Developmental disorders/learning disabilities/genetic syndromes & more support group

[bumpin2012]

sequeena, busy is an understatement these days. we sold our condo, bought a house with a big yard. we move September 4th. hubby is being deployed next week with the baby for a month, so I'm staying out about managing 2 kiddos solo for a month. we have very little support here right now, and I'm freaking out a bit.
G is doing pretty good, considering the big change his sister has brought with her arrival. loves her to bits ( sometimes a bit too much!) but he's acting out a lot. the shrieking is what gets me... it's grating on my nerves. his last ASQ results put him 3 months behind ( up from the previous 6 months) and he's gaining more words
J is cuddle bum, and the lightest non sleeper I've ever experienced. she refuses to sleep during the day, fights until she's utterly exhausted. she needs a lot of walking and bouncing to fall asleep and if I dare put her down, she wakes within minutes. I'm REALLY hoping that gets better ASAP... she's a great night time sleeper though. she only wakes once around 5 am to eat, and has done so consistently since 8 weeks old

 

[bumpin2012]

my babies

 

[bumpin2012]

my babies

 

[LalaR]

Hi ladies, I don't know if I'm being over anxious and I don't know if this is the right forum to come to.
My little boy is only 10 weeks old but we have just been referred because of possible developmental delay. I was really shocked as I hadn't thought there was anything wrong. The doctor assessed him twice ( both times during his sleepy time) and feels he is hypotonic with minimal head control and she is worried he can't see because he doesn't blink. He has some reflux and has been slow to gain weight although is growing better now although is petite. The doc thinks this is all related. The baby I see smiles and looks right at me. He kicks on his mat and when held upright does have some control of his head movements. I wonder if he has regressed over the past few weeks with his gross motor skills.
I'm now imagining all sorts of things. Has anyone had similar concerns raised at this age and what happened from then? Sorry if these are inappropriate questions. X

 

[annanouska]

nothing that young for me. I would record everything you witness in a diary and note any concerns. If there are issues atleast they r being picked up and u can get the right support ASAP

 

[nicki01]

I agree with Anna, I've no experience that young but would definitely record things then you can see progression etc without questioning yourself to much.

 

[essie0828]

My DD was hypotonic at that age but even though I noticed and brought it to the attention of her pediatric doctor, they told me to wait and see. They anticipated she would get stronger on her own. She had reflux issues and her weight was in the 15th percentile. Her feedings were 2 to 3 oz around the clock still at 3months. Even though she was hypotonic, she wasn't the text book hypotonic, it seemed to come and go. Sometimes she could control her head and was a tummy time champ. Sometimes she would just seem wore out and wouldn't try. I thought she was just tired. Looking back, our doctors were trash. We should have been sent to early intervention well before DDs first birthday. If the docs have noticed hypotonia, definitely keep an eye on it. Track development with videos and show the docs how he does at home. Go ahead with early interventions and PT if referred for it. Does your kiddo have constipation issues? It kinda comes with the hypotonia sometimes. Try not to freak out but be on alert for milestones and keep close track with the developmental pediatrician.

 

[essie0828]

Bumpin I love the pics! Lil miss is beautiful, and the pic of G looking at her is priceless.

 

[bumpin2012]

thanks Essie! they adore each other right now. I'm trying to take as many pictures as I can. one day I may need proof that they actually do love each other...

lala: it's never a bad thing to have a professional paying attention. I never did convince our Dr that anything was wrong with G (27 months). I contacted early intervention, I got him seen by our provincial hearing and speech services, and found a way to get him in to a developmental pediatrician all without her help. now that I have a very normal developmental baby, I can see major differences between her and G, even at 12 weeks! 10 weeks is still young, and you may find that catchup happens, but I'm glad someone is keeping on eye on him. Perhaps a visit to a physiotherapist may be helpful?

 

[sequeena]

Looking back it was obvious that Thomas had (and still has) hypotonia but as a first time mum I really didn't know what to look for and it was really only at 17 months when his other issues became apparent that doctors took an interest. As said record everything even if you think it's irrelevant.

 

[LalaR]

My DD was hypotonic at that age but even though I noticed and brought it to the attention of her pediatric doctor, they told me to wait and see. They anticipated she would get stronger on her own. She had reflux issues and her weight was in the 15th percentile. Her feedings were 2 to 3 oz around the clock still at 3months. Even though she was hypotonic, she wasn't the text book hypotonic, it seemed to come and go. Sometimes she could control her head and was a tummy time champ. Sometimes she would just seem wore out and wouldn't try. I thought she was just tired. Looking back, our doctors were trash. We should have been sent to early intervention well before DDs first birthday. If the docs have noticed hypotonia, definitely keep an eye on it. Track development with videos and show the docs how he does at home. Go ahead with early interventions and PT if referred for it. Does your kiddo have constipation issues? It kinda comes with the hypotonia sometimes. Try not to freak out but be on alert for milestones and keep close track with the developmental pediatrician.

Thanks for answering. That sounds just like Lewis. His weight is on the 9th centile but he is growing. He has the reflux but not constipation. I'm breastfeeding every 2h during the day but he goes 6h at night. Some of the time his tone seems normal and sometimes he just seems too sleepy.
I'm in the uk so need to wait for a referral before I can access physio advice. I will get the video camera out and record what he can do when he is alert to try and help the specialists.

What has been the outcome with your little one if you don't mind me asking. Xx

 

[DHime]

Hi. Im new to this thread. My ds just turned 2 and is on level with an 18 month old. He doesn't talk yet and has a gtube. He is in the 0 percentile on weight. I never knew you could do that.

He was also 3 months early and has had 4 surgeries and 8 times put under. We nearly lost hi in october dueto cdif.
on top, people seem to expect him to be well behaved but they just don't get that he is delayed and just what that means in regard to his behavior. I do discipline him. If he cries too much, he vomits into his lungs and risks pneumonia. it is very hard toexplain this. I have stoped taking him to most public places since people have zero on tollerance for toddlers. He can't be with other kids because of a compromised immune system.
just makes me want to scream

 

[sequeena]

Hi DHime. It's very hard trying to explain our children's issues to people who have not been tiuched by special needs. They just assume things I hope your LO is ok right now what an awful lot for both of you to deal with x is the vomiting into his lungs something doctors will be able to fix? It must be so hard walking the line of disciplinging and 'giving in' because yoy know he will be ill if you don't x you are welcome to chat to us whenever x my son has/had a delay of 15 months behind chronological age. He is due another ruth griffiths assessment so we don't know where he is developmentally right now but he definitely not where he should be.

I have just got back from his OT appointment. It was worth the 9 month wait. I wanted to cry with relief. The therapist is wonderful he said straight away he can see Thomas has lots of isdues especially hypermobility. In his words his limbs 'go everywhere' lol!! It also helps that the person who will do the therapy is his pre school worker. She knows him so well. It's a massive weight off my mind. Anything behavioural they said they will refer to cahms. He will soon start 5-6 weeks of therapy. I am so happy!

 

[minties]

That is good news about Thomas xoxo, he's one of my favourite "online people". I wish him all the very best. He's a lovely boy.

 

[moggymay]

That is fab news about T being able to have therapies with his key worker. Makes a big difference I believe as when they spend a lot of time with them they form a kind of emotional attachment that gives them and extra special interest in wanting to help them if that makes sense?

Jacks pre-school key worker taking on some of his speech therapy made a huge difference for us as it meant he got proper help at home and at school from us and her plus we all got the support and help from SLT. Well done Sequeena, glad you are getting some good support

 

[essie0828]

That's great news sequeena! T is so cute. The pics from his 3rd birthday are great. The older he gets the cuter he gets! Love it!

LalaR my daughter was diagnosed with Cerebral Palsy at around 18 months of age. Even though your little guy is similar don't panic that he has CP. Hypotonia is caused by lots of different things, especially in the little guys. It wasn't clear to me that something was wrong until she was between 9 months and a yr old. By then she was behind in her gross motor skills enough to send up red flags. We always had feeding issues and her latch was too weak to breast feed. Ended up doing bottles despite all my efforts to breast feed her. She would feed every 2hrs sometimes going 4 at night. Rarely. She was just getting too tired trying to suck and swallow. It takes a lot of muscle coordination to do those things and we still have trouble with her getting tired while eating. With almost a yr of intense therapy shes walking, learning to communicate with alternative devices and eating well enough to sustain herself in the 30 to 50th percentile for weight. She's a very tall 39inches and 31 lbs at last weigh in. She is delayed in all areas except for her social emotional skills. Oi is she a charmer! She knows how to make all her therapists melt and give in to her. Not to mention me and her dad. She's done great work and is closing the gap on her delays but she will always have muscle control problems. We do 2 one hour sessions of physical therapy, 2 sessions of speech therapy and one session of occupational therapy a week and she has responded well. At her last appointment with the CP clinic team she was diagnosed with Hypotonic Cerebral Palsy. Originally our diagnosis from the first neurologist was diplegic cp mainly compromising her legs. That was at 18months. Her diagnosis evolved as we discovered during her development she was hypotonic (mild to moderate) all over. There are several various types of CP and various degrees of severity. It's not common. About 2 in 1000 kiddos have it. It can be related to a traumatic birth or brain injury at birth or during pregnancy. Some kiddos have strokes and then develop cp. It's usually diagnosed after a brain MRI but can also be diagnosed based on history and evaluation of motor skills. The give away for us was DDs feet. She never put her heels down when trying to stand. At first there were ballerina jokes and comments and it didn't hit home. Then I realized that something wasn't right. Your little guy is still too young to spot signs like that.

 

[sequeena]

Thank you everyone! How are we all?

Thomas had his first occupational therapy today I'm so happy!! He already knows his therapist which really helps she just 'knows' him! She helped him play with dry rice and calmed him down when he got panicky. She played sensory games with him showed me how to do deep touch therapy and more. She understood he needed frequent breaks. He can't stay still for more than a few minutes and he needs to run in circles. It was just fab. I have loads of stuff to read and we're doing oral stuff on Wednesday along with rebound therapy. I also ordered a chewy necklace I just need a t bar for him

 

[essie0828]

Hi DHime. I agree with sequeena. It's hard for "Normal" people to understand kiddos with delays. And I don't know where people get off thinking little kids should be able to sit quietly and control themselves emotionally. Omg people they are not adults. I know hearing a kid cry or whine is irritating but have a little patience for goodness sake. Ok rant over. I get the same problem dear. My DD is almost 2 and a half but is mostly on par with an 18 month old. You just gotta think what would an 18 month old do in this situation and tell everyone else to F off

 

[essie0828]

Thank you everyone! How are we all?

Thomas had his first occupational therapy today I'm so happy!! He already knows his therapist which really helps she just 'knows' him! She helped him play with dry rice and calmed him down when he got panicky. She played sensory games with him showed me how to do deep touch therapy and more. She understood he needed frequent breaks. He can't stay still for more than a few minutes and he needs to run in circles. It was just fab. I have loads of stuff to read and we're doing oral stuff on Wednesday along with rebound therapy. I also ordered a chewy necklace I just need a t bar for him

Omg YAY! I knew u would love it! The chewy necklaces are wonderful for calming and strengthening the mouth. Dry rice, beans, water beads, play dough, shaving cream with hidden bits all that tactile stuff will be amazing. It's hard at first. Baby steps and all that but he's going to respond so well. I just know it.

 

[essie0828]

Does T like deep pressure?