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[Guest guest]

Carole, you have to be very persistent, If you don't then things won't

get done in a timely manner. I mean you have to literally be a pain in

the butt. And if that is what it takes to get things done do it. I

know I have had to do that from day one. Just remember you are the only

mother your son has.

Dianna

back home

As an update, is now out of hospital. He had a very rough few

days there. At least his seizures are more controlled now, though

they have had to give him the full dose of all his medications to do

that. He tires very easily again and is still being tube fed on most

occasions, but is starting to feed himself a little. The plan now is

to gradually wean him off two of the three medications (Sodium

Valproate & Clonazepam), replace these with Clobazepam and keep the

Tegretol at full dose. Hopefully one day he will only have to be on

one medication, but I think that day is a long way off.

One thing puzzles me though, and I wondered if anyone had any ideas

about this. While he was in hospital his paediatrician suggested they

give him his second round of immunisations (polio, diptheria,

tetanus, whooping cough) plus his menigitis jab. After the first

round of immunisations he was quite poorly and his seizures increased.

When my children were little we were advised against immunisations if

our child had recently been ill, even if it was just a cold, and told

to come back two weeks later to be certain that any virus or

infection had well and truly cleared up. With 's increased

seizure activity of late, and the probability that he had a virus

when he was admitted to hospital, it seems odd to me that they even

suggested this, let alone went ahead with it. The doctor on duty at

the time was due to have the injections refused to do them as

she didn't feel it was the right time, but the paediatrician over-

rode that decision and did them the next day. Am I worrying over

nothing?

Once again I'm not entirely happy with way things are going, just

when I thought we were getting somewhere. had another EEG, and

blood tests for liver function etc. His neurologist has a clinic at a

number of hospitals in the area, including ours, and by luck he was

holding a clinic here during 's stay. My son and daughter-in-

law have only met him once, when had his MRI scan, and have

never been offered an actual appointment to see him in person since.

Naturally my daughter-in-law expected him to want to see and

speak to her while he was there, but instead, he spoke in private to

's paediatrican, in an office just 3 doors down the ward from

them. Is this normal practice.....to discuss a patient's progress and

test results, but not speak directly to the parents, even though they

are only yards away? apparently he has decided to book in for

another MRI scan, when he is 12-18 months old, but hasn't said why.

The paediatrician is also suggesting we wait for a referral to Dr.

Pilz in Cardiff until after this second MRI. Any ideas why?

Also, still waiting for the genetics test results (due before Xmas),

but after being fobbed off by our paed. half a dozen times on this we

finally rang the genetics department ourselves and are waiting for a

return call on Monday. Is this how it's always going to be? Waiting,

pushing, more waiting and more pushing.

Thank you all for listening again, my very best wishes to everyone

xxxxx

Carole (grandmother to )

_____

[Guest guest]

Carole,

I am glad that is feeling better. I am on my third pediatrician since

Dillon was born. I really like the one we have now. He may not know everything

but he admits it and we are able to talk things over and we make a decision

together. Dillon still has not had his MMR shots, but I just have not felt that

the time is right. The doctor has asked me but when I said no, he did not push

the matter. I do not go to doctors that I feel do not listen to my concerns or

consider my wishes. Maybe your daughter in law and son should find a ped that

they can communicate with better.

Another thing that I have found helpful is to have a copy of any consult with a

specialist sent to my home. I keep them in a notebook and they are available

whenever we need to see a new specialist. It saves a lot of time and it also

allows me to read it later and look up any terms I may not understand. Things

tended to be a bit of a blur when Dillon was first born and I never could think

while in the office. I could think of a million questions when I got home.

I am not sure of your doctor's reasoning for waiting for a visit to Dr. Pilz.

It doesn't sound like you are getting along with 's doctor and I think I

would seriously consider finding one that you can relate to better.

Harriet

[Guest guest]

and my plan for next week is the TaeBo 24/7 dvd week 1I am traveling Wed - sat and think these 30 min with bands will workhope I didn't gain too much my only walking days were flying ones running for connections and of course just ate like poo the whole time but ready to start back to it.. My 5% goal probably didn't make it I wanted to drop 9 and had dropped 7 when I left hope I only gained back 1 or 2 or 0 (best!) ... goal is to try for 10 next month, that way if I get 8 I will keep improving.. long term goal is 30 by end of yearjudy