Loren's Story, so far

Personal stories of individuals and families affected by Kawasaki disease
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Abby
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Joined: Fri Jun 21, 2013 12:23 pm

Loren's Story, so far

Post by Abby » Fri Jun 21, 2013 1:41 pm

Today we came home from the hospital! The last two weeks have been exhausting. At the risk of forgetting anything, I thought I'd share Loren's story. It is a bit long.

Before KD, Loren was a bright, vibrant 6-year-old girl. She was also a know it all and so very happy. All day long she turned cartwheels and did handstands. She loved gymnastics and swimming. The year prior to KD Loren was sick, a lot. She had at least one new cold a month. I thought it was because she had started Kindergarten and was building up immunity to new germs. After reading so many other KD stories, I think all her colds were leading up to KD.

Sunday, Day 1 - Loren presented with the oddest rash on her trunk I had ever seen. She had had rashes before. She's sensitive to dyes and soaps and cleaners and pretty much anything non natural. So we'd dealt with many rashes and removed everything that gave her a rash already from our home. I thought her rash was from wearing her friend's swim suit or maybe swimming in a pool that wasn't perfectly balanced. So we treated it like all her other rashes.

Monday, Day 2 - Loren's rash was head to toe and looked like goosebumps and felt like sandpaper. She was red and itchy. She still had lots of energy and was still happy so I kept at the treatment.

Tuesday, Day 3 - Loren's rash was about the same and we didn't notice anything different. I still thought she was having an allergic reaction.

Wednesday, Day 4 - By now I was starting to worry about the rash. She'd never have one not respond prior to this. I started researching rashes as that was her only symptom - a red, itchy rash. She seemed to have less energy now and her stomach was hurting a little bit. Her stomach hurting wasn't really anything new to us as Loren has always had some GI issues.

Thursday, Day 5 - She didn't want to do anything by now. She couldn't make it through swim practice and she was getting very cranky. She spent the entire night awake crying about her stomach. She also had a low fever. I was very worried now.

Friday, Day 6 - The rash was all over her body by morning, including her palms and soles. She looked like she had a sunburn. Her temperature followed a pattern of rising to 103+ and then dropping back down to 99.4. Her stomach still hurt so much she cried. She didn't like to walk because it hurt her legs. She had no energy and was so tired. I was done trying on my own and called our family doctor. Loren was tested for all the viruses possible in the office. She was also sent to the local hospital and had blood drawn for more tests. Our family doctor had 3 possibilities for us - scarlet fever, mono, and Kawasaki Disease. As this was only day 2 of the fever, we were advised to come back on Monday. Our doctor gave us her cell number and another doctor's cell number just in case Loren got worse. By this time her eyes were a little pink, she had the strawberry tongue, and her lips were cracked. Our doctor was almost convinced it was KD but she had never seen it before. After she consulted with another doctor, she told us Loren wouldn't be treated until day 5 of the fever. So home we went to watch and wait.

Saturday, Day 7 - I charted Loren's fever and other symptoms all day. Nothing took her itch away and all our busy little girl wanted to do was watch TV. She usually smiled when sick, even with a 102 fever but there were no more smiles. If I bothered her, she got mad. She didn't know what she wanted to watch or eat or drink. She had been living on popsicles and peanut butter most of the week. I had to fight her to get her to eat anything. As her fever climbed, her rash got redder and itchier, her eyes got redder, her feet and hands swelled, she got crabbier, her lips worse, her legs hurt more, and her head hurt. Loren's behavior had completely changed and the sunshine was gone.

Sunday, Day 8 - The fever continued with the same pattern as before - 99.x up to 103+ and then back down. It cycled throughout the day and night. I won't lie, I was terrified at this point as I had spent most of Saturday researching KD. I hovered over her and kept up with the symptoms. I think I took her temperature every few minutes the whole weekend. When she starting crying because her rash itched so much, I almost called the doctor but then she fell asleep and I didn't want to wake her.

Monday, Day 9 - We had to wait until afternoon to see the doctor. I held off on giving Loren anything for her fever in hopes that it would rise while at the doctor's office. Her fever cooperated and was 103.8. This visit was significantly shorter than the visit on Friday. We were in and out in about 30 minutes. Our doctor said to go to Riley Children's Hospital (about an hour away) and get Loren treated for KD. So we came home and packed and off we went. The ER doctors wanted to do some tests and then send us home. By now I had read enough parent stories to know this was common. They didn't believe she had KD because she wasn't as cranky as all the other KD kids but she was cranky to us. She was NOT our happy little girl. She even told the nurses that she doesn't run and she doesn't like to do anything. Her fever started to rise again while at the ER and she got more uncomfortable. I couldn't stand it anymore and I gave the ER resident a piece of my mind. She commented that we were at the end of our rope and I told her that this hospital was our last option and not our first. I purposefully described how unlike herself Loren was acting. I'm pretty sure I scared her as she never returned after that. A little while later the infectious disease doctor arrived and admitted Loren. Loren was in her room by 1 am on Day 10.

Tuesday, Day 10 - All of us were tired and crabby but thankful someone took us seriously and thankful we were about to see an ID doctor who saw KD a lot. The floor Loren was placed on was the floor all KD kids at Riley go to so the whole staff knew KD inside and out. Loren ended up with a team of about 12 doctors, residents, and students. I had to go home the night before to finish a few things up at work so I didn't make it to the hospital until a little after 9 am. By that time Loren had had her ECHO and had been examined by her main ID doctor and the rest of the team. Nothing had been officially diagnosed yet so I made it in time for that. The ID doctor said that Loren's rash in her groin will only be seen in KD and that her team should remember that for their boards. Never have I been so thankful and so sure I did the right thing by standing up as I did at that point in time. Later that day she started IVIg. This was day 5 of her fever.

Wednesday, Day 11 - IVIg stopped during the night and Loren had perked up a bit by morning and her eyes had started to clear. Her rash itched worse than ever that morning so a little Benadryl and a nap and all was well again. By late afternoon her fever had returned despite the high dose ASA. Her head also hurt a little. She was offered other fever reducers but I declined them because I didn't want her fever masked and her head didn't hurt so badly that she was crying. If she needed another round of IVIg, I didn't want to be sent home just to return.

Thursday, Day 12 - Loren's fever rose and fell throughout the night. Loren's doctor consulted with a great KD doctor at UCSD and, instead of going home that afternoon, Loren was kept one more night for observation. All day I worried her fever would come back but Loren was more herself that afternoon than we had seen in what felt like forever. Her brother came and visited and together they laughed and played so nicely. She was exhausted after he left but fever free. She was also taken off high dose ASA and placed on low dose to start the next morning.

Friday, Day 13 - No fever overnight even without the ASA!! She woke up so happy too. The best news was that her last culture came back and isolation was no longer. She took a walk with me to get me my breakfast and coffee. The walk wore her out but she was still happy. Her appetite came back full force now. She started laughing at things on TV. She started having a hard time sitting still. She started talking to nurses and telling me stories. Our little girl was coming back.

It's been a very long 13 days and I know Loren's heart isn't completely out of the woods yet but its so close. I know she has a rather lengthy recovery ahead of her. I know she will tire easily but she's back. I will forever be grateful to our family doctor and her entire team at Riley for saving her heart.

youngwk2000
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Re: Loren's Story, so far

Post by youngwk2000 » Sat Jul 13, 2013 11:09 pm

My daughter was in the hospital almost a month with refractory KD, three rounds of IVIG high dose aspirin, steroids, tylenol, remicade, abxcimab, cyclosporine, lovenox etc. Just be there for your child (tell her things will get better, hug her and don't breakdown) and hopefully she will respond well the first ivig treatment but if she continues to fever just prepared for an emotional physical rollercoaster for all of you. If she goes on steroids she will turn into someone you may not know and don't get frustrated, she has little control of the rages or irritability. Don't give up and sit idle by if you think she needs more people involved. My daughter is doing very well now. Dr. Burns at UCSD should be consulted if you feel the Dr's need more help, our specialist put her on Dr. Burns protocol that finally resulted in taming the kd. They also reviewed Dr. Newberger's protocol in Boston.

mwjohn5
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Re: Loren's Story, so far

Post by mwjohn5 » Fri Sep 20, 2013 12:15 pm

My daughter is post KD for 8 years now and it is pure hell and would not wish this on anyone. Just go with what your gut and do not ever hesitate on calling the dr or going to the hospital. My daughter was very sick for years after KD and it was different illnesses but we were bugging the doctors and the hospitals for those illnesses. She has had tonsils and adnoids removed, flu, rsv, pneumonia, 30 ear infections, ear drum busted, all before she was 4 (between 14 months and 4-she had KD at 14 months). She is super amazing, very happy and healthy now. She is very active with softball and has been cleared to play until she is 12, then stress test to make sure she can handle it. We are praying she will pass with flying colors so she can live her dream to be the next Jennie Finch. Keep up the good work of being a wonderful mother who is worried about her baby. It gets easier but takes several years to let loose to relax a little when they do get sick, of course the worry is always there because they are your kids.

Olive8
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Re: Loren's Story, so far

Post by Olive8 » Fri Sep 05, 2014 5:24 am

youngwk2000 wrote:My daughter was in the hospital almost a month with refractory KD, three rounds of IVIG high dose aspirin, steroids, tylenol, remicade, abxcimab, cyclosporine, lovenox etc. Just be there for your child (tell her things will get better, hug her and don't breakdown) and hopefully she will respond well the first ivig treatment but if she continues to fever just prepared for an emotional physical rollercoaster for all of you. If she goes on steroids she will turn into someone you may not know and don't get frustrated, she has little control of the rages or irritability. Don't give up and sit idle by if you think she needs more people involved. My daughter is doing very well now. Dr. Burns at UCSD should be consulted if you feel the Dr's need more help, our specialist put her on Dr. Burns protocol that finally resulted in taming the kd. They also reviewed https://deadliftdonkey.com/my-crazy-bulk-review the Crazy Bulk supplements which was reviewed by Dr. Newberger's protocol in Boston.
Are steroids safe for kids? That seems like a lot of drugs to pump into a little un'.
Last edited by Olive8 on Wed Sep 28, 2016 9:25 am, edited 3 times in total.

youngwk2000
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Re: Loren's Story, so far

Post by youngwk2000 » Mon Jan 26, 2015 7:47 pm

My daughter is still doing fine now and still on one baby aspirin and coumadin because of her giant aneurysm. Yes, I was concerned with all the medications she was receiving but she had refractory kd and nothing was working. I started researching treatment and nothing was out of the norm. We had specialist trying to get her through the kd episode and cardiologist concerned with damage to her heart because her kd wasn't going away. I think you have to start thinking about long term lasting heart problems from kd and what medications that'll work at that moment to prevent future heart complications. God gave us two of most everything but only one heart and you have to protect it from kd. I truly believe things would have been worse without all the medication she received. She is doing fine now and we are due for another echo. I am praying it continues to shrink. My daughter and I have grown so close she is stuck to me like bubble gum and I'm fine with that. I keep a hepa/uv filter in her room just in case.

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