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Old 30 Nov 20, 06:14 PM  
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Floridatilly
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Mobile Interesting doctors appointment

My daughter has type 1 diabetes and was having her flu nasal spray today. The nurse we saw was utterly amazing . She checked my daughters details, medications etc then asked if anyone else in the household had diabetes or other autoimmune disease. I explained about my son being diagnosed with crohns recently, due to covid his appointment has been put back so no medication until then and no more steriods because they need to see him without steriods or change in diet. She immediately wanted to double check things due to the nasal spray being ‘live’. She contacted the doctor and our daughter cant have the nasal spray, only the injection and the whole household needs it asap. She did my daughters and and my husband has just gone with our other son.
My son with crohns is quite bad at the moment, I can post more recent photos of his lips if it doesn’t turn anyone’s stomach. He is constantly on the toilet, his tummy is swollen. Its a shame for him.
His next appointment was next week but now delayed until January due to covid.
We are in limbo at the moment, I know there are a lot worse so I try to just suck it up. But its so upsetting seeing his face so swollen and his upset tummy constantly.
The nurse said that he is very much at the moment with no treatment etc
But what do I do? Keep him off school indefinitely 😫
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Old 30 Nov 20, 06:17 PM  
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EssexSue
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Originally Posted by Floridatilly View Post
My daughter has type 1 diabetes and was having her flu nasal spray today. The nurse we saw was utterly amazing . She checked my daughters details, medications etc then asked if anyone else in the household had diabetes or other autoimmune disease. I explained about my son being diagnosed with crohns recently, due to covid his appointment has been put back so no medication until then and no more steriods because they need to see him without steriods or change in diet. She immediately wanted to double check things due to the nasal spray being ‘live’. She contacted the doctor and our daughter cant have the nasal spray, only the injection and the whole household needs it asap. She did my daughters and and my husband has just gone with our other son.
My son with crohns is quite bad at the moment, I can post more recent photos of his lips if it doesn’t turn anyone’s stomach. He is constantly on the toilet, his tummy is swollen. Its a shame for him.
His next appointment was next week but now delayed until January due to covid.
We are in limbo at the moment, I know there are a lot worse so I try to just suck it up. But its so upsetting seeing his face so swollen and his upset tummy constantly.
The nurse said that he is very much at the moment with no treatment etc
But what do I do? Keep him off school indefinitely 😫
Oh that poor little lad, he's only a baby really, I'd try and get him an appointment asap.
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Old 30 Nov 20, 06:38 PM  
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Floridatilly
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Originally Posted by EssexSue View Post
Oh that poor little lad, he's only a baby really, I'd try and get him an appointment asap.
We have enquired about going private, his specialist actually has a private clinic but his secretary said even then it might be January so we wouldn’t be gaining anything.
It is so frustrating though and we feel helpless. We just have to write daily food dairy, daily toilet trips/accidents. And keep a photo diary of his lips or I should say balloons. 😫😫😫
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Old 30 Nov 20, 06:44 PM  
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Myself and my brother have Crohn's. We had a family appointment for the flu jab in October. No live vaccines allowed if someone in the household is immune compromised.

Does your wee boy have an IBD nurse yet? I would contact the hospital for an emergency appointment. It's a shame to be feeling rubbish over Christmas. If they can start him on steroids or a treatment hopefully he will feel a bit better before the new year.

When my mouth was covered in ulcers and swollen I was told to take B12 and folic acid tablets.
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Old 30 Nov 20, 07:01 PM  
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Poor little lad, I would keep him at home and once he’s better he can catch up. I would do a bit of basic work with him at home, you can buy books, I hope he gets an appointment and the treatment he needs soon Xxx
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Old 30 Nov 20, 07:23 PM  
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Yes that’s correct, my son is immune compromised due to his liver transplant and cannot have any live vaccines. We even have to be careful when the dog has his kennel cough vaccination!
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Old 30 Nov 20, 07:35 PM  
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Our DD suffered badly when she had her nasal vac 2 years ago, last year we disnt het around to getting it done as GP wouldnt do jab for her( school wont do her either because of her medical history) this year her consultant got GP to authorise it.

Hope your son gets seen soon as possible and on aome treatment to make him more comfortable. X
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Old 30 Nov 20, 07:59 PM  
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Originally Posted by Floridatilly View Post
We have enquired about going private, his specialist actually has a private clinic but his secretary said even then it might be January so we wouldn’t be gaining anything.
It is so frustrating though and we feel helpless. We just have to write daily food dairy, daily toilet trips/accidents. And keep a photo diary of his lips or I should say balloons. 😫😫😫
I’m sorry why can’t he been seen earlier it sounds like he’s really suffering have you shown pics to the Drs 🤔
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Old 30 Nov 20, 08:45 PM  
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Floridatilly
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The consultant has seen his mouth and felt his tender tummy. They did tests and stool samples and examined him inside. The results cane back as crohns plus the fact it is his whole intestinal tract that is effected.
Obviously thinking this would be short term the consultant said that we need to keep a food diary, toilet dairy, take photo dairy of his lips and write down how he is (he is achy and very tired) no more steroids, I assume to see which foods are effecting him the most?
His next appointment was next week but now the beginning of January. I just hope that doesn’t get cancelled too.
So basically we know what it is but nothing is being done about it.

Forgot to add. I had no idea there was live virus vaccines, I am clueless 🙈

Edited at 08:46 PM.
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Old 30 Nov 20, 09:02 PM  
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Originally Posted by Floridatilly View Post
But what do I do? Keep him off school indefinitely 😫
Why don't you consult with the school? I know you've mentioned how old your son is before, but I've forgotten. We have contingencies for children that have to be off due to health. It's obviously not the same as being taught but I'm guessing it'll be better now due to all the things put in place due to Covid.

I wouldn't be suggesting keeping him off for all time but if he needs the recovery then that's the priority. Hope he gets some help soon x
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