Health update: More doc appts

Where to start….in addition to Maddyn’s 18 month appt, we had a visit with the pediatric allergist and also the pediatric neurologist. Our appt from November was pulled up!

First, the allergist. We had the basic food and outdoor allergy items tested for. Overall, Maddyn didn’t test positive for any allergies. We were thrilled at the results. The allergist seems to think her severe eczema is something she can grow out of. We are now using the Mustela Stelatopia line- and can I say, it is AMAZING. Pricey, but worth every penny. We’ve tried everything from Aveeno, California Baby, Cetaphil, etc to bathe, on top of her Aquaphor 3 times a day and Cortizone ointment, and nothing has helped. This is by far the only thing that has made a huge impact. The Milky Bath Oil seems to be the kicker, but we are also using the Cream Cleanser. If your little one has bad eczema, I’d highly recommend these.

So we left the allergist relieved we could cross something off the list, and hopeful that it means that this massive drinking is a fluke and that her purple/blue hands/feet/mouth episodes are due to an immature circulatory system like the cardiologist suggested.

We went to our 18 month appt, and filled the doctor in. She still wanted us to see the pediatric neurologist. So we kept that appt. It was pulled up from November to Monday, June 29th.

On Monday, we went and met with Dr I. He was very thorough again, and listened to Maddyn’s history, symptoms and looked through her test results. He was surprised that we hadn’t come in sooner, as thirst and nerve episodes are both usually neurological symptoms. He said that often the autonomic nervous system functions can go forgotten. He does think that both the drinking an the purple/blue episodes are related.

He was concerned about Maddyn’s hypothalamus. He said together, the purple/blue hands/feet/lips and the excessive drinking could most likely be a symptom of hypothalamus misfunction- which could cause Maddyn other problems later in life. He wanted to do a series of follow-up tests. First an MRI, second a tilt table test, third an EMG, and lastly, if those tests do not provide enough insight, he strongly suggested we consider more invasive procedures.

Of course, he went into detail, and I'm just summarizing, but I’m still digesting it all. We are making an appt with our pediatrician to also discuss this plan of action with her. Dave and I are a little torn right now, as Maddyn’s symptoms seem to have gotten much better- the frequency of the episodes is becoming less and we are really working to cut down her fluids and are at about 70 oz on avg daily- sometimes even less than the 64- we're almost there!. With this progress, it makes us both hesitate to do these invasive tests and put our poor baby through more hell, only to find out it might be ‘nothing or ok’- which is what we hope. That said, we’d both be devastated if we didn’t do these tests and she has problems later in life b/c of something we don’t treat now. B/c she is so little, even the basic MRI will require putting her to sleep and having the MRI done.

We are looking into getting a second opinion from another Pediatric Neurologist as well. I’m sure that will take another few weeks/months, but at this point, I think it’s necessary before we move forward.

We will continue to keep everyone posted! As you can imagine, we have a lot of discussing and decisions ahead.