Today Tiddler had an appointment with the Developmental Paediatrician. I went on my own with T, unsure of what it would entail but reckoning on a 15mins with possible immediate discharge.
2 hours, several Braxton Hicks and a few more grey hairs later, we emerged from the appointment with T beyond tired and me fighting back the tears.
Ironically, the appointment went quite well...it was very detailed, with the Paediatrician taking a lot of history and then observing her accomplish various tasks: drawing, identifying objects, building block towers etc etc
She more or less hits the spots that she should, finding herself in the 15-18mth bracket for most aspects apart from communication which she was a bit more advanced, and cognitive and personal care or something like that which she is more like 12 mth level. It was a very interesting process to observe, she casted objects like a trooper, totally refused to build a brick tower.. It was reassuringly typical behaviour...
They did express concern as to her attention span... Which is woeful and incredibly incredibly exhausting so I was glad that this was picked up on as I felt validated. I have been trying to tell people how difficult it is to manage her as she will not stay on a task for more than 2 minutes, if you are lucky!
Her head banging and casting behaviour was also picked up on again and the basic upshot is she is getting referred to our Local Authority Educational Psuchologist to be assigned a pre school teacher. I have been trying to get T into this system and had been told before that because she was without a diagnosis this was unlikely. Thankfully, now she has been seen by the Paediatrician they have a Statutory duty to notify the local authority.
So a positive appointment all in all but there is no way I am flying solo with appointments like that again. It's impossible to manage bump, bags and very wriggly non walking toddler without a pushchair... Again... Not allowed in the building... We have heard that somewhere before...
Showing posts with label Paediatrician. Show all posts
Showing posts with label Paediatrician. Show all posts
Tuesday, 15 May 2012
Monday, 26 March 2012
What if it all happens again?
So last night, in a rare moment of time, clarity of thought and space to breathe I crapped myself again.
What if the baby is really poorly? What if she ends up in SCBU? What if she is much worse than Tiddler? Tiddler's Paediatrician said that he would like the baby and I to be kept in for a few days to ensure everything is ok and that feeding is established. Great, absolutely fine with that (although the Antenatal Consultant is still pretty non-plussed).
However, I am terrified at the prospect of my immediate post-natal haze... I will need to sleep of course I will. I know that no matter how scared I am the need for sleep will take over... what if she stops breathing when I am asleep? We still have an apnoea alarm from Tiddler - maybe I could take it to the hospital? I know everyone will think I am crackers but their first baby probably didn't go purple once let alone the number of times Tiddler did.
However much I flap and get myself into a blind panic about this, one fact remains. I can do nothing more than I am doing. Nobody knows whether the suspected genetic kink will repeat itself or indeed how much of Tiddlers newborn problems are attributable to genes. I can't wait to meet my baby though and Tiddler is going to be a great big sister.
What if the baby is really poorly? What if she ends up in SCBU? What if she is much worse than Tiddler? Tiddler's Paediatrician said that he would like the baby and I to be kept in for a few days to ensure everything is ok and that feeding is established. Great, absolutely fine with that (although the Antenatal Consultant is still pretty non-plussed).
However, I am terrified at the prospect of my immediate post-natal haze... I will need to sleep of course I will. I know that no matter how scared I am the need for sleep will take over... what if she stops breathing when I am asleep? We still have an apnoea alarm from Tiddler - maybe I could take it to the hospital? I know everyone will think I am crackers but their first baby probably didn't go purple once let alone the number of times Tiddler did.
However much I flap and get myself into a blind panic about this, one fact remains. I can do nothing more than I am doing. Nobody knows whether the suspected genetic kink will repeat itself or indeed how much of Tiddlers newborn problems are attributable to genes. I can't wait to meet my baby though and Tiddler is going to be a great big sister.
Tuesday, 8 November 2011
"Let Her Enjoy her Childhood"- when Specialists and Friends collide
Tiddler's Paediatrician appointment last week went ok. She is, apparently, 6 months delayed in her gross motor skills, but on course with her fine motor skills. Intellectually, he said that it's too early to tell how her development will pan out as intellectual growth kicks in from about now onwards. I know we would say this, but I am pretty sure she is doing ok intellectually.
After my wobble following Physio the other week, I asked him whether he thought a standing frame at Tiddler's age was quite (too) young? He said no- she wants to stand, she is trying to stand... she needs us to give her a helping hand. Standing will also really help build up her muscle tone as she wil have to work against gravity. Ok. Fair enough. I trust our Dr completely so thats good enough for me.
However, its not as straightforward as this. The other night, I spent a lovely evening with a couple of close friends. One of which had had a couple of shandies. They asked abut Tiddler, I partially updated them- telling them about the boots that she was to wear and how much she had hated trying them on. Cue drunken slurry rant interspersed with : "I am not being horrible..." and "Don't take this the wrong way...."
Basically, this friend told me to just let Tiddler enjoy her childhood, that the Drs were talking "bullshit", that T would walk when she was ready etc and why are they (and we) rushing her. The fact is, she is not the only person who has said similar to us. I know she wasn't exactly sober, but I wouldnt dream of saying the things to her that she said to me. I wouldn't ever volunteer my opinion on how she should bring up her child. I sincerely hope I wouldn't anyway, drunk or not.
What are we supposed to do? If Tiddler is 6 months delayed with her gross motor skills then without a leg up- excusing the pun- she is potentially faced with being a very late walker. There is no suggestion at this time that she won't be able to walk. So surely we are letting her down if we don't give her all the assistance she needs, albeit at this young age. Obviously we have to trust the medical profession. We have to have faith in them and we do, although at times it makes me sad that Tiddler is so entrenched in the "system" and sometimes I just want to scoop her up and run away from all the meddling/ exercise/ regimes etc.
Things are difficult. They will continue to be difficult. Our life would be easier without contradiction, and this includes that from well- meaning friends and family. They are not with us 24 hours a day, they do not see her abilities and frustration like we do. We must trust medical opinion. I just wish family and friends could keep their comments to themselves as voicing them puts us in an impossible position.
After my wobble following Physio the other week, I asked him whether he thought a standing frame at Tiddler's age was quite (too) young? He said no- she wants to stand, she is trying to stand... she needs us to give her a helping hand. Standing will also really help build up her muscle tone as she wil have to work against gravity. Ok. Fair enough. I trust our Dr completely so thats good enough for me.
However, its not as straightforward as this. The other night, I spent a lovely evening with a couple of close friends. One of which had had a couple of shandies. They asked abut Tiddler, I partially updated them- telling them about the boots that she was to wear and how much she had hated trying them on. Cue drunken slurry rant interspersed with : "I am not being horrible..." and "Don't take this the wrong way...."
Basically, this friend told me to just let Tiddler enjoy her childhood, that the Drs were talking "bullshit", that T would walk when she was ready etc and why are they (and we) rushing her. The fact is, she is not the only person who has said similar to us. I know she wasn't exactly sober, but I wouldnt dream of saying the things to her that she said to me. I wouldn't ever volunteer my opinion on how she should bring up her child. I sincerely hope I wouldn't anyway, drunk or not.
What are we supposed to do? If Tiddler is 6 months delayed with her gross motor skills then without a leg up- excusing the pun- she is potentially faced with being a very late walker. There is no suggestion at this time that she won't be able to walk. So surely we are letting her down if we don't give her all the assistance she needs, albeit at this young age. Obviously we have to trust the medical profession. We have to have faith in them and we do, although at times it makes me sad that Tiddler is so entrenched in the "system" and sometimes I just want to scoop her up and run away from all the meddling/ exercise/ regimes etc.
Things are difficult. They will continue to be difficult. Our life would be easier without contradiction, and this includes that from well- meaning friends and family. They are not with us 24 hours a day, they do not see her abilities and frustration like we do. We must trust medical opinion. I just wish family and friends could keep their comments to themselves as voicing them puts us in an impossible position.
Wednesday, 2 November 2011
Paediatrician Tomorrow
Tomorrow Tiddler has her appointment with the Consultant Paediatrician.
This time we have had the longest gap ever since her last appointment- 3 months. She has changed a lot and I know he will be blown away. As I type "I know he will be blown away" there is a voice telling me to "shut up, when will I learn" etc. Each time I build us up the fall when we are knocked down is greater and it hurts a damn sight more too. We were super positive but the Physio appointment last week pissed on my parade somewhat.
I am worried about her head banging, this is new and with her history I wonder whether we will be asked to reconsider an MRI scan. She has already had one, but she wriggled through it. Any future scan would have to be done with a general anaesthetic, hence we asked them to hold off when it was arranged back in May.
I wonder what her weight gain will be? Her feeding is still patchy, and she is still small although at the last weigh in she had jumped a centile!
It will be interesting to see what he thinks about her physical development... is she still delayed by the same number of months? As of last night, her unique travelling movement has morphed into commando crawling. We are totally blown away by this- we were told she probably wouldn't be able to crawl.
Both myself and OH really respect and like Tiddler's consultant and I am looking forward to it as I know he will give us a bit more black and white in our world of grey and unknown.
This time we have had the longest gap ever since her last appointment- 3 months. She has changed a lot and I know he will be blown away. As I type "I know he will be blown away" there is a voice telling me to "shut up, when will I learn" etc. Each time I build us up the fall when we are knocked down is greater and it hurts a damn sight more too. We were super positive but the Physio appointment last week pissed on my parade somewhat.
I am worried about her head banging, this is new and with her history I wonder whether we will be asked to reconsider an MRI scan. She has already had one, but she wriggled through it. Any future scan would have to be done with a general anaesthetic, hence we asked them to hold off when it was arranged back in May.
I wonder what her weight gain will be? Her feeding is still patchy, and she is still small although at the last weigh in she had jumped a centile!
It will be interesting to see what he thinks about her physical development... is she still delayed by the same number of months? As of last night, her unique travelling movement has morphed into commando crawling. We are totally blown away by this- we were told she probably wouldn't be able to crawl.
Both myself and OH really respect and like Tiddler's consultant and I am looking forward to it as I know he will give us a bit more black and white in our world of grey and unknown.
Wednesday, 7 September 2011
The week and a wobble
It would be fair to say that the week so far is hardly a cracker.
A GP asked if Tiddler had Down's
Tiddler is full of cold
She hasn't slept well for days. We haven't slept well for days. I am knackered.
Tiddler has begun arching. This is now so entrenched I am tearing my hair out a little.
Thankfully her Paediatrician called this pm, he is really great, and gave me a bit of advice. Importantly, he reassured me she cannot cause herself harm. This has been my main worry as she goes back into a "crab" but as she can't use her arms to support her she uses her head and neck. It looks like her neck will snap. So there's half a plan now, we can be seen by a Paediatrician soon if it continues to cause concern. He did say perversely it is quite good as it shows her strength is improving. In the meantime I have to distract her to get her into her crib, tumbleform, car seat, puschair or seat. Oh Joy. It is truly draining. I need a break, and am wholeheartedly rueing that we have no family nearby to let me take a break.
A GP asked if Tiddler had Down's
Tiddler is full of cold
She hasn't slept well for days. We haven't slept well for days. I am knackered.
Tiddler has begun arching. This is now so entrenched I am tearing my hair out a little.
Thankfully her Paediatrician called this pm, he is really great, and gave me a bit of advice. Importantly, he reassured me she cannot cause herself harm. This has been my main worry as she goes back into a "crab" but as she can't use her arms to support her she uses her head and neck. It looks like her neck will snap. So there's half a plan now, we can be seen by a Paediatrician soon if it continues to cause concern. He did say perversely it is quite good as it shows her strength is improving. In the meantime I have to distract her to get her into her crib, tumbleform, car seat, puschair or seat. Oh Joy. It is truly draining. I need a break, and am wholeheartedly rueing that we have no family nearby to let me take a break.
Tuesday, 16 August 2011
Reasons to be Cheerful, 16th August
Ok, bit late with this this week but here goes anyway...
1) Had Paediatrician appointment for Tiddler last Wednesday. Dr was really pleased with her and it was probably the most positive appointment we had ever had. I could have cried as the Dr gave us a big grin. Tiddler made great progress in one of the reflex tests she normally fails hands down. You can really see the changes in her. It is still early days for her but I left happy. I never leave there happy!
2) Yesterday, I was told I have PTSD (Post Traumatic Stress Disorder) Crazy. And probably not a reason to be cheerful for most but for me it's validation, the culmination of a long period of struggling and everything is now falling into place. I feel like this is a real turning point and feel heartened and positive about the changes I can make in the future.
3) We are going on holiday on Saturday. Yay! Our first ever family holiday. I am beyond excited and definitely have reason to be cheerful
1) Had Paediatrician appointment for Tiddler last Wednesday. Dr was really pleased with her and it was probably the most positive appointment we had ever had. I could have cried as the Dr gave us a big grin. Tiddler made great progress in one of the reflex tests she normally fails hands down. You can really see the changes in her. It is still early days for her but I left happy. I never leave there happy!
2) Yesterday, I was told I have PTSD (Post Traumatic Stress Disorder) Crazy. And probably not a reason to be cheerful for most but for me it's validation, the culmination of a long period of struggling and everything is now falling into place. I feel like this is a real turning point and feel heartened and positive about the changes I can make in the future.
3) We are going on holiday on Saturday. Yay! Our first ever family holiday. I am beyond excited and definitely have reason to be cheerful
Tuesday, 2 August 2011
Reflux and Weaning
After several intrusive tests and intravenous antibiotics, Tiddler's "dusky episodes" during the first 8 days of life were put down to Reflux. I remember the first time a Paediatrician said this I was very cynical and I will admit highly irritated. My newborn baby had stopped breathing for God's sake- how can that be Reflux? She had nothing in her tummy the first time it happened, how can that be Reflux? Anyway I was of course thankful it was nothing more sinister. We were "finally"* discharged with a diagnosis of "Silent Reflux" and a very daunting cocktail of medication at a user-unfriendly every 4 hours, 4 hours, 6 hours and 6 times a day.
We have always kept Tiddler's crib tilted (waste of a bloody good John Lewis glider crib, that!) and until very recently always kept her upright for an hour after every feed. I dont jig her about. She misses out on a lot of silly Mummy / Tiddler dancing :( Her medication has been tinkered with over time and she is now on a fairly strong medication once a day. (Omeprazole)
The thing about reflux is that its a condition that varies wildly but does seem to be exacerbated by teething / colds etc. Frustratingly it can seem that you are turning a corner and things are getting better and then you can be brought down to earth with a bang and whole lot of vomit!
Our Paediatrician had said originally we should wean at 4 months but due to Tiddler's low tone and inability to sit, as well as suspected Cows Milk Protein allergy we were then advised against this. Tiddler has had a rough couple of months health wise and so weaning has taken a back seat until now.
She has been doing really well with purees in the last couple of weeks, certainly enjoying an unprecedented hunger and desire to eat. However, she does seem to have a very strong gag reflex. This emerged in the first few days of weaning a while back and she gagged and vomited on a very thin puree of carrot. Since then, she has mainly coped with puree and we never gave her milk just before solids so as to make sure she keeps the milk in her! I am now attempting to introduce lumps and am finding that reflux is rearing its nasty head again :( This evening I gave her 1/4 of a tiny tiny Annabel Karmel pasta shell... she managed three quarters but the 4th made her gag and she threw her entire feed up. Now the saving grace is that Tiddler hardly seems bothered by this- its a silent evacuation rather than lots of tears and retching- just realised this is quite graphic, hope there are no vomit phobics/ people eating while reading this ! It is hard for me though- I spent quite a while preparing her dinner and then feeding it. To then see it all come back up again is dispiriting, feels like Reflux is back. I dont know how much slower we can wean her though as the lumps were tiny. Puzzled. Bloody Reflux.
* we had a lot of "final" discharges...
We have always kept Tiddler's crib tilted (waste of a bloody good John Lewis glider crib, that!) and until very recently always kept her upright for an hour after every feed. I dont jig her about. She misses out on a lot of silly Mummy / Tiddler dancing :( Her medication has been tinkered with over time and she is now on a fairly strong medication once a day. (Omeprazole)
The thing about reflux is that its a condition that varies wildly but does seem to be exacerbated by teething / colds etc. Frustratingly it can seem that you are turning a corner and things are getting better and then you can be brought down to earth with a bang and whole lot of vomit!
Our Paediatrician had said originally we should wean at 4 months but due to Tiddler's low tone and inability to sit, as well as suspected Cows Milk Protein allergy we were then advised against this. Tiddler has had a rough couple of months health wise and so weaning has taken a back seat until now.
She has been doing really well with purees in the last couple of weeks, certainly enjoying an unprecedented hunger and desire to eat. However, she does seem to have a very strong gag reflex. This emerged in the first few days of weaning a while back and she gagged and vomited on a very thin puree of carrot. Since then, she has mainly coped with puree and we never gave her milk just before solids so as to make sure she keeps the milk in her! I am now attempting to introduce lumps and am finding that reflux is rearing its nasty head again :( This evening I gave her 1/4 of a tiny tiny Annabel Karmel pasta shell... she managed three quarters but the 4th made her gag and she threw her entire feed up. Now the saving grace is that Tiddler hardly seems bothered by this- its a silent evacuation rather than lots of tears and retching- just realised this is quite graphic, hope there are no vomit phobics/ people eating while reading this ! It is hard for me though- I spent quite a while preparing her dinner and then feeding it. To then see it all come back up again is dispiriting, feels like Reflux is back. I dont know how much slower we can wean her though as the lumps were tiny. Puzzled. Bloody Reflux.
* we had a lot of "final" discharges...
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