Frisk Family

Updates!

Jaxen: Jaxen has an apt with his pulmonologist tomorrow Gary and him and Tieler will go see Dr, P and Boston and mom will be checking in for Bostons EEG. We are also hoping to hear back from GI and the Pediatrician about Jaxen's electrolyte imbalance and kidney function which we are concerned about.. His test results have been confusing of course!

Tieler:
Tieler just had more testing for MCAD/MCAS whichever is accurate.. she has elevated Eosinophils but that isn't too abnormal for her and her IgE still high.. Her tryptase was within limits but she does have mast cells in the biopsies from her last scope as well but she is on singulair and zyrtec and Dulera daily, so I know some of them are mast cell stabilizers. So we should hear back from Immunology soon with a plan and Tieler's last endoscopy was not good as she was at an elevated number of Eos. so we need to follow up scope soon to see how effective removing banana is. And last but not least! Her Gtube has healed perfectly since her surgery in January. No signs of infection.

Boston: Boston has a 24 hr EEG on Monday in the RTU. He is back on antibiotics, He stayed off for four weeks but had sinus and asthma cough for most of that time. He is doing much better. He still isn't growing. But his GI and Dietitian aren't worried. His toenails have been cracking and bleeding from beaus lines ridging. I hope they are right. :)

We see Nueromuscular/ Genetics on the 17th.. So we should have an update then.

Also may have an opportunity to work with a specialist at Mayo clinic but will likely have to raise funds to travel there. But we have the Brainwave event coming up that we will post about that may help!