Bobby's atypical case at 3 months old

Personal stories of individuals and families affected by Kawasaki disease
Lisar
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Re: Bobby's atypical case at 3 months old

Post by Lisar » Fri Jul 24, 2009 10:11 am

Al-n-Charl wrote:Hi All:

I can't believe a year has already passed!! We'll be seeing Dr. Newburger for an echo next Monday. We're hoping to get news of continued regression with no calcifications or stenosis!

Please keep us in your prayers!
Hugs,
Charlene

I hope everything turns out okay with the eco. And the picture is just adorable.

Momcat
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Re: Bobby's atypical case at 3 months old

Post by Momcat » Sun Jul 26, 2009 11:27 am

Char,
I know how anxious this time can be......hope the echo is fine. How often does Bobby get angios? You know me, I am a bit leery of echoes not telling everything. I am just glad his aneurysms resolved so much....how much aspirin does he take...just an 81 mg a day?
Give us the good news soon!
Sandy

Al-n-Charl
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Re: Bobby's atypical case at 3 months old

Post by Al-n-Charl » Wed Jul 29, 2009 3:41 pm

Hi Everyone:

Good news. This was Bobby's 1st echo without sedation. I started preparing Bobby for the appointment a week in advance. I had him choose a DVD and VHS to bring with us and then let him choose which one he wanted to watch before they started the echo. After giving him a chance to see the wands she would be using for the echo, Bobby just laid back and let the tech do her thing. Gotta admit, we were a little nervous since Bobby doesn't tolerate new exteriences well, but he was great!!

The aneurysms, that can be seen on the echo's, seem to be within "high normal" limits. Dr. Newburger did say that the echo is limited to the front portion of the heart, but since his pictures from the cardio catherization looked so good (1 1/2 years ago) she is not worried for stenosis...at least this early post-KD. She also said that even though she would like the information gained through a stress test, he is not at "high risk" and it can wait until he is around 7 years old and can run on a tread mill.

Because our family history of heart disease is so extensive, they do want a fasting lipid pannel from Bobby....but it's ok for us to wait until after his pediatrician checkup so we don't have to stick him over and over. (As a side note: Annette Baker, NP noted that Bobby runs on his tip toes and wants us to check with our pediatrician to see if he needs another referral for PT....here we go again!)

For now we need to continue with his 1/2 asprin daily and we go back for another echo in 1 year.

Thanks for your continued prayers!
Charlene

Momcat
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Re: Bobby's atypical case at 3 months old

Post by Momcat » Wed Jul 29, 2009 9:36 pm

YAY CHARLENE!!
Wow--from aneurysms and Lovenox FOREVER to this!! I am so glad Bobby did the echo all by himself!! He is becoming a big boy! These kids and their weird things.....Paige's hips are popping in and out all the time.....has something to do with the scoliosis I think--she is pigeon toed.... Let us know what you find out about the tippy-toes!
Dark chocolate hugs,
Sandy

mmiritello
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Re: Bobby's atypical case at 3 months old

Post by mmiritello » Thu Jul 30, 2009 1:48 pm

Hey Char, great new about Bobby. Hope everything else is good with you guys. Things here have been good. We have be out of the doctor's office for over a month now and it's a little wierd but hopefully this trend will continue with Addyson. Andrew is starting kindergarten soon, Anthony will be in 3rd grade and Addyson will be in preschool so I am guessing that with everyone in school, chances are slim that Addyson will stay healthy but we can hope.
Andrew was a toe walker and still is occasionally, he went to OT and she did some PT with him but we got him orthotics to put in his shoes and it has done the trick. Does he ever complain about his legs hurting? Andrew would get bad cramps in his legs and the doctor told me that it was growing pains but now I realiza that it was becuase he was always walking on his toes that was causing the problems. No more leg cramps!!! Keep me posted. Love to hear good news like that. Take care
Michele

Al-n-Charl
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Re: Bobby's atypical case at 3 months old

Post by Al-n-Charl » Tue Aug 04, 2009 8:37 pm

Hi Michele:

Great to hear from you!!! Soooo happy that Addyson has been healthy for more than a few days!! Let me know how it goes....I'm currently looking for part time work and probably will need to put Bobby into a center. Gotta admit I'm a little nervous to see how his immune system takes it.

Bobby hasn't complained about any pain in his legs or feet. He had quite a bit of PT (a years worth;) when he was referred at 12 months old, for not pulling up or walking. When Bobby did start pulling up and walking, he did quite a bit of tip toe walking and I could swear that Jetta checked his calves and said they were ok....but maybe that was then and this is now? Anyhow, we'll followup on it with the pediatrician when we see her next month.

Gotta go!
Charlene

liquidambar
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Re: Bobby's atypical case at 3 months old

Post by liquidambar » Wed Sep 02, 2009 7:26 pm

How did the toe walking turn out? Is he now flat footed? Does he have hypotonic (loose) muscle tone?

Al-n-Charl
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Re: Bobby's atypical case at 3 months old

Post by Al-n-Charl » Mon Sep 28, 2009 12:06 pm

Hi:

Thanks for thinking of us! Bobby had his 3 yr physical on Friday. I mentioned the tip-toe walking and the fact that Bobby complains that his toes hurt (probably because he is hyperextending them) as well as falling alot (because he only has the tips to balance himself). Our pediatrician checked his muscle tone...the legs feel ok, but she is concerned that he is building callouses under his big toe and his ankles feel tight. She has given us a referal to the local physical therapy facility...we are just waiting for a call to schedule his assessment. She is not refering us to the outreach program...not complaining, just surprised since that was the agency we were refered to when Bobby had the gross motor delay.

Poor Bobby got stuck 3 times today while trying to get the blood for all the tests....we're checking for allergies to shellfish (since I have noticed some alarming symptoms the last time he ate shrimp) egg, tree nuts and peanuts; a fasting Cholesterol pannel; and lead test. Unfortunately Bobby has veins like mine, which roll and disappear on a whim, what a thing to inherit ! :( Luckily the 2nd stick was successful, but the tech wasn't able to get enough for all the tests and still had to stick his finger to finish. Bobby was a trooper and kept telling the tech "it's ok" when she apologised for having to stick him the 2nd then the 3rd time! He make out pretty good though.. he walked out of there with a package of sidewalk chaulk and 2 pineapple scented sponge bob square pants stickers! (He was thrilled!! :lol:

We should get the results in about 2 weeks. I'll post the results as soon as I get them!

Hugs,
Charlene

liquidambar
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Re: Bobby's atypical case at 3 months old

Post by liquidambar » Tue Sep 29, 2009 8:24 am

Please do! I would like to hear back. He deserves the chaulk, for being so cute and saying it's okay!

mmiritello
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Re: Bobby's atypical case at 3 months old

Post by mmiritello » Tue Sep 29, 2009 10:52 am

Hi Charlene, Sounds like you have been busy. Bobby is amazing, Addyson would have been running out the door after the first stick. Tell him we are all proud of him. It's so carzy to think how many time these kids have been stuck and have gone to different doctors at such a young age. I think about Addyson and then think about Paige and Bobby and everyone else who's kids have things beyond my imagination. I give you all a lot of credit. Tell me how the allergy tests come back. Addyson and Anthony have the peanut allergy but Addyson also has egg and milk. Oh about the toe walking, my Andrew did and still does occasionally do it. His OT had us get him orthotics to put in his shoes and it seemed to work along with PT. All I know is that before he had Pt/OT he would get really bad cramps in his legs and we couldn't figure it out but once we realized that it was because he was toe walking and started working on it, he's been cramp free. Who knew =) Hope everything else is going well with you guys. Keep us up tp date.
Michele

Al-n-Charl
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Re: Bobby's atypical case at 3 months old

Post by Al-n-Charl » Fri Nov 06, 2009 9:25 am

Hi:

Sorry it's been a while. The blood work came back normal (cholesterol and lead..sorry didn't get numbers because I was running errands when the Dr's office called me with results.) All the allergy testing came back negative..they did warn me that there is a possibility of a false negative.

Bobby has gone for his pt assessment and they have given me exercises and stretches to do at home between appointments. They told me that even after the stretching his left ankle measures neutral while his right foot shows inprovement by 3 degrees. They are willing to try for another 2 weeks before making the decision weither he needs orthotics...so, we'll see.

Thanks for keeping us in your thoughts!
Charlene

Colsonsmom
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Re: Bobby's atypical case at 3 months old

Post by Colsonsmom » Mon Sep 27, 2010 9:59 am

How ironic...my son was diagnosed with KD at 3 months old also. After several trips to the doctor's office and phone conversations, our pediatrician said it was just a virus and to ride it out over the weekend. Well, by that afternoon I made my own decision to seek further care from the hospital after seeing that my son was so lethargic and couldn't keep anything down. We went to the ER and after being examined by the physician, he decided he needed to rule out some very serious illnesses, so began the massive amounts of blood work and a spinal tap. All of the BIG stuff was ruled out, and that is when the pediatric intensivist physician came down and made the decision to keep our son in the hospital and try figuring out what was wrong with him. By Monday morning, 2am to be exact, she came in with the diagnosis. Everything had been ruled out, so it was then that Kawasaki Disease had been ruled IN! I have never been so thankful to get a diagnosis, but once I began to learn everything about KD I realized that it was just as scary....I found out that the next morning Colson would be having an ECHO of his heart and coronary arteries...and that was the beginning of our long journey. I had no idea that Kawasaki Disease had anything to do with the heart or coronary arteries. Well, that ECHO showed signs of dilation to his arteries....and by the time our stay was over in THAT PARTICULAR hospital trip, the dilation had developed into 8 coronary aneurysms. Now, jumping forward 2 years later my son still has 4 coronary artery aneurysms. We have all 4 of the aneurysms in the right coronary, 3 of them are now below 5mm and the one that was regressing has now started to "grow" again. I had no idea that they could "grow" again....I am disheartened and upset about it, but there isn't anything a surgeon can do at this point. In our 2 years with Kawasaki Disease, we have been in and out of the hospital tons of times, traveled to larger hospitals due to blood clots and scares of heart attacks, and continue to watch for heart attack "symptoms". I am thankful that my son is able to talk now, because he can say that he is "hurt". I have looked forward to this day because he could never explain how his chest hurt when he had blood clots that were causing chest pains. He has been and still is a trooper through all of this KD journey. We have been on a beta blocker to protect his heart if he were to have a heart attack, half of a baby aspirin, and coumadin. He has been on these medications since he was 3 months old and now we are 2 1/2 years old. There is so much more to our story, so if you ever want to read more about Colson feel free to read his story at www.caringbridge.org/visit/colsonross. If you have any questions, please feel free to contact me at jerryvicki@bellsouth.net.

Momcat
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Re: Bobby's atypical case at 3 months old

Post by Momcat » Fri Oct 01, 2010 1:17 pm

I do believe Colson is a miracle child!

Al-n-Charl
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Re: Bobby's atypical case at 3 months old

Post by Al-n-Charl » Wed Feb 23, 2011 4:48 pm

Hi! I know it has been a while since I've posted, but another KD family has found us and re-telling Bobby's story brought me back to the KD forum to check on all of you and update everyone on what's been going on.

Where to begin! We saw Dr. Newburger, August 2010, for Bobby's annual echo and everything looks good. He is still at the "normal" - 4mm range and is only on 1/2 asprin a day! Woo Hoo! ;)

Bobby is in a Pre-K class, 3 times a week, and LOVES IT! He comes home everyday with a new story about his friends; what they played with, or what activity/craft they did!

Now for Bobby's tip toeing through the tulips! After fighting with our Health Insurance carrier for close to a year (they didn't want us to bring Bobby to our local Pediatric Orthapedic because they are part of a clinic...Because of this hospital component, they wanted to classify it as "outpatient procedure" and charge us a $500 copay for an office visit) we gave up and scheduled an appointment with a Pediatric Orthapedic located 1 1/2 hours away from our home. He was concerned with the tightness in Bobby's ham strings, achiles heels and ankles. Bobby is so tight that he is concerned that he might have to have a "lenghtening" operation when he gets older. He watched Bobby's gate and is concerned that he will ruin his arch if not corrected soon. (his foot does not sit flat on the floor and is slightly twisted out) Tip toe walking has 2 causes. 1: Mechanical - some muscles overworking vs some underworking or 2: a neurological abnormality. Before we can correct his walk, we need to determine WHY he is walking on tip toe. Due to Bobby's KD history, the Ped Orth wants us to have a neurological assessment completed. If they don't find anything, then a gate analysis will be completed to determine what muscles are overworking and which are underworking and we can come up with a PT plan.

Gotta run but We'll keep ya posted on what happens next. :)

Al-n-Charl
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Re: Bobby's atypical case at 3 months old

Post by Al-n-Charl » Mon Jan 27, 2014 5:51 pm

Hi All:
It was been quite a while since I last posted. Bobby is now in 2nd grade and I can't believe how such a little man he is! :) We followed up with all the doctors regarding his walking on tip toe. After the neurological assessment (normal), MRI to check if he has a tethered spinal cord (negative), countless physical therapy appointments to stretch his muscles and 1 full year of Public School PT assistance; Bobby STILL walks on his tip toes. :( We are currently taking a break from that round of Doctors because no one can seem to suggest a plan of action.

We saw Dr. Newburger in December 2013, for our annual echo. They completed a standard echo to verify measurements and get a baseline before the stress echo. He had a new technician who used a different angle to view the left side of his heart. They have viewed these arteries many times in the past without seeing anything unusual. This time, unsure if it's because of the new angle or a new development, there is an "artifact" and they are not sure of what it is. It could be an anomaly, it could be part of the remodeling that just appears different due to the angle or it could be the beginnings of calcification. There is no obstruction and Bobby has not had any incidents of chest pain or breathlessness so she is not overly concerned. She did say that Bobby's stress echo (completed after they found the "artifact") looked good and she was impressed with how much of the test he was able to complete. We have a repeat echo scheduled for June 2014 so stay tuned and we'll keep you posted :)

He remains on 1 (81mg) aspirin a day, indefinitely. What sports are your children participating in? Bobby does not have any restrictions so he played t-ball last summer and has played 2 years of soccer. I was surprised when Dr. Newburger mentioned that she was not thrilled with soccer because of "heading" the ball and suggested that we try to steer Bobby to more individual sports like tennis, golf, etc.. Just wondering what your take on it is :)

Thanks for listening!
Charlene

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