So Now what I hear you say, if you remember I commented in my last blog that Lunatic john is having problems, well now it’s his turn to steal the spot light from Mr fabulous and Crazy jane.
Lunatic john was born Jan 7th 2009. He was perfect weighing in at 7lb 8 oz, my biggest of the 3. He wasn’t really jaundiced, a bit but not like Mr fabulous, he was a vomiter, but not like Crazy jane. He was just your typical new born, but his vocal pitch was ear piercing. Yes he screeched not cried. This was a hard sound to hear and sent poor Mr fabulous into a sensory melt down. I remember the Health nurse commenting on it and asked me to ask the doctor for advice. I was simply told by the doctor that other than send him to a speech and language therapist there was nothing she could say or do. Fair enough, helpful as always.
Lunatic john was born with 2 webbed toes on each foot, and he had a funny habit of lifting his knees up in a funny position, this was checked by ultra sound and was given the all clear, they reckoned it was a hormone settling problem, fair enough. I always had an eerie felling about Lunatic john since the day he was born. I will call it my gut instinct and mother’s intuition, but my sister and my mum also feel it. I remember once he slept through the night and I leapt up out of bed in a sweat, I really taught I was going to find him dead in his cot, but no he was fine, he had just slept through, but there is just something inside of me that has a fear of something being wrong with Lunatic john, not intellectually but physically.
Any way time went on, he was a very advanced baby, he said crazy jane from about 5 months, and Mr fabulous followed shortly after. On the 31st of October he took 2 steps and then sat back down in middle of floor. He was walking against furniture at 6 months. He is doing everything very early, this is great, but is it? I’m not really sure if it is to be honest but I’ll take it as it is for now, an advanced baby.
Lunatic john one day out of no where began to have a yellowish tinge to his skin; I taught I was actually imagining it so never really took much interest. I met up with my sister 2 days later, she asked: what’s up with Lunatic john, why is he yellow? What did the doctor say about that? I had to confess that as I taught I was imagining it I never brought him, he’s fine, he’s eating, he’s drinking, he’s his usual self, so never taught more of it. Maybe I should bring him to the doctor, Na he’ll be fine wont he? The next day it was gone, all yellow had disappeared. Strange, so I cancelled the doctor’s appointment. A month later it happened again. What the hell is that? I remembered my brother and I got a bit panicked. My brother almost died from a haemoglobin auto immune anaemia. He was surviving in 70% of water as his white blood cells had attacked and destroyed his red blood cells after a bad flu, his only symptom, HE TURNED YELLOW. I remember he was told that it was genetic.
I brought Lunatic john straight to the doctors, who sent him straight to the hospital. He had tests done, liver, blood, stool, urine, everything, all clear. How odd, but they will keep an account of it and my brothers illness on file for future ref. It took 4 days for him to go back to his normal colour. The local AMO saw Lunatic john for a developmental check. She put the yellow thing down to DH being of Italian decent, that the yellow tinge could be the sallow complexion coming out in Lunatic john. Lunatic john failed his hearing test that day (there is nothing wrong with his hearing believe me) but this also sparked concern as Mr fabulous and crazy jane also failed theirs during their developmental checks
So anyway, Lunatic john continued to be a really bad eater, he eats like a sparrow and probably weighs the same as one. I am constantly trying to get food into him, he won’t swallow and will gag on any food with lumps in it, yet he can eat finger food. He will only really drink a full bottle at night time, during the day it’s a struggle to get him to finish a 5 oz bottle, 8 we gave up on as it just went down the sink I try him with anything I can think of, nope its waffles and chips all the way, I hate giving kids rubbish foods, so giving it to my baby is even worse, but if he eats even some of it, I’ll give it to him. . He is still not sleeping through the night.
All over and before Xmas the kids had been sick with throats, chest and ear infections. It was non stop and they were constantly on antibiotics. Lunatic john was off his food due to this, and I had been noticing him loosing weight. Xmas was a nightmare as we were all sick and as much as we tried to get into the spirit, we couldn’t, we were exhausted from sleepless nights with the kids, and the snow and floods previous had us house bound and feeling a bit drained. We celebrated DH’s Xmas on the 24th and it was lovely, we made a huge effort and enjoyed it. The 25th was a disaster; the boiler had broken down so no heat and lots of snow. The down stairs bathroom flooded, the 2 boys were so crancrazy jane and irritated that they didn’t even open their presents. I didn’t care as we were going to my mums for dinner and the day. We had a nice time there and we picked up a bit.
New Years Eve the boys were sick again, especially Lunatic john. We stayed home and barely made it till 12 and went to bed. New Year’s Day we were due in my mum’s house, again stayed home. Jan 2nd I was changing Lunatic john’s nappy, and it hit me, how much weight he had lost. I cried as he was so thin and so sick. I went straight to New county hospital, I couldn’t leave it anymore. They agreed that he had lost way too much weight and was starting to loose muscle also. They advised us to go to new county Hospital; again our concerns were taken seriously. Yes he was loosing way too much weight. His ribs protruding through his skin and he had a lollipop look to his head and body. But he was full of beans and lively and alert. He is advanced for his age and perfect bar his weight.
They have decided to start an investigation into his weight loss. They are concerned but it is not so serious that he requires medication just yet. They weighed him, he weighs the same as he did at 8 months, 8.26kg, he had not gained a pound in 3 months, and even at 8 months he was too thin for his age. They did express concerns at his hyperactivity (ah yea, sure why not, bring it on) and he was very tall for his age at 76 cm. This could also be the reason for weight loss, he is so hyper active, tall and his metabolism is high. They have the previous history of turning yellow listed as a concern and of the haemoglobin anaemia documented. There is also a genetic protein issue in our family. It is similar to PKU as well as PKU being in our family, (I have got to be born into the dodgiest genetics ever)
New county hospital have asked me to get a letter from my doctor advising of all illnesses and medicines the child has been on since birth, all issues I raised with the doctor is needed for their investigation. I advise them that my doctor isn’t fond of letters or assisting me with my children in any way, I was advised to get rid of my doctor as she is not fond of doing her job, that I am in need of a good doctor who will support my applications for therapies, benefits and intervention for my children, they were appalled that my doctor did not support me at all, when I told them of all the problems I have been having with the kids they were horrified at her lack of support.
I’m trying to fill Lunatic john up as much as possible and fatten him up, it’s impossible but I’m trying everything. Rice in his formula milk, Rice in his cereal, Vitamins, lots of Butter, all I can think of. He’s a very fussy eater anyway so it’s a challenge and a struggle. The health nurse comes to weigh him, never a single pound gained. He has his first Paediatrics appointment February 1st so I am counting the days. I’m not too worried as it is in the hands of professionals and I trust them. Do I think some crazy genetic or chromosome issue will be found, YES as its just my luck with my kids, Is he my last child, NO I don’t think so, but I can say for now, I’m not even close to thinking about anymore, time will tell, but I am waiting till Lunatic john is sorted before I make a decision on more kids either way.
I asked my doctor for the letter for Lunatic john, I was told that if the hospital needs any information they can contact them directly. I was so shocked again by this that I actually lost it. I said, yes well I told them that would be your response, they were in fact insistant that it is your job to supply me with such information for them. I also advised her that i had informed the hospital of my concern that i had no help from them when requesting letters for Crazy jane. They told me that it is my GP's job to support me in this way. She was speechless; she told me I could get the letter for Lunatic john at the desk. I changed my doctor as again no matter what help I have asked for, I receive none.
The mental health services that were dealing with CRAZY JANE are back to haunt me also. My stupid Doctor requested they review CRAZY JANE without seeking my permission. I ended up having an argument on the phone with Dr George again, and he flat out accused me of wanting to inflict any oul label on CRAZY JANE just so I do not have to deal with my bad parenting skills. I request CRAZY JANE to be released completely from their services. I also hear from reliable source that he had done this with another child, and this child lost out on vital early intervention and therapy, the child later received an Aspergers diagnosis by the same services but not by Dr George.
Crazy jane has been accepted onto the CTYI courses, we are over the moon, Crazy jane is just so happy in her self, it seems to have given her self confidence and self esteem a bit of a lift. She will be doing architecture and she cannot wait. Crazy jane really needs this as she has just been through way too much the last 2 years, this is something for her and something that she accomplished and her intelligence and her Aspergers have given her this opportunity. She feels so proud of her self and its so rewarding for us to see.
So for now we just have to wait and see how Lunatic john will get on Feb 1st, I’m still waiting for my change of doctor to be approved, you know your self, I explained the need to rush the application, but deaf ears in our MEDICAL BOARD services still leave us doctor less for now. I sent off yet another appeal for DCA, still no word, I can only imagine I will be refused again, of coarse, Aspergers is not a disability bla bla bla So that’s the story to date, I will of coarse update when I have more news.
20 comments:
Jen said...
It's fantastic news about Crazy jane and CTYI, I am delighted for her and that it has given her a boost:) I hope all goes well with Lunatic johns' appointment, its not far away now. I hope you can get answers quickly and there is not too much stress involved for you all. Jen xx
January 23, 2010 6:21 AM
Lora said...
That is quite a story about Lunatic john, I hope things go well at the appointment, good thing that it is not far away. Great news about Crazy jane....Kudos to her and her achievements. She must be so very proud and you as well because that is such a wonderful accomplishment.
January 23, 2010 7:33 AM
Lora said...
Oh Geez, I just left a comment and it didn't post.
Great news about Crazy jane, you all must be so proud! Hope that the appointment for Lunatic john goes well.
Hope this comment posts this time!!
January 23, 2010 7:35 AM
Taz said...
Having had an underweight baby, my heart goes out to you mand! At 12 months Button weighed just under 6kg (I just ran and double checked that with his growth charts, cos I couldn't believe it could be right!)The only consolation we had is that we knew the reason. It must be so worrying for you. Button was put on a formula called Nutrini which made a huge difference - it's super concentrated so a little goes a long way! It's prescription only, but might be worth checking out. In the meantime keep doing what you're doing - plenty of high fat snacks and squeeze in a bit of bottle at any chance. xx
January 23, 2010 7:57 AM
Autimom said...
oh mandie, my heart goes out to you. You are such a strong woman, and never gives up the fight. Wishing you all the best for feb. will be thinking of you and lunatic john xxx
January 23, 2010 8:40 AM
popsie said...
as usual my first comment didnt post, so sorry. i really hope Lunatic john is o.k and you dont have too much worry btween now and the appointment. no matter what those kids have a great mum and i could ring that dr crinkles bloody neck for you!!x
January 24, 2010 6:40 AM
Maddy said...
It seems we have a lot in common. For the moment I'm still to dazed to comment = one with pneumonia, one with Bronchitis and two with asthma......still, it can only get better right.
January 24, 2010 8:29 AM
Looking for Blue Scrazy jane said...
It just sounds so complicated, don't know how you manage, so many different battles to fight. Your kids are sooo luccrazy jane to have you as their Mum
January 25, 2010 8:04 AM
Petunia said...
You truely are a remarkable mum. I hope that you find answers to Lunatic johns weight problem and he makes progress. A huge congrats to Crazy jane for getting into CTYI :) You must be so proud of her xx
January 28, 2010 11:27 AM
Casdok said...
Hope all goes well tomorrow.And congratulations to Crazy jane!
January 31, 2010 5:28 AM
isaid...
thanks everyone for your lovely comments and congrats to crazy jane , thanks casdok, i stumbled onto your blogs today and im hooked, trying to get through them, your an amazing mum and you beautiful son is very luccrazy jane to have you xx
January 31, 2010 5:37 AM
Irish Mammy said...
Well done Crazy jane!!! but it must be so worrying for you with little Lunatic john. I hope that you get some answers soon, the inbetween waiting is the hardest. He does sound very advanced though in other areas so a hardly little guy. My little one keeps spitting out and throwing up food with bits in it. (He only has 2 teeth so I guess it is too much to expect him to chew it). So I went back to the puree foods, also the Milupa boxes with cooled boiled water, might be worth trying that to bulk him up?
Thanks for your lovely comment on my blog it cheered me up no end! By the way I have spent many a night in Rockfords!
February 3, 2010 12:22 PM
Cinda said...
I checked back today to see how everything was going for Lunatic john and your family. An amazing family with a special mom! Fingers crossed that things are going the right direction for you. Cheers for Crazy jane as well!!
February 3, 2010 1:49 PM
Anonymous said...
I hope you don't keep vaccinating him. If you don't think that is a major cause of all of this better look into it or you'll have one more autistic kid, which it is sounding like.
February 6, 2010 6:27 AM
i said...
my son has possible thyroid disfunction or celiac disease, i think il leave in in the hands of the experts and medical professionals
my son is not autistic and such an abrupt tone to your comment can only cause offense. And if i were to have one more autistic child it shall be loved cherished and adored just like his siblings, autism is not the enemy, lack of services and therapy is. it is dangerous to comment on sucha a toppic you obviously know nothing about, research before you preach
February 7, 2010 9:47 AM
Anonymous said...
Well said Maddy, what a bleeping idiot, especially in the wake of the Wakefield fiasco being overturned. Has to be a troll, nobody is THAT stupid!! Fabby answer hun, you hit just the right tone:)
February 8, 2010 9:40 AM
Anonymous said...
Good on ya Maddy! Well said!
February 8, 2010 9:41 AM
Anonymous said...
Well done Maddy - what an ignorant ass
February 8, 2010 12:41 PM
Anonymous said...
It does sound like a history of auto-immune issues are going on. This does put kids at higher risk for autism. I wouldn't vaccinate knowing this. I do feel some kids are at risk particularly when more than one child in the family is diagnosed.
February 17, 2010 7:05 AM
i said...
thanks anonymous, i never knew that
i know lunatic john is not autistic as he has all his witts about him and no autistic traits whats so ever, this has also been ruled out by peads team.
but autoimmune is rife in my family and id say you are right with the connection
thanx for comment and useful info xx
February 17, 2010 12:03 PM
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