Guest guest Posted April 22, 2006 Report Share Posted April 22, 2006 How are they acting? I know they are sick, but are they alert? If they are crying, do you see tears? Does the baby have a sunken fontanelle? Any other signs of dehydration (dry lips, etc)? How is their urine output? If they have urinated, how dark is the urine? If you see ANY signs of dehydration, I would bring them to the ER. Do you have a nurse on call that you can get in touch with? Our ped has this-and it can't hurt to call the ped-they will ask the proper questions to better determine what needs to be done. Sending thoughts and prayers your way. Please keep us posted. ~Pattie~ " What matters is not great deeds, but great love. " ~ St. Therese of Lisieux Family website: www.shwachman.50megs.com I know this is totally not related to PID, but both my kids have been vomiting tonight. This is a new thing for us - we are mostly respiratory/ears/sinus issues. My son (34 months) has vomited 4 times in the past 2 hours and my daughter (8 months) has vomited 2 times in the past hour. How much longer should I wait until I bring them to the ER? Both kids have immune issues - does that matter when it comes to stuff like this? I've been giving them fluids - slowly - but it keeps coming back up. WWYD? Thanks for helping out. Stefani ( _____ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2006 Report Share Posted April 23, 2006 I know you wrote this yesterday, but I thought I'd check in case the kids still weren't doing great. We went through this last week, actually I'm still recovering myself! We took two of the kids to the ER due to how sick they seemed (vomiting for hours, fevers of 102, crying in pain). The ER did not want to do anything, the doc kept telling us it was just a virus, and our Ped told the doc to just treat them like any other kids. They eventually gave them IV fluids, Zofran, Phenergan, Motrin and Tylenol and they started doing better after several hours. A few days later when our ID and Immuno found out they were not happy that we didn't get a CBC and blood culture (and potentially a dose of Rocephin if anything was off on the CBC). If you are going to go, I would request those tests too, along with blood electrolytes to see if anyone is dehydrated. However, from what I've heard, this is going around like crazy! Everyone I talk to has had it recently, no matter what part of the country they are in. Good luck, I hope everyone is better soon! Mom to Conner (11, possible combined immune deficiency, Asperger's, mild CP, partial seizures, asthma, GERD, Hashimoto's disease and resolved adrenal insufficiency), Hayden (11, unknown PID, PDD-NOS, IBS and moderate hearing loss/aided), Evan (11, unknown PID, asthma and mild hearing loss/unaided), and Kelsey - (10, unknown PID, asthma) Please visit us at www.caringbridge.org/in/connersmith >From: ivygirlz@... >Reply- > >Subject: WWYD? >Date: Sat, 22 Apr 2006 20:53:59 EDT > >I know this is totally not related to PID, but both my kids have been >vomiting tonight. This is a new thing for us - we are mostly >respiratory/ears/sinus issues. My son (34 months) has vomited 4 times in >the past 2 hours and my >daughter (8 months) has vomited 2 times in the past hour. How much longer >should I wait until I bring them to the ER? >Both kids have immune issues - does that matter when it comes to stuff like >this? >I've been giving them fluids - slowly - but it keeps coming back up. >WWYD? >Thanks for helping out. >Stefani > (http://www.baby-gaga.com/) > > (http://www.baby-gaga.com/) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2007 Report Share Posted December 12, 2007 Stacey, Call the Rhuemy and contact the Eye Dr to have them talk over what to do with Jordan. Robbin **************************************See AOL's top rated recipes (http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2007 Report Share Posted December 12, 2007 : I would call the rheumy and let him know about the eye flare. Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines Sending prayers & happy thoughts, Beth :-) WWYD? We just got back from Jordan's eye exam. Her right eye has flared up and her left has a few trace cells. She just had her regular rheumy appt. 3 weeks ago. Because her eye exam before that appt. had been clear her rheumy decided not to change her medication or dose but she did want to do a joint injection. When we went for the injection she told us to come back in 2 months. Now that her eyes have flared should I call and see if she wants to see Jordan sooner? She mentioned switching Jordan to something else or doing injections but since her eyes were ok at the time she felt the joint injection would be best and it has helped her knee a lot Today I was told if the uveitis doesn't get under control we would need to start worrying about cataracts. NOT what I wanted to hear even though I knew it was possible. We're doing prednisone drops once an hour starting today and tapering off over the next 2 weeks. Thank!! Stacey, Jordan, 5 pauci & uveitis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2007 Report Share Posted December 12, 2007 Stacey - Do you see a pediatric eye doc? I only ask b/c drops every hour seems pretty aggressive if her eyes were clear last appointment. Anyway's - I would call your rheumy and let her know the results. My guess is they will want to start Methotrexate. Your rheumy doesn't need to see Jordan, but a call is definitely necessary. She may not see you any sooner if it's only her eyes having trouble. Make sure your doc's are talking to each other. We definitely don't see our rheumy as often as our eye doc. Most times they email or call each other and then let me know what they decided.... Good luck and I am sorry about the flare. If it gives you any comfort, Caroline has been on Pred Forte and oral Prednisone for FOUR years now and only recently developed a cataract. Her flares have been a 4+ more times than I can count and we have had steroid injections into the eyes three times also. Not that you want to go down that road, but I wanted to let you know it was a long time before that cataract showed up for us... Alia and Caroline, age 5, poly and uveitis WWYD? We just got back from Jordan's eye exam. Her right eye has flared up and her left has a few trace cells. She just had her regular rheumy appt. 3 weeks ago. Because her eye exam before that appt. had been clear her rheumy decided not to change her medication or dose but she did want to do a joint injection. When we went for the injection she told us to come back in 2 months. Now that her eyes have flared should I call and see if she wants to see Jordan sooner? She mentioned switching Jordan to something else or doing injections but since her eyes were ok at the time she felt the joint injection would be best and it has helped her knee a lot Today I was told if the uveitis doesn't get under control we would need to start worrying about cataracts. NOT what I wanted to hear even though I knew it was possible. We're doing prednisone drops once an hour starting today and tapering off over the next 2 weeks. Thank!! Stacey, Jordan, 5 pauci & uveitis ________________________________________________________________________ More new features than ever. Check out the new AOL Mail ! - http://webmail.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2007 Report Share Posted December 12, 2007 I'm going to call in the morning just so she knows what's going on. Honestly I don't know if our eye dr. is an actual pediatric ophthalmologist. When she was first diagnosed we were sent to this dr. and he is great with her so I never thought twice about it. Her last visit 6 weeks ago was the first time she had been totally clear in months. Jordan was started on MTX about 3 months ago and we thought it was helping her eyes but I guess it's not doing as well as we were hoping. I know we really don't need to worry about cataracts just yet but I just hate the thought. She's been having uveitis flares for a little over 2 years now and it seems like they're getting worse as she gets older Stacey, Jordan, 5, pauci & uveitis > > Stacey - Do you see a pediatric eye doc? I only ask b/c drops every hour seems pretty aggressive if her eyes were clear last appointment. Anyway's - I would call your rheumy and let her know the results. My guess is they will want to start Methotrexate. Your rheumy doesn't need to see Jordan, but a call is definitely necessary. She may not see you any sooner if it's only her eyes having trouble. Make sure your doc's are talking to each other. We definitely don't see our rheumy as often as our eye doc. Most times they email or call each other and then let me know what they decided.... > > Good luck and I am sorry about the flare. If it gives you any comfort, Caroline has been on Pred Forte and oral Prednisone for FOUR years now and only recently developed a cataract. Her flares have been a 4+ more times than I can count and we have had steroid injections into the eyes three times also. Not that you want to go down that road, but I wanted to let you know it was a long time before that cataract showed up for us... > > Alia and Caroline, age 5, poly and uveitis > > > WWYD? > > > > > > > We just got back from Jordan's eye exam. Her right eye has flared up > and her left has a few trace cells. She just had her regular rheumy > appt. 3 weeks ago. Because her eye exam before that appt. had been > clear her rheumy decided not to change her medication or dose but she > did want to do a joint injection. When we went for the injection she > told us to come back in 2 months. Now that her eyes have flared should > I call and see if she wants to see Jordan sooner? She mentioned > switching Jordan to something else or doing injections but since her > eyes were ok at the time she felt the joint injection would be best and > it has helped her knee a lot > > Today I was told if the uveitis doesn't get under control we would need > to start worrying about cataracts. NOT what I wanted to hear even > though I knew it was possible. We're doing prednisone drops once an > hour starting today and tapering off over the next 2 weeks. > > Thank!! > > Stacey, > Jordan, 5 pauci & uveitis > > > > > > ______________________________________________________________________ __ > More new features than ever. Check out the new AOL Mail ! - http://webmail.aol.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2007 Report Share Posted December 12, 2007 The most important thing is that your doc is an uveitis/iritis specialist. It's a very tricky disease as you know... Your MTX might need to be increased as it's probably not working at that dosage. There are many other things to try - IVIG, Remicade, Oral Prednisone, Cyclosporine, etc., etc. So, there are a lot more options. One thing that has worked for us that you might want to consider are the kenalog injections. They sound scary and carry some risks, but each one has killed the flare in Caroline's eyes pretty quickly. They can last from 3-12 months and are a good alternative to the constant drops. You can also check out Dr. 's website at uveitis.org. He is considered one of the best Uveitis specialists in the world and has done amazing things with patients.... Alia and Caroline, age 5, poly and uveitis WWYD? > > > > > > > We just got back from Jordan's eye exam. Her right eye has flared up > and her left has a few trace cells. She just had her regular rheumy > appt. 3 weeks ago. Because her eye exam before that appt. had been > clear her rheumy decided not to change her medication or dose but she > did want to do a joint injection. When we went for the injection she > told us to come back in 2 months. Now that her eyes have flared should > I call and see if she wants to see Jordan sooner? She mentioned > switching Jordan to something else or doing injections but since her > eyes were ok at the time she felt the joint injection would be best and > it has helped her knee a lot > > Today I was told if the uveitis doesn't get under control we would need > to start worrying about cataracts. NOT what I wanted to hear even > though I knew it was possible. We're doing prednisone drops once an > hour starting today and tapering off over the next 2 weeks. > > Thank!! > > Stacey, > Jordan, 5 pauci & uveitis > > > > > > __________________________________________________________ __ > More new features than ever. Check out the new AOL Mail ! - http://webmail.aol.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2007 Report Share Posted December 12, 2007 Hi Stacey, Is your eye dr. an uveitis specialist? I would email both the uveitis specialist and rheumie, and give a quick update about what was found, then ask what the next step should be. Pred forte' every hour is an aggressive approach to fire hose the inflammation, and I applaud your eye dr. in doing this. The fire hosing period is the time that Dr. uses to change meds or increase the dose with a goal of tapering the pred slowly, once the right combination was found. It takes around 850 drops of pred to see the beginning film of a cataract (may be off a bit, hard to remember). When pred is needed it is a God send, it just should never be a staple. Try not to worry about that. The systemic absorption of pred forte being used every hour is something similar to taking 10 mg of pred orally. If you squeeze both sides of the nose, near the eyes (puntual plug) it will help to stop the pred being absorbed systemically, and just keep it in the eye area. It should also help keep the taste of the pred out of his mouth. If you are using the generic version of pred forte', you need to shake the bottle for a good minute before using it. If you don't do this, you don't get the bang for your buck. If your doctors don't communicate by email, then I would get on the phone and get them to communicate with each other, and make an appointment with the rheumie to update his plan of attack. Lots of meds out there, and sometimes all they need is an increase in the dose to get it working again. ' & a 12 jia/uveitis stacey <socalmomma@...> wrote: We just got back from Jordan's eye exam. Her right eye has flared up and her left has a few trace cells. She just had her regular rheumy appt. 3 weeks ago. Because her eye exam before that appt. had been clear her rheumy decided not to change her medication or dose but she did want to do a joint injection. When we went for the injection she told us to come back in 2 months. Now that her eyes have flared should I call and see if she wants to see Jordan sooner? She mentioned switching Jordan to something else or doing injections but since her eyes were ok at the time she felt the joint injection would be best and it has helped her knee a lot Today I was told if the uveitis doesn't get under control we would need to start worrying about cataracts. NOT what I wanted to hear even though I knew it was possible. We're doing prednisone drops once an hour starting today and tapering off over the next 2 weeks. Thank!! Stacey, Jordan, 5 pauci & uveitis --------------------------------- Never miss a thing. Make your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2007 Report Share Posted December 13, 2007 Hi - You can go to Uveitis.org and ask Dr. a question. He always answers within a day. I have done this a lot in the past just to get reassurance that what my opth has done is what he would do. If you haven't done this already I would ask your opth if he has many cases of uveitis that he works with. Our first opth that we went to only knew of pred forte drops as a cure for uveitis. Luckily he finally told us that he didn't want to see Grant anymore and referred us on to a Ped Opth. Our Ped Opth isn't a uveitis specialist but has a lot more experience with this. Being able to ask Dr. general questions has helped me alot. This won't help now but our Rheumy has told us that he would like to see us within 2-3 weeks after we have seen the Opth. That way he will know what is going on with the eyes and be able to make changes if needed. I know how frustrating this can be. You worry about using too much pred forte but also know that if you don't use it, damage can be done as well. Grant has a cataract from inflammation that when undetected. We have no idea how long it was inflammed or how often. Keep us posted! & Grant, 10/PsA/Uveitis -- In , " stacey " <socalmomma@...> wrote: > > We just got back from Jordan's eye exam. Her right eye has flared up > and her left has a few trace cells. She just had her regular rheumy > appt. 3 weeks ago. Because her eye exam before that appt. had been > clear her rheumy decided not to change her medication or dose but she > did want to do a joint injection. When we went for the injection she > told us to come back in 2 months. Now that her eyes have flared should > I call and see if she wants to see Jordan sooner? She mentioned > switching Jordan to something else or doing injections but since her > eyes were ok at the time she felt the joint injection would be best and > it has helped her knee a lot > > Today I was told if the uveitis doesn't get under control we would need > to start worrying about cataracts. NOT what I wanted to hear even > though I knew it was possible. We're doing prednisone drops once an > hour starting today and tapering off over the next 2 weeks. > > Thank!! > > Stacey, > Jordan, 5 pauci & uveitis > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2007 Report Share Posted December 13, 2007 Well I just got off the phone with Jordan's rheumy and she's going to call the optho. and then she'll get back to me. She did say that we'll be changing something. I don't know if she'll up the MTX or switch her to something else. What else is there other then going to an injectable? All of this is just bad timing right now. We can't afford a new medication I'm going to wait and see what Dr. Brown has to say and then I plan on emailing Dr. . I'm mad because Jordan wasn't on any oral medication for about 10 months. It took us forever to get her into see a rheumy when our insurance switched at the beginning of the year. I was fighting like mad to get her in but they said they didn't have her records from her ped. (which were faxed over about 3 or 4 times) so she couldn't be seen. She was still seeing her optho. all that time but her eyes were never really clear and I do believe if she had been on something she wouldn't have been as bad as she was. Stacey, Jordan, 5, pauci & uveitis > > > > We just got back from Jordan's eye exam. Her right eye has flared > up > > and her left has a few trace cells. She just had her regular > rheumy > > appt. 3 weeks ago. Because her eye exam before that appt. had been > > clear her rheumy decided not to change her medication or dose but > she > > did want to do a joint injection. When we went for the injection > she > > told us to come back in 2 months. Now that her eyes have flared > should > > I call and see if she wants to see Jordan sooner? She mentioned > > switching Jordan to something else or doing injections but since > her > > eyes were ok at the time she felt the joint injection would be > best and > > it has helped her knee a lot > > > > Today I was told if the uveitis doesn't get under control we would > need > > to start worrying about cataracts. NOT what I wanted to hear even > > though I knew it was possible. We're doing prednisone drops once > an > > hour starting today and tapering off over the next 2 weeks. > > > > Thank!! > > > > Stacey, > > Jordan, 5 pauci & uveitis > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2007 Report Share Posted December 13, 2007 Stacey, The financial stuff on the end of this isn't easy either, but the methotrexe is very in expensive.....I hope that helps. ________________________________ From: [mailto: ] On Behalf Of stacey Sent: Thursday, December 13, 2007 1:54 PM Subject: Re: WWYD? Well I just got off the phone with Jordan's rheumy and she's going to call the optho. and then she'll get back to me. She did say that we'll be changing something. I don't know if she'll up the MTX or switch her to something else. What else is there other then going to an injectable? All of this is just bad timing right now. We can't afford a new medication I'm going to wait and see what Dr. Brown has to say and then I plan on emailing Dr. . I'm mad because Jordan wasn't on any oral medication for about 10 months. It took us forever to get her into see a rheumy when our insurance switched at the beginning of the year. I was fighting like mad to get her in but they said they didn't have her records from her ped. (which were faxed over about 3 or 4 times) so she couldn't be seen. She was still seeing her optho. all that time but her eyes were never really clear and I do believe if she had been on something she wouldn't have been as bad as she was. Stacey, Jordan, 5, pauci & uveitis > > > > We just got back from Jordan's eye exam. Her right eye has flared > up > > and her left has a few trace cells. She just had her regular > rheumy > > appt. 3 weeks ago. Because her eye exam before that appt. had been > > clear her rheumy decided not to change her medication or dose but > she > > did want to do a joint injection. When we went for the injection > she > > told us to come back in 2 months. Now that her eyes have flared > should > > I call and see if she wants to see Jordan sooner? She mentioned > > switching Jordan to something else or doing injections but since > her > > eyes were ok at the time she felt the joint injection would be > best and > > it has helped her knee a lot > > > > Today I was told if the uveitis doesn't get under control we would > need > > to start worrying about cataracts. NOT what I wanted to hear even > > though I knew it was possible. We're doing prednisone drops once > an > > hour starting today and tapering off over the next 2 weeks. > > > > Thank!! > > > > Stacey, > > Jordan, 5 pauci & uveitis > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2007 Report Share Posted December 13, 2007 I think that the mtx injection is just the next step in the process. That is where we are at right now. Grant is on oral mtx and if his eyes aren't clear next tuesday they are going to switch to the injection form. & Grant, 10/PsA/Uveitis > > > > > > We just got back from Jordan's eye exam. Her right eye has flared > > up > > > and her left has a few trace cells. She just had her regular > > rheumy > > > appt. 3 weeks ago. Because her eye exam before that appt. had > been > > > clear her rheumy decided not to change her medication or dose but > > she > > > did want to do a joint injection. When we went for the injection > > she > > > told us to come back in 2 months. Now that her eyes have flared > > should > > > I call and see if she wants to see Jordan sooner? She mentioned > > > switching Jordan to something else or doing injections but since > > her > > > eyes were ok at the time she felt the joint injection would be > > best and > > > it has helped her knee a lot > > > > > > Today I was told if the uveitis doesn't get under control we > would > > need > > > to start worrying about cataracts. NOT what I wanted to hear even > > > though I knew it was possible. We're doing prednisone drops once > > an > > > hour starting today and tapering off over the next 2 weeks. > > > > > > Thank!! > > > > > > Stacey, > > > Jordan, 5 pauci & uveitis > > > > > > Quote Link to comment Share on other sites More sharing options...
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