Carol in Cal. Posted July 6, 2023 Share Posted July 6, 2023 I’m so sorry to hear this. It sounds like he is in the best possible hands now. Praying for you both. 1 Quote Link to comment Share on other sites More sharing options...
Vintage81 Posted July 6, 2023 Share Posted July 6, 2023 I’m so sorry…I hope he’s ok 😕 1 Quote Link to comment Share on other sites More sharing options...
Hannah Posted July 6, 2023 Share Posted July 6, 2023 Thinking of your son and you Melissa and hoping for the best 1 Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted July 6, 2023 Share Posted July 6, 2023 2 hours ago, wintermom said: So scary! I'm even more impressed with my local pharmacy, where there is a consult with an actual pharmacist with any new prescription. I won't be changing pharmacies any time soon! It's generally the law every where that pharmacist's consult when dispensing. They consult mostly to answer questions and clarify instructions. But in a hospital rx are prepared daily and sent straight to the nurse's station. Both cases, software matters. 3 Quote Link to comment Share on other sites More sharing options...
stephanier.1765 Posted July 6, 2023 Share Posted July 6, 2023 I'm so glad they were able to nail down the reason for his illness. Poor little dude! I hope he heals fully and quickly for all of your sakes. 1 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted July 6, 2023 Author Share Posted July 6, 2023 We have finally made it to the children's hospital in Melbourne came by plane and they were able to squeeze me in. Have been seen by nurses but not a doctor yet at the children's hospital. It was an actual pharmacist who filled his prescription. The pharmacist told me it was his error I don't have much charge on my phone left 35 Quote Link to comment Share on other sites More sharing options...
Eos Posted July 6, 2023 Share Posted July 6, 2023 Glad you are there, holding your family in the Light. 1 Quote Link to comment Share on other sites More sharing options...
mommyoffive Posted July 6, 2023 Share Posted July 6, 2023 I am so glad you are there. I hope the new doctors and nurses have a good care plan. I will be thinking of your kiddo. Sending all the good thoughts. 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted July 6, 2023 Author Share Posted July 6, 2023 Just saw first doctor. He said there is no antidote, it is mostly monitoring and seeing how he goes. 38 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted July 6, 2023 Author Share Posted July 6, 2023 Thank you everyone for your prayers and positive thoughts 15 Quote Link to comment Share on other sites More sharing options...
Pawz4me Posted July 6, 2023 Share Posted July 6, 2023 (edited) I don't know what kind of damage they suspect, but FWIW -- DH's ALT and AST have been close to eight times the upper limit of normal due to a cancer medication he was on. His liver recovered just fine. In fact from what we understand most oncologists don't really bat an eye until the liver counts reach five times normal. Of course things might be different with a kiddo, but I'm posting that in case it gives you some comfort. Edited July 6, 2023 by Pawz4me 7 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted July 6, 2023 Author Share Posted July 6, 2023 The medication is griseofulvin Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted July 6, 2023 Author Share Posted July 6, 2023 I am getting the idea that they are way way more concerned about his skin rash and some syndrome that I didn't catch the name of than his liver 14 Quote Link to comment Share on other sites More sharing options...
saraha Posted July 6, 2023 Share Posted July 6, 2023 Said a prayer for your poor kid, and for mama too 1 Quote Link to comment Share on other sites More sharing options...
annandatje Posted July 6, 2023 Share Posted July 6, 2023 Lighting a candle for you and your son. Please keep us posted. Hopefully the liver may eventually heal itself. 1 Quote Link to comment Share on other sites More sharing options...
wintermom Posted July 6, 2023 Share Posted July 6, 2023 18 minutes ago, Melissa in Australia said: I am getting the idea that they are way way more concerned about his skin rash and some syndrome that I didn't catch the name of than his liver I hope that he recovers from the rash quickly. So scary! Big hugs to you all. 1 Quote Link to comment Share on other sites More sharing options...
fraidycat Posted July 6, 2023 Share Posted July 6, 2023 So scary! Sending him healing vibes, and supportive hug vibes to you. I hope he recovers fully with no permanent damage. 1 Quote Link to comment Share on other sites More sharing options...
rebcoola Posted July 6, 2023 Share Posted July 6, 2023 I'm so sorry and am praying for him and all of you. 1 Quote Link to comment Share on other sites More sharing options...
Drama Llama Posted July 6, 2023 Share Posted July 6, 2023 35 minutes ago, Melissa in Australia said: I am getting the idea that they are way way more concerned about his skin rash and some syndrome that I didn't catch the name of than his liver I am so glad you made it there safely, and that they let you fly with him. It sounds like they are concerned about Stevens-Johnson syndrome. Does that sound right? I don't have direct experience with it, but I had a student with it, and there was another child with it on the same hospital unit as my son. It's also something they warn you to look out for with certain medications. It is a pretty scary thing, but it sounds as though they are on top of it. My student made a full recovery, and the child in the hospital seemed to recover well, although I didn't know the family well enough to follow up after they went home. Hopefully you will have the same outcome! I am so sorry you're in this situation. 10 1 Quote Link to comment Share on other sites More sharing options...
TexasProud Posted July 6, 2023 Share Posted July 6, 2023 Praying for you! 1 Quote Link to comment Share on other sites More sharing options...
kbutton Posted July 6, 2023 Share Posted July 6, 2023 1 hour ago, Melissa in Australia said: We have finally made it to the children's hospital in Melbourne came by plane and they were able to squeeze me in. Have been seen by nurses but not a doctor yet at the children's hospital. It was an actual pharmacist who filled his prescription. The pharmacist told me it was his error I don't have much charge on my phone left Don't be afraid to ask for a way to plug your phone in when the dust settles a bit--they are used to people needing things like than in an emergency and will probably be really nice about it. I'm glad that the pharmacist owned up. I bet he's miserable about this. 33 minutes ago, BandH said: It sounds like they are concerned about Stevens-Johnson syndrome. Does that sound right? It sounds like they are on the right track. Praying for you both as well as the folks at home waiting. Hugs. 9 1 Quote Link to comment Share on other sites More sharing options...
SanDiegoMom Posted July 6, 2023 Share Posted July 6, 2023 Sending healing thoughts to your dc❤️ 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted July 6, 2023 Author Share Posted July 6, 2023 56 minutes ago, BandH said: I am so glad you made it there safely, and that they let you fly with him. It sounds like they are concerned about Stevens-Johnson syndrome. Does that sound right? I don't have direct experience with it, but I had a student with it, and there was another child with it on the same hospital unit as my son. It's also something they warn you to look out for with certain medications. It is a pretty scary thing, but it sounds as though they are on top of it. My student made a full recovery, and the child in the hospital seemed to recover well, although I didn't know the family well enough to follow up after they went home. Hopefully you will have the same outcome! I am so sorry you're in this situation. Yes that was the name, that or possably Toxic epidermal necropsy They are also testing for things like Rubella just to keep an open mind 7 Quote Link to comment Share on other sites More sharing options...
Junie Posted July 6, 2023 Share Posted July 6, 2023 Praying for your dear little one. 1 Quote Link to comment Share on other sites More sharing options...
Drama Llama Posted July 6, 2023 Share Posted July 6, 2023 7 minutes ago, Melissa in Australia said: Yes that was the name, that or possably Toxic epidermal necropsy They are also testing for things like Rubella just to keep an open mind I hope you get good news soon! Children's hospitals are amazing places. They can work miracles. 4 1 Quote Link to comment Share on other sites More sharing options...
SKL Posted July 6, 2023 Share Posted July 6, 2023 So sorry that happened! Sending prayers and good thoughts for both of you. I trust he is in the best hands. 1 Quote Link to comment Share on other sites More sharing options...
Mrs Tiggywinkle Again Posted July 6, 2023 Share Posted July 6, 2023 SJS can be bad but it sounds like if that’s what it is, it’s been caught early and they can help. I’m sending all my good thoughts. 4 1 Quote Link to comment Share on other sites More sharing options...
kbutton Posted July 6, 2023 Share Posted July 6, 2023 (edited) 21 minutes ago, Melissa in Australia said: Yes that was the name, that or possably Toxic epidermal necropsy I googled because DH is on his way out the door to work (he's talked to me about this before because people come into the ER now and then with S-J Syndrome), but it sounds like they classify the skin rash as one or the other based on specific features and severity but that it's all kind of the same ball of wax/reaction process. I'm glad they are considering differential diagnoses as well. Do you have anyone in the city to be with you or bring you things you will need? Does it help for someone to google what the hospital has to offer should you need it? Different floors in our hospital have different things, but all of them have pullouts for parents to sleep on, and they have a gift shop with some necessities. The hematology floor here will outright offer to do your laundry and fix you up with a toothbrush and toiletries as they have kids with extended oncology stays. Other floors, it's hit and miss, but they can likely direct you to some options. There may also be ways to feed yourself that are available only to parents of kids who are inpatient, and in our hospital, those options are more convenient and usually more healthy if a bit repetitive. ETA: If I have the right hospital, Google is a friend in need...https://www.rch.org.au/familyservices/ Quote About Family Services The Family Services and Volunteers Department aims to improve the hospital experience for our patients, families, carers and friends by providing five, family-centred services backed by a team of dedicated staff and volunteers. Main street reception Our friendly and knowledgable Main Street Reception staff, located at the ground floor entry, are usually the first point of call for families and visitors who require assistance with hospital enquiries. The Family Hub The Family Hub (formerly known as the Family Resource & Respite Centre) is a home away from home for families and visitors, offering a comfortable lounge area, kitchen facilities and a fully-equipped business centre. It is also where families can book a free ticket to the Hoyts Beanbag Cinema, make an appointment with a Centrelink representative or financial or legal advisor, grab some emergency clothing or a toothbrush. Here's the link to The Family Hub: https://www.rch.org.au/frc/ Edited July 6, 2023 by kbutton 5 2 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted July 6, 2023 Author Share Posted July 6, 2023 This hospital has a small supermarket. It is still very early in the morning and not opened yet. The nurse just brought me a pack containing toothpaste, deodorant, face wipes and lip gloss. I feel I can go a whole other night without sleeping again after that ❤️ 46 Quote Link to comment Share on other sites More sharing options...
pinball Posted July 6, 2023 Share Posted July 6, 2023 Im praying for your little guy and you too im so sorry this is happening to him and you and your family 1 1 Quote Link to comment Share on other sites More sharing options...
Toocrazy!! Posted July 6, 2023 Share Posted July 6, 2023 I am so sorry this happened to your little guy. It does sound like they are on top of it. I hope you get reassuring news soon! 1 1 Quote Link to comment Share on other sites More sharing options...
Pam in CT Posted July 6, 2023 Share Posted July 6, 2023 Oh how frightening for him, you, his twin and all the rest of your family. Glad you've arrived together where he can get the appropriate care, and holding all of you in the light. (( hugs )) 3 1 Quote Link to comment Share on other sites More sharing options...
EKS Posted July 6, 2023 Share Posted July 6, 2023 Thinking of you and your son and your family. 1 Quote Link to comment Share on other sites More sharing options...
mom31257 Posted July 6, 2023 Share Posted July 6, 2023 @Melissa in Australia, I'm so very sorry to hear this! Praying and sending good thoughts!! 1 Quote Link to comment Share on other sites More sharing options...
AmandaVT Posted July 6, 2023 Share Posted July 6, 2023 I hope he recovers quickly and fully @Melissa in Australia. Keeping you guys in my thoughts today!! 1 Quote Link to comment Share on other sites More sharing options...
Spryte Posted July 6, 2023 Share Posted July 6, 2023 Sending all the good thoughts your way. So glad you arrived safely, and can be with him. 1 Quote Link to comment Share on other sites More sharing options...
footballmom Posted July 6, 2023 Share Posted July 6, 2023 Praying the rash resolves now that you have the right medical care and he makes a full recovery! 1 Quote Link to comment Share on other sites More sharing options...
Kareni Posted July 6, 2023 Share Posted July 6, 2023 How scary. Sending all good wishes your way, @Melissa in Australia. Regards, Kareni 1 Quote Link to comment Share on other sites More sharing options...
Halftime Hope Posted July 7, 2023 Share Posted July 7, 2023 Sending up prayers for him and for the family, especially the mama. 😉 1 Quote Link to comment Share on other sites More sharing options...
Wishes Posted July 7, 2023 Share Posted July 7, 2023 So sorry Melissa. I’m glad he’s at the hospital and that he will have the focused attention of the doctors and nurses. Healing thoughts to him and a warm, tight hug for you. 1 Quote Link to comment Share on other sites More sharing options...
Popular Post Melissa in Australia Posted July 7, 2023 Author Popular Post Share Posted July 7, 2023 Twin 1 has a team of at least 15 specialists that I have seen and aparently more in the background working on his plan. Some of them were woken up last night to give their expert advice. So the latest update is that it is all connected to the medication overdose. the liver damage is minor and will self heal. He has some blood abnormalities that they are monitoring. The rash is still increasing but slowly. Like slowly merging into a sold red, but apart from that his skin is OK, so not those terrable skin syndromes first thought. His airways are good So mostly all very very good news 94 Quote Link to comment Share on other sites More sharing options...
Drama Llama Posted July 7, 2023 Share Posted July 7, 2023 1 minute ago, Melissa in Australia said: Twin 1 has a team of at least 15 specialists that I have seen and aparently more in the background working on his plan. Some of them were woken up last night to give their expert advice. So the latest update is that it is all connected to the medication overdose. the liver damage is minor and will self heal. He has some blood abnormalities that they are monitoring. The rash is still increasing but slowly. Like slowly merging into a sold red, but apart from that his skin is OK, so not those terrable skin syndromes first thought. His airways are good So mostly all very very good news That is wonderful news. I hope he is comfortable and you are able to get a little rest. It's better that they are calling in all the specialists and maybe it's an overreaction, than the opposite! I will keep him in my thoughts. I hope knowing that we're all thinking of him and you, and wishing for the best in our own ways, gives you some peace so you can rest a little. 7 2 Quote Link to comment Share on other sites More sharing options...
ScoutTN Posted July 7, 2023 Share Posted July 7, 2023 Glad to hear the good update. Still praying!! 1 Quote Link to comment Share on other sites More sharing options...
Spryte Posted July 7, 2023 Share Posted July 7, 2023 So glad that the news is good. Thinking of you all, and checking for updates often. Sending love and support. 1 1 Quote Link to comment Share on other sites More sharing options...
Kassia Posted July 7, 2023 Share Posted July 7, 2023 Wow, that is a wonderful update. So glad he is getting such good care and that the news is good. 1 Quote Link to comment Share on other sites More sharing options...
Wishes Posted July 7, 2023 Share Posted July 7, 2023 That is good news. Hope you will be able to get a bit of rest today. 1 Quote Link to comment Share on other sites More sharing options...
Innisfree Posted July 7, 2023 Share Posted July 7, 2023 So glad to hear that good update. I’m holding you in my thoughts, hoping Twin 1 is continuing to heal so you can relax a bit and rest. 1 Quote Link to comment Share on other sites More sharing options...
Soror Posted July 7, 2023 Share Posted July 7, 2023 Glad to hear the good update. Thinking of your family. 1 Quote Link to comment Share on other sites More sharing options...
LMD Posted July 7, 2023 Share Posted July 7, 2023 Oh my word just seeing this, thank goodness for a mostly good update. I'm so so sorry Melissa what a nightmare. If you're still in Melb and need anything over the next few days, please let me know. 🙏 1 1 Quote Link to comment Share on other sites More sharing options...
Ausmumof3 Posted July 7, 2023 Share Posted July 7, 2023 I am glad that the news is as positive as that and hope the situation continues to improve 😞 1 Quote Link to comment Share on other sites More sharing options...
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