Not knowing

[Mousieme]

I've been reading everyones posts over the last week and this looks like a really good place to be. By the looks of it most here are from the UK?
I'm in a different country and we don't seem to have any forums like this here.
DS is now 20 months old, adorable as anything. At 4 months he started to hold one of his arms back, which then progressed to both arms, then a head tilt. We saw a Paed who then referred DS for Neurotherapy which did him the world of good. Paed said he had GM delays, increased tensor tone, low normal muscle tone and neurological immaturities...whatever that means. He said DS could have SN in learning/behaviour/cognitive etc in the future mild to severe he couldnt tell. He doesnt have CP ...thats all I know. DS is progressing well speech is ok, developing, goes to daycare two days a week. Since he was born gut has said something is wrong. I had rapid IUGR he was so thin and tiny when born. Noise intolerant although that seems to have got better, likes alot of things "just so". I guess I'm here because every day is like a waiting game, I worry endlessly sometimes to the point I dont sleep for weeks, like I'm waiting for something to happen. Is it normal to feel like this? Hope I don't sound neurotic! I wonder is there a rough age things become apparent if DS isn't developing like other kids? I've taught him to sign just in case so he can tell me what he needs. His attention span is limited. Paed said he was happy to see him again for any specific concerns...trouble is there is nothing specific its GUT. I was wondering for those of you who havent got a dx yet, how do you know what to do for your little ones? DS has a few odd physical things but no one else seems to notice...turned in little fingers, has a Y shape at the top of his bottom. Its very cute though ...nearly two years of living with this big question mark ..dont really know how to get around it, any suggestions would be greatly appreciated.

hello mousie and welcome to mumsnet, doesn't matter where you live

Of course it's normal to worry about our dcs, no 1 in the parenting manual that one Speaking from experience, worrying about what the future holds . . . . . . that way madness lies, this is meant with the biggest dollop of kindness I can muster for you, you have to deal with the here and now and the issues you currently have and make the most of enjoying your gorgeous little boy.

A mums gut instinct of course should never be ignored, you know your ds better than anyone. You've mentioned in your post a few concerns, do you think if you wrote a list over the space of a week or so, that would help you to go back to the paed and have something in writing? Does your ds get any physio or ot?

Hi Bigcar
Thankyou for your kind words, thats the hardest thing worrying about the future. I think reading about all the different SN has sent me into info overload which isnt good for the brain LOL. When we went to the Paed a year ago he asked me as a parent of 20 years (I have three elder girls) did I notice a difference, I said yes very much. He can't investigate further if there is nothing specific thats why I basically have to wait. Our doctor said it may just have been muscular, DH agrees, I dont. We don't have any other intervention at the moment DS is walking around and his head tilt has come right with previous neurotherapy. Can you tell me about your little ones?

I have 5 dcs, dd3 was dx just before her second birthday with a genetic syndrome called hypomelanosis of ito. She has a range of things including visual and hearing impairments, physical difficulties, learning difficulties, SaL problems, all sorts really. She's the happiest little girl going and that's what I have to focus on, apart from ds2 who is currently drinking his bath water

My dh and I had a pretty hard time getting our heads round it all, but I think you get to the stage you realise that life is passing you by while you are busy worrying and we weren't as focused on getting the help she needed right then as we should have been and of course enjoying her and the other children.

Your ds sounds great, signing is fab, dd3 is now 4.5 and just starting to learn a few more signs, her current favourite is chocolate. Takes after her mother

Ooohh she sounds adorable. What is SaL? I can identify fully with the worrying its like everything kind of stops. DS is great its just like this huge waiting game, like one day I'll wake up and he may have all these issues but I guess like any SN little one things develop over time. Do you worry about the future, guessing its a normal process.

Hi Mousieme
I'm more of a reader and not usually a poster but have vowed to change that :)
If you have a gut feeling keep asking for tests. Have you seen a neurologist or geneticist?
Our DS1, who has just turned 1 year, failed his 10 week check up due to head lag. That was the beginning of our drama (better word than nightmare ;)...just so cruel how what should be the happiest time of your life turns into the worst...we're slowly coming to terms with DS diagnosis, he always has good days but as parents wanting that perfect baby we have bad and good days.) Anyhoo, we saw a neurologist who thought it was just congenital benign hypotonia but at 6 months we saw a geneticists and DS1 was finally diagnosed with Coffin-Lowry Syndrome. Although it was me that self diagnosed by typing all the unusual features I could see about DS1 into google. And the geneticist confirmed our fears, however it is good to actually have a diagnosis!
So my advice is ask for see the professionals and ask for tests and just do simple google searches.

mousie, I think she is, as are my other dcs, but then I may be just a leeeeettle bit biased SaL, speech and language, sorry Things do develop over time and it gives you a chance to deal with them and get used to them and you can get appropriate treatments/therapies put in place. Your ds will still be the same ds and you will love him just as much whatever happens in the future.

I limit my worrying about the future to about the next 1/2 years, really anything after that is too unpredictable and drives me completely crazy. It's very unlikely dd3 will ever be able to live independently but that's as far as we've got, we can't do anything about it now so what's the point? What I can do now is make sure she is getting all the right therapies and equipment, make sure her school are doing the best job they can and thinking about a change in school place within the next year or so. That way she will be best prepared as she can be for whatever might happen.

I really get what you are saying about the waiting, dd3 is very high risk for epilepsy but I rarely think about it these days, again, one of the things I have no control over. As yummum says, googling can be useful but there is also a good chance that you will scare the crap out of yourself, so if you do, be careful. Remember that to doctors the most interesting cases are the most severe cases and that everything comes in degrees and that you don't always get every sympton on the list.

hello yummum, how's your ds doing

Hi Yum, Bigcar

Yum how old is DS1 now? I understand completely about the googling...worst thing i did. The thing that really worries me is alcohol affects. I found out very late in the first trimester about DS...hence my main worry is if this has affected him. Paed said it could have but wouldnt know till DS develops a little more. Yum, this is why I have no specifics for any other testing as there is no test for this sort of thing. Its all behaviour patterns, learning SN etc. Thats the worst thing I did was google so the future and the guilt is extreme because its possible. Limiting the worries of the future with a time frame sounds like a good idea..because it does drive you crazy. Yum, at the moments DS is doing well but every time he does something I think is unusual I freak. Bigcar....good that things do develop over time, I guess they sort of unfold. I have this image that one day I'll wake up and DS will be doing all these really weird things. I'm guessing both of you have strategies to stay in the here and now to help your little ones. So glad I found this site and the both of you. What sort of daily things do you struggle with?

Hey Muosieme & Bigcar

Am soooo with you bigcar on the time frame thing. I remember just thinking I must try to enjoy his first year while he's a baby and noone will really notice that he isn't as able as other babies or has SN. Now I break it down into 6 month junks. I love to organise and look to the future but having a SN child kind of stops you from doing that cause you just don't know what stage they'll be at when they're 5, 10 or 15 years old. DS is nearly 13 months and is a cheeky wee monkey.
I agree google is bad and to be honest I have stayed away (at request of my DH) apart from trying to find things to help DS whith his hypotonia etc. I don't even go on the Coffin-Lowry site as it just makes it to real and before you know it you keep labelling your baby and not loving them for what they actually are.
If speech is coming on mousieme then that is a positive thing as that is what the geneticist is basing much of DS mental development on we've had lots of dadadas, mamas, ttthhhsss, baaas but whether he can connect that into proper words we just have to wait & see!!!
Please don't blame yourself for alcohol affects I should imagine you'd have to be drikning very heavily for longer for it to affect the baby.
My strategy is to just try and love DS for who he is, i must admit it is harder when I see other babies his age but when I get over consumed with grief, worry for the future and just feel generally sorry for myself I give him a hug and tickle him then his laugh helps me put everything into perspective. Also going back to work and building some normailty back into life has really helped.

Ditto...great to chat to you girlies xxx

Hiya Yum
It sounds as if this whole worry thing is quite normal for parents in regards to future. Completely understand the overwhelming its hard to pull out of it. Regarding alcohol affects unfortanately first trimester is the worst Paed said we just have to wait and see. He said it would show more an kindy age 3 upwards I'm guessing. Thank you for your encouragement DS's speech is coming along some words hard to understand but along with signing he seems to be able to communicate his needs well. What stage is your little one at re movement? DS had hypotonia also but neurotherapy helped alot with that so he's walking around now. A little late with GMotor but doing well.

Hi Mousieme
Sorry it's taken me ages to get back to you, wish this site was like facebook and updated you when someone replies etc. Anyway yup I guess with a "normal" baby you kind of know what the future holds, but then again nobody knows and something awful could happen to a normal child leaving them with a brain injury, paralysed etc - sorry to sound so morbid just trying to give light to the tunnel. Signing sounds good, we've been referred to the speech therapist so just awaiting app but sometimes the NHS is slow and they need lots of chasing! DS rolls all over the place and sits but still has bad core hypotonia so sits with a curved back. Did you feel that neurotherapy worked? This is something that I hadn't looked into but will add it to my list (along with theratogs) for the consultant and physiotherapist. He is good at holding his cup, finger foods and feeding himself but not as good as other babies his age! Keep me posted on how you're getting on.
Kx

Hi mousieme,
My ds3 15months is currently undiagnosed and its been driving me crazy for so many reasons, one of the main ones being that a lot of friends/family keep saying that he is just slow developing (like NT babies can be)and they dont seem to listen that its not just hes a few months behind.
He has severe global developemental delay, microcephaly, poor growth, sleep problems, sensory issues, partially sighted, hole in the heart, stiff muscles, hernias, undescended testes along with some physical problems. All this along with he cant sit unaided,crawl or walk, feeding problems-seeing SALT, doesnt babble.
I know if I have a dx it wont change anything for ds or me but it will help other people understand whats wrong.
Consultant has doen tests and no longer has any answers. The only options to get answers are MRI scan booked for this week or genesitist (sp) which is a really long wait- been waiting since march.
I hate not knowing how the future will pan out for ds and us as a family, but I think im finding a few things hard to come to terms with about it too.
Good luck with your dx_ I agree keep pushing for tests etc. keep us updated

Hi Yum
Trying to look at the bigger picture and agree that no one really knows what the future holds in any regard. Soooo awesome your DS can get around..sitting fantastic as well! that was one of DS's main problems.Is your DS currently having physio or on the wait list? How long is the wait in the UK? After reading all the posts here it seems to be very long but I find some of the things confusing to do with tribunals etc dont know what that is. I found neurotherapy fantastic. Hypotonia was mainly in the upper body for DS and within four months they had him sitting...with a head lop but hell he was still upright :o
Thankyou for the insight regarding speech DS seems to be doing ok ...just that gut instinct, well you know what I. Who looks after little one while you work? DH stays at home while I bring in the bacon, I won't mention the state of the house ! Take care would love to hear more about your family. Thankyou for your reply too...tis nice to talk

Hiya imawigglyworm

Nice to meet you and your little one. 21 months awesome same age as DS. How does it come about that your DS has GDD and all the other worries and no dx? I guess for me a dx means I can deal with something rather than a question mark, but that's what I have so I just teach DS all I can and hope somehow it makes a difference and worry endlessly. He's recently started to react when I take him out sometimes freaks and screams, but not consistently only sometimes so I dont know if its sensory or normal age as older DC's all girls. How does your DS sleep? Mine wakes often and fidgets consistently. There are a few physical things that puzzle me but no one seems concerned. He has a strange looking Y shaped indent above his cute little bum, receded chin, massive overbite, other little things I notice.How do you know how to help your DS if they don't know whats wrong? Understand fully about the future and coming to terms with things. How much longer will you need to wait for the MRI? Please let us know how you are doing...would love to know more. Take good care

My son goes through phases really. for weeks he will take hours to settle, but sleep until 5-6am. But atm he is going straight to sleep but constantly waking during the night. Its something im really struggling with cause he is still in our room while we are waiting to be rehoused and DH is a really heavy sleeper so generally doesnt wake up. Hes just been given some medication to help but it doesnt seem to be doing anything but making him more agitated at night.
My Ds doesnt babble/talk/sign at all and doesnt show signs of unerstanding what im saying/signing yet. Hes 15months and was told by speech therapist his communication level is approx 6months so im hoping he will start understanding soon. cause I find it hard knowing if hes taking anything in or not.
We have the MRI this wednesday (had a 4 month wait) so fingers crossed we will get some answers from that.
Is there anyway you could ask for a second opinion from anyone? I completely beleive in mothers gut instinct. I had to really push to get someone to look at DS. Initial worries were with his sight (hes recently dx as partially sighted after almost 1yr of tests) and it all spiraled from there.

Hi wigglyworm
Sorry was late when i read your post regarding your DS age. Understand the night times DS is in with me too, DH sleeps in DD3's room as he is a light sleeper. I'm guessing without a dx you can't get any sort of help like respite? So pleased the MRI is so soon do let me know how you get on. What medication was DS given?

lol no worries bout the age, im completely sleep deprived atm and am doing/saying alsorts wrong.
I havent asked about respite, mainly because he is so clingy, if its not mummy its not good enough! lol Its sweet really but also so demanding.
I love him so much but sometimes I wonder if I will cope, my older 2 Ds's 3&6yrs dont get as much attention as they should. Ds3 has for me difficult habits- like being so clingy& head abnging etc. But I guess youo just find a way to cope.
He has been given melatonion (a hormone drug) to regulate sleep.I tried it last night but it didnt seem to work he was very grizzly all night more so than usual. I didnt give it to him tonight as he had a nasty case of diarhhoea and wasnt sure if it was the meds. but will give it a go tomorrow.

Is there someone here who can guide you a little with the melatonion? Clingy is very difficult and can understand this must wear you down. Will DS go to DH at all? I've taken to stashing dummies in the bed so when DS wakes I stick another one in, never remembering the next day till I find 3 or 4 in the cot :) I find the only way I cope is day by day. The worst thing I did was google now I have a whole pile of information I can't cope with, and talking/listening. Do you get a little time for you?

ds is now 5 and finally now have the long waited appointment to see genetics .

To see if he has a one dx fits all his problems or just been very unlucky

I had to fight for long time to convince them he was not just lazy was delayed in all his skills .Then we got the catch all GDD tag now have that and cp tag but still does not cover everything and am sick of them saying well with GDD they might catch up

Think the proffesionals are ones with head in the sand

Hiya roundthebend4
Sounds as if this has been a long fight for you. Can you tell me more about your DS. Definately some of them have their heads buried, I was lucky to have an upfront somewhat direct Paed. Can't imagine waiting that long, nearly two years is long enough.

Ds has low muscle tone in limbs and trunk ,severe hypermoblity verbal and oral dyspraxia means can only make noun sounds

Has slight hearing loss bilaterial squint when tired is very small legs don't match. His body size small penis undescended testicales,very narrow and high palate which when older going to require major dental work
they dx

him with Gdd then recentley cp but even neuro agress that does not really seem to be cause of most his problems .he scored below 1% for fin and gross motor control compared to nt dc

sat up at 13 months walked at 3 but even now struggles so uses wheelchair

ATM h

hi mousieme, We also don't live in the UK and I have a 7 month old who has a diagnosis of Tuberous Sclerosis Complex. Our son's symptoms are seizures caused by growths on the brain and the prognosis is very unclear from mild to very severe retardation, autism, behavioural difficulties, etc. Although we have a diagnosis, unfortunately the diagnosis means we don't really know where we will end up, so like you we endlessly wonder what will happen to our little boy. We are told to enjoy each and every day with him and treat him like any other. We do as much as we can, but it doesn't stop the worry. His seizures are currently not being controlled, although they are mild, I find it difficult and each time he has one I "google" to try and read up more about the disease, every case is different, so I don't know why I do it.
Anyway, I just wanted to say you aren't alone with the worry and I can see from the other posters that you probably already know that.

Your child sounds a lot like my DD. Can you tell me how your DS is now? I'd love to hear from you.

That message is for Mousieme

You might be better sending a private message as this will send an email rather than languish here. Good luck