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Rceived letter from DS1's consultant, made me upset seein it in black & white.......

8 replies

caitlinnjacksmummy · 23/04/2008 12:17

Hey, I need help understanding this letter from paed, pls help, long post, gonna type out whol letter so pls bear with me, ok, here goes......

I thought I would write this letter to you today to summarise the information which I gave to you today and also results of investigatins we have done on Jack so far.

Jack is now 13 mnths of age and he has suffered from epilepsy since age of 6-8 mnths(actually few weeks old we noticed it!!). At the same time he also showed evidence of delayed development, mainly in his head control, his attention(nonsense, he is always attentive!!!) and development of communication and speech, (again he is only 13 and a half months ....).

Over the past 6 mnths he has had difficulty in controlling seizures, occuring about 2-3 times a day, but can go a few days with none. His seizures have changed over the past 6 mnths from what we call infantile spasms where whole body stiffens for few secs to more prolonged seizures associated with staring, unresponsiveness, fisted hands &tense body lasting 10-20 mins and sometimes as long as 30 mins(40 actually).

Initially we treated him with nitrazepam but with little effect. We added epilim &he reached a dose of 4ml twice a day & I commenced him on lamotrigine today.

From the examination point of view he has bn growing in weight reasonably well & he is about 10kgs. His head circumference seems t have dropped in it's growth and at the beginning when I saw him at age 5 mnths his head circumference was 42.0cms which is between the 10th and 50th percentile. This has now dropped to the 3rd centile and his most recent head circumference was 44.8cms. Although it is growing it is growing slower than one would expect, and the end resultant is that of a smaller head than one woul expect for his age (my worry is will ths b noticeable as he gets older?!).

We did a 24 hr EEG recording which did show abnormalities coming from both temporal lobes.
He recently had an MRI scan of the brain & i gave results of this to you today
This has shown abnormalities in bth temporal lobes which is consistent with EEG findings. The rest of the brain did not show any specific abnormalities.

I explained to you that thse findings and also the fact that he is nw showing poor growth & development of his brain making his head smaller than usual & the difficulty t control epilepsy as well as the delay in development suggests that the brain lesion is responsible for all the probs. It's very difficult t tell from the lesion why it's happened but commonly it's unexplainable due t an incident happening in v early weeks of pregnancy or could b due t genetic miss programming.

We talked about the outlook for his development in the future and I felt that with combination of all probs which i have mentioned above it is v likely that he will continue t b behind children of his age with the skills he will need t acquire. It's v difficult t tell exactly how delayed he will be but time will tell & a longer period of observation will b helpful.

Can anyone help me out here, in easier terms and reassurance....& again I apologise for massssssssive post xxxxxx

OP posts:
Scootergrrrl · 23/04/2008 12:25

I think it means your wee boy has a brain lesion in part of his brain which is causing the problems he is having. They don't know what caused it but think it'll mean he'll carry on being behind other children his age in terms of development but that they want to carry on keeping an eye on him.
Hope that helps - shout out if you need any more help and try to keep positive.

yurt1 · 23/04/2008 13:50

Its really hard when you just have to 'watch and wait and see what happens'

How often do you get check ups? Do you get portage or anything positive like that?

magso · 23/04/2008 14:25

Are there any particular phrases or words I can help with? Scootergirl has done an excellent job.
Its hard to see things in black and white even if it is vague. Babies brains are all so unique and more adaptable than later in childhood so it is hard to predict the future. (hug to you and Jack)

caitlinnjacksmummy · 23/04/2008 17:31

Thanku, yeah waiting is such a bugger, but does this necessarily mean Jack will be mentally impaired? So far i see no signs of this, he has a temper, typical man
knows his name,laughs kisses me, pulls himself along(this is recent), plays with toys and couldn't 3 mnths ago, and rolls I live in scotland and portage don't cover us sadly , have applied dla 8 weeks ago. is with decision maker now so hoping i will find out real soon........xxxxx

OP posts:
caitlinnjacksmummy · 23/04/2008 17:32

get checkups every 2 weeks, no more than 3 xxxxx

OP posts:
mm22bys · 23/04/2008 17:39

Hi,

Your DS sounds similar to my DS2, he is developmentally delayed, but tests to date are normal, and there have been no known incidents that would explain his problems.

He has seen a heap of specialists, and some are more positive than others. He also has seen a range of therapists too. He is progressing, and with that, we are cautiously optimistic.

Your DS is still very young, and it sounds like he is doing a lot that he wasn't doing even only a few months ago.

A lot of it is wait and see, but it is hard, especially when there is no definite diagnosis.

All the best,

sarah293 · 23/04/2008 18:47

This reply has been deleted

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MommyUpNorth · 26/04/2008 11:23

Just noticed your message about the portage not being available in Scotland. We're in Scotland as well, and we have a lovely 'play therapist' who comes in once a week for an hour or so to work on various things with ds (16 months) through play. I believe she's a nursery nurse, and we were referred through our HV. I think up here there should be someone called an early support nursery coordinater (or something along those lines) who is supposed to come and work with the SN children and get them ready for school. Unfortunately up here the post is vacant and there is no one applying, so we don't have that service, but if there was someone then there is that as well.

Hope that you are able to find someone like this as our lady is just brilliant!

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