Author Topic: mom needs advice  (Read 3180 times)

jonnell

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mom needs advice
« on: April 09, 2009, 04:51:40 AM »
Ok here it goes.  Jenna goes to her Rhumy at Dupont on Monday.  These are her symptoms.   Coughing with play, cold air.  Complaining of headaches, tummy aches daily.  Sinus infections one after the other.  Leg pain.  Last night I noticed she is bright red on the inside and outside of her Vajajay(learned that here)  I need to know what tests or medicine I should inquire about.  She has already had a positive ANA test and SSA and SSB.  Sometimes her Rhumy looks at me like I make things up but I am really concerned about Jenna and everything gets worse in the summer so I want to try to get things under control.  Thank you for listening to me u guys are great.

KYMOM

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Re: mom needs advice
« Reply #1 on: April 09, 2009, 10:19:32 AM »
Jonnell, My sixteen year old daughter has had problems with Asthma since she was a baby.  She is now medication free, but several years ago she was on five different meds daily.  She would get pneumonia at least once a winter and sinus infections frequently.  Her regular doc treated the sinus infections until one winter she was on antibiotics so frequently that the next time she got sick I took her to her regular pediatric pulmonologist.  He check her out and said that the problem was that she had steady post-nasal drip.  This problem caused headaches, stomach aches and coughs.  He prescribed a Flovent inhaler that she was only to use when she started to cough or feel sick.  This did the trick for her.  No more sinus infections.  Your daughter may not have the same problem.  Just another Mom's story. Roxanne

jonnell

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Re: mom needs advice
« Reply #2 on: April 09, 2009, 10:26:01 AM »
Thank you I will bring that up to her Rhumy on Monday.  Hugs and Kisses     Jonnell and Jenna

Scottietottie

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Re: mom needs advice
« Reply #3 on: April 09, 2009, 10:34:54 AM »
Hi Jonnell   :)

I just read you post and kind of skipped past it because I have very little knowledge of SjS and children or pulmonary stuff. Then I got onto to the next post - so I've come back. I don't think hypermobility is related to SjS. It's another possible reason for sore joints but with hypermobility the sore joints usually come when you're older - not when you're a kid. SjS causes inflammation of connective tissue and that can make your joints hurt.

Actually - I really came back because you mention stomach aches. You also mentioned Naproxen. Naproxen can wreak havoc with a stomach. I wasn't having stomach aches but I was getting acid reflux. I was scoped and was told I had esophagitis and mild inflammation inside the stomach too and was told to stop Naproxen immediately. (It was a medication I liked)  So I'd definitely ask your rheumy about that. I'd askabout topical cream for down below as well.

I'd make a list of symptoms and a list of questions and work your way through them. Poor Jenna is going to have SjS for life so its going to be her 'normal'. (Well - it'd be nice if stem cell research came up with something and I guess in her lifetime it might) You're going to have to be one very strong lady and concentrate on everything Jenna can do - rather than stuff she can't. If she senses your worry and concern all the time it will make her feel really insecure.

If you type Elise into the search box you may find some exerpts from Elise's diary. Elise was 8 when she came in here first I think. She's an inspirational young lady.

Take care - Scottie  :)
http://sjogrensworld.org/   (our home page)
http://www.sjogrensworld.org/chats.htm   (find our chat times here!)
https://kiwiirc.com/client/irc.dal.net  (way to chat + nickname and #Sjogrensworld)


Never do tomorrow what you can put off till the day after tomorrow!

wednesday mc haggis

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Re: mom needs advice
« Reply #4 on: April 09, 2009, 12:18:54 PM »
jonnell

i dont have loads of advice i so wish i had, get them to swab her vajayjay(love that term) and see if she has a thrush infection,or a bacterial infection . and get them to check if any of her meds cause these side effects and possibly use something else.

  I know your up the pole with worry about your little one, and i cannot imagine, my oldest has had asthma for a while and scalp psoriasis, my youngest had big constipation problems, which finally resolved, but ive not coped with your level of stress.

   scottie makes a good point in reading elise`s diary, you may well learn alot and be able possibly to share some expereinces with her and her folks.

        i dont know if there is a support group for parents with children with illnessses , that you could also join, so your amongst ppl who do know what it is like to be where you are, sure we all empathise, but none of us can realy sympathise with you, and it might do you good to be able to talk with ppl whose children have chronic issues, for your own sake, which is important as you need help too.

thats not to say we dont like helping you , we all know what sjs is like, pains us to think of a little one with it and we can give advice and support if we possibly can, but i do think a top up from a suport group for ppl in your position would be a bon for you, i think having another mother who knows where your at truly knows, would help you, and your important in all this just as much.

  think of your little one daily as im sure many of us do, certainly got my head striahgt when i think how lucky ive been to get to 37 before im at stage your little one is at.

   keep us informed and post up with your questions, you ll never be asking too much, for weve all needed help and will continue to do so, i think youve done yourself proud getting out there and finding as much information as you can for your little one, a mothers love eh ?? *hug*   i just wish i knew more and could help more, but thoughts being sent to you , i am a reiki practitioner, and can now send distance healing to you both , or any of you in the family, which id be more than willing to do , im not saying its cured me, you get what you are meant to get from reiki, but its helped me cope and made me stronger within myself, if youd be in any way intrested fell free to Pm me.

let us know how the rheumy apointment goes, were all rooting for her

T x

Abbasgirl

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Re: mom needs advice
« Reply #5 on: April 09, 2009, 10:18:18 PM »
I don't really have anything to add, Jonnell, except that we're looking forward to hearing about her appt. We're hoping and praying for wonderful treatment and answers to these problems. ((((hugs))))

harrigan

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Re: mom needs advice
« Reply #6 on: April 10, 2009, 12:41:57 AM »
 Hi Jonnell - good luck with the appt on Monday.  Make sure you tell the Dr everything on your list and ask if they are all related.  My daughter was sore and raw down below from age 7, lost all her eyelashes a year later but it wasn't till she was 11 that our dentist referred her for gingivitis that it was all put together.  She has mucous membrane pemphigoid which is virtually unheard of in children and has been on cellcept since she was 12. 

I look back and wish I had been more forthright and demanded answers.  I know it's hard - she is my 4th of 5 - and juggling all the appts with other children and a job has been a nightmare at times.  Wish we were neighbours and I could help out and just share your worries a bit.  Just want you to know that you, your daughter and the rest of the family are in my thoughts.  Hope you get some sunshine and time to be together over the Easter weekend, xx Ailsa
Female, 54
Diagnosed with Sjogrens March 09; Rheumatoid Arthritis February 2010
Meds: abatacept, Methotrexate injections , Folic Acid, Amitriptyline, Ozepramole, Tramacet, Glandosane & Viscotears.

jonnell

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Re: mom needs advice
« Reply #7 on: April 10, 2009, 07:19:10 PM »
Thank you all for your input and good wishes.  I will take all your suggestions with me and let you all know how we make out.  Thank you all hugs and kisses.     Jonnell and Jenna

lynnmarie219

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Re: mom needs advice
« Reply #8 on: April 11, 2009, 05:02:12 AM »
Good luck at Jenna's appointment this Monday...I wish her the best! And yes...please let us know what the doc has to say...I hope you can get some answers and relief from her symptoms.

Sending positive thoughts your way.....

Chickpea

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Re: mom needs advice
« Reply #9 on: April 11, 2009, 12:53:49 PM »
Hi Jonnell

Thinking about you this weekend and hoping that all goes well on Monday.  It sounds like you've got a useful list of Jenna's symptoms and questions ready.  Now all you need is a doctor willing to listen!

Take care - Chickpea

JannaLee

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Re: mom needs advice
« Reply #10 on: April 11, 2009, 04:17:08 PM »
I'm thinking of you and sweetie Jenna and hoping for your appointment to go well on Monday, dear Jonnell!

Please post back with us and let us know what he says.

Janna

jonnell

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Re: mom needs advice
« Reply #11 on: April 12, 2009, 05:42:38 AM »
Thinking of all of you and wishing all of you a Happy Easter    Love Jonnell and Jenna