Tristan's Story

[Wendy Flinn]

I just found this site on the net and joined recently and thought I would introduce my son. His name is Tristan and last August when he was 18 months i took him to the dr. for his 18 month wellness checkup. He recieved his vaccines that day which included his mmr and varivax. He wasn't sick that day and he'd been perfectly healthy before. But later that day he started having diarrhea which worsened as the week went on. I took him back to the dr where we were told he just had a virus. He started vomiting and we ended up in the ER. They started fluids for dehydration. Then he had a siezure and stopped breathing. When we got his labs back they were bad. WBC was 31,000 BUN was in the 80's and Creat was high I can't remember specifics anymore. They thought menigitis at first and then settled on HUS. We went to the PICU from there and it's a long story but Tristan ended up intubated in a coma airlifted to Iowa City and Dr. Brophy's team. All I have to say is Thank God I live in Iowa or I probably wounldn't have my son with me today. The first hospital we were at thought Tristan had a watershed stroke. But then we found out in Iowa city he had demylenation in his white matter. He recieved crrt, steroids,plasmapheresis, IVIG, and then pd and hd throughout his stay. They called him neurologically devastated. He was blind too. Pretty much what happens to the kidney's with HUS happened to his eyes too. His biopsy showed thrombo micro angiopathy. So we thought he would stay in ESRD. After a very bad month in the PICU Tristan was slowly improving. We went to the floor and everyday Tristan was getting better. His muscles were loosening up and he was doing more purposeful movements. He even started smiling. He had a j-tube placed for feeds because of neurological retching. After that surgery he started peeing. He got a little fluid overload because of the surgery and his hd cath was clotted so they couldn't use heparin on him for risk of bleeding. He got really puffy even had edema in his lower back. But it gave his kidney a jump start. So after 7 weeks of dialysis we haven't had any since. Tristan went to Childserve in Des moines after discharge and had intensive therapy for 6 weeks and then I finally got to bring him home. He still has out patient therapy 4 times a week for neurological rehab but he runs now and plays like a normal 2 year old. He's still a little wobbly and has low tone in his legs but he's really strong and still improving fast. He has damage to his retinas but can see enough to get around. He has to wear these goofy toddler safety glasses and we patch his better eye for a couple hours everday to try and fix the amblyopia he has in his right. As for his kidney's he only has stage 2 CKD and we control labs with meds and diet. Norvasc for bp, iron, sodium bicarb, multivitamin. Tristan has a G-tube now. I had it changed back in dec when he had his pd catheter taken out. He still doesn't want to swallow his food. He likes to drink and lick and chew foods. But he won't swallow it. It's frusturating but we are working on it. He has a great therapist that's come a long way with him so I see hope there. No relapses so far. All of Tristan's genetic testing came back normal and they did a immune system workup on him and that was ok too. They checked him for APLS too and that was negative. So he's been stuck in the other category. Probably will never know. I just seriously hope this never comes back. We all have that same fear on here I can see. It's nice to have this site so everyone can support each other. Thanks for reading this.

[Melissa Hearn]

Wht a BEAUTIFUL smile Tristan has! Thank you so much for sharing your story. Your son will be in our prayers, I am so glad you were able to get such great medical support from Dr. Brophy. I really enjoyed meeting him at the conference last October as well. He had a lot of really good information to share.

[Theresa Pereira]

Let me start by saying your son is gorgeous. You sound like a very strong mom and he is very lucky to have you. Please keep in mind between now and the first time my daughter had her first episode, Dr's know so much more in a short period of time (3 years) and they keep going and going. Olivia is in Canada and her blood is being researched in Europe. Keep the faith. keep praying and thing will fall into place.

[Wendy Flinn]

Hypnosis is a great idea. That might just be what he needs. I'll have to ask around for someone who knows how to do it. We were in the hospital during the time of the conference last october. I didn't remember what day it was and I missed it! We'll go to the next one though. Thanks for the advice :)

[Linda Burke]

Hi Wendy,
Your family has been through so much with Tristan's health crises, it's amazing to hear of the marked inmprovements in so many areas! I had the pleasure of meeting Dr. Brophy, and several other wonderful Iowa aHUS specialists at our Oct. 17th aHUS conference at the U of Iowa, thank goodness Tristan received that expert care that has allowed him to progress in such a miraculous way.
When Hunter was an infant, he was diagnosed with aHUS at 10 months old and we too had a hard time transitioning from tube feeds to normal oral feeding. We had great sucess at age 3 with hypnotherapy - it really worked for Hunter with only 6 or so sessions with a pediatrican who did this as a sideline to help her patients. I figured that hypnotherapy was non-invasive, didn't hurt, and worth a try....thankfully it did work and Hunter was able to stop all tube feeds. Perhaps it's worth considering for Tristan.
Thanks for adding your inspirational story about Tristan's journey - we look forward to more positive news as he progresses with therapy, and experiences joy with everyday successes. All the best, Linda