#31
Posts: 77 | Threads: 11
Joined: Dec 2009
Reputation: 0

  • VIP
Hi thanks for your responses no the Health visitor hasnt said anything to me but i am going to see them tomorrow so i will definately bring it up with her.At the MDA they made a referral to portage so we are waiting to hear from them and everything else we were referred to.Im still waiting for the report they said they would send.They said they do not know why he is delayed so they are going to run the normal tests hes had some blood tests done, awaiting audiology and possible MRI.They just said he is small for his age his weight has dropped from the 50th centile to just below the 25th and his head circumference has dropped to 25th as well. I have considered applying for dla and i have the forms but am finding it a bit daunting and because i dont have the report can i send it in without it im not sure if that will make a difference. hopefully things will improve thank you both for your support
Kat
Mum of 2 lovely boys[Image: smiley-angelic008.gif]



[Image: weight.png]



#32
Posts: 7,906 | Threads: 3,211
Joined: Oct 2009
Reputation: 11

  • Administrators
(12-10-2009, 09:11 PM)katala Wrote: Hi thanks for your responses no the Health visitor hasnt said anything to me but i am going to see them tomorrow so i will definately bring it up with her.At the MDA they made a referral to portage so we are waiting to hear from them and everything else we were referred to.Im still waiting for the report they said they would send.They said they do not know why he is delayed so they are going to run the normal tests hes had some blood tests done, awaiting audiology and possible MRI.They just said he is small for his age his weight has dropped from the 50th centile to just below the 25th and his head circumference has dropped to 25th as well. I have considered applying for dla and i have the forms but am finding it a bit daunting and because i dont have the report can i send it in without it im not sure if that will make a difference. hopefully things will improve thank you both for your support
Kat
Hi Kat,
In regards to the Dla you dont need a diagnosis as such in order to claim it as it is based on care needs alone.
What sort of care needs does you son have at the current time?
What investigations are they doing in regards to weight loss etc?
They must take this seriously as it can be a sign of many things as we found out ourselves.Undecided
Looking for sensory toys at affordable prices then look no further

Sensory toys for children with special needs CLICK HERE
#33
Posts: 77 | Threads: 11
Joined: Dec 2009
Reputation: 0

  • VIP
(12-10-2009, 09:18 PM)Daniel Wrote:
(12-10-2009, 09:11 PM)katala Wrote: Hi thanks for your responses no the Health visitor hasnt said anything to me but i am going to see them tomorrow so i will definately bring it up with her.At the MDA they made a referral to portage so we are waiting to hear from them and everything else we were referred to.Im still waiting for the report they said they would send.They said they do not know why he is delayed so they are going to run the normal tests hes had some blood tests done, awaiting audiology and possible MRI.They just said he is small for his age his weight has dropped from the 50th centile to just below the 25th and his head circumference has dropped to 25th as well. I have considered applying for dla and i have the forms but am finding it a bit daunting and because i dont have the report can i send it in without it im not sure if that will make a difference. hopefully things will improve thank you both for your support
Kat
Hi Kat,
In regards to the Dla you dont need a diagnosis as such in order to claim it as it is based on care needs alone.
What sort of care needs does you son have at the current time?
What investigations are they doing in regards to weight loss etc?
They must take this seriously as it can be a sign of many things as we found out ourselves.Undecided

My son cannot do most things a child of his age does he cannot communicate he cannot feed himself he can just about lift his cup he learnt that yesterday. When i feed him it takes up to an hour each meal because he throws tantrums he cant walk he doesnt lift his arms he like to hurt himself by banging his head on floors chairs charging head first into things he slaps scatches himself headbutts me and others tries to tip over highchair he wakes up to 4 times a night each night and throws himself against the wall /cot he cant communicate when he has been to the toilet so he has the care needs of a baby i have to constantly watch him and do everything
Mum of 2 lovely boys[Image: smiley-angelic008.gif]



[Image: weight.png]



#34
Posts: 11 | Threads: 0
Joined: Nov 2009
Reputation: 0

  • Registered
(12-09-2009, 06:04 PM)Lucy Wrote: Low sodium....eek. My son has a very rare genetic disorder called cystinosis, it affects the entire body but the kidneys take the main blow at first. He has crystals build up and damage the cells, because of the damage to kidney cells his kidneys do not absorb anything so he has to take, phosphate, potassium, calcium etc.

He can drop 2kg in 24hours when he gets sick and dehydrates so quick (summers/bugs are a nightmare). He also has a massive water input/urine output because the kidneys don't retain fluid either. He craves salt.....so most of the food he eats is savory/salty....so....chips.....sausages etcetc. I dread to think if they limit that!!! I don't think he'd eat lol.

Gosh your sons bp is high but that is very common with kidney problems, euans isn't too bad, its usually around 95/60ish....sometimes the 60 does go higher but it usually comes back down on its own. We have just been told euan is also anaemic due to low iron saturation levels.....not sure if thats common in renal patients or if its to do with the cystinosis.

How do you manage treatment for his kidney problems (you mentioned he shos some asd behaviours!?) my son is currently under assessment and its something that really concerns me as he is going to have to take medication for life and go through many different things medically related......i just don't know how i'm going to get it all through to him if he is diagnosed as having something like asd. Has your son ever been on dialysis? if so...how was that?

xx

He no longer recieves any specific treatment for his kidneys other than his diet - although both conditions can recur, we need to try to keep his bp down and maintain his diet. During the worst of it, he was on stand by for dyalisis, but luckily he managed without it - although at the time it was touch and go as to whether he would survive anyway.

You know I found the asd, although challenging for us as parents/siblings/family memebers etc, far easier to deal with - especially when the child is younger - if I let him lead the way as much as possible. We learned to work a lot of the time in his world and slowly brought him into our world as he began to accept changes and routines. It wasn't easy but it can be done.

Our son had a major fear of needles - and by major I mean MAJOR! Now when his kidneys went on strike (as he puts it) he was having blood taken every 30 minutes for the first 24 hours followed by bloods every 2 hours for the next 48 hours. This progressed to bloods every day, then every other day etc. We would have emla cream in the fridge to put on him before we left for the hospital, as soon as we got there (an hours drive away) a nurse would immediately take his blood, before the effects of the cream began to wear off.
Now although he does not require cream to numb him, he still prefers to have blood taken from his hand and not his arm - he is slowly getting used to the idea that it is easier and quicker to get the needle in and out of his arm than his hand.

Recent blood tests (last week) have shown in the results today that his kidneys are fine for now, however something is showing on his liver. He will be being retested after christmas in the hope that he is just experiencing a blip.
#35
Posts: 225 | Threads: 32
Joined: Dec 2009
Reputation: 0

  • VIP
Hiya im becky mum to bradley 6 and jack 3
at moment im still going through the 2year stress of trying to find out if anything is wrong with jack.
he was very delayed when younger but now improved a little has lack of speech and the behaviour is becoming a nightmare

Health visitor's etc in one area i lived saying autism and wanted testing then week after i moved i see different Health visitor and pead and they wasnt bothered said hes fine well apart from low ferritin levels and slightly raised urea
i know somethings not right and people around me say same but getting no help
[Image: buttonsandflowers111102.jpg]


Users browsing this thread: 1 Guest(s)