Chicago is home to a toxoplasmosis treatment center and some amazing doctors who have studied this illness for years and years. I reached out to the facility a few times for an appointment but I haven’t heard anything. I asked our infectious disease doctor about this at our second appointment (About 4 weeks ago) and she assured me that she could reach them if she felt she needed to and that she knows both of the physicians there well enough to email them any questions we may have. At that time I felt comfortable with that.
A few weeks ago we saw the eye surgeon, Dr. Chang, he spoke about another little boy with CT who had just had great results from the same surgery Demi will have in October. This family is from the Houston area. I wanted so badly to ask for their information right then, but knew I couldn’t because of HIPPA laws. I had a feeling I would find them somehow! I just knew it!
Well what do you know?!
Yesterday I randomly connected with this family!! Their son is doing very very well right now. He is almost done with his 1 yr of mediations and is really so impressive. He and Demi’s symptoms and findings are very similar. She encouraged me to get a hold of the doctor in Chicago. She shared with me that doctors email. So I went to work!
I emailed this physician with everything I know until this point and the plan moving forward. She responded and blew my mind with what she told me. One thing is that Demi’s lab values (neutrophils) dropping is likely related to her medications being mixed for longer than 1 week periods. Had I not reached or to her there is no telling how many times we would have stopped and started medications, been on house arrest and most importantly had Demi at risk of getting very very sick by something as simple as the common cold if she had been exposed. Her meds were being mixed in 2 week increments and we were moving towards one month supplies for some of the meds.
This doctor also has some other suggestions for us and plans to speak with our infectious control doctor today. This is a huge source of reassurance for me. In the past few days I have become more increasingly concerned about Demi’s plan of treatment simply because she is not on the medicine she needs for at least another 2-3 weeks. That’s just not ok! I can’t believe how I have been so in tune to when she needs more through all of this. I haven’t stopped at any road block. I keep fighting and clawing my way for more for Demi. I will continue to do that. I pray often about this too and I know exactly who is responsible for each breakthrough! It’s God!
Obviously I have some guilt about not trying to reach this doctor this aggressively sooner but I know better than to sit and let that take over me. I’m grateful to have the knowledge now. Demi is 4 months old and I we should have the perfect plan for her as soon as her lab values are ready for medication again! I’m always trying to look forward as to what’s next and how will we do better moving forward.
I’m excited for my new connection with this family in Houston. They have already given me so much hope by just being willing to share their sons story! I feel so blessed to have connected with them! I’m excited for the phone call today with the doctor from Chicago to help get Demi’s treatment plan on track!
Continued prayers for Demi’s neutrophil count to increase. They are so incredibly low. It’s pretty concerning! Prayers for our new little friend – I don’t have permission to release his name yet, but hopefully soon!! Prayers for this phone call today!