Jenna is back from Dupont

[jonnell]

Hi guys well Jenna is back from her appointment.  She is officially the childrens hospitals youngest sjogrens patient ever(they say that like its a good thing)  Her Rhumy has decided to put Jenna on Plaquenil and increased her naproxen to a 250 mg tablet.  She tested positive for all the symptoms of Asthma so now we have been referred to a Allergist.  She also needs to have visual field testing done every 6 months because of being put on Plaquenil.  Her red and raw vjayjay is from the sjs no infection.  We can use vasaline for that.  Her Rhumy believes the headaches and belly aches are all from the mucus and sinus and Asthma.  The body aches and tender scalp and rash are all from the sjs.  We return in 6 months to see if she has made any improvements.  They feel that a flovent inhaler and albuterol will help with the asthma and sinus infections.  So now we are making appointments to the allergist the dentist and the ophthalmologist.  Oh and the dermey for the warts.  You guys have all been so caring and knowledgeable and helped me with questions for the doctor.  I thank all of you.  Hugs and Kisses Jonnell and Jenna

[Chickpea]

Hi Jonnell

Thanks so much for posting and giving us the news of Jenna's appointment.  It sounds as though the rheumy was really thorough and addressed all Jenna's symptoms.  It also shows how thoroughly you had prepared for the visit - what a wonderful mummy you are!  And probably a very exhausted one too.

You must be feeling such a mixture of feelings right now.  You sound relieved to have a definite diagnosis, but also a bit overwhelmed by all the follow-ups to organise.  We're here when you need us so don't hesitate to ask any questions you have.  You've probably read lots on the message boards about introducing Plaquenil really slowly, half a tablet or even less at a time over a few weeks.  And always with food, especially yogurt. 

Have a rest now and take good care of your dear self.

Thinking of you - Chickpea

[harrigan]

So glad you are feling supported and got some answers Jonnell - well done to you both for sticking with it!  Lots of love to ou both xx Ailsa

[JannaLee]

I think it a real good thing they are so "enthused" about Jenna's case.  Better she is unusual to them so she sticks in their mind and thinking.  This notoriety could help her get the very best care that she needs.

Dearheart, I wish we could be with you today to give hugs and 'eye to eye' encouragement.

So grateful God gave you to Jenna,
Janna

PS Chickpea is right about taking care of your dear self!

[jonnell]

Thank all of you for caring about Jenna and I.  Hugs and Kisses

[wednesday mc haggis]

jonnell

  so glad it went well and they gave you and jenna some answers ans some meds to help her get some relief, i agree its not great being the youngest ever, but it will mean they will be extra thorough and that cant be a bad thing, alot to take in, but i alwasy think the not knowing whats causing things is so much worse, well is for me anyways, hope she is not too shattered by the trip and getting some relief from the new drugs, ok planequil will take time to work, but least she is getting some meds , and your getting some answers.

thanks for keeping us up to date, we all think of her and you and though its not great she has anything at all, its good t hear something is being done to give her some relief, thoughts as always with both of you

T x

[lynnmarie219]

Hi Jonnell!

Thanks for updating us on little Jenna.....does she get some kind of award for being the youngest patient they have with sjogrens? I think if she has to go through all of this...she surely deserves something special!  It is good as the others said that she at least has a diagnosis.... it would be better if she didn't have to deal with this at all....but at least now you know for sure what you are dealing with and she has been started on treatment early so this will all be in her favor!


It sounds like you have a great rheumy that is truly on the  ball.....Jenna is on the right path with all of the follow up appts. Hugs to you for being so prepared and supporting....she is lucky to have you on her side!

[KYMOM]

Jonnell, Thank you for the update on Jenna.  Sorry about the asthma diagnosis.  As I related to you before, my sixteen year old daughter had asthma from the time she was a baby.  The good news is that with asthma, unlike Sjogren's, they can outgrow the symptoms and the need for meds.  At one time my daughter was on five meds daily.  For the past year she has been med free and breathing fine.  Good luck to you and Jenna and let us know how the new appt goes.  FYI, we went to a pediatric pulmonologist for the asthma not a allergist.  They would check her lung function at each appt. and check how she was doing on her meds.  Roxanne

[jonnell]

KYMom,  I hope she does outgrow it.  Our Rhumy told us that she is not allowed to prescribe the medicine Jenna needs until she has a full work up by a allergist or pulmonary doctor to see how bad the asthma is.  I wish it were that easy lol.  Thats the thing with sjs I guess you have so many doctors.  Jenna has a PCD, Rhumy, Dentist, Eye doctor might as well add a asthma doctor.  It would be nice if they would just make a SJS doctor for everything lol.  But that would be to easy.  Thanks to all of you for your support.    Hugs and Kisses  Jonnell and Jenna

[Calli66]

Could you tell us how the doctor is figuring out the dose for the Plaquenil? I know the "usual" full dose for an adult of 135 lb is 400 mg per day, and I was wondering how much a child would take per day.

Thanks

Calli

[jonnell]

Cali,  Jenna is 68 lbs and she is on 100miligrams per day to start to see how she handles the drug.  Jenna is allergic to penicillin and sulfa drugs so her rhumy wants to make sure she doesnt have a reaction.      Jonnell