My son has development delays and i'm feeling really alone with it all.

[rachael872211]

My son is 27 months and is behind in all his milestones. I feel really alone with it all. I have my family and my OH but I do feel like I shouldnt keep going on about it all the time even though its all I think/worry about.

At 4 weeks he got Bronchilitis and between that he was very wheezy and it wasnt until he was 6 months old that he got treatment for asthma. Between that time he done nothing. Lying him on his front would just make him wheeze and short of breath. He also got recurrent chest infections from 4 weeks to a year old which always required steriods. Now they are not so frequent and he hasnt had steriods for a long while.

Lennie sat a 8 months, crawled at 18 months and now still won't walk. He climbs all over things but is really unsteady on his feet. He has physio once a month and was progressing well but between the last visit and one before he made no progression. The physio said Lennie is very flexiable and he also has low muscle tone.

Lennie doesnt say much. Probably 30-40 words and he doesnt link them. I think he can understand me really well though. He had a assessment with a speech and language therapist who put him around one year of age for speech but said Lennie wouldnt benefit from therapy and I should just keep doing what I am doing with him at home.

Lennie is under paedriatric care for his asthma and she is really good and keeps up to date with everything.

Basically it all started when my sister told me she thought that something was wrong with Lennie, we knew he was behind but put it down to him being unwell the first few months of his life. My sister telling me this was heartbreaking. I felt so sad and angry. Acting on this I called a HV who came and saw him and confirmed he was behind and done some referrals.

He had hearing test which was adequate for his age but he did have a bit of glue ear which I was told could come and go and as he has frequent infections this can cause them to come and go, so his hearing could have been on and off with infections. He has another hearing assessment in a couple of months.

He had a eye test which Lennie was so annoyed by the time he had the test becasue we had to wait 2 hours for his pupils to dilate. So we have to go back next week because Lennie wasnt co-operative in the test. They discovered Lennie was a bit short sighted and has astigmatism but they need to do another test to get more accurate results.

Lennie had a development assessment recently which scores him? It was out of 5 areas....the only I remember was social and gross motor skills. He scored 0 in 4 areas and 3 in the other. 0-5 meanth development delays. I am not sure if this means he has global development delays. The health visitor is going to refer his now for more detailed tests to see if there is a cause for his delays. She said they may do blood tests.....I don't really understand what they look for in the blood.

Lennie is also seeing a rhumatologist next week as he gets very purple hands and feet. His paed thinks he possibly has raynauds which is why he is having further tests. When his feet are bad he will cry in pain and won't stand on them. I wish I could say this is why he won't walk but I just don't know anything.

I worry its my fault he had the delays. My first child was born by c-section as the labour didnt progress and I couldnt push her out. Lennie was an attempted nomal birth which was successful but it took me a long while to push. It all a bit of a haze now but I worry that because I took so long I somehow starved him of oxygen but not enough to cause major problems....just the ones that are becoming apparent now. I am pregnant again and i'm really scared about the birth. I have an appointment today at the hospital to discuss my choice of birth and I really don't know what to do. I'm going to ask the midwifes opinion and if there is the slightest chance its my fault I will have a section again. I really don't want to because its going to be hard enough with a toddler and a newborn but I don't want to take the risk. I am thinking of requesting to see my notes but I havent got a clue what I am looking for!

I feel like it would help to be able to speak to people who understand what I am feeling or who have been through simelar. It's the not knowing what I think gets me the most and the guilt I done something wrong.

Sorry if my story is a bit jumbled up, I really didnt know where to begin and what to put where.

Thank you for reading x

 

[vixxen]

Hi hun i'm sorry you are going through this too ,and from what I can tell for a long time.
My daughter is also globally delayed( basically means in more than 1 area) with low tone ,fed via tube and has cardiac issues. She's just over 8 months.
Her blood is being tested for genetic reasons to her difficulties (testing for Digeorge symdrome) and next week will have her 1st MRI scan of her brain as due to her difficult start , may have injured her brain (possible cp).
I know you are probably blaming yourself at the moment for your sons difficulties , know this ITS NOT!.

 

[rachael872211]

Thank you. I did wonder if the blood test was for some kind of genetic testing.

Lennie had a eye test today which revealed he was short sighted and needed glasses. This explains his fascination with having things really close to his face. It may be some reasons for other things too. I guess time will tell when he can start wearing the glasses.

My mum and oh tell me off for blaming myself. How was your birth with your little one?

I hope you get some answers soon too. Sometimes I think I will be able to deal with it better if I just knew what all the health professionals were thinking. x

 

[MikaylasMummy]

Hi Hun. Your sons first year sounds a lot like my boys.he was delayed in everything as he was so unwell with continuous broncolitis for the first year.including two hospitslisations one with RSV. He walked by 16 months though.he is now just 2.5 and has a moderate speech delay and slight developmental delay from lack of speech.
My initial thinking from the first half of your post is that it sounds like hypoxia due to his lack of strength.and reading that his feet and hands are purple makes me really feel that his oxygen is an issue.has he had oxygen sat tests very often.is his asthma well controlled?i definitely think more tests are needed a blood work up for starters to check his CO2 and oxygen levels.maybe his lungs have some damage from how unwell he was.
It could be cardiac but given his lung troubles I doubt it's the latter.i hope his testing comes back that its nothing serious.is he on a broncodialator regularly?(ventilon/athsmol?)

 

[rachael872211]

I do feel that his first year does contribute to him now, just because he didnt have the strength to do anything.

What is hypoxia?

He hasnt had very intrusive tests.

We took him to ooh once when he was really hot and had blue hands/feet and they done his sats and his 02 levels were fine. On the way home he had a febrile convulsion in the car and we called an ambulance and they checked his sats again and o2 levels were ok again.

The other time he had his 02 levels checked was when I took him to the doctors because he had a blue tinge around the lips. Because it was the on call doc we waited an hour until we could be seen and by then that area had returned to normal. But he done his sats again and o2 levels were fine. The only time it has been recorded of having low oxygen was when he had bronchilitis and he was nubelised then and thats the only time he has been nebulised.

We did worry there was something wrong with his heart, again just the normal tests in that respect. His pulse checked and checked against his pulse somewhere lower on his body. Not really sure what they does but they are happy.

His asthma is well controlled now. We hardly use the blue inhaler, only when he has a cold or chest infection really. The brown inhaler dosage was increased about 9 months ago because of needing the blue inhaler too much and since then it has been much better.

We are determined to get answers on Wednesday. If she doesnt think it is Raynauds then it is defiently something else and we really want tests to see what it could be cause its defiently not normal. I even get my little girls friends ask me whats wrong with him legs and they are only 12! x

 

[MikaylasMummy]

Hypoxia is when not enough oxygen is getting to tissue around the body and it interferes with the tissue function ie weak muscles etc.
Even if his sats have been fine other blood tests can count his blood co2 and O2 levels and get a better idea.i hope u get some answers Hun.it must be frustrating not being able to help him when you don't know what's wrong.xx

 

[MikaylasMummy]

My oh's cousin was born with spinal muscular atrophy and it was characterised by low muscle tone especially in the legs and inability to sit til later on,late crawling and no walking.another feature is weak chest muscles causing respiratory problems.since your lo can walk to an extent and didn't sit awfully late even if he does have something similar I would say it would be the mildest form as it seems he has fair strength.dont want to panic you.it could be a number of things and the only was you'll know for sure is to get some genetic testing.xx

 

[rachael872211]

Thank you. I'm going to really push for blood tests. I know the appointment we are going to on Wednesday is not going to involve any tests but i'm not going to leave until there is some kind of follow up. x

 

[MikaylasMummy]

Good luck Hun.x

 

[rachael872211]

A quick update because I'm on my phone and it's horrrrrrible writing on here.

Lennies appointment was today and the consultant said he has acrocynosis. Basically blue hands feet mouth which is continuous rather than episodes. She said its not raynauds because there is no other indication. He doesn't get blisters/ulcers and his blood vessels in his fingers looked good.
I do feel relieved it's nothing serious. It was making me out of my mind.
He also took two steps! Although he's being stubborn and won't do anymore. X

 

[MikaylasMummy]

That's great they think its something not too serious!is there any treatment.

 

[Tiff]

So glad that it isn't anything serious. Kids can be so stubborn, eh? Yay for him taking a few steps!!! That's awesome!

 

[rachael872211]

I oknow. Lennie is so stubborn. Me and his dad can be stubborn so we say that lennie is extra stubborn. Lol.

There is no treatment.

The herb ginkgo biloba is supposed to be very good for circulatory probs by increasing blood flow to areas that lack. But he's only 2 so it's totally different. I myself would try anything myself. Lol. But for lennie no way. Im going to talk to his paediatrician about it in July to see what she thinks. X