG which was normal.

@NellietheNumpty

Yes. It was a recurring mystery virus. Each time my baby got it they started back at new born. It is a long story but they are now a big cheese at Whitehall!

Those times must have been really heartbreaking and stressful for you I can understand. Were any tests performed? How old is your little one now? At what age did they get out of the ‘returning to a newborn’ phase? Any advice/information will be helpful.

Seems like he has had some terrible care. But kids do bounce back really quickly.

@MummyofBaby I was a bit reluctant to reply as it was a deeply upsetting part of my life and not one I like to think back on. However we only hope we can help someone else in the future and that is you.
My baby ran bouts of high temperatures, kidney difficulty and skin lesions. He was in and out of hospital for his first 6 months. Each time he got the mystery virus he regressed. The tests became more and more invasive and it was frightening. One day a senior doctor said that although he couldn’t give a diagnosis he has seen the virus before and put us on a regime.
My baby did not wean usually but seemed well. The virus did come back from time to time. They would stop walking and loose speech. It was hard to manage emotionally and practically as a well child would loose so much so quickly. They needed extra support through life until 4 with speech and eating. At 4 they got stronger than the virus, running very high temperatures and would be on hold for a few days but didn’t loose ground so dramatically. As a child they remained wafer thin and prone to viruses but each year that passed they got stronger.

Thank you so much for replying although it must have been so hard having to go back to those very emotional memories. I started crying reading your post. It has been a very, very difficult time and seeing my baby go from such a healthy, normal boy who won’t keep still and a love for food to now barely moving with nasogastric tube feeding, etc, etc, etc it’s something I won’t wish on any mother. Your words have really helped me that much more with reassurance. I’m glad that your baby is doing well now. It will take time - I just need to be patient and bare this emotionally/physically… there’s a long road ahead.

Suggest you speak to cmvaction.org.uk/get-support

For advice

Thank you for the link. I did contact them initially a few months back but didn’t receive a reply. I think actually I’ll try once again and see what they have to say. Hope they can help.

There may be a forum or Facebook group?

Oh that’s a great idea. I will join a CMV forum as parents with similar experiences can discuss it with me which will be very helpful. I’ve also emailed CMV Action.

I’d not heard of CMV, which seems surprising if it’s the most common infection. I hope you get some support OP.

Yes, I was not familiar with it either until I found out my son had it. Apparently it’s a very common virus with many people having antibodies to them as they’ve been exposed to them before, with some people being asymptomatic, some people presenting mild symptoms and some people with severe complications. Yes I hope I get support for my son too.

I had a look at the CMV website. It’s a long time for you to have been worried about your son. Very draining for you. Really hope it’s like the poster above and he just kind of grows out of being so affected.

Yes I’m really hopeful he does. It’s just he’s been going through so much but he’s recovering very slowly - it’s all been very upsetting as he was so healthy and bubbly - as a mother it pains me to see him in this way but he’ll get there.

I can only imagine how hard it must be. To see him how he was and have seen such a change.

The majority of babies born with congenital CMV will not have any symptoms at birth and will not suffer any long term problems. However, two or three babies are affected by the CMV virus every day in the UK – almost 1000 babies every year. Congenital CMV is more common than Down's Syndrome and causes more birth defects and childhood deaths than Toxoplasmosis (from cat poo) or Listeriosis (from soft cheese).
CMV Action has a Facebook Family Support Support Group as well as a main Facebook page www.facebook.com/CMVAction You can request to join the support group from the main page. Right now we are petitioning for all babies to be screened for CMV because anti viral medication needs to be given within 28 days of birth. Sign the petition here petition.parliament.uk/petitions/587186

Reading this is mirroring my story, I'm so glad I've come across this page as I've been mumsnet surfing for ages.
My Dd is 11 months old mid July I notice she didn't want to bear weight on her left thigh, she already had a runny nose etc as she was cutting 4 teeth😫
Couple days later she developed a high temp and its been like that to this day where shes had 2 episodes of 36-48hrs without a fever. Went to BHH twice who said UTI wasn't convinced started co amoxiclav, still no improvement after a few days went back no help. Then went to BCH terrible experience. The next day my DH had enough and took her that was the 19th July they admitted her. They have since done bloods crp 198 a lumbar puncture, blood cultures all of which have been negative. Was having a broad antibiotic for the lieks of meningitis and septicemia injected into her leg.. then flucloxacillin then clindamycin.. she's had a chest xray clear, hip xray, ultrasound and mri which showed fluid on hip joints.. got moved to BCH as they couldn't get a cannula in. They done this under general and gave her a full body mri they seen the fluid on hip joints only thing they seen was slightly enlarged reactive lymphnodes which they wasn't to fussed about.. she had a blood film done, bless her she caught a virus in BCH . She hadn't been her happy self since that was a week 2day. The blood film came back her liver enzymes since hospital have elevated and she has elevated ferritin. We under infectious disease Dr but he wants her to see a rheumatoid Dr. I'm going out of my mind with worry panic... I'm happy the drs are doing all they can but the not knowing is killing me. I'm terrified she has cancer they've said at this stage thers no evidence to suggest.. but next investigates is more blood 2mora to repeat and look at immune level and RH.. then next will be to aspirate bone marrow. I look at my daughter and she is a shadow of her happy jolly self.. advice and support needed. Thank you for reading