Advice About Development Delay/Neuro Appointment

[May.Baby.x]

Hello.

Im new here and looking for some advice..

My son is 6 months old and at 4+1/2months was diagnosed with having Torticollis, and we were referred to physio (private to cut waiting times!)

At our first physio appointment, the physio felt our sons Torticollis was more a preference to face the left, rather than being unable to turn to the right.
He also would keep his hands fisted, not use his right arm at all and hold his right leg up in the air (in a 'frog' shape with he's foot flat to his left knee - if you get that!) whilst weightbaring on the left. He's right leg is also 0.5 shorter than his left.

His development was slightly slow but she felt that we should monitor him, and seek an orthopeadic view of his right leg.
Since continuing with physio he will now use his right arm, although the fisting remains. Also she has now noticed that the muscels on the right side of his back are not building up indicating he's not using them and that we should seek a neuro opinion sooner.
My GP did refer him, but thought that we should wait another 6months to see how far behind he fell. He also felt like the physio that it was possibly a form of Cerebal Palsy.

He is a very social baby and smiles at everyone. He can roll from front to back 1 side (apparently he's going top heavy rather than rolling) and is no where near sitting up.

My question to anyone who has been through the same sort of scenerio is how soon did you get a diagnosis? Im worried that when we go to the neuro appointment they are going to tell me to wait as he isnt serveley delayed, even though our physio is saying he needs NHS care as early as possible.
Also what am i to expect at our first appointment? Does a diagnosis involving these symptoms always require some form of scan? Also can he get NHS physio before a diagnosis?

Many thanks to anyone who can offer any advice! xxx

 

[AndyyMay]

Hey!

I'm Not In Exactly the same scenario but heres a little bit about my daughter.

My Daughter Development was also caught at the same time and has been having physio (She's got hypertonia) ,She had a curved spine,tight next muscle and some other problems

She's ten months now,she's started rolling,Is no were near sitting up,and can't crawl.

But until her imbalance of muscles in her back straightens out,And her neck muscle losen they've basically told me she won't be able to sit up-_-

At 7 Months - When They thought She had a neurological problem.She had a MRI and was put under general anethetic,They took about an hour to do the scan,then she was kept in a room to keep an eye on her so there was no reactions.

A Few Weeks Later,we Had the results but no dignostic.

Due To The MRI,She got reffered to a genetic team,We could be looking at ten years before we find out what the problems could be.

My Advice Is,If He needs the NHS care,Then push for it
The earlier he gets on with physio and thing like that the better it'll help.

With My Daughters First App,We talking through the past few months of problems and development.
There was no dignosis,We were told she would have an MRI and Then go from the results.

Sorry I'm Not Much Help Hun,And What ive Written Might Not Be The Sorta Thing Your Looking For.
But I Hope Everything works out for your LO

 

[May.Baby.x]

Thanks for replying and for all the info!

They have told me the same thing in reguards to his back muscles, which is why his physio felt it would be pointless to wait. He was also born with an extra toe, which they won't remove until he's one because of the anesetic risks, which is why i wondered if they done scans at this age.

It must be so hard to be told you may not have a diagnosis for that amount of time. Its driving me mad the last 2months with the maybe this, and maybe thats. I hope you get some answers soon and thanks again for the info! xx

 

[mummy3]

Similar thing here too. My daughter is just about 8 months and has physio for hypertonicity(was hypo but progressively went hyper) she has a neurologist, geneticist, developmental pediatrician and a GI ped! Shes developmentally at the 3m stage, we have some front to back rolling but not the other way, no sitting, shes having an MRI on the 22nd nov. The GI doc is for her failure to thrive to help her gain weight.

We're in the states and have private insurance so things move pretty fast That said it wont be overnight. I hope you ladies get answers and support quickly

 

[flossyboo]

hi there

my son is now 10 months and has had a busy time since he was born!!! he has various medical issues including bilateral talipes (clubfeet), delayed visual maturation, kidney reflux and some neurological anomalies (which put him at risk of epilepsy & poss learning or physical disabilities) could write a looonnnggggg story about all the appts and consultants he has, however the best thing that we ever did was go privately to opthamology when he was 16 weeks ( as his vision clearly wasnt as it should be). the opthamologist referred him for an mri on the nhs at this point which massively cut down the wait that we would have had otherwise. we also considered going to a private paed but didnt need to in the end. you mentionned that you have gone privately to physio - would you consider going private to a paed or neuro? i know not everyone agrees with doing this but to be honest we would have done whatever it took!!!

the other advice i would give is to keep hassling - find out who the consulatants secretaries are and be super nice to them!!!! i have managed to get cancellation appts because secs have known me and prob want me to get off their case lol!!!

my wee one is also having physio and was before any diagnosis was made - i self referred before my health visitor saw him and they were happy to accept the referral based on the info i gave them - maybe try ringing nhs physio and see what they say

at the first neuro appt they will take a detailed case history, take weights/measurements etc, prob take bloods for chromosomal & meatbloic testing, look at reflexes and how your son presents and then im guessing they are highly likely to refer for mri (which will be another wait....... )

not sure whether that all helps - hope it has & hope you get some answers soon
x

 

[lilbumpblue]

Hey hunni hope you get some answers soon! My lb is under numerous consultants now...Peaditric consultant for failure to thrive which is where this all began, he had bloods taken and came back that he had a problem with his kidneys, turns out he has kidney reflux and cysts on his kidneys so see a nephrologist for this he now also sees the gastro consultant as he has this had a peg gastrostomy fitted to aid his weight gain....he is 13 months and weighs 14lb 5oz! x

 

[May.Baby.x]

hi there

my son is now 10 months and has had a busy time since he was born!!! he has various medical issues including bilateral talipes (clubfeet), delayed visual maturation, kidney reflux and some neurological anomalies (which put him at risk of epilepsy & poss learning or physical disabilities) could write a looonnnggggg story about all the appts and consultants he has, however the best thing that we ever did was go privately to opthamology when he was 16 weeks ( as his vision clearly wasnt as it should be). the opthamologist referred him for an mri on the nhs at this point which massively cut down the wait that we would have had otherwise. we also considered going to a private paed but didnt need to in the end. you mentionned that you have gone privately to physio - would you consider going private to a paed or neuro? i know not everyone agrees with doing this but to be honest we would have done whatever it took!!!

the other advice i would give is to keep hassling - find out who the consulatants secretaries are and be super nice to them!!!! i have managed to get cancellation appts because secs have known me and prob want me to get off their case lol!!!

my wee one is also having physio and was before any diagnosis was made - i self referred before my health visitor saw him and they were happy to accept the referral based on the info i gave them - maybe try ringing nhs physio and see what they say

at the first neuro appt they will take a detailed case history, take weights/measurements etc, prob take bloods for chromosomal & meatbloic testing, look at reflexes and how your son presents and then im guessing they are highly likely to refer for mri (which will be another wait....... )

not sure whether that all helps - hope it has & hope you get some answers soon
x

Thanks for replying.

Yeh we went to a private paed at Harley St as my GP said he didnt have
Torticollis.. And then got diagnosed with it at Harley St. Then we went on to private physio from there, as we were told we'd only need 3appointments and it would resolve in 6-8wks. Then it was at his first physio appointment she picked up on all the problems i was seeing and more.. So it was abit disappointing that the doctor missed everything!
We did look at going to a private neuro, but it was 400 for the consultation, and then any tests on top, and luckily we got our NHS appointment for 22nd Nov, so not to long to wait. And ive just had a call today to make his NHS physio appointment for this week, but ill be quite sad to leave his private one as she is absoloutly brilliant.

If they do refer him for an MRI and its long, i will definatly go private for it. I no its terrible really to pay to jump the que, but i just feel like i cant rest until i no whats going on.

Do you now have a diagnosis for your son? xxx

 

[May.Baby.x]

Hey hunni hope you get some answers soon! My lb is under numerous consultants now...Peaditric consultant for failure to thrive which is where this all began, he had bloods taken and came back that he had a problem with his kidneys, turns out he has kidney reflux and cysts on his kidneys so see a nephrologist for this he now also sees the gastro consultant as he has this had a peg gastrostomy fitted to aid his weight gain....he is 13 months and weighs 14lb 5oz! x

Thanks.

Oh wow, Spencer weighed 16lb10 when we saw the paed at 41/2months!
Aww he must be so tiny, bless his heart!
I hope he's doing well. xxx

 

[flossyboo]

thats great that you have an appt through toms mri showed a thing called grey matter heterotropia - basically when his brain was developing some of the cells went to the wrong place. This puts him at higher risk of epilepsy & learning disabilities but its all a bit wait and see. developmentally hes holding his own - hes 10 months, sits well, rolls everywhere and props himself up well on his arms. i do have other concerns though and have a very strong feeling that he will have a lot of difficulties - saying that though he is a lovely baby and we are really blessed

hes being well monitored by the multi-disciplinary team which is great...hardest thing is keeping track of all the appts!!!!

do let us know who the appt on 22nd goes - good luck
x

 

[May.Baby.x]

thats great that you have an appt through toms mri showed a thing called grey matter heterotropia - basically when his brain was developing some of the cells went to the wrong place. This puts him at higher risk of epilepsy & learning disabilities but its all a bit wait and see. developmentally hes holding his own - hes 10 months, sits well, rolls everywhere and props himself up well on his arms. i do have other concerns though and have a very strong feeling that he will have a lot of difficulties - saying that though he is a lovely baby and we are really blessed

hes being well monitored by the multi-disciplinary team which is great...hardest thing is keeping track of all the appts!!!!

do let us know who the appt on 22nd goes - good luck
x

Aww thats brilliant that his doing so well despite the issue.

We managed to get an NHS appointment today and was really pleased with his physiotherapist. And to top it he 'rolled' back to front for the 1st time at the appointment! Technically threw his hips over, and back-arched round, but physio said any movement pattern is better than no movement at all. xx

 

[May.Baby.x]

We went to our neuro appointment yesterday and did get a diagnosis of cerebral palsy. The consultant thinks right side hemiplegia, whereas physio think all 4 limbs and his trunk are effected. We are having and MRI to see the severity. Also being referred onto a heart doctor as his 'innocent murmur' which gp said disappeared at 4 months is infact there so they're gonna do an echo just to check it. Xx

 

[flossyboo]

hi there-just came on to see if youd updated how do you feel about the diagnosis? did they give any indication of poss causes? hope you dont have to wait too long for the mri and that things keep moving forward for you

x

 

[May.Baby.x]

hi there-just came on to see if youd updated how do you feel about the diagnosis? did they give any indication of poss causes? hope you dont have to wait too long for the mri and that things keep moving forward for you

x

Aww thanks for remembering! Even my friends didnt! Great help they are! Lol.

I knew he had 'something' from birth, even before i noticed problems which was strange, but since seeing the 2 diff physios i had already accepted that we were heading towards a cerebal palsy dx.
I personally thing its more than just right side, the right is definatly worse, as he was at one point completely left handed, but his left arm and leg are also stiff and he fists his left hand. But im guessing the MRI will reveal everything? His physio is also concentrating on his trunk/stomach... But consultant didnt say anything about that so i duno if that would be effected if it was only right sided? She did say that sometimes if it was mild CP it wouldnt show on an MRI, but they are expecting to see damage on his? So i duno what to take from that? His consultant was absoloutly lovely though, so very pleased with that!
Yeh hoping the MRI doesnt take to long, although i am thinking of postponing until he is reviewed by the heart dr, which i think would be common sense of the hospital to get that appointment before he goes under a GA, but who noes?
His consultant said that it was possibly caused by his traumatic birth or as a complication from my obstetric cholestasis. Personally i think it was the birth as during pregnancy there was no evidence of him being in distress, and my waters were also clear when broken, but again who noes?
The thing im finding hardest at the moment is that they cant tell you any predictions in terms of his capibility, so were still really facing the future with our eyes shut. Ive decided to expect the worst case scenrio and anything we get on top is a bonus. xxx

 

[lilbumpblue]

I hadnt forgotten you both either hun! Glad you have a diagnosis now but i know what you mean on the not knowing about the future front...we r the same really with JAmes' kidneys as we just dont know what is going to happen. Will the cyst go? Will he need a transplant? Will h get a transplant? its just awful and is constantly going around in my head! So i understand what you mean...if you ever want to pm me just do so! xxx

 

[flossyboo]

hi there-just came on to see if youd updated how do you feel about the diagnosis? did they give any indication of poss causes? hope you dont have to wait too long for the mri and that things keep moving forward for you

x

Aww thanks for remembering! Even my friends didnt! Great help they are! Lol.

I knew he had 'something' from birth, even before i noticed problems which was strange, but since seeing the 2 diff physios i had already accepted that we were heading towards a cerebal palsy dx.
I personally thing its more than just right side, the right is definatly worse, as he was at one point completely left handed, but his left arm and leg are also stiff and he fists his left hand. But im guessing the MRI will reveal everything? His physio is also concentrating on his trunk/stomach... But consultant didnt say anything about that so i duno if that would be effected if it was only right sided? She did say that sometimes if it was mild CP it wouldnt show on an MRI, but they are expecting to see damage on his? So i duno what to take from that? His consultant was absoloutly lovely though, so very pleased with that!
Yeh hoping the MRI doesnt take to long, although i am thinking of postponing until he is reviewed by the heart dr, which i think would be common sense of the hospital to get that appointment before he goes under a GA, but who noes?
His consultant said that it was possibly caused by his traumatic birth or as a complication from my obstetric cholestasis. Personally i think it was the birth as during pregnancy there was no evidence of him being in distress, and my waters were also clear when broken, but again who noes?
The thing im finding hardest at the moment is that they cant tell you any predictions in terms of his capibility, so were still really facing the future with our eyes shut. Ive decided to expect the worst case scenrio and anything we get on top is a bonus. xxx

Hi there
At least you have a good consultant and hes seeing physio - hes still so young and early intervention makes such a difference. i had a horrendous time when having my daughter (shes now 8)- ended up having an emergency c/s under GA. she started fitting the next day and was in NICU for a week. Fortunately the siezures were quickly controlled and she was discharged when 1 week old with no meds etc being needed. She had very high tone in her left arm and clawed her toes. We had physio from when she was tiny and the progress was amazing - she was discharged from physio at 1 year and hit all milestones bang on. She had an mri which did show some damage but the brain is so plastic at that stage new neural pathways can be formed. She was never formally diagnosed with CP but i reckon we were about 30 seconds from much bigger probs. Academically shes fine - she does have some higher level diffs but Im an SLT so prob pick up on things that others might not!!!!

Anyway thats a bit of a ramble - what Im trying to say is there is no way of knowing how our kids will turn out whether they have identified neurological probs or not. Just because a child seems to be developing 'normally' there is no guarantee that all will turn out normally. I guess we almost have an advantage in knowing that things might not be plain sailing (not sure im making much sense lol!!!). As toms neurologist said they see kids with massive neurological abnormalities who develop normally and they see kids with apparently normal brains who have lots of probs hence the whole wait and see business!! I *think* i have accepted where we are with tom and it does mean that when he makes progress or does something new im extra proud

blah blah bit of a fri night ramble!!! am off for some wine!!!!

keep us updated
x