Am I just being paranoid or has anyone else had symptoms return/start like this on the 3rd week?
Today we had our 3 month EKG and Echo and both were normal. This disease stinks and has rocked our world but today we celebrate!
Am I just being paranoid or has anyone else had symptoms return/start like this on the 3rd week?
Today we had our 3 month EKG and Echo and both were normal. This disease stinks and has rocked our world but today we celebrate!
Update/Question: Ethan has started the IVIG but is extremely tired and just wont wake up! He is now urinating himself in his sleep and they are drawing blood but still wont wake up!!! Is this normal with the treatment?? His blood pressure is low and They are now very much worried about pancreatitis!!
My daughter was discharged on March 6th, her arteries have returned to normal, off the aspirin. But with me insisting on a follow up plan (wasn't going to have any for the rest of her life), in 5 years?
Is this right? Or should she be having one a year from now? Confused, as I once heard every 5 years & also heard yearly for the first few years after discharge...
Anyone's kiddos have intense pain in random joints? My daughter is seven weeks out from diagnosis (treated with IVIG) and last night she was crying because her left foot was hurting so badly, then tonight she was in tears crying about how badly her right shoulder was hurting. It just seems like the pain pops up all of a sudden in a random joint and I was wondering if anyone experienced anything similar. Thanks in advance-- I appreciate this group and being able to read all of your stories and advice.
Another question... Anyone find their kids very tired? My son is almost 15 mths, and is 2.5 mths post IVIG. He sleeps a LOT! He doesn't want to give up his second nap. Eg. 2 naps a day that are 1-2 hours each (usually between the two of them they total almost 4 hours) and he sleeps 12-13 hours at night! I'm not complaining, as it's great to have a baby that sleeps, but I know most his age are down to 1 nap of 2-3 hours. It just seems like a lot of sleep at his age. TIA!
I took my kid to the dr asking about kawasaki disease. I dont think the dr understood and diagnosed her with coxsackie. My daughter is better (after two weeks!) but Im confused. She had a fever for 5 days. Vomitted and had very red swollen hands and feet started on day 3. Day 4 and 5 she had red eyes and red lips. Day 6, her arms were yellow, her skin was very dry, and her skin was pealing around her nails. She didnt have any bumbs. Is there something Im not understanding?
Picture is day 5, after the swelling went away, but before it was pealing.
My son is 6 months out of the hospital. he is 6 years old, he ended up with 4 giant aneurysms. they want to do a heart catherization this year along with stress tests. They have just switched him from Lovenox to Warfarin, and is still on atenolol and aspirin.
I'm more worried about what will happen later in his life, years down the road, I would like to know some stories, so maybe I'll have an idea of what to expect... I understand that every child is different and the healing process is different for everyone...
Hello. My son is 15 months, he had Kawasaki last month. When we returned home his 2 day follow up after discharge from children's national in DC (with local pediatrician) it was combined with his 15 month wellness visit. We skipped all vaccines due to being on the lookout for a fever within two week time frame of being home. We didn't want to confuse fever from vaccines with Kawasaki possibly returning. I know live vaccines are not to be given for 9-12 months due to IVIG. However, pediatrician is really pushing to catch him up on the other vaccines from 15 m wellcheck that we skipped. He had MMR and Chickenpox in December. Was anyone else within their due date of vaccines and when did you feel comfortable catching them up? He is not in daycare, he stays at home. And since he's on aspirin and it's flu season we haven't been around othe Children per drs orders.
Anyone know about vaccinations? My son is due for his 18mth vaccines May 1. He received IVIG Jan 5. So vaccine is supposed to be 4 mths post IVIG. Thoughts?
On what day did your child start peeling?
Something that bothers me each day is wondering if it was Kawasaki right from the beginning and just misdiagnosed or it were truly strep throat and scarlet fever first that triggered KD.
If it was strep throat/scarlet fever from the beginning then it would have been day 5 that my daughter started peeling. If it were KD all along it would be day 26 that she started peeling.
We will never truly know because a strep swab was not done. But the peeling stage makes me very curious!
Help please! Any advice/Input: We have done many different test, ultrasounds, and everyone is still here wondering what the heck is wrong with my baby!!! Still no meds, Still not really eating let alone drinking and they have now taken the IV out!!! Ethan is so dehydrated that he now has developed wrinkles under his eyes! Ethan had a fever for 4 days, red tongue, shot red eyes, diarrhea, vomiting, full body rash, strep throat, Cracked red lips, Scarlet fever, huge lumps on the side of his neck that keep on growing and has been sleeping a ridiculous amount of time all day and night His skin is also very flaky and dry and keeps having bloody nose. Specialist told us that because his fevers have now stopped that she no longer thinks he has Kawasaki!!!! He has every single freaken symptom for Kawasaki yet they are acting like they now have no Idea and will continue to do testing!!! Im ok with all the testing the only problem is if we wait 2 long for treatment then the disease will cause heart problems and his white blood cells are already so high!!!
Sorry for my ignorance, but can you have a normal CRP on day 8 of fever? Everyone still believes virus. I am just curious as to whether or not I can stop pushing Kawasaki's. Her CRP was 5mg/L (low apparently)
I'm curious to know what your opinions are on what you think is the cause or trigger for your child's Kawasaki Disease outbreak.
No medical expertise facts...just your own personal opinion from what you have seen, recall prior to outbreak, and experienced.
Sometimes the best people to ask are the parents.
again, this is just your own personal opinions not stated facts.
Thanks in advance!!
my kid btw both KD episodes were triggered by a common cold/virus from a playdate friend who was sick (different sick friends different years)...but it happened immediately within 2 days from being in direct contact with a sick kid.
My 4.5 years old daughter diagnosed with KD yesterday morning, 10 days and immediately completed IVIG. Fever, cracked lips and red eyes gone, however fever back again later in the day 38.3. May I know is it normal? Echo done and see some dilation in coronary artery.
Edited to add, her temp is 37.5 now
Edited to add, her temp is 38.5 now. Temp always up during night and especially sleeping. Shall I go for second treatment of IVIG?
Everyone should know what is this?
Today was our 3rd echocardiogram and my 3.5 yr old is doing great and is off aspirin. He was treated for Kawasaki on Feb 5th at Hackensack Children's Hospital and the doctors and staff were all great and quickly recognized and treated KD on day 5 with IVIG. We've been symptom free since then. His symptoms started with swollen lymph node and fever. Following day, a rash and red eyes, red tongue and cracked lips and fevers of over 105 for over 4 days. Thankfully we were able to treat him on time.
Prayers to all families that are going through this. Stay strong and know you have a good support group here.
Hi! I'm asking this after reading a post of another parent. Has anyone had long term consequences of their child taking Plavix? Specifically kidney disease/failure? My son is 15 months old. He had two rounds IVIG and abciximab infusion. He is being followed by children's national DC, who prescribed 0.5 ml (5mg/ml suspension) and has been on it for three weeks. He is also on aspirin and propranolol. He has two 'small' aneurysms. Thank you!
This is Legend he is 6 months he was diagnosed with Atypical KD in January at 4months old it was a rough journey, many nights I cried in the hospital room asking why my son I could not bare to see him with an I.V in his head I could not bare one more lab work. Finally after being discharged and we got back home he was showing progress we went for weekly echos and he was and is still taking 1/2 of an aspirin daily. He went for his echo last month and appt have been moved to once a month. All his labs are back to normal and his arteries are going right back to normal. He is back to being my healthy baby boy he just turned 6months yesterday and I can tell you if I didn't have faith I wouldn't of made it.
I am the Executive Director/Founder of the Kawasaki Kids Foundation and my son Cooper is struggling in school. He has focus, concentration and listening issues at home and at school. I have done some research on ADHD and wondered if this may be what he has? It doesn't help that he takes 16 meds a day to deal with the giant aneurysm and stage 3 kidney failure.
Are there any parents that have a KD child that have or are suffering from some of the same issues? Thank you in advance!
my daughter is 5 years old got diagnosed with KD December 27th last year, she is now off aspiring as of February 14, since she got diagnosed she is always crying out of anything or everything , feeling sad or mad is anyone else experiencing the same?
Hi all! I wanted some advice about my 7 (almost 8) year old daughter who was diagnosed with KD 3 years ago. It took almost a month to diagnose and was finally done so because her feet and hands peeled. Fast forward to current time, her feet are peeling again and I've spoken to a co-worker who's nephew had KD said KD caused kidney issues with her nephew. Anyone else??? Now I never put the two issues together but my daughter has the need to pee constantly and has for some time now. Sometimes she even pees a little in her pants. Anyone else experience kidney issues with this years later? Also, she complains about her eyes. She doesn't really describe in detail exactly whats wrong but I've had several eye doctors take a look and found no issues. Thank in advance for any suggestions or advice. I have an appointment with her pediatrician but they don't seem very educated in the disease since they misdiagnosed her to begin with.
My 7 year old daughter was diagnosed with KD on Feb 28th. We were sent to the PICU that night due to poor vitals. We made it out of the PICU in 4 days to a regular room. We've had 2 rounds of IVIG and finally finished 3 rounds of steroids. Her heart was fine in the PICU. One week later a repeat echo showed 5.0mm heart aneurysm. A follow up echocardiogram was done a couple days later and it grew to 5.8. that was the day before we started steroids. We thought we were going home today, echo showed it grew to 8.3 and now a 4 something aneurysm on the left side . CRP is down to 0.6, platelets 1.2 million WBC 17k. Has anyone else been through this with KD?
Have any of you had your kid start shedding hair post treatment? I am debating here if it's post trauma, response to k.d., or an issue with nutrient absorption. Or response to asprin and Zantec? Thoughts?
Is Children's Hospital of Anaheim a good hospital for KD disease?
Hi everyone, my son was diagnosed with Kawasakis in early January. We were very fortunate to have caught it early, and he only needed one IVIG treatment and then low dose aspirin for about a month. He had a rash, the fevers, swollen lymph node, and very red cracked lips. He has had no heart involvement and he was officially "discharged" by his cardiologist two weeks ago. Last night, he was extremely irritable before bed, and barely ate dinner. He woke up in the middle of the night crying, and had a fever of 102. We removed some of his clothes and hung out for a while, and the fever went down by itself. He woke up this morning and had some peeling again on his lips. It's mild, but it of course is scary. For those of you who had a recurrence, were symptoms the same? What tipped you off that it was Kawasaki's and not something else? He has a little cough, so I think it could just be a virus, but I think what concerns me is his reaction and the peeling lips. He was irritable in the same way that he was with the Kawasakis, though he could have just been achy from fever and fatigue. This morning he seemed better, but I remember that the first time, he was much worse at night, too. Any thoughts appreciated. I'm just worried about him...
Hi..my son hasn't been diagnosed with KW it was just mentioned by the doctor when he was treated for scarlet fever for the 2nd time in 6 months. ..he's well now and hands and feet have stopped peeling. ..get first had his bloods done in hospital 2 weeks ago...showed strep..
I was told he would go for a precautionary heart scan but the referral list was long and it could be in 12 weeks time..
My daughter was diagnosed with KD just over 2 months ago. Yesterday she developed puffy eye lids (no discharge though). Took her to a walk in clinic this morning and the doctor said it could be a sign of renal problems and we should see the Pediatrician. Just curious if anyone else's kids developed kidney issues after having KD. TIA
can aspirin totally cure a mild kawasaki without IV IG? thank you
Looking for any feedback..
My 4 year old son was diagnosed with KD last Week, we were turned away from Sick Kids Hospital in Toronto twice before another hospital took us and treated it. He was discharged Friday night and i feel like he is getting worse with different symptoms. Today he had almost a 39 fever and has not been able to walk since discharge. He can bear zero weight on his ankles, legs or feet and cries hysterically if we stand him upright, he also cries in his sleep. He is complaining of hip pains and pains in his left hand. He also had a headache and stomach ache all day today. He has been sleeping 4-5 hours during the day each day and sleeps most of the night. He peed one time since overnight. Any insight is appreciated
*editing to add, when I posted this we were already in the ER and we are already admitted. I was looking for feedback in case someone else had this situation with their child and had a solution that worked so we could possibly avoid unnecessary delays and get the correct treatment for my son.
Hey Guys, My 4 year old son is 3.5 months post IVIG he was diagnosed at day 8. He received 4 doses of IVIG he was a textbook case of KD with having every symptom very severe. We have had 3 ECG ultrasounds on his heart the first showing enlarged arteries and his heart being inflamed. Our last one was 3 weeks ago his arteries are still enlarged the left side has went down 1 ml the right has went down 2 ml but are still in the enlarged category out cardiologist had expected his arteries to have went down a lot more in that time frame but then said where he was at with the disease is why his arteries are still enlarged. He is still on a large dose of aspirin which we are stopping today, the cardiologist said ideally he should continue aspirin until our next scan but it is dangerous for him to be on such a high dose for an extended period of time. Almost 2 months ago he woke up and couldn't walk screaming in pain we rushed him to the hospital, after ultrasounds, X-rays and blood tests he was diagnosed with transient synovitis where he had a large pocket of fluid in his hip. He now quiet frequently has severe joint pains to the point where he can't walk 2 days ago it was his ankles today it his his ankle, knee and his whole left leg his chest is sore and his asthma has flared up again. We are also dealing with sensitivity to his teeth (where he cries when he brushes his teeth), hair (hurts to even put gel in his hair) his hands often ache and still peel. We have notice a big difference in his behaviour since KD. This morning I have taken him to the doctor, he thinks he may now have have developed another autoimmune disease or he is relapsing with KD (he still comes out in rashes frequently as well) the doctor thinks he is showing signs of ADHD I felt he may have PTSD as he still has nightmares and relives the pain that he went through so we are seeing a child physiologist to deal with that side. As I am still learning about KD and personally know no one that has been through this if any one has any helpful information or similar stories of there own I would love to hear
My son was diagnosed in january he had a clear echo and was on IV/IG. Today we had our second echo which was clear as well as his EKG. However i left feeling like my concern and opinions didnt matter. She told me to take him off the asprin amd he will no longer need anymore echo i dont feel comfortable with that. Am i just being crazy
My son had incomplete kawasakis last year. He was clear with no heart damage. Now he has these bumps on his hands and feet. No fever or any other symptoms. Any one else have this happen? Could it be kawasakis again?
My daughter had KD almost 4 years ago. Her have started peeling pretty bad I've read a few people who's kids dealt with the same problem. Do you guys have any lotions you recommend. She hates it & now hates being bare foot thank you
Click on the picture to read the full blog post :)
#freyasstory #kawasakidisease #raredisease
Ashley Rodrigue talks to parents of a Northshore child who was infected with a rare illness.
Hello ladies. I'm new to this group. My daughter is 4 years old. After being diagnosed with possibly appendicitis; then a virus: then possible kawasaki after spiking a 105.9 fever and getting the rash, strawberry tongue etc. - she was finally officially diagnosed with adenovirus. This was a 7 day ordeal with many trips to doctors and hospitals. Her fever broke on Monday and the rash went away. It is still a bit visible after bath time. The possible diagnosis of Kawasaki is still in the back of my head.
My question to you mama's is: did your Littles show symptoms, have them diminish and then come back? How long did it take for your kawasaki diagnosis?
I'm 50% confident that she is in the clear but still on watch!
How many of your children have gotten KD a second time?
My daughter is doing just fine (we are 4 months post KD) but I can't seem to get past my worry of this happening again! It's all I think about! What has helped all of you to move past this? I don't think we will ever not worry but I just can't seem to control it! It Literally has taken over my life! I know I will never be able to go back to the Mom I was (much more carefree)KD changes all of us in a way no one else but us KD families will understand. But I want nothing more for my daughter to start enjoying life again and I know she picks up on my anxiety, she is almost 10.
My son was diagnosed with Kawasaki last Tuesday, feb. 28. He was treated with IVIG twice in the hospital and discharged on Saturday. His rash disappeared and appeared to be a happy 16 mth old, so I took him back to daycare yesterday. Last night, he started vomiting a lot. He's still vomiting today. When he vomits, no food is coming up. Only yellow mucus and saliva is coming up. Anybody else experience this? Is this a reaction to IVIG or something he picked up from daycare? We're headed to the pediatrician in an hour, but I thought I'd check in here too!
Question to all:
When did the rash completely disappear?
My 1 year old daughter was released from the hospital last week on feb 28th after her second IVIG treatment, and her rash had seemed to look like it was disappearing. Today I noticed it seemed a little flared up, however no fever. Did anyone else's little ones experience the rash for awhile after the fever had gone away?
Hi everybody! My 16 mth old was just diagnosed with KD last week. Thanks for sharing your experiences. It's really frightening because he can't communicate with me about how he's feeling. I am wondering about whether his symptoms will flare up again if he experiences other illnesses like colds and sinus infections. He goes to daycare and kids pass around germs frequently, so he gets runny noses a lot. I'm wondering if I should take him out of day care if KD will cause his illnesses to be even more serious. What are your thoughts?
My little lady's echo in just 2 hours, I'm so nervous. Got a lot of questions for her paediatrician. Had to wait 5 months for this scan, felt like forever
Hi. I'm so glad for this group! My 9 month old son was diagnosed with KD 2 weeks ago. I've noticed many of you mention about being followed up by a cardiologist even if the ECHO results were clear. As far as I'm aware, my son's echo results have been read by a cardiologist but my son's f/u appts have only been with an infectious disease doctor. Any of you that only followed up with an ID doctor? I'm wondering if it's necessary for my son to be working with a cardiologist?
(Btw, he has a second echo scheduled next week then another one in 2 months...I'm thinking it's because a cardiology consult would be ordered only if the ECHO results are abnormal...)
My son had KD in Jan and was treated. On March 1st he had his 2nd echo, ecg and bloodwork. Thank goodness all was okay. Then the doctor said he is cured and no need to see them again. I was a little surprised as others on here with same results had to get echos every 6 months or year... Should I be concerned? ( he is 6 years old)
I am wondering, if my kid (who so far seems to show no heart damage) gets the all clear at eight weeks, should I consider this Kawasaki disease a done deal? I assume this would mean no risk of future heart issues, right? Did anyone have heart issues after not having any at the get go of the disease? (First 8 weeks.)
Just reaching out to see if anyone else has had simular experiences with their child after KD. Long story short, my son is 6 year out (he is 12 now). They had been trending the right coronary artery every 2 year due to it being boarder-line high in measurement. This past Monday he had his Echo. The right coronary artery is great. Well within normal range. We were told he wouldn't need seen again. They were going to release him but wanted the team of cardiologist to review the echo just to be sure. We were so excited and celebrated this good news. On Thursday, I got a call from his Cardiologist saying that although the right artery is now perfect, the LEFT has some aneurysmal changes. My son, 6 years later has been diagnosed with an aneurysm???? I was floored. He goes for a stress test and cardiac Cath at the end of March. I am worried.
Anyone have their KD survivors have recurring fevers with no other symptoms?
My 9 month old, that is 3 months post KD, has developed a fever with irritability and poor appetite. I gave Tylenol with no relief.
I looked to see if fevers are common post-KD but can't find any research about it. Just wondering if anyone else had experienced this.
My Grand daughter 7 years old got a bad rash on her entire bottom area, a few days later her fingers started peeling and her hands too, then her toes and feet. She had a low fever and a strawberry tongue. The doctor thought maybe she had strep earlier even tho she tested negative. She did have stomach pain and complained of headache a lil of a backache and did have a small sore on each corner of her mouth. I took her to at least 6 doctors. Her blood work is good and so is ekg.
Now her ankle is swollen and having to use crutches. This has all happened around the last 2 or 3 weeks. Can you guys help me here with your opinions please. Thank you.
Nous parents Francophone n'avons pas la chance d'avoir une association comme vous aux USA (mais on y travaille)
En attendant pour Marie mon petit cœur et tous ses frères et sœurs de Kawasaki en ce 28 février, journée mondiale pour les Maladies Rares, j'ai fait une mosaïque avec les photos d'enfants francophone atteint par la maladie de kawasaki. Merci a Magalie pour son aide, aux membres et administrateurs du groupe maladie de kawasaki (https://www.facebook.com/groups/william2008/) pour leur soutien <3
Merci d'avance pour vos partages et vos commentaires <3
Hi everyone, I need some advice please. my daughter had KD on the 7th of January this year. The last few days she has been complaining that her feet are hurting like last time and her fingers are peeling again. Is this normal or should I take her back to the doctors? I'm so confused and worried
Another question . . . anyone else had to give their child injections? Our daughter is currently on half an aspirin and daily (2x) injections of another blood thinner called Enoxaparin. The enoxaparin will be a short term thing (a few months the Cardiologist said). We are just shy of two months since being diagnosed.
All of the posts/comments about kids personalities/emotions changing after KD scares me. Anyone feel their child didn't change in this sense? I feel like it's hard to know with our daughter as she was only 9 months old when she got it. It will be two months this coming week since she was diagnosed.
These pictures were taken two days apart, that's how fast this disease hit... .... we are coming up on the one year anniversary of my daughter Jenny's diagnosis.... she still experiences joint pain... and I feel that she still has mood swings... but I'm so grateful that she's back to being my feisty little girl!❤️
My daughter started KD on Jan 19, so we are about 5 weeks out. Every time she cries hard (she is 3), her eyes get extremely bloodshot still. Is this something you have experienced? Does it go away? How long does it last? At her last echo, which was the first week of Feb, she had no heart involvement. But the little veins in her eyes stress me out. :/
Tomorrow marks 2 months from the day my daughter started her fever that later that week led to her KD diagnosis. While I still worry and my stomach drops when her head feels warm, I wanted to share this video with anyone at the beginning. I remember how scared and alone I felt sitting in the hospital with her reading more and more about this horrible disease.
We still have joint pain and don't know what tomorrow brings but right now I am grateful for today and this smiling girl on a tire swing enjoying the sunshine on her face. Time has definitely helped. I am hoping in another 2 months after our next Echo KD will begin to become that thing she had not that thing we think of every day.
Prayers that all of your KD kids can enjoy the joy of a swing and sun on their face.
We were misdiagnosed with one week hospital stay, no IVIG, currently on low dose aspirin, first two echos have been clear. We're now in week 4, the rash has returned (head to toe)and her lymph node at the base of her neck is swollen? Doc doesn't seem to concerned. Thoughts?
Hi I'm Juan and my wife is Aileen Villasana our daughter which is 17 months old was diagnosed with Kawasaki disease on February 18th but came in on the 14th symptoms showed a uti on the 13th she was then givin the ivig on the 19th since then no fevers have came back and she has then seemed to be stable she has 2 aneurysms and yesterday doctors found out she got a 3rd one this is in her left and right coronary arteries she was given steriods, aspirin, and planax. Blood work has been coming back much better day by day her markers are getting to where they need to be But Today they did another echo and it shows more dialation in her arteries and they are gonna take her off of planax and put her on a more stronger medication and doing a ct scan tomorrow morning she is gonna be moved to the cardiologist team for more monitoring. Along with being put on the remicade medication.
Have y'all ever had a child who has this similar scenario?
Curious. If anyone's kids had giant aneurysms and did they regress? If so how long did it take for them to decrease in size?
Need some advice please. My son has an appt at the KD clinic at Rady's hospital tomorrow for a follow up. He had KD last Sept. He is on 1 Aspirin a day and got a runny nose & cough last night. Now he has a low grade fever of 100.2. Do I give him his Aspirin dose today & just wait to see the Dr tomorrow or should I take him to urgent care for a flu swab today? Nervous mom would love to hear what you think, thanks.
I have a question, my grandson had Kawasaki three years ago, then had Rocky Mountain spotted fever, now he has Scarlet fever, is this a coincidence? I'm sorry, I just don't know what to do, he is always sick. He has a weak immune system.
My daughters KD was dismissed at this facility. So was the case a week prior and two months before that.
Please, please sign and share.
I would do it for your child and your hospital in a second.
Back in December last year we were in Mexico for the holidays, our 4 year old Mateo started bruising on his legs and arms... 2 days after he had bruises all over his body inside his mouth, gums, lips... everywhere!!! We took him to the ER and that night he got diagnosed with leukemia... 2 days after, we drove all the way to Vegas 15 hours straight to the ER... got done blood work and sent home... they ask us to go back the next day (dec-30) 3 weeks later the doctor said it was ITP... a blood disorder... 3 weeks after he got Kawasaki... I've been reading that is most common getting Kawasaki and develop ITP... thank God the same treatment is for both conditions... and he's been fine since the IVIG treatment... the hematologist said he's getting more treatments since he's on aspirin and is a blood thinner... that can affect his platelets... just keep and eye on your kids if they start bruising and little red dots appear in their body that can be ITP... hope everything gets better whit my boy... he says daily this words: my name is Mateo and I'm a healthy boy...
This is our journey with Kawasaki disease all the way from South Africa. Its been 6 days Post and Mia has good days but also bad days where she is not playing or walking and extremely tired, she is also not the little girl we know that's always bubbly, happy and willing to go into anyone's arms, she is now scared of everything and everyone, we think it might be the trauma of all the needles ect during our hospital stay. We hope to have the real Mia back soon..
My son is 8 months old and was diagnosed a month ago. He is still on aspirin. When did you feel comfortable taking your kiddos out in public. We have been to the park to get fresh air with big brother but other than that he has been indoors.
My daughter is 21 had KD age 2 all heart scans was clear and she was discharged 18 year ago she still gets pains in her chest passes out and is tired all the time app the doctor said I'm over reacting paranoid and don't put my fears on her
KD moms,we been home for little more than 2 weeks now and my daughter is very cranky at the moment i gave her a acetaminophen suppository at 9pm and she still uncomfortable with ,when should i call an ambulance? i dont want to exagerate...
Am I the only mom that took a mass amount of photos, when KD started? From the beginning to now ?
Has anyone noticed any links between KD and a weakened immune system? If there's a bug going round or a cold I ALWAYS seem to catch it, I'm ill at least once a month and it's starting to get annoying :(
I buried my fears and took my daughter out for our first outing around other kids. We are 7 weeks post KD. She went to her dance class she has missed since December. She was nervous and didn't want to go but was smiling once she got in class. Her kind teacher said she didn't have to hold any hands and that she would send her out if any other students seemed at all sick. She got her recital outfit. I think she is the cutest little ballerina ever. Baby steps for this Mama that wants to keep her in a bubble during this horrible flu season.
|Nails| My son had kawasaki two years ago. This week his nails looks horrible. There are horisontal cracks, and the nail is peeling. Its on all fingers except the 4th finger . The doctor said it maybe could be related to kd but is confused about the two year delay. She refered us to a skin doctor. But maybe someone in here has seen this before?
Hello, I'm new to this page. My son just turned four months old. His fever started on January 19th, he was diagnosed with KD on February 7th after 19 days of fever. The only visible symptoms he had was pink eyes and a fever. They diagnosed him with KD after the cardiologist found two aneurysms in his heart. One 2.8mm and the other 3.3mm. Thursday will be his first appointment with the cardiologist since being released this past Sunday. This past week has been so overwhelming. Just looking for support, thanks.
Anyone heard of this before. Its suppose to also benefit and help Kawasaki Disease patients. It's called "Izumio" Water?
anyone have more infomation on this...
I just got a sample of it today from a friend but didnt get a chance to read up on it much.
Hello everyone! I'm new to the group. I had Kawasaki disease when I was 10. I'm now 24 years old. I can remember having horrible leg pain and had to be in a wheelchair during my time with the disease and even 5 years after. Every now and then my legs feel the exact same way. Has anyone else had leg pain?
My 7 month old son had probable a typical Kawasaki before Christmas. His first echo was fine we are waiting on his next one.
He's is currently on aspirin.
I have found a bruise on his leg just below his knee. I am concerned about blood clots.
Has anyone had any experience with this?
We had our third clear heart echo today and are 6 weeks out. They want to do another echo in 6 weeks just to make sure. She is still experiencing some joint pain behind hr knees and upset tummy in the morning. She said we are not the norm because she required 2 IVIG rounds. She still sometimes has a temp of 99.4 today. Blood work is normal though. Celebrating the clear echo but wish the rest would go away. They don't seem to have answers.
I feel like I'm struggling with such depression since starting this KD trip. The illness, the struggles with the doctors, the stress, then we (all 7 of us) had the flu within 2 weeks of our initial KD illness. I feel like I'm a wreck. I just thought most of you might understand the feeling. :/
It's been 3yrs and 9months since my son was diagnosed with kawasaki disease and he has recurrent fevers every month 102-105. The doctors here in NJ won't help. Leg and joint pain every night,his behavior is getting worse by the day. Any suggestions?
First fever since Kawasaki diagnosis in October. It took several treatments to try to get rid of the ugly monster from October to December. I guess I'm posting to look for reassurance?? How was your little ones first fever post KD? I HATE fevers with a passion. My other daughter had complex febrile seizures in 2014.
As I sit here awake for the 700th night in a row, I would love for someone to please tell me why my Kawasaki child won't sleep through the night. The nightmares and kicking the walls in his sleep are becoming too much to handle. My husband and I are losing our shit. I feel hopeless and feel like a sleep study won't uncover anything we're dealing with. Any helpful insight? I don't know how much more I can take.
Hi my daughter is 21 had KD age 2 was in hospital for 5 days on asprin for 6 months after 3 clear heart scans I have taken her to A and E a few times with pains in her chest and sometimes she passes out for no reason her egg and heart trace are always normal but so are mine and I'm waiting for open heart surgery to replace a valve and they said I've had rheumatic fever as a child is KD a new name for rheumatic fever? I really do think she needs her heart checking does anyone else suffer with this problem? She is tired all the time no energy and is on B12 injections
This is interesting! I had KD when I was 3, Im now 28. Does anyone who had KD have an allergy to mushrooms and penicilin.. which are a fungi. I do.. it be interesting to see if anyone does as well
I'm feeling a little discouraged after my sons diagnosis. Everyone around us has no idea what we are going through and my sons friends don't wanna play with him. Their parents think their children can catch this, which they can't. We were in the hospital for 2 weeks cause he had to do 2 treatments of IVIG and he fevered so weren't able to go home. Now that we're home, I feel like our worlds just changed. My daughter comes home saying she hears parents saying nasty things about jojo. I'm kinda lost and wanna say some hurtful things but I'm an adult and don't need the drama. He has scar tissue around his heart and he is on high dose aspirin. I have to go to the school and give him the 6 pills where his nurse refuses to give it to him. So any advice would be helpful. This army base has some closed minded people and are just rude :/
We live in UK. My two years old son was diagnosed with KD 4 days ago. We've just came back from hospital and need to wait for a heart echo.
I cannot find a place for myself
Hello all! I am looking for help from those whose KD kids are currently aged 10 to 18 years and have coronary aneurysms. My son's Nurse Practitioner, Nita Chahal of SickKids Hospital in Toronto, Ontario, Canada, is looking to extend the research she has done regarding the psychosocial impact on parents and children living with coronary artery aneurysms as a result of Kawasaki disease. (You can find the abstract of her previous study here: https://www.ncbi.nlm.nih.gov/pubmed/28027841). Her focus will be on children currently aged 10 to 18 years with coronary artery aneurysms. If you and your child would be willing to participate in a new study, please take a couple minutes to fill out the brief survey I have put together. This survey will help to determine how many patients and parents would be willing to participate in a future study and would allow Nita to move forward with her study proposal. You do not have to be in Canada to participate!
Feel free to message me with any questions of if you would prefer to pass on your information directly to me rather than filling out the survey. Thanks for your help!
Here is the link to the survey:
How many kiddos have had strep and KD at the same time? Finally saw Infectious Disease doc, and he said we may never know which she had, scarlet fever or KD. But that lots of times the two come together. Anybody else with this experience?
Tomorrow is our 6 week follow-up echo... this boy has had us on pins and needles for weeks with these hives/rashes. Praying for a positive outcome tomorrow.
I have been doing so much research online and my family doctor does not seem to be listening to me.
My son who is currently 9yrs old, had KD in June 2013. Thankfully his heart was fine afterwards. But he has never been same child since. He is an aggressive and violent boy, highly strung, tense, obsessive, bad tempered. It has escalated as the years have passed and I am now at breaking point and don't know what to do.
He has been attending a child psychologist here in Ireland but it hasn't helped. The psychologist was unaware of what KD was after I told her that he changed straight after his KD diagnosis. What do I do?
Hi! Newbie alert! Our son had KD last months. We are so blessed that his little heart was not impacted by the disease. He had two IVIG treatments and symptoms have improved. He has a little peeling skin, yet. But can I ask you all how long the irritable disposition endured? He just seems so irrational and emotional. He also isn't sleeping as well. He was a pretty low key, even tempered, great sleep before. I'm sort of going crazy.
Sorry for the strange question ...... but ever since my little one had Kawasaki he has never been the same . Constant sore stomachs sickness that can come on in a second floor him for a few hours then he's fine like nothing happened but doctors don't seem to interested . Anyway ..... I have noticed a weird fruity smell off him I have had him at dentist and all is fine in his mouth and tonsils she told me to take him to doctors to be tested for diabetes has anyone else's children got diabetes since kd? I feel I take him into the doctors now and they never take me serious treat me as if am a para mum . Don't know if am being to para but it just doesn't add up
If anyone has been to Bostons clinic for Kawasaki or gone to dr burns in California is it worth it my son is 2 years out but we're at a loss he still suffers from joint pain often to the point he has problems walking
So a little over one month post KD and the additional joy that this disease is bringing beyond a cranky child, fear of fever and anxiety about her relapsing is now the medical bills rolling in. 10 days in the hospital and we are hitting over $70,000! Thank goodness for insurance but even with that the deductible and 10 percent after that is hitting us hard. I of course would pay any amount for my sweet girl to be healthy but man...KD just keeps giving.
My LO was diagnosed with the flu today. He's on aspirin therapy. Unfortunately, I googled Reye's syndrome and now have made myself super anxious over it. Anyone else's child have the flu while on aspirin therapy?
We are going to my son's 6 month follow up with his allergist/immunologist for his medication management of his asthma & check his lung function. He is back on inhaled corticosteroids, seems to be protecting his lungs, but he's had his wheeze/cough back last few days. Stuffy dry nose. Using saline, humidifier, steam. I have taken him off Zyrtec the last week bc he's been so dry. Also on RX Zantac for his GERD. What can I ask him about post KD immune problems! Is there a test I need to ask for? Anyone ever used or heard of Cromolyn?? Anyone with any experience with post asthma,allergies & sees allergist/immunologist can give me feedback. He can't even tolerate swimming pools. We are switching ours to salt. 3y post KD! 7years old. Any feedback appreciated
Mom's I am so concerned I've even brought it to his doctors attention and it was treated as no big deal my son is 4 months he is about 2 weeks post kd. He never had hand issues until about a week ago he went 2 rounds of ivig and 2 rounds of steroids before he was cleared up. But now he does not want to open his hands he screams when I try to open them. Tonight I had to clip his nails and he screamed bloody murder, also the inside of his hands stink he just had a bath yesterday but I'm assuming cause he keeps a closed fist at all time. Can someone please help idk if this is normal or what:(
So here is an odd something. I fought and fought over the last month to get my daughter a diagnosis. 3 wrong before someone got it right. Today, one of my very best friends, who lives in the next town (haven't seen her in weeks, though) took her daughter to the ped. for a fever and swollen feet and hands. Guess what her NP did after one look? Referred her for KD. Is that a weird coincidence that in 3 weeks, someone very close to me would also get it? Makes me think the Chinese tradewinds theory might hold some water.
Wondering how long it will take for the irritability to go away??