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Follow up from previous threads - DS today diagnosed with Hemiplegia.

(25 Posts)
fnm Fri 12-Jun-09 21:56:28

Well, what can i say, firstly a big big thank you to all who has given me advice (especially hangingbellyofbabylon)it provided me for what could have been one of the worst days of my life!!!

Anyhow, the peadiatrition has diagnosed him with Mild hemiplegia, she feels optimistic though as he is doing really well and is reaching most of his milestones.
She is reffering him for speach therapy, physio therapy and an MRI. She thinks as his apgar score was good it was more likley to have happened well before the birth but im not sure if we will ever find out. I still feel sick and i dont really think its hit me yet but mostly i am releived we have a diagnoses and steps are in place to go forward. She explained about behaviour and how in the future he might be more 'naughty' than other children but i guess we dont really know what the future holds until we get there.

Once again thanks for the support and no doubt ill be speaking to you all lots and lots in the near future.

I am off to finish my packing now, go away in the moring for a week on our first family holiday.

I will be back on when we get back, probably with many many many more questions to put to you loveley people,

TotalChaos Fri 12-Jun-09 22:00:25

hello, and have a hug, even if you are expecting it, getting a diagnosis is always a shock. be prepared as well to find it a bit upsetting when you get a written letter/report back seeing it all in black and white. Hope that all the therapies get put in place soon, and that you enjoy your holiday.

fnm Fri 12-Jun-09 22:08:30

Thank you totalchaos, i hadnt thought about that sad how long do you have to wait for the written report?
She said the MRI wouldnt be for about 4 months as they are currently moving hospitals in our area (manchester) so it may take a while, think it will give me time to prepare myself though, if ever you can prepare for things like that hmm

TotalChaos Fri 12-Jun-09 22:14:01

it usually takes a couple of weeks at least for the report to get produced, typed, posted out etc. PITA about the timing re:hospital move and the MRI scan.

mamof3 Fri 12-Jun-09 22:21:57

hiya, i know wat ur gong through ,
my son josh is 6 and has mild hemiplegia.
how old is ur son ?

fnm Fri 12-Jun-09 23:14:42

Hi mamof3, my DS is 17 months, it became aparrent when he was about 8 months but its been a long wait for this appointment.

How is your son now? my ds is right hemi. does it get any better? have you any tips or advice good or bad?

as i say iam away for a week after tonight but would be good to speak to you on my return. i will update this post to look for you.

fnm Sun 21-Jun-09 15:16:20

Back from our holidays, in a way it was good timing as we havnt really had time to dwell on the sadness of it all if that makes any sense, but i am just trying to think of the positives rather than the negatatives of it all.

Anyhow, can anyone help with info re the MRI?
What does/doesnt it show? are there any side eeffects?

Mamof3, i am aware all cases are different but how is your son now, has physio helped much? did he have an mri? does he have speach or behaviour problems? sorry to be nosey blush

does anyone have any advice re the drooling, as his right side of hhis mouth is a little lower than his left we have found out thats causing the drooling, which was a bit of a shock as we thought he was just a bit of a dribbler with teething. but then again, it has always been constant, must go through 6 bib changes and 3 top changes a day.

Hangingbellyofbabylon Sun 21-Jun-09 23:56:17

Hi, I'm really sorry I didn't see your message before now. I'm pleased you have some answers but sending hugs because I know that by now the shock will have really kicked in. Have you visited Hemihelp yet? The forum there is lovely and very friendly and the whole website very useful, much easier to use than the Scope website actually. I'd recommend joining Hemihelp as well, the magazine they send out is excellent.

My dd had an MRI at around 20 months, it was no where near as bad as I thought it would be. She had sedation and not a general and the whole thing was quick and easy. To a certain degree they can tell from the results of the MRI when the damage to the brain happened - not to pinpoint it to a certain day or anything but certain types of damage occur at different periods in the pregnancy. For example, they could tell from my dd's damage that the 'insult' (that's the official term, weird I know) happened at some point in the few weeks before birth but we don't if it was a couple of weeks or a couple of minutes. Her MRI also showed that there was damage on both sides of the brain which changed her diagnosis from hemiplegia to diplegia. I do know as well that from the type of brain 'insult' they can to a degree predict the way the hemiplegia might affect the child, for example a particular type of damage is often accompanied by epilepsy, others indicate more problems with the arm than the leg. Sorry if I have over-whelmed you with info blush - I'm one of those have to know everything parents. There's a book for sale here that is aimed at medical professionals but is also quite understandable and really interesting.

I haven't had any experience of dribbling but I think there are some drugs that could help and I know there are some people on Hemihelp with experience of it all.

I think you've done really well so far and so has your lovely little boy, tell me to shut up if I have gone on too much! but feel free to ask any questions I might be able to help with as well. smile.

Hangingbellyofbabylon Sun 21-Jun-09 23:57:38

forgot to say that if you Facebook there's a friendly hemihelp group on there as well. smile

fnm Mon 22-Jun-09 22:53:21

Hi HBOB, thank you for replying, no you havnt overwhelmed at all, tbh - the more info i can get the better.

There is some good advice there and its made me feel a bit better about the mri.

I havnt joined hemihelp yet, i have been browsing the forum and looking at all kinds of stuff but i kind of think i am too much of an 'outsider' to join blush, i know thats sounds completley stupid but i guess i havnt quite come to terms with it all yet, and when i do really think about it and feel like im getting upset i try and just think of the positives, suppose all the tears will come soon enough.

sorry if i sound daft but will my ds now be classed as disabled/having a disability?

Can i ask if your DD has any behavoiur problems or speach problems that is associated with the diplegia?

Thank you again for the support and i will look into getting that book, i myself am one of those need to know everything kind of mums, especially when it comes to the hemiplegia.

pickyvic Mon 22-Jun-09 23:33:53

hi - just wanted to say my lad had this very severely after meningitus. with OT weekly it really really helped. there is hope! take care. x

HairyMaclary Tue 23-Jun-09 08:08:01

Hi fnm, my DS who is now 4.3 has diplegia rather than hemiplegia but I would second the Hemihelp. I get their newsletters second hand from friends and they are great! HBOB has explained well about the MRI, my Ds was born prematurely and his brain insult happened shortly after birth, between day 0 and day 5. His MRI happened under a general and was not a problem (although it is not nice seeing your DC go under).

With regards to drooling - DS has always drooled and it is worse when he is concentrating. From the age of about 2.5 we have taught him to 'suck it in' using the word prompt 'swallow'. That has helped a lot in not getting wet tops etc but we have just started a fantastic speech therapy called "Talk Tools' which is provided by our SALT. This aims to strengthen the muscles in his mouth so that his chewing is better, the clarity of his speech is better and that it helps his dribbling. He has only been on it for a couple of months but is making noticeable progress, especially as it's great fun! This does require weekly input from a Talk Tools trained SALT and we are very lucky to have this in our area but I know that this is unusual. I would probably wait for a bit but if you feel that, as in our case, the language is all there but the clarity is not, or that the drooling is becoming a social problem, the I would push for it.

Hope this helps!

PheasantPlucker Tue 23-Jun-09 09:09:32

HBOB I have just seen your post re FB group for Hemihelp. Which one is best - I seem to have found 3!!

Hemihelp have been a great help with dd1 (who is now dxed as having diplegia, although she has very little use of her left hand and arm too)


Hangingbellyofbabylon Tue 23-Jun-09 22:01:30

Hi, the facebook group that seems to be the 'official' one is the one I use most - it's called 'HemiHelp - A facebook group for people affected by Hemiplegia'.

fnm Wed 24-Jun-09 13:52:23

Thank you all for the advice and tips, its good to know things can be done and how well your dcs have come on.

As for hemi help, iwill be joining, i am on facebook so will look that up.

once again a big thank you, you have all made what was a very unknown issue (to me) become a lot more understandable smile

PheasantPlucker Wed 24-Jun-09 16:23:54

Thanks HBOB I shall head off and join

PheasantPlucker Wed 24-Jun-09 16:30:18

OK Have requested to join, so will wait to be accepted. I used to post on their board a while back, but less so now (mainly because dd has a load of additional dxs now too) Thanks again.

fnm Fri 26-Jun-09 14:51:11

Just wanted to say i have joined facebook group but waiting for acceptance and have joined hemihelp - my pack came this morning and think its fab. Although i got a lttle teary reading through things, its good to know so much info and help is out there.

thank you all for the recommendation.
i will be posting soon on hemihelp.

PheasantPlucker Fri 26-Jun-09 16:02:50

Still waiting for acceptance!!!

Hangingbellyofbabylon Fri 26-Jun-09 16:06:54

well done fnm, I'll see you on hemihelp [ssh.. don't really use any other message boards other than mumsnet!] p.s - I'm jenkey on hemihelp and have left a message on the facebook group so you can find me if you want

Hangingbellyofbabylon Fri 26-Jun-09 16:07:44

no idea why they're taking so long. I'm sure you haven't been black-balled though wink

PheasantPlucker Fri 26-Jun-09 16:08:48

Just fnm, or can you speak to me too??!

PheasantPlucker Fri 26-Jun-09 19:33:30

Oh no - first I wait for ever to (perhaps) be accepted on the group.....then no-one talks to me! grin

Hangingbellyofbabylon Fri 26-Jun-09 22:22:49

duh! I'll talk to anyone! wink

PheasantPlucker Fri 26-Jun-09 23:26:50

I really think I have been blackballed - still no answer, and now I can't even call the FB group up...... shock

On the website I am on as a proper name, and joined quite early, so a low member number. But it's a while since I have been on there.

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