Posted 4/18/2007 2:08 PM (GMT -7)
Hippi, there's nothing harder in the world than playing the waiting game, except maybe playing the waiting game when it relates to one of your kids. I agree with you about wanting a plan of action. But how can you get a plan from Josh's rheumy if you can't get in touch with him. You must be going out of your mind.

How can we help? I feel so helpless, but know that I'm here for you and that I'll be praying for you and Josh.

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, cymbalta, tramadol, lunesta, actonel, meridia, tricor, aciphex, multivitamin, calcium w vit D, fish oil, aspirin

Posted 4/18/2007 2:20 PM (GMT -7)
Hi hippi, wow sounds like your having a rough time. Boy when your kids are sicks it's so hard all you can think about is how to fix it. Plus the mind goes crazy with worry about the "what if?"
Don't be hard on yourself for sending him to school. Perhaps it was the best thing for him. Keeping his mind occupied with somthing else. We don't have the wisdom of solomon. All we can do is the best we can do.
It's good that Josh's doctor realizes her limitations. On the other hand if his rhumy is unavailable there is no excuse for that. If he is going to practice a specialized medicine he needs to either be there or at the very minimum have somewhere there that can make judgement calls.
If Josh is not improving than I would say you are right at looking elsewhere for the help you need for him. Possibly as you said the mayo clinic. It appears you are not getting the answers you need from his doctors now. I wouldn't put it off. I would suggest you take him where ever he needs to go to get the best possible treatment available. It's time to rock the boat! I know you are capable of doing that. Especialy when it comes to your children!
I already asked God to be with you and your family right now but I will continue to have you on my prayer change that the doors will be opened and you will get the answers you need.
 
God Bless
love
carol
God Bless
Carol
 
 Newly DX's Lupus.Possible CREST,COPD, high PB xanax,triam , Opana ER for pain, Evista for osteo,. oxygen Plaquanil400mil, . effexor. spiriva, xopenex.
 
Come ye, all that are weary and heavy laden, and I will give you rest!
 
 

Posted 4/18/2007 2:30 PM (GMT -7)
Des, Babs, Pat, and Carol thanks for your support. I'm still waiting.... and going out of my mind. At least Josh is home from school now and he made it through the day alright, although he said his legs hurt him all day, but he doesn't seem to be in as much pain as he did this morning. I think with Josh, he doesn't stop until the pain is unbearable. Pat, just being here and listening and all your support is just what I need and it helps so much. I've had that helpless feeling here too when I wanted so much to be able to do something for someone who was going through a rough time, like when things were so scary with your husband. Carol, I take it you picked up on my little bit of frustration with Josh's rheumy. He's been an alright doctor, but I agree that it's pretty bad that he hasn't gotten back to another doctor yet. I'm hoping I'll hear something around 5 when they should be done seeing patients for the day. Thank you all for the prayers and I'll keep everyone posted. Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985 Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg ; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops   Clickable:   LUPUS INFORMATION & LUPUS RESOURCES . Please allow HealingWell to continue helping others by donating: https://www.healingwell.com/donate/   Co-Moderator: Lupus and CFS Forums
Posted 4/18/2007 2:58 PM (GMT -7)
((((( Hippi )))))) I am so sorry that Josh is not feeling well, bless his heart. He sure has been through a lot to be so young and I couldn't imagine how this affects you. I sure hope his Ped Rheumy calls back soon and has some suggestions for you and Josh. I hope tomorrow will be a better day for him. Josh and the rest of the family is in my thoughts and prayers. ((((( Josh )))))
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (gluten sensitivity)2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
Meds:Imuran, Plaquenil, Flexeril, Sulindac, Levoxyl, Folic Acid and magic mouthwash (as needed)

Posted 4/18/2007 4:16 PM (GMT -7)
Thank you so much Stacie. The rheumy's nurse finally called back and I guess the two doctors have set up a time to talk on the phone tomorrow and go over the labs and what it all might mean. Someone is supposed to get back to me hopefully by noon tomorrow. For now we are increasing the Celebrex, using Tylenol and using heat. Lots of love and hugs to my HealingWell family. Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985 Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg ; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops   Clickable:   LUPUS INFORMATION & LUPUS RESOURCES . Please allow HealingWell to continue helping others by donating: https://www.healingwell.com/donate/   Co-Moderator: Lupus and CFS Forums
Posted 4/18/2007 5:34 PM (GMT -7)
I am glad to hear they called you back. I pray the increase in meds and heat helps him until they can figure things out. Please keep us posted (when you can) on how Josh is doing, bless his heart, it breaks my heart to know he is in that much pain. (((( Josh ))))
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (gluten sensitivity)2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
Meds:Imuran, Plaquenil, Flexeril, Sulindac, Levoxyl, Folic Acid and magic mouthwash (as needed)

Posted 4/18/2007 8:51 PM (GMT -7)
Hi Hippi,

I usually catch up at night....so sorry to read about this turn of events with Josh. If you end up needing to take him somewhere for another opinion here is a link to cut and paste into your browser. I guess they are supposed to have the best pediatric rheumatology program in the country. I hope you don't get anywhere near that point and by having this link you shouldn't. It's always when we're prepared that we don't need it, right??? http://www.cincinnatichildrens.org/about/news/release/2006/8-colbert-director.html

Take care of yourself....maybe right now isn't the best time to start the pred decrease.

xoxo emmie
</FONT>

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy

Posted 4/19/2007 2:18 AM (GMT -7)
Hi hippi, glad you finally heard back from the rhuemy's office. I'm sorry if I sounded so abrupt in my early response. I just get so frustrated with doctors that don't call back. I hope you don't have to wait long to hear back today.
Keeping your family in my prayers
carol
God Bless
Carol
 
 Newly DX's Lupus.Possible CREST,COPD, high PB xanax,triam , Opana ER for pain, Evista for osteo,. oxygen Plaquanil400mil, . effexor. spiriva, xopenex.
 
Come ye, all that are weary and heavy laden, and I will give you rest!
 
 

Posted 4/19/2007 4:04 AM (GMT -7)
hi hippimom so sorry to hear you are going through such a tough time , i hope these doctors get their acts together and do what they are supposed to do. i sure hope you are not feeling too unwell, and hope josh is feeling a bit better, i am in the u.k. scotland actually so the times we all get on the pc differ somewhat so i may get behind sometimes, however know that you and josh and your hubby are in my thoughts and prayers. xxx missusa
Posted 4/19/2007 4:48 AM (GMT -7)
Hippi,
  I hope the increase in meds and heat is helping Josh. Hopefully, his doctors can figure this out today in their talk and give you some idea of what is going on and a good treatment plan to help. Josh is in my thoughts and prayers as well as you.
                                                                      Babs
 Co-Mod: Lupus Forum
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
Meds:Arava,plavix,aspirin,protonix,gabitril,zanaflex,xanax,
mirapex,advair,foxamax,donnatal,folic acid.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Posted 4/19/2007 8:25 AM (GMT -7)
Thank you for the continued support. I want to acknowledge everyone, but I hope you can understand that I'm just really tired right now, but I do so much appreciate every one of you and your support. We had a very rough night last night. Poor Josh was in so much pain that he couldn't fall asleep and the tears would just stream out of his eyes. Everytime he would get close to falling asleep, the pain would wake him up. He finally got to sleep about 11. I kept him home from school and am waiting for the doctor's call. I'm really hoping it's his pediatrician who calls because she is so easy to talk to and she respects my thoughts and opinions. If it's the rheumy's office that calls I am going to make sure to ask the questions I have though, because I have a lot of them. emmi, thanks so much for the link. It's so important to have options and have somewhere good to go if needed. It does sound like a great place and we could get there if needed. Carol, you didn't sound too abrupt. I think when we care about each other, we get frustrated for each other and want to help out. I was frustrated too. I'll post again when I know more. At least Josh seems a little more comfortable today so far. Nights and mornings are the worst. Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985 Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg ; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops   Clickable:   LUPUS INFORMATION & LUPUS RESOURCES . Please allow HealingWell to continue helping others by donating: https://www.healingwell.com/donate/   Co-Moderator: Lupus and CFS Forums
Posted 4/19/2007 3:09 PM (GMT -7)
Well, I think things are starting to get figured out. The pediatrician called me this afternoon and took a lot of time to talk to me. She talked to the pediatric rheumy who really just brushed her off regarding the possibility of a history of rheumatic fever and strep causing the arthritis. So, she called one of the leading doctors at a children's hospital who works on difficult and complicated cases and gave him all of Josh's history and labs. He is in agreement that it sounds like Josh has a history of rheumatic fever and it needs to be treated. So, he is starting on long term antibiotic treatment and will have an appointment with a pediatiric cardiologist to make sure his heart has not been affected. We have to be very aware if he seems to be developing strep at any time because that could be dangerous for him. Now we have to decide if we want to stay with the pediatric rheumy or maybe see someone else regarding treating the arthritis. We could see that doctor at the childrens hospital or there is supposed to be a really good peds rheumy about 2 hrs away from us. The positive thing is that it is possible that in a year or so, if all of this gets treated successfully, Josh's arthritis may go away. Thank you all for being there for me. I can't tell you how much I appreciate it. Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985 Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg ; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops   Clickable:   LUPUS INFORMATION & LUPUS RESOURCES . Please allow HealingWell to continue helping others by donating: https://www.healingwell.com/donate/   Co-Moderator: Lupus and CFS Forums
Posted 4/19/2007 3:19 PM (GMT -7)
Oh hippi, I'm so glad you are getting some answers and some agressive treatment for your son. I know that has to be a releif . Just setting on your hands waiting for the phone call is excusiating. You already know what I think of the rheumy I think he must be related to mine! LOl. God forbid. but you know what is best.
Thank you for the update! Josh's arthritis might go away Heehaw that would be wonderful
This is the best news I've heard all day.
keep us informed
hugs and prayers
carol
God Bless
Carol
 
 Newly DX's Lupus.Possible CREST,COPD, high PB xanax,triam , Opana ER for pain, Evista for osteo,. oxygen Plaquanil400mil, . effexor. spiriva, xopenex.
 
Come ye, all that are weary and heavy laden, and I will give you rest!
 
 

Posted 4/19/2007 3:56 PM (GMT -7)
Hi Hippi:

I'm so sorry to hear that you've had such a hard time with Josh. I'm glad to hear that you may be down to the real reason why he has arthris. I had rheumatic fever when I was 17 and I didn't have heart damage. I'll be praying that all is well with Josh. I'm sorry I've not been here for you sooner, but as you know my daughter has been ill this week. I finally took her to the dr yesterday and let just say things may not be good.

I truly understand how difficult it is to worry about our kids. You and your entire family will be in my prayers. I'll try to stay in contact and see how both you and Josh are doing.

Love and hugs to you.

Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, MDS (Blood Cancer). Mediport and tons of meds.

Posted 4/19/2007 4:10 PM (GMT -7)
HI Hippi, I am glad you are beginning to get some answers. It would be wonderful if Josh's arthritis went away after this treatment plan is put into place, we will be praying for that to happen! I hope he is able to sleep better tonight, your family continues to be in my prayers.
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (gluten sensitivity)2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
Meds:Imuran, Plaquenil, Flexeril, Sulindac, Levoxyl, Folic Acid and magic mouthwash (as needed)

Posted 4/19/2007 4:29 PM (GMT -7)
Though hearing the news about Josh is not a plesant thing, but at least now the air is clear up and you know what happened to it. I hope that Josh will be okay, and that the treatment will help Josh and the arthritis will go away.
Posted 4/19/2007 7:56 PM (GMT -7)
Oh, Hippi, if I am reading this right, could this kind of be a blessing in disguise kind of thing. (I'm very tired and the encephalopathy stuff plus fatigue gets me confused easily so forgive me if I am being dopey and offensive. I really don't mean to be and usually when I'm like this I just don't post but I'm so excited that maybe this means a really aggresive treatment might get rid of Josh's JRA that I can't wait!)

xoxo emmie
</FONT>

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy

Posted 4/22/2007 2:33 PM (GMT 0)
Hippi,
  It sounds like you are finally getting some answers and treatment for Josh. Is he feeling any better since your last post? Also, how is your flare? I'm sure the stress and worry isn't helping you to get better...((Hugs)). You both continue to be in my thoughts and prayers.
                                                                 Babs
 Co-Mod: Lupus Forum
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
Meds:Arava,plavix,aspirin,protonix,gabitril,zanaflex,xanax,
mirapex,advair,foxamax,donnatal,folic acid.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Posted 4/22/2007 3:23 PM (GMT -7)
Hi Hippi.  I'm still just reading posts sporatically, so I'm just now reading about the terrible pain Josh is having.  Bless his heart and yours too!  My daughter had a 106 degree fever once, but she never had such awful pain like Josh.  That's really rough.  I hope the antibiotics work soon.  ((Hugs))
Dx: SLE with CNS complications, major depressive disorder, Sjogrens, fibromyalgia, asthma, gerd, sleep apnea, hypertension, IBS
Tx: plaquenil, methotrexate, prozac, lamectil, flexeril, celebrex, lisinopril, lipitor, nexeum, seroquel, advair, actos, arthritis tylenol 
supplements: multi vitamin, B complex, C, flaxseed oil
             Better living through chemistry :D    Donna
 

Posted 4/22/2007 4:44 PM (GMT -7)
Hi hippi--
I'm so sorry to hear what you and Josh have been going through. It's terrible to see your child suffering. I'm kind of mad at the docs that they didn't do more to relieve his pain. Being in severe pain alot can have a negative effect on body chemistry I think. But I'm so glad that there is a chance that he could be rid of the arthritis altogether and that he has a treatable condition and they are going to move on it. That would be so wonderful. I wish he wouldn't have had to get so sick but maybe now the docs can see what they need to do and get him well. I'm so happy for him and for you. I understand you're tired from everything and know you have my prayers and don't have to respond. Just let us know.
Marji

"...brain, what is brain?"
--Kara, one of the "givers of pain and delight", aka woman of Sigma Draconis VI, "Spock's Brain" episode 56 season 3 of Star Trek--I'm not a trekkie but this one was funny!

Posted 4/22/2007 4:50 PM (GMT -7)
Thanks for the continued support and prayers. Josh still has severe pain at night and in the mornings but his days are slowly getting better. The pediatric rheumy did call in some tramadol for when his pain gets really bad because I couldn't stand to stay up with him at night watching him cry in agony. The tramadol has helped lessen the pain at night so he can get some sleep. We'll go back to the pediatrician in about 5-6 weeks to get labs done again. I'm anxious to see the pediatric cardiologist to make sure Josh's heart is okay. Baseball season is starting and I'm a little nervous. Thank you to all of you again Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985 Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg ; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops   Clickable:   LUPUS INFORMATION & LUPUS RESOURCES . Please allow HealingWell to continue helping others by donating: https://www.healingwell.com/donate/   Co-Moderator: Lupus and CFS Forums
Posted 4/22/2007 5:14 PM (GMT -7)
Hippi,
  Thanks for updating us. I'm sure you aren't feeling very well yourself...((Hugs)). I hope things start to turn around for you and josh soon. I can imagine you are overwhelmed right now with josh being in so much pain and you flaring as well. Please rest as much as you can and take care. You, Josh and the rest of your family are in my thoughts and prayers.
                                                                   Babs
 Co-Mod: Lupus Forum
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
Meds:Arava,plavix,aspirin,protonix,gabitril,zanaflex,xanax,
mirapex,advair,foxamax,donnatal,folic acid.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

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