Great Ormond Street Hospital

[nathollyandmatthew]

hello my son is 13 months old and has epilepsy he has his first app on thursday 11th august at the neurology clinic and im relaly not sure what to expect from it

its a consulation app im nto sure what tehy will ask us or what i shoudl ask them, silly i know, but all i think of is how long will he have this for, and they wont know the answer to that so im abit lost

has anyone here been to GOSH to see the neurology clinic and could give me some info

im also terifed of going into london coz of all the bombings, we r driving there instead of going by train, as i think its safer but i dont think anywehere is safe now

sorry gone on abit here, any help would really help us

love natalie

lou33 and lieows children were under neurology at GOSH, they both speak very highly of it. Good Luck with your appointment

sparklymieow, lieows!!!

Hi, my son has a very severe form of epilepsy and has had seizures since he was born (noticable from 6days). There are i believe over 250 different kinds of epilepsy, what kind of seizures is he having and how many per day. Harry has 150 on a bad day and about 5-20 on agood day. we are under alder hey and they have been fantastic. Ask any questions you want and i will try to answer from my expereince. Harrys tests up to now have included 2 MRIs, 2CTs, one ultrasound of the brain, all metabolic, chromzone, genetic testing, muscle biopsys etc etc etc.my personal email is [email protected]

Love Denise

hi denise

matthew has generalized tonic seizures, they can last from 2 minutes to his longest which was 12 minites hes also had seizurees where hes nto come rond and gone into another seizure which was relaly scarey

hes had 2 eeg's, a ct, plus a ultrasound whne he was 8 weeks old

he alsways having blood tests and only 1 has come bk borderline high which was CPK which apprently is muscle damage

hes on medciation has been since april hes on 7ml a day, we do have rectical dizepam for him but have never used it as the hosp chnaged his mind after we was prescribed it

hes always ill, he suffers asthma and allergy to diary as well
he gets every bug going is always in and out of hospital with diffent illnesses and get them quite bad

i know the questions i want to ask there not going to be able to answer liek how long will he have this for, was he bornw ith it etc, but i would lke to know more about the future for matthew and if hes other health probelms contribute to his epilpsy he was born 1 month early and had his first seizure at 8 weeks old

what r all the tests ur son has for then? r they to make sre his seizures isnt caused by other problems then?

matthew is a very por eater as well he will only eat puree food if he eats at all and suffers with his weight

thnaks for taking the time to reply

i dont wnat to go there and espect to much from his consulation so not sure how to take it all at the mo

loev natalie

Hi natalie,
Harrys tests where really just to try and find what was up with him. He has malignant migrating partial epilepsy of infancy. He was the only child in england to ahve it but recently another child was diagnosed at GOSH. There are only about 13 cases diagnosed in the world. All of Harrys tests have been negative. The brain scans shown a perfectly 'normal' brain. His diagnosis was a clinical one based on age of onset, type of seizures and eegs. He is resistant to most anit epileptic meds and most have made him worse. He has followed the course of the illness to the letter. He stopped eating at about 11 months old as we were told he would. One day he just refused to eat, it was as if he forgot. He has also forgot how to cry. we know Harrys prognosis, he will always have seizures and most prob they will become continuous as he gets older. He is quadriplegic so cant lift his head or use any limbs. Harry is fed via a pump into his gastrostomy tube. He is also registered blind. He is on the ketogenic diet(have you read about that). He has rectal diazapam but we try not to give it him to often as it makes him drowsy and his seizres increase when he is tired.
We spent alot of time in hospital during his first year, but (touch wood, fingers crossed etc) he hasnt been admitted since july 2004, and that was for a chest infection. Our consultant is very understanding and knows that we would prefer to be at home. we have all the emergency medical equipment (blood sats, suction etc)so we can cope ok. Despite all his probs he is generally a well child. He is on long term anti biotics which has made a massive difference to him. Is your little one on them long term.
sorry for the long reply.

Love Denise

matthew has lost his 4 weeks seizure free

las nite at 10pm he had a seizure in his sleep i heard him moan, then let out a relaly loud scream as i ran upstairs the time i got there he was fiting, he has never had a seizure in his sleep b4 so very glad we only have 2 days til GOS

thanks for ur messages

love nat

Hi, Just to let you know that i am thinking about you. Good luck with appointment at Gosh. Let me know how you get on.

Denise

Good luck Nat, have been thinking about you. Hope it goes well.

Good luck tomorrow, Nat. The team at GOS is excellent (a professional opinion rather than as a parent). They are one of the most knowledgeable teams in the country so you should try to ask any questions you have as you will not get a better opportunity to have them answered. There is no need to be nervous. Most parents are anxious at their first visit. It is helpful to make a list of questions and don't worry if they seem trivial. If something is important to you, it is not trivial. Let us know how you get on.

well wow what can i say it was the best app i have ever been to regarding matthew

for once we was listeed to explained things in detail, and she wnated to know everyhting dating bk to when i was preggers

Bacially she wnats to rule out other things causing the seizures, as coz hes had reflux as a baby, and still has problems with food now, and hes still abit sicky and cant ahndle lumps she wnats to make sure hes not having seizures caused by a blockage in his airway

she is not very happy at all about hsi weight she cant beleive no one has been bothered about it, she said to drop 3 lines on a centile is not good at all so that needs investiagating

also she wants his movemnts studied at night to seee how he is

so now the not nice good part
matthew has to go into great ormons street for about 3 days she thinsk end of august to have alot of tests done
he needs another EEG, he is going to need a PH test which involves hi havign a tube inserted into his nose going into the top of his stomach to measure how mcuh acid he has to make sure its not reflux
hes going to have another sleep observation but this time he will be connected to differnet machine which will have probes on his body which gets a accurate reading
hes also going to see the dietican and speech therapist while hes on the ward to try and help him gain some weight

she said if they cant find a indication of mcuh going on, they will then do a MRI
he is also going to need blood tests as well

she admites hes been ill alot so these tests will help thme find out if hes seizures r actually epilepsy or something else
hes developing well though which i knew hes been doing the stuff at the right age for what he shoudl fo been not is if u knwow hat i mean

the woman is going to ring me on monday to giev us the dates for him to go in, im gonna stay up ther with him and jon will be here with holly or working as he wont be bale to drive up to london every day

im so happy it went well this woman was great with matthew so now we wait a few weeks til he goes in

thanks for ur wishes
love nat

Glad it went well. Though those few days at GOSH will be tough hopefully it will get you some answers and some much needed help.

Have been wondering how you got on, pleased it went well.