#26
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(12-09-2009, 12:58 PM)Lucy Wrote: We share a birthday Big Grin xmas eve hehe, also, about the restricted diet......what does that consist of as my son will need a kidney transplant as he will eventually go into renal failure. Does the diet make it worse if not followed?

lucy xx

Hi Lucy,

Sorry to hear of your boy's need for a transplant in the future. My son should by rights be on a very low sodium diet and it should have been that way since his kidney problem. He is allowed 100millimols m/mls sodium or around 1and a half grams salt in any 24 hour period, up until he was 16 this was obeyed to the letter - then he went to college and I had less input in his diet.

His current bp is 196/174 Confused which again will neither help his kidneys nor his heart. The kidney condition stems from 2 diseases being found following biopsy - membrano proliferic glomeruneuro nephritis type 1 - MPGN Type 1 and heinoch schonlein purpura - HSP. According to the consultant at the time, to have one of these conditions was rare but to have both was one in a million chance and to have both together, well practically unheard of. By rights he should have died.

The consultant said that he must remain on the restricted sodium diet for the rest of his life, as there is no guarantee against the same happening again. We have no idea if the bp caused the kidneys to fail of the kidneys caused the bp - initially the bp was 258/194. If he had remained on the diet as he should have, the bp would not have risen and therefore will not put extra pressure on his kidneys.

We are also aware that his heart became enlarged when his kidneys failed due to his bp.
#27
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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
#28
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Hi i am new here my child was recently diagnosed as having a global development delay which to me means they do not know what is wrong with him.My son is 22 months old but his abilities range from a 6-10 month old.He doesnt speak or say any words like mama dad.He doesnt follow any instructions he seems to not understand and he also doesnt answer to his name point or show me anything his main form of communication is crying.He cannot walk he wakes up 3-4 times a night every night since birth.He cannot feed himself and is noise sensitive to the hoover electric toothbrush and microwave.On the upside he can be such a funny little chap and has recently learnt how to lift his cup up to drink and has been copying mr krabs from spongebob when he laughs in the theme song which is very cute.Im not sure what to expect for the future as he has been referred to numerous services but not yet started any.Im not sure about what help or support is available as this is all new to me any help/information is welcome
Mum of 2 lovely boys[Image: smiley-angelic008.gif]



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#29
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hi katala, has the health visitor offered you any help by the way of a family support worker? it has to be requested through paperwork but the Health visitor can do it. this will probably be a lady who may come out once a week and help with respite and other things such as dla.

i have 3 children, my 2 youngest have autism and gdd. have you heard of portage, i know they can be involved in under 3 years old. they can come to your home and do activitys with your child. my family support worker is great, ive only had her a month but she has done so much for me and i dont know why i wasnt told i could have one as my middle child who has autism is 6 now.

the cartoons learn my daughter to talk - lol. if spongebob does it for your little one i would gets lots of them recorded. my daughter says most of her words off charlie and lola
#30
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Hi and welcome to the forum!! our son euan had a gdd but we found a medical reason for it so he is now, at 2 1/2 nearly cought up from it. What health professionals have you seen so far? In terms of gross motor skills physio's can be a great help, either with coming out to you and having sessions or giving you advice and you implementing it at home.

Have they given any sort of indication as to what has caused the gdd? such as cp or autism? Have you put in a claim for dla and carers?

In regards to speaking, we self refered to SALT but they tend not to give proper speech therapy to children under 3. Euan only started saying words this aughust and even now is still very baby like and difficult to understand but we have been told that he still has to go through all the 'normal' phases of speech as any child would - it just sounds strange because he is bigger(ish).

hope to hearfrom you soon

Lucy xx


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